Question:

Tourette Syndrome seems to be an amplifier of chronic conditions.  It seems like the anxiety that I suffer is amplified when I have to deal with other chronic conditions.  I have had a lifetime battle with inflamation of my bronchial tubes and my sinuses.  Many times, the inflamations turned into infections.  These inflamations/infections have had a great affect of my performance as a human being.  When I can’t properly preform, my anxieties peak and my TS waxes.  Three years ago, we had a very serious forrest fire in Colorado.  It was known as the Hayman Fire.  The fire was south of Denver.  The prevailing winds moved the smoke north into the Denver area.  I suffered from some severe respiratory inflammation and my Tourette got worse.  I have a cortisone nasal spray that helps with the sinuses and a cortisone inhalor that helps with the bronchial tubes.  I have to fix the problem before it turns into an infection where I really start to have some serious problems. Fred in denver

Response:

"Fenisz" <fen…@aol.com

wrote in message

news:20050103122352.06555.00001642@mb-m22.aol.com… – Hide quoted text — Show quoted text -

Tourette Syndrome seems to be an amplifier of chronic conditions.

It seems

like the anxiety that I suffer is amplified when I have to deal with

other

chronic conditions.  I have had a lifetime battle with inflamation

of my

bronchial tubes and my sinuses.  Many times, the inflamations turned

into

infections.  These inflamations/infections have had a great affect

of my

performance as a human being.  When I can’t properly preform, my

anxieties peak

and my TS waxes.  Three years ago, we had a very serious forrest

fire in

Colorado.  It was known as the Hayman Fire.  The fire was south of

Denver.  The

prevailing winds moved the smoke north into the Denver area.  I

suffered from

some severe respiratory inflammation and my Tourette got worse.  I

have a

cortisone nasal spray that helps with the sinuses and a cortisone

inhalor that

helps with the bronchial tubes.  I have to fix the problem before it

turns into

an infection where I really start to have some serious problems. Fred in denver

I agree with you Fred, each condition can affect/influence the other. Is there any chance all that cortisone is increasing your anxiety? Steroids can definitely do that. Maybe Sandy L. has some suggestions? Jo

Response:

Hey Fred,,,,,what you claim is VERY true……..on Dec 18th I git hit by another truck……..his died mine  survived and way I rented another 4×4 truck and te previous renter chained smoked…………NO one told me so the bottom line is this rental made my asthma kick up, they had to change me to Advaire and stop my Flovent and Serevent. My TS and SIB went off the richter scale! I had to start using my Albuteral Nebulizer which kicked up my ADHD……………………so now I can not take 2 steps without chouging hard and choking  and then having a Tussive Syncope(mini seisure)………….. It is now to the point water scares me cuz I choke! "Fenisz" <fen…@aol.com

wrote in message

news:20050103122352.06555.00001642@mb-m22.aol.com… – Hide quoted text — Show quoted text -

Tourette Syndrome seems to be an amplifier of chronic conditions.  It seems like the anxiety that I suffer is amplified when I have to deal with other chronic conditions.  I have had a lifetime battle with inflamation of my bronchial tubes and my sinuses.  Many times, the inflamations turned into infections.  These inflamations/infections have had a great affect of my performance as a human being.  When I can’t properly preform, my anxieties peak and my TS waxes.  Three years ago, we had a very serious forrest fire in Colorado.  It was known as the Hayman Fire.  The fire was south of Denver. The prevailing winds moved the smoke north into the Denver area.  I suffered from some severe respiratory inflammation and my Tourette got worse.  I have a cortisone nasal spray that helps with the sinuses and a cortisone inhalor that helps with the bronchial tubes.  I have to fix the problem before it turns into an infection where I really start to have some serious problems. Fred in denver

Response:

"What about Bob" <ka1…@charter.net

wrote in message

news:PbkCd.53333$XH3.733@fe06.lga… his died mine  survived Glad your truck survived.  :)

Response:

Thanks but I may not survive these syncopes "Jodi" <hellofromj…@nospamcharter.net

wrote in message

news:jClCd.53364$%L4.23549@fe06.lga… – Hide quoted text — Show quoted text -> "What about Bob" <ka1…@charter.net

wrote in message

> news:PbkCd.53333$XH3.733@fe06.lga… > his died mine  survived > Glad your truck survived.  :)

Response:

With ALL the BS with my health since Dec 20th……..things are strating to level off 1) I won my fight for a new CPAP( my 4th since 1992) after 2 failed sleep studies, my good CPAP died of old age and is NOT repairable …so they got medicare to buy a new good model that may last a while this time 2) my SIB has been so powerful since Dec 20th that my left arm is in such trama it is all knotted up. 3) Enterprise who I rented a 4×4 truck from , took one wiff indside the truck and belived me an wrote off the dailiy overage  I owed. PLUS they gave me a free one time rental ! 4) I am breathing on my own today for the very first time  since Dec 20th! WHAT a CONCEPT!!:) "Fenisz" <fen…@aol.com

wrote in message

news:20050103122352.06555.00001642@mb-m22.aol.com… – Hide quoted text — Show quoted text -

Tourette Syndrome seems to be an amplifier of chronic conditions.  It seems like the anxiety that I suffer is amplified when I have to deal with other chronic conditions.  I have had a lifetime battle with inflamation of my bronchial tubes and my sinuses.  Many times, the inflamations turned into infections.  These inflamations/infections have had a great affect of my performance as a human being.  When I can’t properly preform, my anxieties peak and my TS waxes.  Three years ago, we had a very serious forrest fire in Colorado.  It was known as the Hayman Fire.  The fire was south of Denver. The prevailing winds moved the smoke north into the Denver area.  I suffered from some severe respiratory inflammation and my Tourette got worse.  I have a cortisone nasal spray that helps with the sinuses and a cortisone inhalor that helps with the bronchial tubes.  I have to fix the problem before it turns into an infection where I really start to have some serious problems. Fred in denver

Response:

I posted this on January 3 and just now on the 15th see it posted on AST.  Does anybody know why this delay in having my message posted? Fred

Response:

- Hide quoted text — Show quoted text -

"Fenisz" <fen…@aol.com wrote in message news:20050103122352.06555.00001642@mb-m22.aol.com… Tourette Syndrome seems to be an amplifier of chronic conditions. It seems like the anxiety that I suffer is amplified when I have to deal with other chronic conditions.  I have had a lifetime battle with inflamation of my bronchial tubes and my sinuses.  Many times, the inflamations turned into infections.  These inflamations/infections have had a great affect of my performance as a human being.  When I can’t properly preform, my anxieties peak and my TS waxes.  Three years ago, we had a very serious forrest fire in Colorado.  It was known as the Hayman Fire.  The fire was south of Denver.  The prevailing winds moved the smoke north into the Denver area.  I suffered from some severe respiratory inflammation and my Tourette got worse.  I have a cortisone nasal spray that helps with the sinuses and a cortisone inhalor that helps with the bronchial tubes.  I have to fix the problem before it turns into an infection where I really start to have some serious problems. Fred in denver I agree with you Fred, each condition can affect/influence the other. Is there any chance all that cortisone is increasing your anxiety? Steroids can definitely do that. Maybe Sandy L. has some suggestions? Jo

I can’t say that this in causing an increase in anxiety.  The anxiety is created and increased by my inability to preform in a normal way.  At its worst, I demolished an auto in 1970.  I lost consciousness and rolled a car. 15 years later, I had an episode where I could no longer drive because I was seeing double.  I can now prevent these episodes with a steroid spray and a vasoconstrictor spray.  It is scary stuff when the drowsy sensation happens. Fred

Response:

  I think I saw it weeks ago? "Fenisz" <fen…@aol.com

wrote in message

news:20050115145325.23171.00000025@mb-m01.aol.com… – Hide quoted text — Show quoted text -

I posted this on January 3 and just now on the 15th see it posted on

AST.  Does

anybody know why this delay in having my message posted? Fred

Response:

‘Twas 15 Jan 2005 19:53:25 GMT when all alt.support.tourette stood in awe as fen…@aol.com (Fenisz) uttered:

I posted this on January 3 and just now on the 15th see it posted on AST.  Does anybody know why this delay in having my message posted? Fred

Everything showed up normally here.  Were you using any news server other than AOL?  AOL is usually reliable, and the software doesn’t have weird features for you to accidentally turn on and get this effect.. — RB |  

Question:

Paul, perhaps try some Paxil instead of prozac. If you are Bipolar, try some Lamictal <sp which has some anti-depressant properties. This is what helps my seasonal depression to some degree. (this has not been a good year for me, since my Mother passed away January 2003) Hugs, Ralph

It does? My pdoc gave me some. I’m taking Paxil currently. I feel like depression is often at the core of my problems. MorphGrrl

Response:

Yes, Lamictal is a mood stableizer with some anti-depressant properties. You will discover that my Bipolar Disorder takes the unenviable configuration of  98% depression, 1% "normal" (whatever that is?), and 1% mixed states, irritable depression, also known as "Rotten Ralph" <grin.

I tend to get euphoric at times and learned how bring it out in some way. But it still is much depression even if slightly now. I did better in sales today at work so that made me happier. Before I went to work I was a teeny bit ho hum in a sense, but looking at sites that made me laugh a little, helped my mood. Remembering it’s Valentine’s day makes my mood go in a roller coaster. Over all it’s not a bad dip because of the meds, but annoying in a sense. I’m the serial hugger, today. Hugs, Ralph

Ahhhhh, thanks Ralph! MorphGrrl

Response:

Every so often I go into deep drepressive cycles. I don’t want to be depressed. I live on Wellbutrin, Xanax, and Seroquel for sleeping at night. However, I can’t shake it. It’s like drowning or being smothered by a wet blanket. I manage to work, but I engage in self destructive behavior. Certain external things must trigger the depresssion, but it’s also got to be chemical.  The last time this stuff happened was the end of August, beginning of September. I ended up overdosing on xanax and spent a couple of days in the hospital detoxing. It was a very stressful and not very helpful experience. People on this board were very helpful in suggesting strongly help. Some of the earlier stressful things are moot.  The psychiatrist said he thought I had something like a post traumatic stress syndrome, whatever that exactly means. I’ve had life-long depression; and I finally found, I think a therapist who can deal with all of the abuse issues, if I can make it until some problems are solved, if they are solveable.  I’m one of those rare middle aged males who feel better when they’ve cut themselves.  There are some days when I feel that I can’t turn myself off and I get little sleep for days and then the deep depression returns.  The doctor insists I’m not bi-polar.     Should I suggest upping the Wellbutrin dosage from 300 mg to 400?   This stuff can be dangerous. I’ve already taken tricyclics, trazodone, prozac, effexor (horrible to quit), and even large amounts of lithium (which I"ve overdosed on twice, so maybe taking it isn’t a great idea)   as a  mood stabilizer plus some klonopin and other meds over the years. The Wellbutrin helped at first. However, after a year or so of it the effects seem to be less effective.     I guess what I really want to know is can one put Humpty Dumpty back together again?  Maybe some of us are really too damaged goods. I’m really depressed with unexplained cyring fits yet. I’m so tired of  this routine. I undermine good things and compliments just make me more depressed.     I only write to this board when I’m in a crisis, which doesn’t make me a very helpful person. However, if someone could offer some hope, I’d appreciate it.  People were exceptionally helpful last September.  Maybe just writing to this address makes me feel better. I even took up excercising. I seem to be doing everything right, but I still feel so depressed; and cutting myself with razor blades, even if I’m just nicking myself and drawing blood, can’t be a good omen. I do feel better though.  If  I sound confused I am; and, I’m tired. Can a person live indefinitely on Wellbutrin, Xanax, and Seroquel?  It doesn’t sound like a constructive way of life.     Thanks for any suggestions,        Paul

Response:

Question:

I have been taking effexor for two weeks after being on parnate for ten years and have been having terrible dreams and a very hard time coming out of a dream sleep in the morning- kind of like dreaming while awake- it’s really unpleasant.                                                                  Has anyone out there had  a similiar experience with effexor or any other anti- depressent? Thanks. Lara

Response:

I have been taking effexor for two weeks after being on parnate for ten years and have been having terrible dreams and a very hard time coming out of a dream sleep in the morning- kind of like dreaming while awake- it’s really unpleasant.                                Has anyone out there had  a similiar experience with effexor or any other anti- depressent? Thanks. Lara

Hi lara, I did take Effexor but did not experience any side effects. Here is some info on side effects. No mention of bad dreams. http://www.mentalhealth.com/drug/p30-e02.html#Head_6 Adverse Effects Commonly Observed Adverse Reactions: The most commonly observed adverse events associated with the use of venlafaxine (incidence of 5% or greater) and not seen at an equivalent incidence among placebo-treated patients (i.e., incidence for venlafaxine at least twice that for placebo), derived from the 1% incidence Table III, were asthenia, sweating, nausea, constipation, anorexia, vomiting, somnolence, dry mouth, dizziness nervousness, anxiety, tremor, blurred vision, and abnormal ejaculation/orgasm and impotence in men. Adverse Reactions Associated with Discontinuation of Treatment: Nineteen percent (537/2897) of venlafaxine-treated patients in Phase II and III depression studies discontinued treatment due to an adverse reaction (see Table II). The more common events (=1%) associated with discontinuation of treatment and considered to be drug-related (i.e., those events associated with dropout at a rate approximately twice or greater for venlafaxine compared to placebo) included Table II. Table II Adverse Reactions Associated with Discontinuation of Treatment                       Venlafaxine   Placebo CNS   Somnolence              3%           1%   Insomnia                3%           1%   Dizziness               3%           —   Nervousness             2%           —   Dry Mouth               2%           —   Anxiety                 2%           1% Gastrointestinal   Nausea                  6%           1% Urogenital   Abnormal Ejaculation*   3%           — Other   Headache                3%           1%   Asthenia                2%           —  Sweating                 2%           —  *  percentages based on the number of males.  – Less than 1% Incidence in Controlled Trials: Table III that follows enumerates adverse events that occurred at an incidence of 1% or more, and were more frequent than in the placebo group, among venlafaxine-treated patients who participated in 4- to 8-week placebo-controlled trials in which patients were administered doses in the range of 75 to 375 mg/day. Reported adverse events were classified using a standard COSTART-based Dictionary terminology. Dose Dependency of Adverse Events: A comparison of adverse event rates in a fixed-dose study comparing Effexor 75, 225, and 375 mg/day with placebo revealed a dose dependency for some of the more common adverse events associated with Effexor use, as shown in Table IV. The rule for including events was to enumerate those that occurred at an incidence of 5% or more for at least one of the venlafaxine groups and for which the incidence was at least twice the placebo incidence for at least one Effexor group. Tests for potential dose relationships for these events (Cochran-Armitage Test, with a criterion of exact 2-sided p-value <= 0.05) suggested a dose-dependency for several adverse events in this list, including chills, hypertension, anorexia, nausea, agitation, dizziness, somnolence, tremor, yawning, sweating, and abnormal ejaculation . – Table III Treatment-Emergent Adverse Experience Incidence in 4-to 8-Week Placebo-Controlled Clinical Trials (Percentage) –                                              Effexor   Placebo Body System          Preferred Term          (n=1033)  (n=609) – Body as a whole      Headache                    25        24                      Asthenia                    12         6                      Infection                    6         5                      Chills                       3        –                      Chest Pain                   2         1                      Trauma                       2         1 Cardiovascular       Vasodilatation               4         3                      Increased blood/pressure                        hypertension               2        –                      Tachycardia                  2        –                      Postural hypotension         1        – Dermatological       Sweating                    12         3                      Rash                         3         2                      Pruritus                     1        – Gastrointestinal     Nausea                      37        11                      Constipation                15         7                      Anorexia                    11         2                      Diarrhoea                    8         7                      Vomiting                     6         2                      Dyspepsia                    5         4                      Flatulence                   3         2 Metabolic            Weight loss                  1        – Nervous              Somnolence                  23         9                      Dry mouth                   22        11                      Dizziness                   19         7                      Insomnia                    18        10                      Nervousness                 13         6                      Anxiety                      6         3                      Tremor                       5         1                      Abnormal Dreams              4         3                      Hypertonia                   3         2                      Paraesthesia                 3         2                      Libido decreased             2        –                      Agitation                    2        –                      Confusion                    2         1                      Thinking abnormal            2         1                      Depersonalization            1        –                      Depression                   1        –                      Urinary retention            1        –                      Twitching                    1        – Respiration          Yawn                         3        – Special Senses       Blurred vision               6         2                      Taste perversion             2        –                      Tinnitus                     2        –                      Mydriasis                    2        – Urogenital           Abnormal ejaculation/                        orgasm                    12 [2]     2                      Impotence                    6 [2]     2                      Urinary frequency            3         2                      Urination impaired           2        –                      Orgasm disturbance           2 [3]    – [3]                      Menstrual disorder           1 [3]    – [3] – [1] Events reported by at least 1% of patients treated with Effexor are     included, and are rounded to the nearest %. Events for which the     Effexor incidence was equal to or less than placebo are not listed     in the table, but included the following: abdominal pain, pain, back     pain, flu syndrome, fever, palpitation, increased appetite, myalgia,     arthralgia, amnesia, hypaesthesia, rhinitis pharyngitis, sinusitis     cough increased urinary tract infection and dysmenorrhoea [3] —  Incidence less than 1% [2] Incidence based on number of male patients. [3] Incidence based on number of female patients. – Adaptation to Certain Adverse Events: Over a 6-week period, there was evidence of adaptation to some adverse events with continued therapy (e.g., dizziness and nausea), but less to other effects (e.g., abnormal ejaculation and dry mouth). Vital Sign Changes: Venlafaxine treatment (averaged over all dose groups) in clinical trials was associated with a mean increase in pulse rate of approximately 3 beats per minute, compared to no change for placebo. It was associated with mean increases in diastolic blood pressure ranging from 0.7 to 2.5 mm Hg averaged over all dose groups, compared to mean decreases ranging from O.9 to 3.8 mm Hg for placebo. However, there is a dose dependency for blood pressure increase (see Warnings). Laboratory Changes: Of the serum chemistry and hematology parameters monitored during clinical trials with venlafaxine, a statistically significant difference with placebo was seen only for serum cholesterol, i.e., patients treated with venlafaxine had mean increases from baseline of 3 mg/dL, a change of unknown clinical significance. Table IV Treatment-Emergent Adverse Experience Incidence    in a Dose Comparison Trial                                      Effexor (mg/day) Body System/              Placebo     75        225       375 Preferred Term            (n=92)    (n=89)    (n=89)    (n=88) Body as Whole   Abdominal pain            3.3%      3.4%      2.2%      8.0%   Asthenia                  3.3%     16.9%     14.6%    

… read more »

Response:

Hi Lara, Yes the odd dreaming is definatly a side effect of effexor. Some people also have a terrible time getting to sleep. I found that when I put the dose up, my anxiety got worse and I used to get very frustrated trying to get to sleep! I also had really WEIRD dreams. Aswell as yelling out in my sleep (I’ve always talked in my sleep though), I sometimes punched and kicked my poor fiance! This is my advice to you: 1. If you find yourself getting anxious and irritable, and your doctor tells you to up the dose, be VERY wary of doing that, because it is possible that the effexor could be causing the anxiety. 2. When/if you decide to come off the effexor, please do it VERY slowly. Some people go fine going off it over a week or two, but others have very serious yucky withdrawls. (I did it over 2 weeks and got really dizzy and nauseous and very, very moody!). To help you sleep better, perhaps try some simple relaxation techniques before bed (like stretching, then when you’re in bed concentrate on your breathing or something. I you’ll find that you’re dreams will be worse if you’re particularily stressed when you go to bed. Um… I hope this helped a little. Kara.

Response:

Question:

dear elaine, hello i have had spasmodic torticollis for 14 years. i cannot say that the head tremors are worse. it occurs more frequently  my muscles are stiff. and trying to hold my head still is a quest  for me in public. i have trouble with burning in the back of my neck. i use a heating pad for this. i’ve taken alot of meds. valium seems to be my poison. klonopin sent me packing with a seizure.music and walking help also. been to the ie; best in the state neuros. and docs. no botox.do’nt want it . the best  i have done is get educated on this mercyless ilness. i hope this helps.debbie

Response:

elaine, I have had st for a year and a half. It took three months to find it which is short compared to most. My neurologist was a movement disorder Dr. and found it in one hour.  He could not tell me if it would get worse. I then went to Baylor medical center in Houston. Dr. Jankovic at the movement disorder center gave me the same answer to st. He said he could not say if it would get worse or better as everyone is different. I have tremors of the head with mine and jerky all over sometimes and he said my tremors probably would get worse. Good luck and God bless.  I will  say prayers for you. Loretta

Response:

Dear Elaine, My consultant neurologist just treats people with Dystonia and Parkinson’s. He has treated me with botullinum toxin for spasmodic torticollis for 8 years. His experience of patients with adult onset dystonia is that 80% continue with much the same symptoms for the long term. 10% get worse in the sense that they either develop more severe local symptoms or other muscles become affected. 10% go into full remission.  By which he means an absence of symptoms for many years rather than the general ups and downs with which we are all familiar. A more likely long term problem in my experience is the increased pain that comes with the extra strain that is put on our musceloskeletal system as a side effect of coping with the neck twisting.  In addition I know that some develop a resistance to the particular type of botullinum toxin with which they are being injected. I would echo the advice of others who have replied that you find a neurologist who specialises in dystonia. My experience of non-specialist neurologists is not great. If you were in the UK I could give you some names to look for. Regards, David Well at last after 6 years of asking, the GP I saw today is referring me to a neurologist, she wasn’t too familiar with Dystonia at all, but she listened to me and didn’t fob me off with "anxiety and tension". She also asked for web addresses for her own personal interest. So I’ll just need to wait see what happens next. Thanks again to all of you who replied to my first post. Just one more question, from experience what are the chances of ST worsening after between 6 – 9 years? I’ve not been as bad the past 4? Regards Elaine

David Everett

Response:

HI;  In my own estimate it depends on you and what you do. If you are working and that aggravates it then  I would say it could get worse. I find that I can do many things today that I would not even think of 2 years after getting this. I also posted a site on degenerative disks as they can cause spasms.What type and how bad I’m not sure of.                gary; – Hide quoted text — Show quoted text – Well at last after 6 years of asking, the GP I saw today is referring me to a neurologist, she wasn’t too familiar with Dystonia at all, but she listened to me and didn’t fob me off with "anxiety and tension". She also asked for web addresses for her own personal interest. So I’ll just need to wait see what happens next. Thanks again to all of you who replied to my first post. Just one more question, from experience what are the chances of ST worsening after between 6 – 9 years? I’ve not been as bad the past 4? Regards Elaine

Response:

Well at last after 6 years of asking, the GP I saw today is referring me to a neurologist, she wasn’t too familiar with Dystonia at all, but she listened to me and didn’t fob me off with "anxiety and tension". She also

Folks who have Dystonia, because of way they attempt to control muscles spasms, give the impression they suffer from anxiety and tension. I also have essential tremor.  Some folks get the impressions, I suppose, that I am a nervous person but that is not the case.  Fatigue and stress will make it worst, but certain foods, liquids and movements will do the same thing. If I consciously try to control it, it will get worst.  Seems as if messages in the brain are mixed up.  All frustrating and complex. Spasms and tremor are usually worst in the mornings. asked for web addresses for her own personal interest. So I’ll just need to wait see what happens next. Thanks again to all of you who replied to my first post. Just one more question, from experience what are the chances of ST worsening after between 6 – 9 years? I’ve not been as bad the past 4?

ST flares up for five to six years, goes into remission on it’s own and then may come back later on.   It is important that you see a neurologist who is familiar with the syndrome.   – Hide quoted text — Show quoted text -Regards Elaine

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Well at last after 6 years of asking, the GP I saw today is referring me to a neurologist, she wasn’t too familiar with Dystonia at all, but she listened to me and didn’t fob me off with "anxiety and tension". She also asked for web addresses for her own personal interest. So I’ll just need to wait see what happens next. Thanks again to all of you who replied to my first post. Just one more question, from experience what are the chances of ST worsening after between 6 – 9 years? I’ve not been as bad the past 4? Regards Elaine

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Question:

I have been taking zoloft for 2 years now and I have noticed that I do not feel as good as I had. It did stop my head chatters. I think it is an OCD thought pattern but I am becoming more irritable and tired. Also my BP went up after starting zoloft and I have psoriasis and this also worsened. I am down to 25 mg every other day and will stop all next week. I feel better but some of the thought pattern has come back. This is ok I can deal. Has anyone come off and feel they do not need it anylonger. I weened myself off xanex a year ago and have done great without it also. Joan

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I am down to 25 mg every other day and will stop all next week. A daily Zoloft dose would be preferrable to every other day dosing. I realize those 50 mg tabs are hard to cut up with a knife, but I’ve done it. Chip

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Hi,   I have also been on zoloft for 2 yrs.at one point i went off of them and felt great for about 5 months,then slowly but surely the panic attacks and depression came back. its been over a year since i went back on zoloft,ive been doing really well.but i don’t want to take it forever if i don’t have to.i am also  weening off the zoloft.so far i feel good,but have noticed a few things,dizziness,tingleling around my mouth and heart flutters,im not sure if this is from weening off or these herbs that i am trying(5-htp).i called my doc about it and she said i took too high of a dose of the herb,i think it’s a combo of both.if these herbs don’t work i will go back on zoloft and forget about tring other things.my only complaint about zoloft is the weight i’ve gained,other then that it’s been great.also it did seem like lately it wasn’t working as well,so instead of upping my dose i decided to try 5-htp.   hope this helps. ~~~  Your goals,minus your doubts,equal your reality ~~~~                                Julie

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I  have been prescribed zoloft (25mg 1 week then 50) by my Dr. I went to him complaining of very bad irritability. I mean to say I get mad and aggitated very easily. I had PA’s for about 7 years and they went away after stopping my high caffiene intake and depression runs in my family. The DR. thought that my temper problem could be a mild depression and thus the zoloft pescription. I would like to know what side effects I may have and if anyone has had the same thing prescribed for these symptoms. Dan

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I  have been prescribed zoloft (25mg 1 week then 50) by my Dr. I went to him complaining of very bad irritability. I mean to say I get mad and aggitated very easily. I had PA’s for about 7 years and they went away after stopping my high caffiene intake and depression runs in my family. The DR. thought that my temper problem could be a mild depression and thus the zoloft pescription. I would like to know what side effects I may have and if anyone has had the same thing prescribed for these symptoms. Dan Hi Dan,

I have been on Zoloft 25mg for a couple of months.  It wasn’t my first ssri- I started with Paxil and switched to Zoloft – so I missed out on the weaning on process.  The only thing I did/do experience was stomach discomfort(long story) other than that I can relate to your temper and irritability – I still get that way sometimes but It doesn’t CONSUME me.  I can let it go- no problem.  Sucks living without coffee doesn’t it?- I think I’m going through withdrawal – gosh -I could go for cup right now.  No beer, No cigs, No Coffee- Is this hell or what? Just kidding Bonnie Before you buy.

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- Hide quoted text — Show quoted text – I  have been prescribed zoloft (25mg 1 week then 50) by my Dr. I went to him complaining of very bad irritability. I mean to say I get mad and aggitated very easily. I had PA’s for about 7 years and they went away after stopping my high caffiene intake and depression runs in my family. The DR. thought that my temper problem could be a mild depression and thus the zoloft pescription. I would like to know what side effects I may have and if anyone has had the same thing prescribed for these symptoms. Dan

Hi Dan, Weaning on it you might not get any side effects. The most noticeable for me was upset stomach and dry mouth. Oh yes I also Yawned allot. If you get side effects that bother you talk to your doctor. You can always cut back to a quarter of the 25. I started out at 12.5 and upped it from there. Charla Got questions?  Get answers over the phone at Keen.com. Up to 100 minutes free! http://www.keen.com

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Ah no, actually it is technically not an MAOI I got that all wrong. I am back to my norminal condition now.

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Apparently according to my doc the smallest dose is 50mg. Mabe the pharmesuitical ( ) companies thing that people in the Uk are harder and can start on 50mg *shrug* I had to stop it I could not work. Instead I am going back on st johns whilst waiting to see if I can see a physchatrist.

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Apparently according to my doc the smallest dose is 50mg. Mabe the pharmesuitical ( ) companies thing that people in the Uk are harder and can start on 50mg *shrug* I had to stop it I could not work. Instead I am going back on st johns whilst waiting to see if I can see a physchatrist.

Jason, they should be available in 25mg tablets.  Even if they’re not, invest in a pill cutter and make them smaller (don’t try to use a knife, you’ll wind up with a bunch of powder). Matt

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And that is the same as Sertraline hydroxide isn’t it? I woudn’t worry but I had bad stuff happening on a dose of 50mg.

No wonder as this is far too high a dose to start on. A good starting dose would be 12.5 mg… Philip – Hide quoted text — Show quoted text –

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Addendum – I had taken an MAOI for ten days previously. St John’s wort. (hypericum)

It is imperative to have at least a two week washing out period between a MAOI and an SSRI. Whether SJW actually *is* a MAOI remains to be seen but it is sometimes said to have MAOI-like properties at higher doses. Philip

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Addendum – I had taken an MAOI for ten days previously. St John’s wort. (hypericum)

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Can’t SJW +MAOIs cause the same sorts of problems SSRIs or TCAs with MAOIs can? I can’t believe that there wasn’t a waiting period with the MAOI.  This should be very disturbing to you Jason, and suggests strongly you seek another p-doc, or a p-doc if you’re with a GP.  (Though it’s such a basic fact about psychotropic drugs, s/he *had* to know about the risk of mixing MAOIs and SSRIs.) If you’re feeling really depressed and can handle some agitation for a few days, you probably could start at 25mg.  I always start off an SSRI at a really low dose (in this case 12.5mg) because of my high level of anxiety. Matt

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And that is the same as Sertraline hydroxide isn’t it? I woudn’t worry but I had bad stuff happening on a dose of 50mg. These were my symptoms: Day 1 Panic, very anxious, high pulse rate, fidgeting, hot/cold, odd sense of smell/taste, Cannot eat much, Talking to myself more than usual, shaky, hypermania, langauge difficulties, Can’t sleep. DAY 2 Spelling difficulties ( I spelt ofcourse as +ACI-obvcourse+ACI-  ), Slight anxiety, sweating lots, got out of bed 3.30am, felt afraid for some reason. – This is when I decided to stop. I have stopped taking them now. And feel much better. I still have some written langauge difficulties, and some hypertension. It is very rare indeed to get all of these symptoms, it’s wasn’t hugely traumatic and a doctor I saw wasn’t worried. ( tried to persuade me to carry on – but I HAVE to work next week )

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I  have been prescribed zoloft (25mg 1 week then 50) by my Dr. I went to him complaining of very bad irritability. I mean to say I get mad and aggitated very easily. I had PA’s for about 7 years and they went away after stopping my high caffiene intake and depression runs in my family. The DR. thought that my temper problem could be a mild depression and thus the zoloft pescription. I would like to know what side effects I may have and if anyone has had the same thing prescribed for these symptoms. Dan

Dan, SSRIs have a tendency to make people less sensitive to events in their life.  Some people even complain of apathy as a result of taking them. I’ve heard of them being used successfully for irritability, or at least having the effect of making people less irritable.  If I recall correctly (it’s been a while), Peter Kramer even notes this in _Listening to Prozac_ (with respect to Prozac). There is some info on SSRIs and apathy at dr-bob.org/tips  search under "apathy" Best, Matt

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Question:

After about 7 months on Paxil, I started becoming very depressed.  My pdoc reduced the dosage and I was better, but then the pa’s started to get worse again.  When she increased the Paxil, the depression returned.  So now I’m off Paxil.  Actually, I wish the depression hadn’t happened, I was doing pretty good on Paxil for a while. Peg

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 Hi Lynne, The SSRIs can induce or exacerbate movement disorders (possibly related to their effects on dopamine). I had a temporary increase in my restless legs syndrome (RLS) after a Zoloft increase which resolved after a Zoloft dose reduction. Zoloft has more effect on dopamine reuptake than any of the other SSRIs, and thus may cause these problems more frequently than other SSRIs. Bruxism (teeth grinding) can be brought on by an SSRI. A temporary reduction in your Paxil dose may resolve this problem, as may the addition of certain meds (Bromocriptine for one, I think). It’s also possible you’re exeriencing Paxil "poop out" with lessening of anti-aNXIETY EFFECTS AND NEED A DOSAGE ADJUSTMENT OR AUGMENTATION with another med. Good luck, Chip P.s. if I were in your situation I think I would try a reduction in Paxil dose and see if the teethgrinding improved. I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine. I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?. I am suddenly more nervous, anxious and generally stressed for no known reason. I have developed jaw clenching and have to wear a mouth guard at night. My jaw and neck also get tight during the day. I have had other side effects like insomnia all the way along, but not this new "tension" stuff. Thanks for any help or insight. Lynne

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So your saying everyone is not entitled their own opinion?  Kiss my ass. Xanman — Depressed?  Anxious?  http://members.tripod.com/Xanman22/index.html Xanland – http://www.geocities.com/SoHo/Gallery/9098/ Xanland – A little insanity in an sane wolf.

– Hide quoted text — Show quoted text – Not good to share with the group.  Some people have done great on paxil. I for one don’t want to read what bad things can happen.  Remember, every med reacts differently with everyone. What kind of support is this group for then? You should not share bad experiences with meds? How about bad emotional phases, are they "allowed"? Nonsense. This is a support group, and in order to get support, we have to share the good with the bad. If somebody is in distress because they are unsure what to think of a med they are taking, why should they not ask others about it? It was not a "all meds are evil" mail after all. Skreee http://members.xoom.com/Skreee/James/JamesMason.html

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I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine.  I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?.  I am suddenly more nervous, anxious and generally stressed for no known reason.  I have developed jaw clenching and have to wear a mouth guard at night.  My jaw and neck also get tight during the day.  I have had other side effects like insomnia all the way along, but not this new "tension" stuff.  Thanks for any help or insight.  Lynne

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Not good to share with the group.  Some people have done great on paxil.  I for one don’t want to read what bad things can happen.  Remember, every med reacts differently with everyone. Xanman — Depressed?  Anxious?  http://members.tripod.com/Xanman22/index.html Xanland – http://www.geocities.com/SoHo/Gallery/9098/ Xanland – A little insanity in an sane wolf.

– Hide quoted text — Show quoted text – I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine.  I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?.  I am suddenly more nervous, anxious and generally stressed for no known reason.  I have developed jaw clenching and have to wear a mouth guard at night.  My jaw and neck also get tight during the day.  I have had other side effects like insomnia all the way along, but not this new "tension" stuff.  Thanks for any help or insight.  Lynne

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My jaw and neck also get tight during the day.  I have had other side effects like insomnia all the way along, but not this new "tension" stuff.

Hello, I am experiencing this too.  I have to mentally remind myself to loosen my jaw.  I did not think it was because of the paxil though, but who knows.  I get the insomnia occasionally, but to cope with that I switch to taking the pill in the morning for a few days and that seems to fix it.  I don’t know what to think about the jaw clenching, but do not feel it is serious enough to stop the paxil. Take Care, Amy Jo

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HI Lynne, I have the same symptoms of jaw clenching, I know how unpleasant it can be. I had a mouth guard many years ago (at the time we thought it was TMJ).  The guard doesn’t fit any more so now I am getting a partial upper plate (if the damn Dentist would just call me back).  I do relaxation exercises to help me relaxe those clenched muscles.  Oh BTW, I don’t take Paxil. Cathy — P.H.O.B.I.A. People Helping Others Become Independent Again Off-line Self Help Support Group, NJ http://community.nj.com/cc/phobia Anxiety Treatment Options http://www.members.tripod.com/~PhobiaGroup/index.html

– Hide quoted text — Show quoted text – I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine.  I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?.  I am suddenly more nervous, anxious and generally stressed for no known reason.  I have developed jaw clenching and have to wear a mouth guard at night.  My jaw and neck also get tight during the day.  I have had other side effects like insomnia all the way along, but not this new "tension" stuff.  Thanks for any help or insight.  Lynne

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I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine.  I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?.  I am suddenly more nervous, anxious and generally stressed for no known reason.  I have developed jaw clenching and have to wear a mouth guard at night.  My jaw and neck also get tight during the day.  I have had other side effects like insomnia all the way along, but not this new "tension" stuff.  Thanks for any help or insight.  Lynne

Dear Lynn, You really should talk to your doctor about how poorly you are feeling. IMO…..it sounds like the Paxil dose you are on is not as effective as it was and you are experiencing a increase in your anxiety. There was recently a thread on SSRI anti-depressants and jaw clenching, it could be a side-effect of Paxil. Jaw clenching is also a symptom of anxiety, and you seem to be living with alot of tension and anxiety right now. You need to talk to your doctor, treatment might include increasing your paxil dose, or augmenting it with another med. Also, have you ever looked into CBT? P.S.  It wouldn`t hurt to have a good checkup with your doctor to rule out any physical causes of these symptoms. Take care. Jackie

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I have been taking Paxil for a year and a half and have suddenly developed what I think may be new side effects to the medicine.  I was wondering if anyone else has had a side effect pop up after being on the medicine for quite awhile?

I feel like some of the effects have really come and gone.  I’ve had almost all of them, it seems, but few have lasted the whole time so far. But how I think about it right now is that they are all tolerable except for weight gain.  And that’s interesting, because I know that without the drug I would totally be in fear of all of them.

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Paxil definitely causes some people to involuntarily clench their jaws and/or grind their teeth (bruxism). I had my dentist custom-make a nighttime mouth guard for me, and that has helped a lot… I was getting a very sore TMJ (temporomandibular joint or something like that — where your jaw hinges to your head, just below your ear) from grinding my teeth all night. I still grind my teeth sometimes during the day but try to prevent it by reminding myself all the time. If it doesn’t look too silly, or when you’re alone, try sticking just the tip of your tongue between your teeth so you won’t bite down or clench! (You can do this with your mouth closed.) So far I’ve cracked two molars, loosened a canine tooth, and scraped the enamel off the tops of my front teeth — all from this newly intensified teeth-grinding since I’ve been on Paxil (one year plus two months). But for me — IT’s WORTH IT! Paxil has worked too well for my panic and depression for me to consider discontinuing it; I’ll stick with my mouth guard and other tricks to try and save my teeth.  :-) – Anne —

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Question:

I have never experienced any sedation or gotten any "buzz" from Xanax, in fact it actually energizes me without making me "speedy", if that makes sense.

It does make sense, and that happens for me at low doses as well. How much have you taken at a time? I am totally screwed up with sleep and energy due to the fact that I work full time night shift and then watch my highly hyperactive toddler all day until 4 or 5 when my eldest daughter comes home to help. So I am always tired and yet cannot fall asleep..frustrating!

You have my sympathies! I often have trouble falling asleep due to pain, and I have problems with waking up in the middle of the night. I’m convinced this has had a deleterious effect on my mental functioning. :-/ -elizabeth

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I have never experienced any sedation or gotten any "buzz" from Xanax, in fact it actually energizes me without making me "speedy", if that makes sense. It does make sense, and that happens for me at low doses as well. How much have you taken at a time?

  In the middle of an extreme panic attack I have once or twice taken 3 mgs at a time..and have taken 2 mgs at once for slightly less severe but still awful ones..Now though I never take more than 1mg at a time, I dont need to with the other meds, in fact dont take any sometimes cause I just plain old forget. May -elizabeth

– "Believe me! The secret of reaping the greatest fruitfulness and the greatest enjoyment from life is to live dangerously!"      -                Nietzsche

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Hi Diana,     If you have never seen a p-doc yet, who prescribed the meds? 25mg is a good starting dose for zoloft, this should keep the side affects bearable. Zoloft taken daily and xanax whenever needed has worked very well for me, but then again YMMV.  The p-doc you are going to see  should be very caring and understanding towards your feelings. One that could try to understand what it is like to feel the way we do. I know mine does. I wish you the best of luck and hope the zoloft works for you. Please keep us posted. steve

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Hello everyone haven’t posted lately but i am back, I finally made a appt with a psych doc today, my appointment if for next tuesday this is the first time for me, alittle nervous, can anyone give me any suggestions on what to look for with her to make sure she is the right one for me?  been having PA for 9 years now and finally being medicated for it .05mg of xanax and 25mg of zoloft is that a good combo? Thanks, Diana

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The med combo is pretty standard, however that Zoloft dose is probably too low for any therapeutic benefit…although with all of the SSRI’s you must increase the dose gradually…and you can anticipate some increase in symptoms while you are going on any meds.  SSRI’s are more popular these days than TCA’s  because they effect fewer systems (less side effects) and are more site specific.  Xanax is a standard med to be used as needed., usually in combo with another med… however, I’ve been doing a lot of reading about a rebound effect … something I experience always, so I stopped.  In terms of your shrink… a good dr. should educate you about the disorder in addition to writing scripts for meds. Find out what percentage of her practice is anxiety patients.  Also, check out the Anxiety Disorder Assoc. web site for more ideas on getting a good shrink: www.adaa.org  GOOD LUCK!!  Keep us posted on the outcome.

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Steve, thanks for responding my family doc got me started on the meds and referred me to the psych doc.

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Hello everyone haven’t posted lately but i am back, I finally made a appt with a psych doc today, my appointment if for next tuesday this is the first time for me, alittle nervous, can anyone give me any suggestions on what to look for with her to make sure she is the right one for me?  been having PA for 9 years now and finally being medicated for it .05mg of xanax and 25mg of zoloft is that a good combo?

Zoloft (SSRI-antidepresant) and Xanax (benzo) make a good combo although our reactions to meds are very personal. One of the things to find out is whether your pdoc is a *benzophobe* (one who doesn’t prescribe benzos because of the alleged *addcition* problem). If she is, she’s not the right one for you. Also you should feel at ease with her. You should be listened to and treated like a responsible adult. You should be able to work on treatment together rather than the doc just telling you what to do. She should explain what she prescribes and proposes and why and then you should *agree* on what’s the right course to take. Philip – Hide quoted text — Show quoted text – Thanks, Diana

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Hi Diana, The only words of advice I can give are not medicine -related. Don’t go into your appointment believing that your doctor can wave a magic wand, say all the right things and heal you. Yes, you can be healed but you will have to work hard. Also, do a lot of reading and decide what sort of therapy will work for you. (If I have to talk about my childhood one more time, I will scream!) Also, if you don’t feel comfortable with your doctor, say so Finally, if you trust your doctor, follow his/her advice. I know how big a step it is to go to a pdoc….good for you! You’re one step closer to feeling better.  Good luck. Let us know how it goes. Charley – Hide quoted text — Show quoted text – Hello everyone haven’t posted lately but i am back, I finally made a appt with a psych doc today, my appointment if for next tuesday this is the first time for me, alittle nervous, can anyone give me any suggestions on what to look for with her to make sure she is the right one for me?  been having PA for 9 years now and finally being medicated for it .05mg of xanax and 25mg of zoloft is that a good combo? Thanks, Diana

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Hey Diana!!  I’m on Zoloft, 100 mgs., and Xanax .25 mgs. as needed.  Be careful with the Zoloft…I didn’t have many side effects but it definitely increased my panic attacks in the beginning.  Hang in there…Zoloft has worked great for me.  I still have a few "muted" PAs but I can handle them much better now.  And the fact that I can drive to and from work and even make it to stores (close to home) by myself is amazing!!  I’m going up to 125 mgs. of Zoloft starting tomorrow on the advice of my pdoc…good luck and keep us all posted. Melissa

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Hi, I take only zoloft 50 mgs. And it works well for me. Except around pms time when anxiety is high anyway. I feel some symtoms but they are very mild. It took 4 weeks to see the difference so give it awhile to work, the longer the better I feel.

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One of the things to find out is whether your pdoc is a *benzophobe* (one who doesn’t prescribe benzos because of the alleged *addcition* problem). If she is, she’s not the right one for you.

I second this…even if I didn’t take benzos, I’d avoid benzophobic doctors just on principle! As everybody has said, Zoloft and Xanax is a good combination for panic disorder. 25mg is a starting dose of Zoloft, not a therapeutic dose; around 50mg, many people start to get some benefit, 100 is often enough, 200 is the high end (though you *can* go higher, this is the "official" recommended maximum). Doses of benzos are pretty individualized – are you taking it "as needed," or on some schedule? When I was using it for panic attacks, I needed 2mg to stop them (I didn’t take it all the time, just when I felt an attack coming on), but that’s just me. I actually don’t know how much other people use for this purpose – anyone? -elizabeth

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Xanax is a standard med to be used as needed., usually in combo with another med… however, I’ve been doing a lot of reading about a rebound effect … something I experience always, so I stopped.

I’ve got a question about this: how many times a day were you taking it? I think that Xanax does not last equally long for everyone, so some people can get by taking twice a day but others need it four times a day. -elizabeth

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Xanax is a standard med to be used as needed., usually in combo with another med… however, I’ve been doing a lot of reading about a rebound effect … something I experience always, so I stopped. I’ve got a question about this: how many times a day were you taking it? I think that Xanax does not last equally long for everyone, so some people can get by taking twice a day but others need it four times a day. -elizabeth

 Personally I had trouble taking it PRN because my pas were often OOB (as in while sleeping or nothing at all) although after enough of them I developed pretty much a state of constant anticipatory anxiety ..I could literally think myself into a panic attack trying to figure out how to avoid them..enter agoraphobia..Anyhow when I finally got Xanax I found if I had a PA it would generally take me 1.5-2 mgs to stop it..and I had little success with twice a day dosage,so I decided to stop the PRN route, as that is almost sure to leave anyone like myself with lots of hours of anxiety, as Xanax lasts 4 to 5 hrs at most for me. I now take it regularly .05 mg to 1 mg every four hours while awake, and if I rememeber..I do skip doses lots of times without even noticing it since my other two meds are helping a good deal too I think. But I can’t imagine twice a day being a very good xanax dosing..I would think 3 times at least given its short action. I have had almost no…nada..zero PAs for 6 weeks or more *knock on wood*, and my anxiety level is low enough to live with..I am sorry I was talked out of Xanax for so long because its tailor made for me and allows me to live, like a ..well not normal..but like a person anyhow ;- May — "Believe me! The secret of reaping the greatest fruitfulness and the greatest enjoyment from life is to live dangerously!"      -                Nietzsche

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Personally I had trouble taking it PRN because my pas were often OOB (as in while sleeping or nothing at all) although after enough of them I developed pretty much a state of constant anticipatory anxiety

I pretty much *exclusively* had OOTB panic attacks; I can only think of one instance in which there’s been an apparent trigger (it was a couple months ago – anxiety about school, actually). However, I experience an aura that predicts panic pretty consistently. I’ve never had one in my sleep, but then again, I don’t sleep much. :-} Anyhow when I finally got Xanax I found if I had a PA it would generally take me 1.5-2 mgs to stop it..and I had little success with twice a day dosage,so I decided to stop the PRN route, as that is almost sure to leave anyone like myself with lots of hours of anxiety, as Xanax lasts 4 to 5 hrs at most for me.

Yowsers. It lasts a lot longer than that for me: if I take a large enough dose to be sedating, I can actually get a full night’s sleep (7-8 hours). Most people do need to take it at least 3 times a day, though. I now take it regularly .05 mg to 1 mg every four hours while awake, and if I rememeber..I do skip doses lots of times without even noticing it since my other two meds are helping a good deal too I think.

Every 4 hours? Wow. Do you wake up in the morning feeling cruddy? When I tried taking Buprenex by itself (without a regular antidepressant), I found that I would get nasty rebound depression if I missed a dose. I think that sort of thing (short-acting) is better if you have an antidepressant (or two to smooth things out. (Now I’m just using the Buprenex as a p.r.n.) -elizabeth

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- Hide quoted text — Show quoted text – Personally I had trouble taking it PRN because my pas were often OOB (as in while sleeping or nothing at all) although after enough of them I developed pretty much a state of constant anticipatory anxiety I pretty much *exclusively* had OOTB panic attacks; I can only think of one instance in which there’s been an apparent trigger (it was a couple months ago – anxiety about school, actually). However, I experience an aura that predicts panic pretty consistently. I’ve never had one in my sleep, but then again, I don’t sleep much. :-} Anyhow when I finally got Xanax I found if I had a PA it would generally take me 1.5-2 mgs to stop it..and I had little success with twice a day dosage,so I decided to stop the PRN route, as that is almost sure to leave anyone like myself with lots of hours of anxiety, as Xanax lasts 4 to 5 hrs at most for me. Yowsers. It lasts a lot longer than that for me: if I take a large enough dose to be sedating, I can actually get a full night’s sleep (7-8 hours).

 I have never experienced any sedation or gotten any "buzz" from Xanax, in fact it actually energizes me without making me "speedy", if that makes sense. I had awful drowsiness on Klonopin that never went any and I was not even on a full therapeutic dosage any of the three times I took it. I still do not sleep well and have Ambien that I take on occasion and find somewhat helpful, but If I take it more than two days in a row it seems to lose its effectiveness for me. I am totally screwed up with sleep and energy due to the fact that I work full time night shift and then watch my highly hyperactive toddler all day until 4 or 5 when my eldest daughter comes home to help. So I am always tired and yet cannot fall asleep..frustrating!  Most people do need to take it at least 3 times a day, though. I now take it regularly .05 mg to 1 mg every four hours while awake, and if I rememeber..I do skip doses lots of times without even noticing it since my other two meds are helping a good deal too I think. Every 4 hours? Wow. Do you wake up in the morning feeling cruddy?

I wake up feeling better than I ever have in my life; I no longer sleep through the alarm or take an hour to drag my butt out of it. As I said though (I think) I am also on Pamelor 50mgs and 20mgs of Prozac and I no longer necessarily take xanax every four hours..On days off at home I have forgotten to take any at all even, and then there are days where I know I am going to be better off to take it every 4 hours  before I *need* it after six…I have never had any aura at all for my OOB attacks and over the years I have accumulated a ton of triggers that I am now working on overcoming..the big one so far was not only to ride comfortably in a car but to drive myself..Now that the Pamelor/Prozac is kicking in, I am taking the xanax pretty much prn..I dont generally take more than 2 mgs total on any day now, and as I say I have never felt more competent or alive in my life =) When I tried taking Buprenex by itself (without a regular antidepressant), I found that I would get nasty rebound depression if I missed a dose. I think that sort of thing (short-acting) is better if you have an antidepressant (or two to smooth things out. (Now I’m just using the Buprenex as a p.r.n.) -elizabeth

May — "Believe me! The secret of reaping the greatest fruitfulness and the greatest enjoyment from life is to live dangerously!"      -                Nietzsche

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Question:

Thanks to everyone who responded.  It really does make me feel better to read such supportive comments.   No more AOL….. Thanks again! Peace, Dan

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I’d like to introduce myself.  I’m a twenty six year old male, and I’ve read this newsgroup on and off for the last couple years.   Also, I’d like some feedback on my medication.  First, though, my history with panic disorder…  Ever since I was a little kid I’ve had trouble with panic attacks.  In Little League, I was a nervous wreck before games because I thought I might have an attack.  (Of course at the time I didn’t know what they were, and was afraid to tell anyone.)  I quit the basketball team because I thought I was prone to PAs at night, particularly in the lighting of a gymnasium.  These were textbook panic attacks I was having (and worrying about having!) – most of the symptoms, and they’d last about fifteen minutes or so. I had a pretty normal childhood otherwise.  By the time I reached high school, I considered the PAs a thing of the past, something I’d luckily outgrown.  I made it through college without really giving panic attacks any thought. Then — about three years ago (I’d been out of college almost a year), I was going through a somewhat stressful time in my life, trying to figure out my future, looking for a career I cared about, etc.  I had *the* worst panic attack I’d ever had, and the reason it was so bad was because it seemed to not go away.  Without exaggeration, I can honestly say that I felt like I was having a panic attack for two months.  I had no idea what was going on, and grew very depressed.  I was living with my girlfriend, who was supportive as she could be, but she was the only person I told.  This was a very dark, scary time in my life.  Things lightened up a bit when I finally told my mom.  She knew someone who’d had a problem that sounded similar.  Soon, I moved back home.  I met with my mom’s friend, who gave me several books to read (Kernodle, Sheehan, Reid, Weekes), which I read with a frenzy.  She also recommended a psychiatrist, who helped me through medication.  This was a summer of healing for me.  We found a medication combination – 5 mg per day of Xanax, 1mg per day Klonopin, and 150 mg per day Zoloft.  I had tried Imipramine, but it made me feel even more anxious, as though I were about to have a PA at any time. Anyway, this dosage took awhile to reach, but it was the dosage that worked for me.  I also read and practiced many of the self-help techniques such as deep relaxation, breathing exercises, meditation, stopping negative thought patterns, et al.  It took awhile, but I got better.  I finally felt some joy in life again.  Since then, I’ve stayed at the same dosages of the medications, with few side effects, and feel very good.  I’ve had panic attacks begin, but the combination of the medication and learning not to fear the attack enables me to take a deep breath and let it go.  My life isn’t perfect, but I feel sane. I’ve moved away from my parents house, and owe them a HUGE debt of gratitude for letting me free-load for a year as I got better.  It took me awhile to get a job, because I had an immense fear of being stuck somewhere for eight hours. I wasn’t afraid to go out – I was afraid, though, to *have* to be in one place.  When I finally started working, it was a huge step in my recovery.   So, I’m curious what your thoughts are on my medication.  Sometimes I feel a bit guilty, like I should try to taper off the meds.  Other times, I’m perfectly content to stay on them the rest of my life.  I haven’t built up a tolerance for the Xanax, so that’s not a problem.  My doctor mentions tapering every time I see her, which is every three months, but lately I’ve been in so many transitional stages in my life, I just haven’t felt ready to mess with the medication.  (First I moved away from home – far away, actually – and then I got married to the girlfriend who’d been so supportive when I first got sick, and now we have a three month old baby boy….I’d call all that "transitional".)   That’s my story, and I’m curious what you all have to say about my medication. I know the dosages are pretty high, but I also know that quality of life is not something to take for granted. Peace, Dan "Is a dream a lie if it don’t come true  Or is it something worse?"              - Bruce Springsteen

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It is hard enough to find medications that take care of the symptoms. If these meds work for you, then you have achieved your goal and I would not try to change them right now, just to get your life back in shape while you are still feeling well.  Make sure your doc. informs you about all possible side effects, but basically I wouldn’t touch a thing for as long as possible if you find a set of meds that really work for you. Dr.S. There are no false alarms http://www.algy.com/pdi – Hide quoted text — Show quoted text -(SYMKTB) writes: I’d like to introduce myself.  I’m a twenty six year old male, and I’ve read this newsgroup on and off for the last couple years.   Also, I’d like some feedback on my medication.  First, though, my history with panic disorder…  Ever since I was a little kid I’ve had trouble with panic attacks.  In Little League, I was a nervous wreck before games because I thought I might have an attack.  (Of course at the time I didn’t know what they were, and was afraid to tell anyone.)  I quit the basketball team because I thought I was prone to PAs at night, particularly in the lighting of a gymnasium.  These were textbook panic attacks I was having (and worrying about having!) – most of the symptoms, and they’d last about fifteen minutes or so. I had a pretty normal childhood otherwise.  By the time I reached high school, I considered the PAs a thing of the past, something I’d luckily outgrown.  I made it through college without really giving panic attacks any thought. Then — about three years ago (I’d been out of college almost a year), I was going through a somewhat stressful time in my life, trying to figure out my future, looking for a career I cared about, etc.  I had *the* worst panic attack I’d ever had, and the reason it was so bad was because it seemed to not go away.  Without exaggeration, I can honestly say that I felt like I was having a panic attack for two months.  I had no idea what was going on, and grew very depressed.  I was living with my girlfriend, who was supportive as she could be, but she was the only person I told.  This was a very dark, scary time in my life.  Things lightened up a bit when I finally told my mom.  She knew someone who’d had a problem that sounded similar.  Soon, I moved back home.  I met with my mom’s friend, who gave me several books to read (Kernodle, Sheehan, Reid, Weekes), which I read with a frenzy.  She also recommended a psychiatrist, who helped me through medication.  This was a summer of healing for me.  We found a medication combination – 5 mg per day of Xanax, 1mg per day Klonopin, and 150 mg per day Zoloft.  I had tried Imipramine, but it made me feel even more anxious, as though I were about to have a PA at any time. Anyway, this dosage took awhile to reach, but it was the dosage that worked for me.  I also read and practiced many of the self-help techniques such as deep relaxation, breathing exercises, meditation, stopping negative thought patterns, et al.  It took awhile, but I got better.  I finally felt some joy in life again.  Since then, I’ve stayed at the same dosages of the medications, with few side effects, and feel very good.  I’ve had panic attacks begin, but the combination of the medication and learning not to fear the attack enables me to take a deep breath and let it go.  My life isn’t perfect, but I feel sane. I’ve moved away from my parents house, and owe them a HUGE debt of gratitude for letting me free-load for a year as I got better.  It took me awhile to get a job, because I had an immense fear of being stuck somewhere for eight hours. I wasn’t afraid to go out – I was afraid, though, to *have* to be in one place. When I finally started working, it was a huge step in my recovery.   So, I’m curious what your thoughts are on my medication.  Sometimes I feel a bit guilty, like I should try to taper off the meds.  Other times, I’m perfectly content to stay on them the rest of my life.  I haven’t built up a tolerance for the Xanax, so that’s not a problem.  My doctor mentions tapering every time I see her, which is every three months, but lately I’ve been in so many transitional stages in my life, I just haven’t felt ready to mess with the medication.  (First I moved away from home – far away, actually – and then I got married to the girlfriend who’d been so supportive when I first got sick, and now we have a three month old baby boy….I’d call all that "transitional".)   That’s my story, and I’m curious what you all have to say about my medication. I know the dosages are pretty high, but I also know that quality of life is not something to take for granted. Peace, Dan "Is a dream a lie if it don’t come true Or is it something worse?"             – Bruce Springsteen

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SYMKTB schreef: – Hide quoted text — Show quoted text – < snipped life story for space  We found a medication combination – 5 mg per day of Xanax, 1mg per day Klonopin, and 150 mg per day Zoloft. with few side effects, and feel very good.  I’ve had panic attacks begin, but the combination of the medication and learning not to fear the attack enables me to take a deep breath and let it go.  My life isn’t perfect, but I feel sane. So, I’m curious what your thoughts are on my medication.  Sometimes I feel a bit guilty, like I should try to taper off the meds.  Other times, I’m perfectly content to stay on them the rest of my life.  I haven’t built up a tolerance for the Xanax, so that’s not a problem.  My doctor mentions tapering every time I see her, which is every three months, but lately I’ve been in so many transitional stages in my life, I just haven’t felt ready to mess with the medication.  (First I moved away from home – far away, actually – and then I got married to the girlfriend who’d been so supportive when I first got sick, and now we have a three month old baby boy….I’d call all that "transitional".) That’s my story, and I’m curious what you all have to say about my medication. I know the dosages are pretty high, but I also know that quality of life is not something to take for granted. Peace, Dan

Hi Dan! Good to hear you’re doing so much better. It seems you have a nice family and your parents seem to have an OK son who will surely be a great father himself. It’s a kind of success story which is always inspirational and it seems there is much warmth around you. About the meds: it’s a lot of benzodiazepine but if it works, it works and if you don’t notice side effects like motor or cognitive impairment I wouldn’t worry about it. The combo of SSRI and benzo is a common one and the Zoloft dose is not unusually high. I’m happy that it works for you the way it does. If and when you feel like it you can always experiment with reducing the Xanax dosage but if it turns out that need 5 mgs that’s fine too IMO. Philip – Hide quoted text — Show quoted text – "Is a dream a lie if it don’t come true  Or is it something worse?"              - Bruce Springsteen

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We found a medication combination – 5 mg per day of Xanax, 1mg per day Klonopin, and 150 mg per day Zoloft…… I’ve stayed at the same dosages of the medications, with few side effects, and feel very good.  I’ve had panic attacks begin, but the combination of the medication and learning not to fear the attack enables me to take a deep breath and let it go.  My life isn’t perfect, but I feel sane.

This is great you have had such support and found a combo that works for you and given you back your life. So, I’m curious what your thoughts are on my medication.  Sometimes I feel a bit guilty, like I should try to taper off the meds.  Other times, I’m perfectly content to stay on them the rest of my life.  I haven’t built up a tolerance for the Xanax, so that’s not a problem.

My first reaction is – if it ain’t broken, why fix it?  I think many of us get to a point we feel we can do this without meds and you are certainly free to try and lower your doses and see what happens.  I did that once and found I didn’t need as much K as I was taking.  Went a little lower and found I had pushed it too far.  Anyways,  I don’t know why you feel guilty, as IMO, there is no need to.  Better to be on meds and functioning than a suffering *warrior*.  Plus you have already been there and know what it is like. My doctor mentions tapering every time I see her, which is every three months, but lately I’ve been in so many transitional stages in my life, I just haven’t felt ready to mess with the medication

An excellent reason for NOT making changes at this time.  If you do want to try that….I hope you will do it at a time when life is relatively stable and nonchaotic – and having a new baby sure doesn’t seem the time.  Congrats by the way.  :) That’s my story, and I’m curious what you all have to say about my medication. I know the dosages are pretty high, but I also know that quality of life is not something to take for granted.

Dan…I think you just answered your own question.  Dosages are irrelevent – all that matters is what works for the individual.  Alot to be said for that quality of life thing. Best wishes… Gwen

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(SYMKTB) writes: That’s my story, and I’m curious what you all have to say about my medication.

Hi Dan, good story. It gives people hope when they read that someone is doing well. I can’t give you much input on the meds. Please don’t ever feel guilty about taking the medication you need to control the PD. I suffered for years without them. I tried going to therapy and CBT  but nothing ever worked for me.  I’m considering asking my Dr about taking Klonopin. I’ve taken Xanax .5 mg PRN for the past 2 years. I’ve had PD since I was a child as well, but it was only 2 years ago that I decided to go to a Dr and ask for medication. You’re fortunate to have a supporting family and spouse. It’s much easier to deal with your PD if you know someone actually "believes" what’s going on. My husband always thought I was "making it up" until he saw our (at the time 4 yr old) daughter going through a PA. First he started to yell at her, then he saw the fear on her little face and said,"my God, what’s wrong with her?" Of course, I knew what was happening to her and told him. Then he felt awful for all those years of actually yelling at me to "knock off the bullsh*t" during my PA’s. Now whenever he witnesses one, he comes close to tears and tries everything he can to help. I can really relate to your comment on not being afraid to go out, but  being afraid of *having* to be somewhere for 8 hours. I have to return to work as soon as my daughter starts school, and I know I can only handle a few hours a day. That’s why I’m thinking about the Klonopin. I’m sure you’ll get a lot of helpful information from your post. I really learn a lot from here as long as I skip over the useless "wars" that go on. I don’t post here that often myself, but , what prompted me to was to congratulate you on your new baby boy!  And that I see you are a fellow BOSS fan! good luck with the little 3 month old "transition"!! (that’s a biggie isn’t it? LOL!) adp

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Question:

Ari, I wonder if he meant that hair loss is not an issue with SSRIs in general, or specifically not a problem with Zoloft?  If it’s the latter, maybe I’ll switch from Prozac, which seems to be causing some mild & subtle hair loss for me. But I do think that all SSRIs warn that it is a rare side effect. — Ari

I was pretty amazed to see all sorts of discussion lists on the web with lots of people saying that all sorts of different SSRIs were causing hair loss.  The two worst offenders seemed to be Paxil and Zoloft.  But Prozac was in there, too.  Now, maybe it was just that the people with the hair loss were posting, and actually very few people had hair loss.  But, from what I read (spent many hours reading all this stuff one night, all the while checking my hair to make sure it indeed still was up there), it seems to be more than rare. Matt

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Well, I logged in to post a question about hairloss with serzone.  I may be imagining it (but I don’t think so), but it seems my scalp has been itching more than usual since starting serzone, and after washing my hair I lose lots of hair (more than usual by about half).  Anyone else?

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I didn’t have much before I started Serzone! (8 ^O —— Ahhhhh! OH NO I’M BALD *Grin* But anything’s possible…. Cheers, Mike from OZ

– Hide quoted text — Show quoted text -Well, I logged in to post a question about hairloss with serzone.  I may be imagining it (but I don’t think so), but it seems my scalp has been itching more than usual since starting serzone, and after washing my hair I lose lots of hair (more than usual by about half).  Anyone else?

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– Hide quoted text — Show quoted text – Ari, I wonder if he meant that hair loss is not an issue with SSRIs in general, or specifically not a problem with Zoloft?  If it’s the latter, maybe I’ll switch from Prozac, which seems to be causing some mild & subtle hair loss for me. But I do think that all SSRIs warn that it is a rare side effect. — Ari I was pretty amazed to see all sorts of discussion lists on the web with lots of people saying that all sorts of different SSRIs were causing hair loss.  The two worst offenders seemed to be Paxil and Zoloft.  But Prozac was in there, too.  Now, maybe it was just that the people with the hair loss were posting, and actually very few people had hair loss.  But, from what I read (spent many hours reading all this stuff one night, all the while checking my hair to make sure it indeed still was up there), it seems to be more than rare. Matt

It’s too early to tell if it’s working, but I got myself on the same kind of vitamin regimen adopted by some depakote users.  The consensus on a few online forums seems that selenium and zinc (and to a lesser degree choline, inositol, vitamin B and folic acid) is sometimes useful for people on mood stabilizers (is that the right term?).  I have been taking them for two months, and perhaps there has been less hair loss recently (25 hairs/day versus 45), but it’s still early.  Mind you, my wife thinks I’m imagining things, but I have definitely noticed some subtle fallout since I began Prozac in November 97.  But at this point, since the hair loss is so mild, I prefer to stick with Prozac a bit longer; it works too well otherwise for me not to. Ari

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    Interesting, I know it can be a problem with depakote, but I haven’t heard of antidepressant doing it. Tim, Try an altavista with +hair +zoloft (or prozac or paxil or effexor, for that matter). Matt

I never had that problem when I was on zoloft but it is listed as a side effect. John

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– Hide quoted text — Show quoted text – : : I’m currently on Zoloft, and it’s working great for me. Some mild side : effects, but nothing I can’t live with. I haven’t noticed any hair loss : after five weeks, but then, I haven’t got much hair left to lose . : : I’m seeing my psychiatrist this afternoon. I’ll ask him how common this : problem is and get back to you. : : –Ed : Thanks Ed–I look forward to the report. : Best, : Matt Matt, According to my doc (who’s a good guy, very smart), hair loss is *not* a side effect of Zoloft. It is with other meds (which, he didn’t say), but not with this one. I can see it now: TV ads for Zoloft which proclaim, "With Zoloft, your hair is safe!" –Ed

I wonder if he meant that hair loss is not an issue with SSRIs in general, or specifically not a problem with Zoloft?  If it’s the latter, maybe I’ll switch from Prozac, which seems to be causing some mild & subtle hair loss for me. But I do think that all SSRIs warn that it is a rare side effect. — Ari

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Have any of you had any hair loss/thinning with zoloft? Thanks Matt

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Have any of you had any hair loss/thinning with zoloft? I wouldn’t rule it out, Matt – I’ve certainly heard of it with Serzone. — Gary Cooper

So it looks like just about all of the new antidepressants can do this–I know that Effexor and the SSRIs can have this effect.  Now Serzone too, eh? One thing that I don’t know is exactly how common this is with each; since I’m on Zoloft I was interested in hearing other’s experiences with this drug. Thanks Matt

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Have any of you had any hair loss/thinning with zoloft?

I wouldn’t rule it out, Matt – I’ve certainly heard of it with Serzone. — Gary Cooper

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: So it looks like just about all of the new antidepressants can do this–I : know that Effexor and the SSRIs can have this effect.  Now Serzone too, : eh? : One thing that I don’t know is exactly how common this is with each; since : I’m on Zoloft I was interested in hearing other’s experiences with this : drug. : Thanks : Matt Hi Matt, I’m currently on Zoloft, and it’s working great for me. Some mild side effects, but nothing I can’t live with. I haven’t noticed any hair loss after five weeks, but then, I haven’t got much hair left to lose . I’m seeing my psychiatrist this afternoon. I’ll ask him how common this problem is and get back to you. –Ed

Response:

I’m currently on Zoloft, and it’s working great for me. Some mild side effects, but nothing I can’t live with. I haven’t noticed any hair loss after five weeks, but then, I haven’t got much hair left to lose . I’m seeing my psychiatrist this afternoon. I’ll ask him how common this problem is and get back to you. –Ed

Thanks Ed–I look forward to the report. Best, Matt

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- Hide quoted text — Show quoted text – I’m currently on Zoloft, and it’s working great for me. Some mild side effects, but nothing I can’t live with. I haven’t noticed any hair loss after five weeks, but then, I haven’t got much hair left to lose . I’m seeing my psychiatrist this afternoon. I’ll ask him how common this problem is and get back to you. –Ed Thanks Ed–I look forward to the report. Best, Matt

    Interesting, I know it can be a problem with depakote, but I haven’t heard of antidepressant doing it.

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: : I’m currently on Zoloft, and it’s working great for me. Some mild side : effects, but nothing I can’t live with. I haven’t noticed any hair loss : after five weeks, but then, I haven’t got much hair left to lose . : : I’m seeing my psychiatrist this afternoon. I’ll ask him how common this : problem is and get back to you. : : –Ed : Thanks Ed–I look forward to the report. : Best, : Matt Matt, According to my doc (who’s a good guy, very smart), hair loss is *not* a side effect of Zoloft. It is with other meds (which, he didn’t say), but not with this one. I can see it now: TV ads for Zoloft which proclaim, "With Zoloft, your hair is safe!" –Ed

Response:

    Interesting, I know it can be a problem with depakote, but I haven’t heard of antidepressant doing it.

Tim, Try an altavista with +hair +zoloft (or prozac or paxil or effexor, for that matter). Matt

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Question:

I sure do know about those meetings with the stone faced and tight lipped teachers and the tables like aircraft carriers!!!

George and Cathi- I know about these too.  I get anxious every time I walk into my son’s school (which is every day to pick him up) when the teachers accost me.  It is always them against me.  And I say to myself, if this is how I feel, imagine how my child must feel!     Judy

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Why is it that the educators are so slow when it comes to Tourette’s and ADD. Why can’t they understand it? One produces books, papers, professional educational advocates and testers, neurologists and psychopharmacologists to explain it to them , and they still don’t get it. Why is there no accountbility in our educational system? Does the American Civil Disabities act address discrimination against the handicapped in our public school ?                                               Dr. George

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I have a unique perspective of this being both a teacher and a mother of a child with TS.  In college, a BA and a MA degree, I never learned one bit about TS or ADD.  Everything I know I learned on my own as I had to deal with students with ADD and now my TS son.  As educators, we walk a very find line.  The law says we have to educate everyone.  The problem is these children can be very disruptive in a classroom.  Then the parents of the other children complain.  It is very difficult to keep all of the parents happy.  In a large school, children who do not succeed in one classroom can always change to another.  In the school where I teach, there is only one class of 5th grade.  There also are no private schools. Again, if you have problems contact the Office of Civil Rights.  They are the branch that investivates and doles out punishment for schools that violate children’s civil rights.  All of these services are FREE.  Contact them through a hotline for the handicapped or your state education department.  

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"They" don’t get it….unless "they" have to…or, perchance, "they" are among the more compassionate, devoted, and tireless (of which there ARE many). Good rule of thumb..don’t assume that all "professionals" are humanists. Take charge of your own destiny..and make certain that "they" have what "they" need to treat you, and your children, correctly. If they don’t, see that they do. One way or another. KAT in CT In <4frn9a$…@newsbf02.news.aol.com

drgeor1…@aol.com (DrGeor107a)

writes:

Why is it that the educators are so slow when it comes to Tourette’s

and

ADD. Why can’t they understand it? One produces books, papers, professional educational advocates and testers, neurologists and

psychopharmacologists – Hide quoted text — Show quoted text -

to explain it to them , and they still don’t get it. Why is there no accountbility in our educational system? Does the American Civil Disabities act address discrimination against the handicapped in our public school ?                                              Dr. George

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darc…@aol.com (DarcieG) wrote:

The problem is these children can be very disruptive   in a classroom.  Then the parents of the other children   complain.  It is very difficult to keep all of the parents   happy.

Yup. Consider the mother of two sons, one tourettic, the other "normal". Her normal boy is in a classroom with a   severly disabled student who needs constant attention; her tourettic boy is disrupting his own class. She’s experiencing it from both perspectives. It is hard to find the philosophical middle ground. I was a difficult, disruptive student, back in the bad old pre-LD, pre-TS days of the 50’s and 60’s.   My sisters and my father (all educators) glare at me when I say this, but I have long favored the so-called voucher plan where the government gives the parent of each child a voucher valid for education. It’s up to the parent to match the school to the child.   With a diagnosis of TS and what we know now, I would have done   well in a small private school, considerably better than I did in huge public schools. In the larger cities at least, there is the critical mass of special students necessary to support such schools; the public system, however, is inescapably (and often necessarily) mired in a slow moving, slowly reacting, and   frequently unresponsive bureaucracy. Nobody, including the parents of "normal" children seems happy with the US public school system. (But consider our non-US readers, from South Africa, Canada, Ireland or Israel, dealing   with radically different systems of public education; we   actually have it pretty good in the US).   — Mark Odegard         mlom…@nyc.pipeline.com

Response:

It is not fair to generalize about educators . I have found that they are very willing to learn about Tourett’s and will try to make adaptations in their programs. Of course, not all educators are "open" but neither are they all "closed". Educators are facing many more challenges in the classroom right now. Public support is most important. I provide a package of materials for teachers and other people working with my daughter. I also make myself available to the teachers. I also speak to groups of teachers in inservice situation.                                      Regards, Ramona Jennex Williams

Response:

In article <4fqhv3$…@newsbf02.news.aol.com, heyjud…@aol.com (HeyJude49) writes: (written by someone else) I sure do know about those meetings with the stone faced and tight lipped teachers and the tables like aircraft carriers!!! What a great analogy!  I have a follow up meeting tomorrow with Jason’s teachers.  I wonder if I should prepare an opening joke <G. Bonnie Grimaldi   in Columbus, Ohio

WhatEVER you do, don’t wear that T-shirt with the big red sun on it….in light of an earlier post I saw here today, it could be somewhat counterproductive!! (sorry, ya’ll…..I’m losing it this A.M.) KAT in CT

Response:

kat, whata great idea. Mike can wear his "we tic together" shirt, I’ll wear the tourette athletic dept shirt and Neal can wear a TS shirt to our IEP review and transition meeting on Wednesday.  I stopped by our dept.of rehab. services to ask about more info for transitioning kids and getting him in the VECTOR program. Turns out the gal who works with hios high school had been complaining that she notifies the high school several times a year that she is available for transition meeting and they have NEVER called her. Well, I left a note inviting her to his meeting. If she comes, as well as the PACER advocate, we will have some good moral support for Neal. he is nervous about the meeting as the last one, he was seated in back of all the adults at the table and it was a major bashing session on how he needs to do better, if they write an IEP and make all these accomidations for him, they expect him to do better (might help if they followed the IEP). They were also on him about regardless of his "handicapping conditions" (I hate that phrase as much as on task and focused) he cannot miss school. I am hoping for a good positive meeting this time with advocates there to keep the school on the straight and narrow and as a backup for us (we make excuses, are overprotective, don’t push him enough,etc. -and besides that, I know too much!)  Pat

Response:

In <312879F3.4…@metvax.metro.msus.edu

Pat Rummenie

<rumme…@metvax.metro.msus.edu

writes:

 we will have some good moral

support for Neal. he is nervous about the meeting as the last one, he

was

seated in back of all the adults at the table and it was a major

bashing

session on how he needs to do better, if they write an IEP and make

all

these accomidations for him, they expect him to do better (might help

if

they followed the IEP). They were also on him about regardless of his "handicapping conditions"

Ethologists have known for some time now that one of the things that causes "higher animals" such terrific grief and stress is the feeling of loss of control. Picture this: a kid, about half the size and age of the roomful of "grownups" sitting in the back of the room, facing a desk that looks like "an aircraft carrier" (great metaphor, by the way!), waiting to hear what those "grownups" are going to decide to do with his life for the next few years..or longer. If he speaks up, he’s being "out of control, impertinent, willful" etc. If he doesn’t, he’s at risk of finding all his decisions made for him..whether he likes them or not. Either way, he loses. Talk about "loss of control." Is it any wonder then, that our kids go off the wall when they get home, out of school, and out of the straightjacket imposed by society’s "rules of order?" I think not. To me, it seems all perfectly logical. To wit: how many of "our" kids do MUCH better in the summer time…when time and circumstances allow them to be in more control of their own, immediate destinies? Food for thought…at the very least. KAT in CT

Response:

I am hoping for a good positive meeting this time with advocates there to keep the school on the straight and narrow and as a backup for us (we make excuses, are overprotective, don’t push him enough,etc. -and besides that, I know too much!)  Pat

Good luck at your meeting.  Know that there is a group of people out here rooting for you.    Judy

Response:

    Gosh, Pat, does Neal have to be in the room when all of the decisions are made?  That’s enough to make any adult nervous, let alone one of our TS kids.  Does Neal have to put his hand over his heart and promise to …………..? I consider this cruel and usual punishment.  No wonder he is nervous.  I’m nervous for him. I would think this is very counter productive.     I agree with KAT’s wonderful objectivity.  She is always right on.       Good luck.  Let us know what happens.                           Karen in Ohio  

Response:

One approach that should alleviate a lot of school adjustment problems,  is the evolution of more and more long-distance learning technology.   I am right now working on a possible book proposal to write a book to help teachers understand how to use HTML FORMS and CGI scripts,   to develop their course outlines and lesson plans.   Any of the home schooling or long-distance learning technologies might be the answer for lots of these children who just don’t fit the classroom attendance model. I know that this is not much of an answer for right now,  but there is always another approach,  on the horizon.

Response:

In article <312879F3.4…@metvax.metro.msus.edu

, Pat Rummenie

<rumme…@metvax.metro.msus.edu

writes: "handicapping conditions" (I hate that phrase as much as on task and focused) … (we make excuses, are overprotective, don’t push him enough,etc. -and besides that, I know too much!)  Pat

I could have written those words myself, Pat. Sure you haven’t been coming to our meetings??? I wish you a positive meeting (although the school may be on the defensive with advocates present, but hopefully they will also be careful!). I’ve been to enough meetings to last several lifetimes, so you’ve got a sympathetic mom here! So hope it’s a good one, and don’t forget to treat yourself afterwards!!! (I went for a chocolate cream cheese brownie after my last meeting!) Cathi

Response:

Good luck at your meeting.  Know that there is a group of people out here rooting for you.    Judy               Ditto!                       Dr. George

Response:

George- I sure do know about those meetings with the stone faced and tight lipped teachers and the tables like aircraft carriers!!! We have a "team meeting" like this every week! I dread them. You would think I could handle them, because in "my other life" I am a special ed teacher, but when it’s my own child, it’s a whole different world. But I can offer you sympathy, as another parent in a similar boat. At a recent meeting, an administrator told me "Well, he may have Tourette’s, but this is PURPOSEFUL behavior we are talking about."   <Sigh

 I have shared handouts, research articles, books, etc on TS. I’ve

had our physician attend meetings. And here we still are. (Ideas and advice are always welcome, if any of you have any suggestions!) Please keep on posting about your son. And hang in there. Feel free to e-mail if you’d like. Cathi in Vermont In article <4fm7tr$…@newsbf02.news.aol.com

, drgeor1…@aol.com

– Hide quoted text — Show quoted text -(DrGeor107a) writes:

I live in a rural town in Massachussetts and have read most of the books on ADD and Tourette’s. My son is on Ritalin ( a low dose because it brings out the ticks) and Nortryptiline.  He suffers from Tourette’s ,

OCD

, ADD , Sensory Integration with touch defensiveness, Dislexia , and has an essential tremor which effects his writing ability. Yet he is

extremely

bright . The school system has responded by keeping him back a year, trying to label him as an emotional problem and basically stonewalling us the whole way. This is a battle my wife and I have been fighting with

them

for years and getting no where.         Most of the hospital centers are great at diagnosing the problem but have no real delivery system for aiding one in dealing with the schools for services. The school makes no effort to inform us of any services for this condition. Our child is the first in the system to have Tourette’s and he is being discriminated against because of it.  I have just hired a professional advocate and a laywer to deal with the school system because I can not take walking into these parent teachers conferences having to face 15 – 20 educators siting stone face and tight lipped around a table that looks more like the deck of an aircraft carrier, saying absolutely nothing other than your child is a slow

learner

and we need to place him in an inclusion class with other slow learners. When told that he is not learning because he is bored out of his mind and that he is two to three grade levels above the other children in math and science and merely has a languaged based processing problem, they fail to respond. We have been going around on this for years , meanwhile my son has become depressed and withdrawn because of the constant teasing and chastisement by the teachers and other students. I am hoping that the advocate can steer us in the right direction , but as with all other professionals we have to wait a month or two because of the back load of people she has to deal with. Got any suggestions?                                     Dr. George

Response:

Dr. George, Many of us can relate to the heartbrake that you and your wife are experiencing.  You need to take action.  Your school is not living in the nineties or even the seventies!  Someone, perhaps your son’s doc. must explain to them that they are doing the worst possible thing for him!  If he’s not being treated by a competent pediatric neurologist, find one fast.  He may very well respond to medication as both of my kids have. The process may be long and difficult but you have to find the right med. or combination.  Insurance companies will reimburse most of your medical expenses.  I don’t know what state you live in, but in most cicilized communities, your school system should be able to help.  You’ve got to get to know the system. Also, stay tuned to here to get some good advise as many of us here have.  You didn’t get into details as far as what paths you have taken, but there are ways to get help for your son.  You and your wife have got to be optimistic.  Good luck.

Response:

     Here is a poem my wife wrote about our son. We are currently experiencing difficulties in the public school system , which has responded to the diagnosis of Tourette’s simply  by hiring an aid to sit behind our son to tell him to stop his ticks everytime he does it. They refuse to believe they are not voluntary behaviors despite being told by a Neurologist.  His current ticks are rocking and picking his nose . Naturally his ticks are becoming worse and the town refuses to respond to his special needs. Meanwhile all our monies are being drained on doctors , lawyers , eductional advocates, with no end in sight. How can this type of ignorance still exist in the nineties?                                      Dr. George                Chris The children call him a tard, life for my son has been hard. Their words burn in his ears. He turns inwards to hide the tears. Rock back and fourth in his pain, people treat him with disdain. They talk to him real slow. It makes him want to get up and go. My son pulls out all his hair, he has to snort, burp,  and swear. If you look at him in the eye makes him feel like he’d die. In sadness he sinks all alone A boy’s heart, heavy as a stone. He’s different from us, can’t you see? He has Tourette’s syndrome and A.D.D. Body and mind in constant motion gentle spirit grows in the commotion. God give him strength I pray, he will be happy someday.                                        by Millie

Response:

    I live in a rural town in Massachussetts and have read most of the books on ADD and Tourette’s. My son is on Ritalin ( a low dose because it brings out the ticks) and Nortryptiline.  He suffers from Tourette’s , OCD , ADD , Sensory Integration with touch defensiveness, Dislexia , and has an essential tremor which effects his writing ability. Yet he is extremely bright . The school system has responded by keeping him back a year, trying to label him as an emotional problem and basically stonewalling us the whole way. This is a battle my wife and I have been fighting with them for years and getting no where.          Most of the hospital centers are great at diagnosing the problem but have no real delivery system for aiding one in dealing with the schools for services. The school makes no effort to inform us of any services for this condition. Our child is the first in the system to have Tourette’s and he is being discriminated against because of it.  I have just hired a professional advocate and a laywer to deal with the school system because I can not take walking into these parent teachers conferences having to face 15 – 20 educators siting stone face and tight lipped around a table that looks more like the deck of an aircraft carrier, saying absolutely nothing other than your child is a slow learner and we need to place him in an inclusion class with other slow learners. When told that he is not learning because he is bored out of his mind and that he is two to three grade levels above the other children in math and science and merely has a languaged based processing problem, they fail to respond. We have been going around on this for years , meanwhile my son has become depressed and withdrawn because of the constant teasing and chastisement by the teachers and other students. I am hoping that the advocate can steer us in the right direction , but as with all other professionals we have to wait a month or two because of the back load of people she has to deal with. Got any suggestions?                                      Dr. George

Response:

I am hoping that the advocate can steer us in the right direction , but as with all other professionals we have to wait a month or two because of the back load of people she has to deal with. Got any suggestions?

The frustration you experience as a result of dealing with the ignorance and hostility of the school system can be overwhelming- I know.  As you anticipate, an impartial outsider who truly understands both TS and the school system may be able to help.  While you are waiting for the advocate to get involved, there are a number of options for you.  Some things to consider are:  enlist the aid of a sympathetic legislator or other community member who has high esteem and/or power in the community (this worked  for us in getting the Committee on Special Education to listen to us); homeschool temporarily until the school makes the necessary educational modifications; give up on public education and opt for either private school or homeschooling.  Meanwhile, make sure you document every contact you have with the school system- keep written records on everything.  It is also necessary to have a doctor who will assist you with the educational problems associated with TS- you need to have a medical report that specifies the behaviors that your son has that are due to a neurological disorder (not emotional) and what educational modifications are necessary because of his neurological disorder.   Good luck-    Judy

Response:

Have you checked out your local office of civil rights (OCR).  As a parent of a special ed. student, you have a tremendous amount of backing.  They will file a lawsuit for you against the school at no cost to you.  But I warn you, teachers/adminstrators don’t like this and will act so coldly towards you that it could backfire.  Darcie

Response:

I live in Eastern Massachusetts. I prefer not give the name of my town because I don’t want my son persecuted any more than he already is. But any suggestions on how to deal with the school systems properly would be greatly appreciated. Feel free to E mail me too.                                Dr. George PS           I posted the poem in the hope that it would strengthen others. My prayers go out for all of you.

Response:

THis year’s

in late March, would be an excellent resource for you, your wife, and some of the educators (if they would go) in your school ;system.< Yes , I am signed up for this, have notified the school , and my newly hired advocate will come as well. She asked me to find a contact person from the Tourette’s support group who deals with school issues near the Worcester area. Can you E mail me who this would be?                            Dr. George

Response:

Ramona writes:

It is not fair to generalize about educators . I have found that they are very willing to learn about Tourett’s and will try to make adaptations in their programs. Of course, not all educators are "open" but neither are they all "closed". Educators are facing many more challenges in the classroom right now. Public support is most important

In the last four years, since my 11 yr old son’s TS symptoms were severe enough to interfere with his classroom behavior, he has had eight teachers (not counting music, art,  health, and gym, which he only has once or twice a week).  Four of them have been accepting, creative, took a positive approach to problem solving, and worked very well with my son. Two of the eight were bordering on abusive (name-calling, ridiculing, screaming) and refused to change their behavior.  The other two are misinformed  defensive and antagonistic, but are trying to be open-minded and are still approachable.   I don’t think anyone is saying all teachers are bad.  In our case, it has been 50%; that is a whopping high proportion.  Fair, you say?  In our district, the median teacher’s salary is $65,000.  These teachers have tenure, unlimited sick leave with pay,  health insurance completely paid for by the school district,  generous retirement plan.  Sorry, I do not support these teachers- they’re getting an awful lot for not doing their job.  BTW, I think the other 50% deserve everything they are getting and more.    Judy Simon

Response: