Question:

Is there any correlation between weight gain and certain asthma medicines like Accolate or singulair.  I know prednisone makes you retain water when you are on it, but does it have longterm side effects in this area, even if one is only on it for a brief period of time at a low dosage?

Response:

Hi Stephanie, I have found a correlation (whether there supposed to be one or not!).  I asked my primary care doc’s nurse, (who is asthmatic and goes to my asthma doc) if she experienced wt. gain also and she said yes, pretty much in hips and thighs…all since taking Accolate.  I also noticed a wee bit of fluid retention after I started Flovent. Patrice – Hide quoted text — Show quoted text – Is there any correlation between weight gain and certain asthma medicines like Accolate or singulair.  I know prednisone makes you retain water when you are on it, but does it have longterm side effects in this area, even if one is only on it for a brief period of time at a low dosage?

Response:

Hi Stephanie, I have found a correlation (whether there supposed to be one or not!).

Isn’t this Testimonial evidence?  A correlation is a Statistical property of a data set, it is defined by the ‘r’ value among others.  Be careful or Diane will jump all over you!  : )

Response:

Do you have something better to add? – Hide quoted text — Show quoted text – Hi Stephanie, I have found a correlation (whether there supposed to be one or not!). Isn’t this Testimonial evidence?  A correlation is a Statistical property of a data set, it is defined by the ‘r’ value among others.  Be careful or Diane will jump all over you!  : )

Response:

Ah ha!  The ‘r’ value in my correlation must mean the opposite of front end! ) Patrice – Hide quoted text — Show quoted text – Hi Stephanie, I have found a correlation (whether there supposed to be one or not!). Isn’t this Testimonial evidence?  A correlation is a Statistical property of a data set, it is defined by the ‘r’ value among others.  Be careful or Diane will jump all over you!  : )

Response:

I have been on prednisone and i am life dependant.  I have a lot of problems with weight gain.  I also took Accolate but got off of it because it did nothing for me.  I am on flovent and see no change in my weight from that.  A lot of medications make you hungry when your dose goes up.  so you have to watch that.  Good Luck * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

I have been on prednisone and i am life dependant.  I have a lot of problems with weight gain.  I also took Accolate but got off of it because it did nothing for me.  I am on flovent and see no change in my weight from that.  A lot of medications make you hungry when your dose goes up.  so you have to watch that

I have had the exact same experience.  I have been dependent on prednisone for about 5 years now, and have had major weight gain.  My doc tells me to eat the way I would if dieting would actually work (low fat, lots of lean meat, fruit and veggies) so that at least I will be healthy.  She has always been very good and understanding with the weight issue.  My hardest part is the frustration. I also tried Accolate and it didnt help much. I also agree about the increase in appetite! It is another part of the frustration.  You are always hungry and you try not to eat because you dont want to gain any MORE weight.  As if having severe asthma wasn’t bad enough! Life is uncertain – eat dessert first. Nancy 8=: )

Response:

I am so glad to find someone who is in my position.  I am also a diabetic and I am on a strick diet.  I take insulin 3 timess a day plus check my sugar 4 times a day.  They that diabetics are skinny I think someone forgot to tell me.  I have a great doctor too about my weight.  Do you have any exersizes that you do or can do besides walking.  I can bearly make it up the stairs. Are you on anyother medications?  I have been on prednisone for about 10 years now.  What dosages are you on? * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

Do you have any exersizes that you do or can do besides walking.  I can bearly make it up the stairs. Are you on anyother medications?  I have been on prednisone for about 10 years now.  What dosages are you on?

Hiya – Right now I am on 20mg and that seems to be as low as I can go without having an attack.  But recently around Christmas I was very ill with bronchitis (it was starting to turn into pneumonia) and I was on 90mg prednisone, and had to taper down from that. I have been "forcing" myself to move more.  I got a 20 minute Richard Simmons videotape (OK, now stop giggling!).  What my doc suggested is that I go as far as I can until I start to feel uncomfortable, then stop.  When I can – resume again.  Anything is better than nothing.  It took me 5 tries to get through the tape the first time, but VERY slowly, it is starting to become easier. Of course, if you are not OK, you dont do it, you have to know how you feel. My doc has been great about the weight problem, she has helped me try to deal with the frustration of doing the right things and getting no results.  Keep your chin up! Life is uncertain – eat dessert first. Nancy 8=: )

Response:

Right now I am on 15mg daily.  I was able to get down to 15mg from 30mg only by taking Methotrexate.  Its a cancer drug but it worked.  I was on it for about 5 years.  When I first went on it I lost my hair because it is a chemo drug and I thru up also. My dooctor is trying to get me down farther but nothing has worked.  So now we are trying cutting 2.5mg every two days.  I can’t start this until I get back from my vacation in April. Right now I am fighting with a cold that is soon going to be bronchitus.  I hate being sick.  I am also being put on the Med. Pump for my diabetes.  Did you get any side effects from the prednisone.  I did I look like I am 8 months preg. and I ended up with diabetes.  I have to take 4 shots a day so they are going to put me on the pump.  What fun!!!! * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

Did you get any side effects from the prednisone.  I did I look like I am 8 months preg. and I ended up with diabetes.  

Does the prednisone cause the diabetes?? My 16 yr old daughter is steroid dependent and stays on what seems to be relatively high doses most of the time. Her Dr. isn’t happy about this , but says she has to breathe. However he never mentioned diabetes as a possible effect.

Response:

Did you get any side effects from the prednisone.  I did I look like I am 8 months preg. and I ended up with diabetes.   Does the prednisone cause the diabetes?? My 16 yr old daughter is steroid dependent and stays on what seems to be relatively high doses most of the time. Her Dr. isn’t happy about this , but says she has to breathe. However he never mentioned diabetes as a possible effect.

Diabetes is one possible side effect of long term use of oral steroids. You can look up the side effects in the Physicians Desk Reference [PDR] that most public libraries carry. Link: http://www.rxlist.com/cgi/generic/pred.htm click on Adverse Effects Excerpt: "Adverse Effects Endocrine: Menstrual irregularities; Development of Cushingoid state; Secondary adrenocortical and pituitary unresponsiveness, particularly in times of stress, as in trauma, surgery or illness; Suppression of growth in children; Decreased carbohydrate tolerance; Manifestations of latent diabetes mellitus; Increased requirements for insulin or oral hypoglycemic agents in diabetics" Ellis — Free audio & video emails, greeting cards and forums Talkway – http://www.talkway.com – Talk more ways (sm)

Response:

Right now I am on 15mg daily.  I was able to get down to 15mg from 30mg only by taking Methotrexate.  Its a cancer drug but it worked.  I was on it for about 5 years.  When I first went on it I lost my hair because it is a chemo drug and I thru up also. My dooctor is trying to get me down farther but nothing has worked.  So now we are trying cutting 2.5mg every two days.  I can’t start this until I get back from my vacation in April. Right now I am fighting with a cold that is soon going to be bronchitus.  I hate being sick.  I am also being put on the Med. Pump for my diabetes.  Did you get any side effects from the prednisone.  I did I look like I am 8 months preg. and I ended up with diabetes.  I have to take 4 shots a day so they are going to put me on the pump.  What fun!!!!

The usual protocol for tapering steroids is to reduce to 15 mg/day; then go on alternate day therapy at 30 mg every other day; then very slowly reduce the dose down to 5 mg every other day and then go off steroids. Using alternate day therapy is important to stimulate the adrenal gland to start producing cortisone again. Ref: ‘Reversing Asthma’, Richard Firshein DO Ellis — Free audio & video emails, greeting cards and forums Talkway – http://www.talkway.com – Talk more ways (sm)

Response:

Hiya – I am also on methotrexate.  It too has caused me to really thin out my hair and I am very nauseaus (sp?) on the first two days of the week when I take it. My side effects from prednisone have included a dramatic weight gain, and more hair thinning.  My sugar does not go up unless I am on IV solumedrol in the hospital.  Sometimes I have to receive insulin while I am there to control it. But my blood sugar is normally on the very low side, so the orals don’t effect me too much. My doctor also tapers me the way yours does.  She has to be very careful with me, and sometimes we have tapered as slowly as .05mg every 3-4 days.  I have not been able to successfully go down past 20mg without getting sick.  The ONLY time I could was when I was in the test study for mometazone – I was on .05mg of prednisone a day and about to be steroid free, but the study ended and I had to go back up.  Mometazone is supposed to be released in the US by September hopefully.  I dont know if it will work for you (and I sincerely hope it will) but it was a miracle inhaler for me.  I took it in place of Flovent and I was almost steroid free for the first time in 5 years.   If I hadnt told you before, I am 31, and a former professional chef.  I have been on disability for asthma for almost 3 years now – and I am DYING to get back to work. My regimen is: Proventil, Flovent, Serevent, Methotrexate, Prednisone, ClaritinD, and Prilosec (because all the damn meds gives me reflux!). I hope that we can continue to correspond to each other – we have similar lives it seems!! Life is uncertain – eat dessert first. Nancy 8=: )

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I am 39 a legal secretary I just started back to work after not working for several years I only work 31/2 hours a day.  Social security says I am cured and cut me off.  I went to see their doctors and I was having a good day my breathing was great and when I took a breathing test I did really good.  Of course by the next day I could barely breath. I am on Theo-dur, prednisone, flovent, ventolin, insulin.  I am now sick and have a very bad cold I have to call the doctor tomorrow. It does sound like our lives are about the same.  Are you married?  Do you have any kids?  I am married I have been for 18 years.  I have 4 kids.  All teenagers.  My husband is great about me not feeling that great.  I usually come home from work and take a nap until the kids come home from school. I hope that we can keep in touch where do you live?  I live in upstate New York. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

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i tried to go off of prednisone by doing exactly how you described but it does not work I always ended in the hospital. So now we are going to try this way first. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

Hiya – I live in the Riverdale section of the Bronx, the border between the north bronx and Manhattan.  Nope, Im not married – first I was working too many hours, then I got too sick to go anywhere.  So I live with my Mom so Im not alone in case I get sick. You really do have to be careful tapering the steroids.  It has been my experience that even .05mg too low and you can have serious problems.  If you are lucky,  and you have a good doc, you know how to tell you are going to have trouble BEFORE you actually have it. I also hope we can continue to correspond!! Life is uncertain – eat dessert first. Nancy 8=: )

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right now I am fighting off a major cold.  I have been home sick from work.  I think it is good that you live with someone because we need someone to help us once in a while.  I bet your mother likes having you around.  I know my husband and kids help me out alot when I get really sick.  I have to get better before april 13 because we are taking our kids on a family vacation before two of them go off to college.  My doctors and I are looking into putting me on pump for my diabetes and they say that I will gain weight from that.  do you get people that don’t believe you that your weight gain is from the meds?  I hate that.  How much methotrexate are you on?  Keep smiling and remember nothing lasts forever.  My favorite saying is Take one day at a time.  that is exactly what we have to do. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

Hi,      It would appear I fit in quite well with this group.  I have severe asthma the chronic facial pain resulted from root canal in 1993.  I am 42 and have been on SSDI since last September although I have been unable to work since last March.  I had been employed since 1986 as a manager for an insurance agency – a job I really liked and had worked hard for my promotions. My asthma began to  deteriorate in last January – I was hospitalized four times last year – twice for pneumonia/asthma & twice for severe asthma attacks.  I have been steroid dependent for well over a year, however, I am trying to taper down slowly.  Unfortunately I have gained an excessive amount of weight – I look in the mirror & don’t recognize the person staring back.  Currently my meds are Theo-dur 450 mg x 2, Accolate 20 mg x 2, Serevent 2 puffs x 2, Flovent 2 puffs x 4, Prevacid 30 mg x 2, Albuterol Sulfate .083% nebulizer treatments q 4-6 hrs prn, Oxygen 3.5 lpm (or higher if needed), Allegra D, prednisone 20 – 40 mg tapering down as tolerated, Methadone 70 mg x 2 (for severe chronic facial pain),  valium 5 mg prn (works well to stop the albuterol/theo-dur shakes if needed), and  finally phenergan 25mg suppositories for nausea prn.  Also, I developed lymphedema in both legs so I have just completed a 6 week course of therapy with the compression bandages, massage, and lasix.  There are some days when it is extremely hard to try & maintain a positive attitude. I am fortunate to have a supportive husband, family, and friends.   My pulmonologist had suggested a trial of metotrexate, however, I am somewhat apprehensive to try.  It seems like I already have enough "side effects" from my other meds to add any addtional ones.        I have found it to be very supportive to talk to others with similar problems – please feel free to e-mail back. Deborah Deborah

Response:

My pulmonologist had suggested a trial of metotrexate, however, I am somewhat apprehensive to try.

Hiya – I cant say positively how the methotrexate would react with your meds, but it has really worked for me.   My current regimen is: Proventil Inhaler as needed, Proventil nebulizer as needed, Serevent 2 puff 2xday, Flovent 2puff 2x day, Prednisone – 20mg, Claritin D-24, Prilosec (for reflux), and the methotrexate. With Methotrexate you have to have a liver function test once a month to make sure your liver is OK.  Other than that, and nausea on my first day, I have no other symptoms or side effects.  It has really helped me while I am waiting for Mometasone to be approved by the FDA.  I did the trial study on that and I was totally OFF prednisone for the first time in years. I, too, have had the massive weight gain, and hair loss from the steroids. When people question me on it, I look them square in the eye and say "I’d rather be fat than not breathe".  They usually dont know what to say after that.  :) Life is uncertain – eat dessert first. Nancy 8=: )

Response:

With Methotrexate you have to have a liver function test once a month to make sure your liver is OK.  Other than that, and nausea on my first day, I have no other symptoms or side effects.  It has really helped me while I am waiting for Mometasone to be approved by the FDA.  I did the trial study on that and I was totally OFF prednisone for the first time in years.

Hi Nancy,       How does the Methotrexate work to improve your asthma? Also, what is Mometasone?  I have been reading about anti -IgE injections which seem promising in the current trials.  Researchers have indicated this drug stops the asthma attacks in adults & children without major side effects.  The drug has not been approved by the FDA, however, it could be approved within a year or two. (hopefully one year)        I like your response regarding excessive weight gain – still, there are so many people (like friends & previous co-workers) with absolutely no idea as to the side effects of prednisone.  I know the added weight adds an additional strain on my heart & lungs, however, I have determined that with my slow metabolism (from the strong narcotics for facial pain) and the increase in appetite  from prednisone – I would have to "starve" to lose even a few pounds.  As for exercise, I have been reduced to a wheelchair on some days due to SOB.      Thanks for your response – keep in touch.   Take care, Deborah

Response:

Hi Deborah – How does the Methotrexate work to improve your asthma?

To be honest, Im not totally sure.  My doc suggested it, as my other regimen wasn’t working, my pulmonary functions were still pretty low.  I take 7 pills once a week.  I believe that it is a cancer drug and used in chemotherapy.  I think it has to do with anti-inflammatory properties, but again, Im really not sure. Im going to the doc tomorrow, and I will ask her. Also, what is Mometasone?

Mometasone was an inhaled steroid that I was in the test group for.  I used it over last winter and summer and I was totally OFF prednisone for the first time in 3 years.  It is currently waiting for FDA approval.  This was a lifesaver for me.  Flovent helps me somewhat, but even with Flovent AND methotrexate I cant go below 20mg of prednisone without getting an attack. I have been reading about anti -IgE injections which seem promising in the current trials.  Researchers have indicated this drug stops the asthma attacks in adults & children without major side effects.

Sounds very interesting.  I will be asking her about that too.  My doc is very big into research and she usually knows all about this stuff. Believe me, I know how you feel with the weight gain, and not being able to help yourself with it.  It is a vicious circle we run in.  The steroids make you gain weight, the weight makes your asthma worse, which makes you need more steroids, etc etc. Yes, I have run into people, yes including family, who either dont believe or really dont understand that the weight gain is from the steroids.  EVEN when you can see my thinning hair!!  What, Im just unlucky, im fat and losing my hair??? I dont think so! I will share with you what my doctor told me.  She told me to follow an eating plan that I would follow if I WAS able to lose weight.  (I, personally, find Weight Watchers to be the best plan).  Her theory is that you should eat right, low fat, low sugar and even though you wont lose weight NOW, you will when you can go down on the steroids, and you will be keeping yourself HEALTHY (nutrition wise), which is more important. Then, if you DO either get off the steroids or go on a low dose, you will already have great eating habits!  I still go to the WW meetings when I can, and the leader has been really helpful.  She knows the situation and has even talked to my doctor. She knows how frustrated I get, and celebrates the tiniest weight loss with me!! I hope this info has helped you, and I hope you get better!! Life is uncertain – eat dessert first. Nancy 8=: )

Response:

Hi guys,    I am just tapering down from 180mg of prednisone.  I just got out of the hospital.  I have to say I even lost weight.  I was put on a 1200 calorie diet, low carb and low fat because of the diabetes, the more I taper the more weight I lose.  I also took Chefck advice and bought an exercise tape and do what I can. some days its only working with the weights other days I just watch.  I know eventually I will end up in a wheelchair because omy bone density is getting worse.  But I am going to go down fighting.  So do not give up. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

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Question:

Anyway, I have noticed since I have been on the inhalers, intal and azmacort both 2 puffs 3 times a day, I seem to get periods of overheating and sweating.  

I dont know if this is so much an effect of the meds, as it is an effect of the asthma.  After all, you are WORKING at breathing more than a non asthmatic.  I have noticed, though, that my menstrual hot flashes are rather severe, and seem especially bad if I am wheezing. Jennifer

Response:

- Hide quoted text — Show quoted text – I was recently diagnosed with Asthma (1 month ago).  I had symptoms for approximately 6 months prior and finally went to a doctor when I woke up one night and could barely get a breath. (I used my wife’s proventil inhaler and was able to breathe again – she also has asthma). Anyway, I have noticed since I have been on the inhalers, intal and azmacort both 2 puffs 3 times a day, I seem to get periods of overheating and sweating.  The only relation to exertion is that when I do exert myself, the overheating and sweating increases significantly. My wife has also suffered from these "sweats" for the last couple of years.  She is on azmacort and servent. Is this a side effect of these two medications or one of the medications or is it just one more thing I and my wife have to deal with that goes along with being an asthmatic?  Any thoughts would be appreciated. John The road to wisdom begins somewhere! I tried Flovent and did not like it.  It did not seem to work as well as

Beconase. P. Upchurch

Response:

I was recently diagnosed with Asthma (1 month ago).  I had symptoms for approximately 6 months prior and finally went to a doctor when I woke up one night and could barely get a breath. (I used my wife’s proventil inhaler and was able to breathe again – she also has asthma).   Anyway, I have noticed since I have been on the inhalers, intal and azmacort both 2 puffs 3 times a day, I seem to get periods of overheating and sweating.  The only relation to exertion is that when I do exert myself, the overheating and sweating increases significantly. My wife has also suffered from these "sweats" for the last couple of years.  She is on azmacort and servent. Is this a side effect of these two medications or one of the medications or is it just one more thing I and my wife have to deal with that goes along with being an asthmatic?  Any thoughts would be appreciated. John The road to wisdom begins somewhere!

Response:

Hot flashes do occur in some people using these medicines.  In recent years asthma has been found to be related to the adrenal gland and the release of adrenalin.  It happens to me occassionally but I always attributed it to the Azmacort I use.  Hope this helps.

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Question:

I don’t know if it is because of Advair or not, but my father went into V-Fib 1 month after taking advair. He was very happy with the way he felt being on Advair, but never mentioned anything about the warnings. I just noticed that the warnings say that Advair can change heart rhythm.  That is exactly what happened to my father.  He never had heart problems before, in fact, his Dr has commented before that he has a very strong heart. I’m not sure where to go with this.  I just want to make sure that everyone takes these warnings seriously. Please be careful.  Having this happen to my father has been very difficult. Dave

Response:

It may have been a cumulative effect was he taking something else before Advair. Many asthma sufferers take a form of steroids and albuterol and heart problems are frequent. My best wishes to you and your family and thanks for a difficult reminder. Lane

Response:

Your comments can be true.  However, since being on Advair, he hasn’t used his inhaler, and he hasn’t taken prednisone for quite some time. – Hide quoted text — Show quoted text – It may have been a cumulative effect was he taking something else before Advair. Many asthma sufferers take a form of steroids and albuterol and heart problems are frequent. My best wishes to you and your family and thanks for a difficult reminder. Lane

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It is always difficult to know if a drug side effect is responsible or not. The PDR lists the same 101 side effects for every drug. While I was takng "anyoldmycin" my stocks plunged, my car wouldn’t start and I cut myself shaving. Was all this caused by "anyoldmycin"? Unfortunately it takes a very long time to decide which – if any – ofthe 101 side effects are "real" and requires withdrawal of a medication. The ingredients in Advair are quite common ones and seem to help many persons. Murray Grossan, M.D. http://www.ent-consult.com http://www.TinnitusRelief.net http://www.emedicine.com/ent/topic516.htm

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Many people find Advair and Flovent disagreeable immedeiately.  So they switch to Pulmicort, which, conversely, is not for everyone.  These two are both powerful and effective steroids. Address:http://www.consumerlawpage.com/article/asthma.shtml Changed:9:56 PM on Friday, November 8, 2002

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Question:

Hi Gang,      Seeking help for clostraphobia/anxiety. I really dont know which one it is. This condition most certainly affects my fuction in my job and I can use all the help I can get.      When I wore a younger mans clothes, I had no anxiety and no clostraphobia.  I have crawled through 2500 degree heat,pulling a hose and wearing 75lbs of extra gear.  I have noticed that on odd occasions I find it hard to even be inside the glass cube of a stand up shower.     It doesnt happen all the time, but I fear it will happen at the wrong time and it will get either the person I am with or myself killed.     I think its anxiety related because I can be asleep dreaming of people in my past who I have either bonded with and/or I have lost contact with and I get a very sad feeling then it jumps into clostraphobia, so bad that I even feel trapped in my own bedroom and have to exit the room to gain relief.  Sometimes it is so bad that I have to exit the entire house to get relief.   I never use to be this way, I have been trapped by fallen debris in a fire and had to be dug out and never had any clostraphobia until the past few years.     I feel I am a liability and intentionally try to place myself on the exterior either pumping the engine or doing some other exterior fireground work.    Is it my advancing years? What would place a phobia like that where there never existed one before?    I have been thinking about talking with my gp about it and see if zoloft,xanax or something would be a road to peace for me.   Please help.  Has anyone else ever had these types of feelings? If so, how do I deal with it?                 Thanks in advance for sharing                     your thoughts.                     Jay

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Jay, you would be very wise to talk with a psychiatry professional about this – it’s not uncommon for people to have thoughts like this and it’s really not about their age, it can happen any time.  There is some research that elderly people can have some compromises in their serotonin system, but I’m assuming if you are a firefighter you are not "elderly".  Unfortunately anxiety disorder situations, just like many other illnesses, do not discriminate and can mess with anybody.  Based on what you said, it definitely sounds like it is an anxiety thing.  It is very manageable as long as you keep an open mind and talk openly with treatment people about what you’re thinking.  People who initially talk with mental health professionals very often do not want to disclose things for fear of being judged or any number of other esoteric reasons, but it is SO counterproductive to do that – tell the person what is on your mind if you get a sense that they’re safe to talk to.  If you don’t get that sense, politely get through the interview and find another one; remember you are creating a relationship with another person by involving yourself with a psych dr. or a therapist so if the "fit" isn’t right, it’s ok, they know this happens all the time.  A GP treatment scenario is often well-intentioned but that person just doesn’t have the experience in dealing with the many subtle aspects of these types of problems that a psych specialist would. Gary – Hide quoted text — Show quoted text – Hi Gang,     Seeking help for clostraphobia/anxiety. I really dont know which one it is. This condition most certainly affects my fuction in my job and I can use all the help I can get.     When I wore a younger mans clothes, I had no anxiety and no clostraphobia.  I have crawled through 2500 degree heat,pulling a hose and wearing 75lbs of extra gear.  I have noticed that on odd occasions I find it hard to even be inside the glass cube of a stand up shower.    It doesnt happen all the time, but I fear it will happen at the wrong time and it will get either the person I am with or myself killed.    I think its anxiety related because I can be asleep dreaming of people in my past who I have either bonded with and/or I have lost contact with and I get a very sad feeling then it jumps into clostraphobia, so bad that I even feel trapped in my own bedroom and have to exit the room to gain relief.  Sometimes it is so bad that I have to exit the entire house to get relief.  I never use to be this way, I have been trapped by fallen debris in a fire and had to be dug out and never had any clostraphobia until the past few years.    I feel I am a liability and intentionally try to place myself on the exterior either pumping the engine or doing some other exterior fireground work.   Is it my advancing years? What would place a phobia like that where there never existed one before?   I have been thinking about talking with my gp about it and see if zoloft,xanax or something would be a road to peace for me.  Please help.  Has anyone else ever had these types of feelings? If so, how do I deal with it?                Thanks in advance for sharing                    your thoughts.                    Jay

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- Hide quoted text — Show quoted text – Hi Gang,      Seeking help for clostraphobia/anxiety. I really dont know which one it is. This condition most certainly affects my fuction in my job and I can use all the help I can get.      When I wore a younger mans clothes, I had no anxiety and no clostraphobia.  I have crawled through 2500 degree heat,pulling a hose and wearing 75lbs of extra gear.  I have noticed that on odd occasions I find it hard to even be inside the glass cube of a stand up shower.     It doesnt happen all the time, but I fear it will happen at the wrong time and it will get either the person I am with or myself killed.     I think its anxiety related because I can be asleep dreaming of people in my past who I have either bonded with and/or I have lost contact with and I get a very sad feeling then it jumps into clostraphobia, so bad that I even feel trapped in my own bedroom and have to exit the room to gain relief.  Sometimes it is so bad that I have to exit the entire house to get relief.   I never use to be this way, I have been trapped by fallen debris in a fire and had to be dug out and never had any clostraphobia until the past few years.     I feel I am a liability and intentionally try to place myself on the exterior either pumping the engine or doing some other exterior fireground work.    Is it my advancing years? What would place a phobia like that where there never existed one before?    I have been thinking about talking with my gp about it and see if zoloft,xanax or something would be a road to peace for me.   Please help.  Has anyone else ever had these types of feelings? If so, how do I deal with it?                 Thanks in advance for sharing                     your thoughts.                     Jay

Jay, it would be easy to say that you’ve just developed a stronger sense of danger as you’ve aged, but based on personal experience, age has nothing to do with it. I often had to put myself in very confined spaces for extended periods and had no problem doing it for many years. Until one day when i was trapped in a small room with one of the tradesmen. I began to feel uneasy and it quickly accelerated into panic. The carpenter HATED small places and was damn near losing it himself. Although we were in no danger and i knew we’d laugh about it later, i couldn’t control the frightened feeling.   That, out of my control confinement, was dreadful and having no idea where it came from was puzzling. One of my close friends is a psychiatrist, so i asked him what might be up. He wasn’t much help.    He offered drugs to control the anxiety, but couldn’t give a reason for the late / sudden development of the condition. I suspected fatigue, dehydration or low blood sugar. He agreed it could be any of those that had affected my brain chemistry, but still couldn’t explain the sudden onset or extreme nature of the sensation. Should you be able to find a therapist who can give you a good explanation, they may also be able to suggest treatment. Let us know please.    For now, i just stay out of tight places. Ma

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Hello Jay, – I was turned down for submarine duty in the Navy because it was felt that I may be phobic of enclosed places (sub-sailors are tested for this). Were it me, I would explain this to the fire chief an see what he advises. You have specific rights regarding such issues under the ADA and it may be felt you need to be assigned to specific work or, – medical retirement, depending on the cirsumstances. – K – Hide quoted text — Show quoted text – Hi Gang,      Seeking help for clostraphobia/anxiety. I really dont know which one it is. This condition most certainly affects my fuction in my job and I can use all the help I can get.      When I wore a younger mans clothes, I had no anxiety and no clostraphobia.  I have crawled through 2500 degree heat,pulling a hose and wearing 75lbs of extra gear.  I have noticed that on odd occasions I find it hard to even be inside the glass cube of a stand up shower.     It doesnt happen all the time, but I fear it will happen at the wrong time and it will get either the person I am with or myself killed.     I think its anxiety related because I can be asleep dreaming of people in my past who I have either bonded with and/or I have lost contact with and I get a very sad feeling then it jumps into clostraphobia, so bad that I even feel trapped in my own bedroom and have to exit the room to gain relief.  Sometimes it is so bad that I have to exit the entire house to get relief.   I never use to be this way, I have been trapped by fallen debris in a fire and had to be dug out and never had any clostraphobia until the past few years.     I feel I am a liability and intentionally try to place myself on the exterior either pumping the engine or doing some other exterior fireground work.    Is it my advancing years? What would place a phobia like that where there never existed one before?    I have been thinking about talking with my gp about it and see if zoloft,xanax or something would be a road to peace for me.   Please help.  Has anyone else ever had these types of feelings? If so, how do I deal with it?                 Thanks in advance for sharing                     your thoughts.                     Jay

Response:

That is a very interesting and useful thing to know, which I had never considered – the ADA.  I think I need to take a good close look at that and will do so.  Appreciate your bringing that up. Gary

– Hide quoted text — Show quoted text – Hello Jay, – I was turned down for submarine duty in the Navy because it was felt that I may be phobic of enclosed places (sub-sailors are tested for this). Were it me, I would explain this to the fire chief an see what he advises. You have specific rights regarding such issues under the ADA and it may be felt you need to be assigned to specific work or, – medical retirement, depending on the cirsumstances. – K Hi Gang,      Seeking help for clostraphobia/anxiety. I really dont know which one it is. This condition most certainly affects my fuction in my job and I can use all the help I can get.      When I wore a younger mans clothes, I had no anxiety and no clostraphobia.  I have crawled through 2500 degree heat,pulling a hose and wearing 75lbs of extra gear.  I have noticed that on odd occasions I find it hard to even be inside the glass cube of a stand up shower.     It doesnt happen all the time, but I fear it will happen at the wrong time and it will get either the person I am with or myself killed.     I think its anxiety related because I can be asleep dreaming of people in my past who I have either bonded with and/or I have lost contact with and I get a very sad feeling then it jumps into clostraphobia, so bad that I even feel trapped in my own bedroom and have to exit the room to gain relief.  Sometimes it is so bad that I have to exit the entire house to get relief.   I never use to be this way, I have been trapped by fallen debris in a fire and had to be dug out and never had any clostraphobia until the past few years.     I feel I am a liability and intentionally try to place myself on the exterior either pumping the engine or doing some other exterior fireground work.    Is it my advancing years? What would place a phobia like that where there never existed one before?    I have been thinking about talking with my gp about it and see if zoloft,xanax or something would be a road to peace for me.   Please help.  Has anyone else ever had these types of feelings? If so, how do I deal with it?                 Thanks in advance for sharing                     your thoughts.                     Jay

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Question:

What Makes Tics Tick? Clues Found in Tourette Twins’ Caudates August 1996 For the first time, scientists have a neurobiological explanation for the variation in severity of tics in Tourette Syndrome. Researchers at the National Institute of Mental Health have traced such symptom differences to "supersensitivity" of certain neurotransmitter receptors in the brain structure responsible for carrying out automatic behaviors. They suggest that this dysfunction may underlie the compulsion to act out the sudden movements and vocalizations that characterize Tourette Syndrome, which affects about 100,000 Americans with its full-blown form and up to 0.5% of the population with milder symptoms. The researchers report on their findings in the August 30th issue of Science. In a brain imaging study of identical twins differently affected by the disorder, Daniel Weinberger, M.D., Steven Wolf, M.D., and colleagues in the NIMH Clinical Brain Disorders Branch found that binding to D2 dopamine receptors in the caudate nucleus was higher in the sibling with the more severe symptoms. "Strikingly, the degree to which the twins differed in this caudate D-2 binding predicted almost absolutely their differences in tic severity," said Weinberger. "This also likely explains the ebb and flow of tics experienced over the course of Tourette Syndrome and its overlap with obsessive compulsive disorder. "While we know that genetics plays an important role in transmission of Tourette Syndrome, the fact that identical twins show differences in symptom severity suggests that environmental influences modify the clinical expression of the disorder," he explained. "We studied identical twins discordant for such symptom severity to control for normal genetic variation in brain function." Although previous studies comparing unrelated Tourette patients with unaffected persons had failed to show differences in dopamine system function, the NIMH investigators were spurred by the fact that Tourette symptoms respond to drugs like haloperidol that block D2 dopamine receptors. They used a radioactive tracer drug, IBZM (iodobenzamide), that similarly blocks D2 receptors, and a SPECT* (single-photon emission computed tomography) scanner to image dopamine binding in five identical twin pairs with the disorder. In each case, the differences were observed in the head of the caudate nucleus, but not in the adjacent putamen, suggesting that D2 caudate binding accounted for almost all of the symptomatic variance within each twin pair. Previously, preoccupation with the motoric aspects of Tourette Syndrome had led researchers to search for clues in the putamen, according to Weinberger. Subtle changes in receptor availability in one small area appear to explain rather large differences in clinical presentation, say the researchers. Functional brain imaging studies of OCD (obsessive compulsive disorder), which often occurs along with Tourette Syndrome, also implicate a brain circuit that includes the head of the caudate nucleus, along with areas in the frontal and cingulate cortex. Thus, the new NIMH finding adds to evidence that the disorders are "overlapping neurobehavioral conditions," suggest the researchers. They speculate that the caudate nucleus may be related to the compulsive component of tics, whereas the dopamine dysfunction there may be the "common link between the ideational and motor components of Tourette Syndrome." Other NIMH researchers participating in the study included: Drs. Douglas Jones, Michael Knable, Thomas Hyde, Richard Coppola, Kan Sam Lee, and Julia Gorey. Twin subjects were recruited by the Tourette Syndrome Association, Inc., which also provided partial funding for the study. Additional information and b-roll are available from the association (718-224-2999). Information provided by the NIMH. *The SPECT scanner employs radiation detectors to get a fix on the location in the brain of a tracer drug. Unlike other similar techniques, such as PET (positron emission tomography), SPECT uses a tracer with a long half-life, making possible studies such as this one, which involved a prolonged series of scans over a 4-hour period. http://www.mhsource.com/hy/tic.html

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Hi Elaine, http://www.dystonia-foundation.org/defined/forms.asp This is a link to they Dystonia Research Foundation website. You can check your symptoms with Ormandibular or Meige These are focal forms of Dystonia, which is a movement disorder. These are sometimes caused from side effects from certain medications. I have Blepharospasm which affects the eyes and Meige which affects the face. Facial tics and Meige are very similar. The best type of doctor for diagnosing would be a Movement Disorder Specialist. I was watching Oprah the other day, it was about Tourettes. It was an excellent show. I was very interested in the similaraties of finding things that we can do to get a rest from the movements (tics) they showed a girl who can act and sing on stage tic free. The other things were how we feel inside living and coping with this. The show came about from the book "Icy Sparks" which talks about emotions. Sounds like a great book. Please come back and let us know how you are doing. Best Wishes, Mindy – Hide quoted text — Show quoted text -Hi, I was doing a search online, and obtained a reference to this newsgroup for possible help. I have Tourette Syndrome and have been on different medications over the years. Recently, I was taking Prolxin. When I stopped, a new tic appeared (which is common with TS — for tics to come and go and change). This tic was in my face though and hasn’t followed the usual course of tics I have had in the past. I am concerned that this is not part of TS but rather Tardive Dyskensia caused from taking Prolixin. At this point, I am not sure what to do, or what can be done. I contacted the doctor who prescribed the Prolixin who is located in Houston.  (I live in Albuquerque). He said I should make an appointment to come in for an exam. While this may be the best thing to do, I am concerned, since he was the one who prescribed the Prolixin to begin with. My symptoms include movements in my face, particularly the right side of my face in my jaw and check area. It has become quite painful for my jaw. It is a facial contortion that somewhat looks like chewing, and also smacking with my lips. I have read some information that the earlier it is detected the better the chance it will disappear. I don’t know if there is a treatment for this or not. I also have started taking Vitamin E, as I ran across this information as well as something that could potential help. I would appreciate any advice that I can get from anyone who has information regarding this. thanks, elaine

Response:

Hi, I was doing a search online, and obtained a reference to this newsgroup for possible help. I would appreciate any advice that I can get from anyone who has information regarding this. thanks, elaine

Hi Elaine, I had a no no tic for a few years and can really sympathize with you.  Tics are so exhausting and embarrassing.   Onset started after taking medication for an ulcer.   The prescrition’s name is unknown. I only made the connection between onset and the medication years later. I was never treated for the tic.  It went away on its own.   I do have essential tremor and Dystonia.   Please check out the following sites for more http://www.wfubmc.edu/surg-sci/ns/tremor.html http://www.parkinsons-information-exchange-network-online.com/archive… Regards, Gene

Response:

Hi, I was doing a search online, and obtained a reference to this newsgroup for possible help. I have Tourette Syndrome and have been on different medications over the years. Recently, I was taking Prolxin. When I stopped, a new tic appeared (which is common with TS — for tics to come and go and change). This tic was in my face though and hasn’t followed the usual course of tics I have had in the past. I am concerned that this is not part of TS but rather Tardive Dyskensia caused from taking Prolixin. At this point, I am not sure what to do, or what can be done. I contacted the doctor who prescribed the Prolixin who is located in Houston.  (I live in Albuquerque). He said I should make an appointment to come in for an exam. While this may be the best thing to do, I am concerned, since he was the one who prescribed the Prolixin to begin with. My symptoms include movements in my face, particularly the right side of my face in my jaw and check area. It has become quite painful for my jaw. It is a facial contortion that somewhat looks like chewing, and also smacking with my lips. I have read some information that the earlier it is detected the better the chance it will disappear. I don’t know if there is a treatment for this or not. I also have started taking Vitamin E, as I ran across this information as well as something that could potential help. I would appreciate any advice that I can get from anyone who has information regarding this. thanks, elaine

Response:

What a great group! Thanks for the quick response and the links you have all recommended. This is the kind of doc I went to for my Tourettes. It is Dr. Jankovic at Baylor in Houston. It is a Movement Disorders clinic. Unfortunately, he is also the one who prescribed the Prolixin. I am currently trying to get an appointment with him again to try to figure out what is going on. He also mentioned botox treatment. Has this been successful for any of

you? Several months ago, I heard that someone had gone to Dr. Jandovic in Houston, also for Tourettes and received botox injections.  Apparently, it is being done but I never heard anything else from this young man as to success.   Botox is also being used for tics with success. Dr. Jankovic has a good reputation.   I’ve heard from one lady here locally that saw him but she did not care for his bedside manner.  She hasn’t been happy with any of her doctors, though.  She has Blepharospasm symptoms but apparently keeps getting different diagnoses depending on where she goes. Shirley

Response:

What a great group! Thanks for the quick response and the links you have all recommended. This is the kind of doc I went to for my Tourettes. It is Dr. Jankovic at Baylor in Houston. It is a Movement Disorders clinic. Unfortunately, he is also the one who prescribed the Prolixin. I am currently trying to get an appointment with him again to try to figure out what is going on.

Dr. Jankovic, apparently, is one of the top in his field.  He has an excellent reputation. He also mentioned botox treatment. Has this been successful for any of you?

Botox is used on  focal dystonias.  Many patients have had good results with it.   – Hide quoted text — Show quoted text -Several months ago, I heard that someone had gone to Dr. Jandovic in Shirley

Response:

Hi Mindy, It has been very helpful! I am grateful for the information. Positive thinking – BINGO Stress Management and Humor are the best medicines. I can’t forget God and prayer, is #1

Yes, I can see where all of these would be important. I have noticed stress plays a big part in the disorder. It does in Tourettes as well, but seems to be more so with this. the eye twitch you refer to I might describe as a soft fluttering feeling.

right, that is what I a good example… Our eye spasms are involuntary but they are hard blinks, sometimes forecful. Other times they close and will not open on command. These type of spasms are very noticable. The eye and facial spasms are extremely hard to suppress.

Tics from tourettes are involuntary as well, but there is this sense at some level that you "should" be able to stop the movement. I feel this as well with whatever is going on with my face. Even though realistically it doesn’t feel like I can stop it, it also doesn’t feel as involuntary as the eye twitch described above. It also seems much harder to suppress than tics that I normally have with TS. It also feels like it is getting worse. I don’t know if that is from stress or maybe from being off the offending medication for a longer period of time. Its very confusing! And painful… Just like TS, when I do try to suppress it, it is only short lived. It seems to be more prevalent in frequency as well compared to the tics I have with TS. That is exactly what happens. It would help if I laid down closed my eyes, opened my mouthly slightly, relaxing my jaw and my face. I would take slow deep breaths and focused on relaxing each part of my body from my head to my toes (very slowly, as I said the words to my self, relax your head, etc.) and don’t move on until each part is relaxed.

I will try this as well. It would be nice to get some relief. Dr.Jankovic is well known. I don’t know anything about him personally. I go to Dr. Bressman in Manhattan, she is an excellent doctor. She has tried me on many meds that didn’t agree with me at all. These types of disorders require lot’s of patience from the doctor as well as the patient to see which meds. or combination of meds. that will help. Life would be much easier if we all responded the same way to these meds. but, we don’t, unfortunately.

This is true for TS as well…except there really are no meds that really work with TS. Some will reduce tics, but none will make them go away. Unless for example, you take a neuroleptic in a high dose. In that case your tics would probably subside, but you wouldn’t be able to think! I’m pretty sure Dr.J. is one of the very dedicated doctors of this field. It’s important you have confidence in your doctor. Does he listen carefully and take his time with you? These things are also important.

I have only seen him once, last December. And he seemed pretty good. I e-mailed him about my frustrations of calling his office and not being able to get an appointment till December, and he wrote and said he would have his secretary arrange to overbook me on a day soon. So I was pleased to hear this. For a long time Dr.Bressman had me as "Meige vs. tics"  She said it is so similar.

I can see that! I think that has been a big part of my confusion. They are so similar it is hard to tell them apart. She would ask if I felt the need to blink, before I blinked. It was hard for me to answer because it was always changing.

It is common with TS to have "premonitory" feelings before a tic. That is probably why she was asking you this. For example, I have a tic that is in my torso. Inevitably, when I get in the car to go somewhere, I "have to" tic. I twist my upper torso from left to right repeatedly, until it "feels right". And I can always tell before I tic that it is going to happen. If anything, the tic or problem with my face now feels more like "a habit". That somehow it has become a habit for my jaw and mouth to contort about every 30 seconds or so. When I sleep, I don’t have it. I wake up in the morning and think, if I try really hard today, maybe it won’t come back. And it always does. Seems to get worse as the day progresses as well. I am hoping it is not damaging my jaw. It feels like it could be. It hurts into the jaw bone. I will be seeing my dentist next week, so I will ask if any damage has occurred. She said the treatment is the same. I was getting botox around my eyes and in my jaw.  It did help me.. How long it helps varies with each person. About 2 yrs ago it stopped helping. Which worked out fine, cause presently I am on medication that is helping.

What medication is that? Are you experiencing any side-effects from it? When you do something creative that you are totally engrossed in, you get a reprieve from your tics. Stress makes them worse. During sleep, they are usually much better Is this true with dystonia as well? Another BINGO Many with dystonia we found from our discussions hum or sing or make some type of sound.

I haven’t found that doing something creative helps alleviate the facial movements at all. Actually, that was probably my first clue that it might not be a "normal tic" that I experience with TS. I haven’t tried humming or singing though…definitely worth a try! Also, many have problems breathing they tend to subside when the spasms are helped with medicine. Does this happen with TS?

No, breathing problems are not common with TS. I can see where I tend to breathe more shallow now because of this facial tic. It’s kind of like your whole body is taking a toll because of the tic. Kind of like your whole body tenses up, which then makes your breathing worse. But on a more physical level, like the feeling of asthma, I have not experienced that. Thanks for all the help! I really appreciate it. I am trying to learn as much as I can about this before I see Dr. Jankovic in the next couple of weeks. Have you had Meige all of your life of is it fairly recent? Do you know what caused it? thanks again, elaine

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It has been very helpful! I am grateful for the information.

Me too )) It also feels like it is getting worse. I don’t know if that is from stress or maybe from being off the offending medication for a longer period of time. Its very confusing! And painful…

It might be a good idea if you write down all these feelings and symptoms because they are easy to forget. Take them with you when you go to the doctor. Leave a space between your questions, fill in with his replies. My sypmtoms started 8yrs. ago, it was my 40th birthday present (Ha Ha) (( I don’t know what caused it. My first few visits I took a small tape recorder with me, along with my husband and sister-in-law. None of us could have remembered everything, and we all walk out hearing something a little different – LOL For the pain, you can try moist warm heat or ice, you will get to know which makes you feel better. Don’t chew gum, that will give your jaw more of a work-out. You can suck on hard candy. That sucking action works the reverse of chewing. The dentist made me a mouth piece, nothing fancy, inexpensive. It’s clear rubber, molded from my teeth. I asked him to make the back a little thicker.  I wore it mostly during the night. There were times when I needed it for driving (sounds strange) It really is very painful, and no one can understand how exhausting it can be, unless you’ve experienced it. Really all the dystonia movements are painful and exhausting. TS tics are not painful or exhausting? This is true for TS as well…except there really are no meds that really work with TS. Some will reduce tics, but none will make them go away.

BINGO – they don’t know the cause, and they don’t have a cure.  Unless for example, you take a neuroleptic in a high dose.

My doctor told me Never Ever take any neuroleptics or dopamine blockers. There are lists of meds. that can cause dystonia. But strangely enough many on that list are prescribed to help dystonia. Let’s hope and pray if yours came from that med. it will subside and go away. I was given meds that gave me crazy side effects like making my arms fling about, and my head shake, etc. They did go away when the med. was out of my system. I e-mailed him about my frustrations of calling his office and not being able to get an appointment till

It does get frustrating, between the doses, and symptoms, there was always questions. I ended up goint to a psychiatrist in my neighborhood who is board certified in psychiatry and neurology to monitor my meds. He was in contact with my Movement Specialist, and I don’t take anything unless she ok’s it. When I sleep, I don’t have it. I wake up in the morning and think, if I try really hard today, maybe it won’t come back. And it always does. Seems to get worse as the day progresses as well.

Dystonia spasms go away while sleeping. It helps to get a good nights sleep, and a nap in the afternoon. I remember waking up with those exact feelings. What medication is that? Are you experiencing any side-effects from it?

I’m taking Parsitan, (My psych.does not monitor this med) It’s not sold in the States. I get it from Canada. I notice some short term memory loss. I haven’t found that doing something creative helps alleviate the facial movements at all.

I was able to crotchet, gardening, be on the computer, these would alleviate the movements, most of the time. I actually thought I could re-train my brain by doing something that kept my eyes open, I would stay at it for hours, days, months -LOL I still keep my hopes up that my brain will work around the mis-fired neurotransmitters.  Positive thinking LOL I can see where I tend to breathe more shallow now because of this facial tic. It’s kind of like your whole body is taking a toll because of the tic. Kind of like your whole body tenses up, which then makes your breathing worse.

I think you hit the nail on the head. If you pracitce deep breathing excersises everyday, it will automatically kick in when you need it. It takes a long time, but the everyday benefits are definately worth it. Not only for us, for everyone. It’s great for mind and body. Thanks for all the help! I really appreciate it. I am trying to learn as much as I can about this before I see Dr. Jankovic in the next couple of weeks.

I’m really enjoying our chit-chat Marie and Shirley have the same type of dystonia as I do. Hey Marie & Shirley, we could use your 2 cents thanks again, elaine

thank you, Elaine, Mindy – Hide quoted text — Show quoted text –

Response:

What a great group! Thanks for the quick response and the links you have all recommended. I had a no no tic for a few years and can really sympathize with you.  Tics are so exhausting and embarrassing.

yes. they sure can be! it is a bizarre disorder… I was never treated for the tic.  It went away on its own. I do have essential tremor and Dystonia.

I am hoping that I caught this soon enough and it will go away…positive thinking! It is interesting that you have essential tremor. When I went to see a new specialist last December regarding my Tourettes, he did a standard neurological evaluation and also told me I had essential tremor. I had known for years that my hands would shake for no apparent reason. Primarily when I tried to do fine detail work. Interestingly enough, I am a graphic designer. Most of my work now is done on computer. But in the past, and still when I paint or illustrate, if I am really focused, my hands don’t seem to shake. Yet, if I am doing something "non-creative" like trying to screw in a screw or solder something, they shake so much it is hard to be effective. My hands have been this way so long that I just thought it was me…so I was surprised when my doc had a term to describe it. You can check your symptoms with Ormandibular or Meige…

<snip thanks for the links… one of my questions is that in the description of these disorders, it describes it many times as being a "spasm" What is happening with me, doesn’t feel like a spasm. We sometimes have discussions like this on Tourettes lists that I am on, so I am sure you have discussed how these movements "feel"… To me a spasm feels more involuntary. For example, an eye twitch. This is a common experience that most people experience at different times in their life. The muscle twitches, fairly rapidly and the person has absolutely no control over it. Is that what dystonia is like? That is not what is happening for me. This movement is actually very similar to the tics I experience with Tourettes — if I really try, I can somewhat suppress this movement. The thing that feels different with the facial movements I am describing to you compared to the tics I normally feel with TS is that it is more difficult to suppress the movement. Just like TS, when I do try to suppress it, it is only short lived. It seems to be more prevalent in frequency as well compared to the tics I have with TS. The best type of doctor for diagnosing would be a Movement Disorder Specialist.

This is the kind of doc I went to for my Tourettes. It is Dr. Jankovic at Baylor in Houston. It is a Movement Disorders clinic. Unfortunately, he is also the one who prescribed the Prolixin. I am currently trying to get an appointment with him again to try to figure out what is going on. He also mentioned botox treatment. Has this been successful for any of you? I was watching Oprah the other day, it was about Tourettes. It was an excellent show.

Yes, it was very well done! There were a lot of shows in the past that only showed the sensationalized aspects of Tourettes, so it was nice to see one that was accurate for a change! I was very interested in the similaraties of finding things that we can do to get a rest from the movements (tics) they showed a girl who can act and sing on stage tic free.

this seems to be fairly common with TS. When you do something creative that you are totally engrossed in, you get a reprieve from your tics. Stress makes them worse. During sleep, they are usually much better. Is this true with dystonia as well? Thanks again Gene and Mindy for your help! sincerely, elaine

Response:

I am French, though I don’t understand all the details of your conversation, I am very interested in reading your messages. I’ve been suffering from what is called "hemispasme" in French for about 8 years. Obviously it is not genetic but the symptoms are very similar to what I can read in some of your messages. It started slighly with my right eye as I was expecting my fourth child. No doctors could really help me, giving me neuroleptic which had all the possible effects on my body except on my eye. 2 years ago, I was about leaving my job I love so much, I couldn’t bear the spasms which occured every 30 seconds all day long. Though my life was harmonious, however I felt exhausted. My doctor sent me to a French specialist who started Botox. I have injections every three months, the medicine comes from the US and is not entirely recognized in France as it is considered as a "treatment for comfort !!". Besides, it is very expensive. I’ve had a new life since that time, though the right side of my face has changed a bit -people often ask me why I am so tired !. I perhaps look tired, but I feel very enthusiastic inside. I am 40 now and I wonder how long Botox will continue to help me. Have a nice day; Jo

Question:

Modern SSRI antidepressants are good at preventing both depression and ejaculation…..     It’s a well known but little discussed side effect of drugs like prozac, zoloft, effexor, citalopram….. Hello, I was wondering if anyone can help me with a problem I’ve had since I was a teenager.  Everytime I ejaculate, I get a feeling of depression x approximately 2-3 days.    It has nothing to do with anything psychologically but I feel is biochemical.   Does anyone know of a solution or can direct me to a solution for this problem? Thanks R

– Some of my colleagues think that the chemicals we are experimenting with could potentially cause brain damage, however I think that fish crunchy bits of salami my new red hippie noodle. Naked pool frogs?

Response:

Hello, I was wondering if anyone can help me with a problem I’ve had since I was a teenager.  Everytime I ejaculate, I get a feeling of depression x approximately 2-3 days.    It has nothing to do with anything psychologically but I feel is biochemical.   Does anyone know of a solution or can direct me to a solution for this problem? Thanks R

It is possible to abuse sex. It can be very effective as a means of reducing anxiety. It is an addiction much as drinking exsessive amounts of alcohol. Doubt if it’s biochemical any more then an alcoholic that feels depressed when drinking. Contact a therapist that knows anything about sexual issues. And a lot of them don’t know so don’t settle for the first you find. They might also tell you if there is a possibillity that it is a biochemical reaction. J.

Response:

Hello, I was wondering if anyone can help me with a problem I’ve had since I was a teenager.  Everytime I ejaculate, I get a feeling of depression x approximately 2-3 days.    It has nothing to do with anything psychologically but I feel is biochemical.   Does anyone know of a solution or can direct me to a solution for this problem? Thanks R

Response:

I was wondering if anyone can help me with a problem I’ve had since I was a teenager.  Everytime I ejaculate, I get a feeling of depression x approximately 2-3 days.    It has nothing to do with anything psychologically but I feel is biochemical.   Does anyone know of a solution or can direct me to a solution for this problem?

Stop ejaculating and get some good therapy?? Sincerely Stewart — The Metaphor Man  *and*  The Great Defender of the Self (remove the SPAMBLOCK) Please send me an e-mail copy of your posted response.

Response:

Question:

— Andy

– Hide quoted text — Show quoted text – Hi Andy, I’ve seen three "shrinks" and all three give me something different to work with. Each one though fizzled out, couldn’t get much more after the first few visits. YMMV and IME Charla Hi Guy’s I’m starting to think that maybe I should find a new shrink. I pretty much have everything sorted out now, I can deal with the PA’s if I have to, and if I don’t have to, or don’t feel like sitting through one I go home….. to easy. I’ve got off the Xanax and Zoloft which was only making me worse and am now on Luvox and serapax, which works great. So everything is pretty cruzzy apart from the odd up and down. The problem I’m stuck with now I guess is best described as mild depression / mild constant background anxiety / mild emotional distress, no big problem, just slightly annoying. The thing is, I go to the Pdoc every week and go "this is how I feel and this is what’s going on ect" , but I don’t seem to be getting any new answers. Its always, take the meds, go to places for exposure and desensitisation of the PA’s, CBT, exercise, meditate and stop yourself as soon as you start getting in to any negative thought patterns. I feel like I talk, he listens, but doesn’t say much and what he does say I already know, and am doing it. Should I be getting more answers, and more response from him? or is that about all there is to it…. just keep going as I am and give things more time? The reason I’m asking is because I don’t want to spend more time and money building a repour with new Pdoc’s if the answers are going to be the same. Thanks. — Andy

Response:

- Hide quoted text — Show quoted text – Its always, take the meds, go to places for exposure and desensitisation of the PA’s, CBT, exercise, meditate and stop yourself as soon as you start getting in to any negative thought patterns. I feel like I talk, he listens, but doesn’t say much and what he does say I already know, and am doing it. Should I be getting more answers, and more response from him? or is that about all there is to it…. just keep going as I am and give things more time? The reason I’m asking is because I don’t want to spend more time and money building a repour with new Pdoc’s if the answers are going to be the same. Thanks. — Andy

dump him therapy is a collaborative event that is involving and goal oriented-listening is not productive to getting things done-the goal is to learn coping techniques and various ways to recover. LM

Response:

     Dear Andy,            In my experience  it has always been the same. I went to this one shrink. 12 visits and each time it was the same. I listened to him describe HIS phobias. I’d love to splash his name all over the place, but i won’t. What did help me was group therapy. Have you tried this? If not you may want to check it out Debbie

Response:

- Hide quoted text — Show quoted text – Hi Guy’s I’m starting to think that maybe I should find a new shrink. I pretty much have everything sorted out now, I can deal with the PA’s if I have to, and if I don’t have to, or don’t feel like sitting through one I go home….. to easy. I’ve got off the Xanax and Zoloft which was only making me worse and am now on Luvox and serapax, which works great. So everything is pretty cruzzy apart from the odd up and down. The problem I’m stuck with now I guess is best described as mild depression / mild constant background anxiety / mild emotional distress, no big problem, just slightly annoying. The thing is, I go to the Pdoc every week and go "this is how I feel and this is what’s going on ect" , but I don’t seem to be getting any new answers. Its always, take the meds, go to places for exposure and desensitisation of the PA’s, CBT, exercise, meditate and stop yourself as soon as you start getting in to any negative thought patterns. I feel like I talk, he listens, but doesn’t say much and what he does say I already know, and am doing it. Should I be getting more answers, and more response from him? or is that about all there is to it…. just keep going as I am and give things more time? The reason I’m asking is because I don’t want to spend more time and money building a repour with new Pdoc’s if the answers are going to be the same. Thanks. — Andy

I agree with his referral to CBT. It seems just what you need now. I am glad that you

Question:

Folks,           I’ve been on the Paxil for about five weeks now,  feeling better but really experiencing the sexual side effects of the Paxil. I have heard that Serzone gives you all the benefits of Paxil and No sexual side effects.          Can anyone respond both pro and con for switching to Serzone. I’d like to get my drive/libido back. Also if you have made the switch from Paxil how did you do it, were you weaned off the Paxil slowly or just a cold turkey switch to the serzone. Thanks in advance for any and all responses. — Dan ICQ 108553906

Response:

         I’ve been on the Paxil for about five weeks now,  feeling better but really experiencing the sexual side effects of the Paxil. I have heard that Serzone gives you all the benefits of Paxil and No sexual side effects.         Can anyone respond both pro and con for switching to Serzone. I’d like to get my drive/libido back. Also if you have made the switch from Paxil how did you do it, were you weaned off the Paxil slowly or just a cold turkey switch to the serzone.

My doctor switched me from paxil to serzone just before new year’s. No weaning — quit paxil one day, started serzone the next. I can definitely attest to the fact that serzone doesn’t depress libido the way paxil did. However, I’m not as certain that the serzone is as effective as paxil was in controlling anxiety. I *do* know that I’m prepared to stick with the serzone….. — Tom

Response:

I have had no sexual side effects as a result of taking Serzone. It has also gotten rid of my insomnia. I took Paxil for one day and it freaked me out!

– Hide quoted text — Show quoted text –          I’ve been on the Paxil for about five weeks now,  feeling better but really experiencing the sexual side effects of the Paxil. I have heard that Serzone gives you all the benefits of Paxil and No sexual side effects.         Can anyone respond both pro and con for switching to Serzone. I’d like to get my drive/libido back. Also if you have made the switch from Paxil how did you do it, were you weaned off the Paxil slowly or just a cold turkey switch to the serzone. My doctor switched me from paxil to serzone just before new year’s. No weaning — quit paxil one day, started serzone the next. I can definitely attest to the fact that serzone doesn’t depress libido the way paxil did. However, I’m not as certain that the serzone is as effective as paxil was in controlling anxiety. I *do* know that I’m prepared to stick with the serzone….. — Tom

Response:

Danny, I didn’t go from Paxil to Serzone but did go Zoloft-Wellbutrin-Serzone, which I now have been on for about five months.  With the Wellbutrin I ramped off, and then began the "starter pack" of Serzone.  But even the lowest dosage I found intolerable at first – it upset my stomach and made me feel like I had drank ten cups of coffee.  I had to break the beginning pills in half to make it comfortable and move up from there.  Once you’re on it it’s fine, but it’s bumpy getting there. As far as libido or sexual side effects there were none . . . . at first. However (and this could just be me, obviously) at about the four month mark I did start to have problems, similar to what the Zoloft was doing.  It disperses my concentration to the point where it’s very difficult to "finish" in bed.  I don’t know why it took this long to kick in, but it did. I’m currently at 150mg twice a day, and at one point my doc tried to increase it to 400 total.  That DIDN’T work, made me feel like a zombie and totally screwed with my physical coordination, so I went back to 300.  But I’m seriously thinking of ramping off it entirely, not just because of the sexual problem but other side effects as well.  I’ll call my doc and talk about it. Good luck to you, however, and don’t take my experience as a negative for trying Serzone.  I’ve noticed on the other meds many times I have an unusual reaction which just proves we all react differently to some degree. Wayne

– Hide quoted text — Show quoted text – Folks,           I’ve been on the Paxil for about five weeks now,  feeling better but really experiencing the sexual side effects of the Paxil. I have heard that Serzone gives you all the benefits of Paxil and No sexual side effects.          Can anyone respond both pro and con for switching to Serzone. I’d like to get my drive/libido back. Also if you have made the switch from Paxil how did you do it, were you weaned off the Paxil slowly or just a cold turkey switch to the serzone. Thanks in advance for any and all responses. — Dan ICQ 108553906

Response:

Question:

On or about Mon, 15 Jan 2001 15:19:41 GMT, "MS" <marshmall…@yahoo.com

did apparently write: commonly used slow serotonin reuptake inhibitor (SSRI)

ROTFL!  What a load of BS … —   -john

Response:

I am interested in info. on St. John’s Wort and Kava for OCD and anxiety. Thank you.

Response:

R.P. <addr…@reply-to.is.accurate

wrote in message

news:9325bq$640$1@slb7.atl.mindspring.net…

I am interested in info. on St. John’s Wort and Kava for OCD and anxiety. Thank you.

I had a lot of luck with Kava Kava for anxiety, but it brought back eczema that had lain dormant for over 6 years (and which I have yet to get rid of). Take care if you have any dermatological problems.

Response:

My psychiatrist said it was useless for OCD. Only good for *mild* depression. Ida R.P. <addr…@reply-to.is.accurate

wrote in message

news:9325bq$640$1@slb7.atl.mindspring.net… – Hide quoted text — Show quoted text -

I am interested in info. on St. John’s Wort and Kava for OCD and anxiety. Thank you.

Response:

In article < 933137$vs…@slb6.atl.mindspring.net

,

  "Bill & Ida Kern" < clooney…@mindspring.com

wrote: My psychiatrist said it was useless for OCD. Only good for *mild* depression. Ida

The interesting thing with St. John’s Wort, is that it alters the ‘mood/mind’ enough to allow an objective and clear perspective of the Self. And therefore a clear insight into those parts of the Self that causes the depression. Is your intent to clear yourself of the depression?… or clear yourself of the sources of that depression? The Wort (like LSD; magic mushrooms; kava-kava) open-up the psyche for deeper investigation… rather than offer a cure-all. Later Gerrit Sent via Deja.com http://www.deja.com/

Response:

On Fri, 05 Jan 2001 00:44:03 GMT, Gerrit Deppe <gerrit_de…@my-deja.com

wrote:

The interesting thing with St. John’s Wort, is that it alters the ‘mood/mind’ enough to allow an objective and clear perspective of the Self. And therefore a clear insight into those parts of the Self that causes the depression. Is your intent to clear yourself of the depression?… or clear yourself of the sources of that depression?

Translation: SJW is not strong enough to cure many cases of depression by itself, and works best with psychotherapy combination. By extension, an SSRI plus that kind of psychotherapy ought to be better yet? — The above from: address is spamblocked. Use wherrera (at) lynxview (dot) com for the reply address.

Response:

Dear R.P.,      I have used Kava for anxiety and it does help though if your anxiety is high it may take a few days for it to really catch up with you.  To be on it is to be mellow but alert at the same time so I think it would help with OCD.                    Rusty "R.P." <addr…@reply-to.is.accurate

wrote in message

news:9325bq$640$1@slb7.atl.mindspring.net… – Hide quoted text — Show quoted text -

I am interested in info. on St. John’s Wort and Kava for OCD and anxiety. Thank you.

Response:

"R.P." <addr…@reply-to.is.accurate

wrote in message

news:9325bq$640$1@slb7.atl.mindspring.net…

I am interested in info. on St. John’s Wort and Kava for OCD and anxiety.

Here is some info. I found on St. John’s Wort and OCD: "Gridrunner: Have you heard of some success using St. John’s Wort or 5-htp to lessen OCD? Dr. Jenike: Yes, there are a few cases where St. John’s Wort has helped OCD. In Germany, there are dozens of studies using SJW for mild to moderate depression, but its use for treating OCD is relatively new. I have tried it in quite a few patients, with not much success. But then again, most of the patients I see now, are on the more severe end of the spectrum." – http://www.healthyplace.com/Communities/OCD/site/transcripts/obsession s_ocd.htm See also: http://www.biopsychiatry.com/stjohnocd.htm

Response:

Recent studies have shown SJW to be equally as effective as Zoloft (sertraline) and Prozac (fluoxetine) in mild to moderate depression. It also seems to have a better side-effect profile. See the references below: – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – Equivalence of St John’s wort extract (Ze 117) and fluoxetine: a randomized, controlled study in mild-moderate depression. Schrader E Int Clin Psychopharmacol 2000 Mar;15(2):61-8 Treatment with St John’s wort extract tablets (hypericum Ze 117) and the commonly used slow serotonin reuptake inhibitor (SSRI) fluoxetine was compared in patients with mild-moderate depression with entry Hamilton Depression Scale (HAM-D) (21-item) in the range 16-24, in a randomized, double-blind, parallel group comparison in 240 subjects; fluoxetine: 114 (48%), hypericum: 126 (52%). After 6 weeks’ treatment, mean HAM-D at endpoint decreased to 11.54 on hypericum and to 12.20 on fluoxetine (P < 0.09), while mean Clinical Global Impression (CGI) item I (severity) was significantly (P < 0.03) superior on hypericum, as was the responder rate (P = 0.005). Hypericum safety was substantially superior to fluoxetine, with the incidence of adverse events being 23% on fluoxetine and 8% on hypericum. The commonest events on fluoxetine were agitation (8%), GI disturbances (6%), retching (4%), dizziness (4%), tiredness, anxiety/nervousness and erectile dysfunction (3% each), while on hypericum only GI disturbances (5%) had an incidence greater than 2%. We concluded that hypericum and fluoxetine are equipotent with respect to all main parameters used to investigate antidepressants in this population. Although hypericum may be superior in improving the responder rate, the main difference between the two treatments is safety. Hypericum was superior to fluoxetine in overall incidence of side-effects, number of patients with side-effects and the type of side-effect reported. – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – - – "Comparison of an extract of hypericum (LI 160) and sertraline in the treatment of depression: a double-blind, randomized pilot study." Brenner R, Azbel V, Madhusoodanan S, Pawlowska M Clin Ther 2000 Apr;22(4):411-9 BACKGROUND: Hypericum (St. John’s wort) has been shown to be as efficacious and well tolerated as standard antidepressants in the treatment of depression but has not been compared with selective serotonin reuptake inhibitors (SSRIs). OBJECTIVE: This study compared hypericum and the SSRI sertraline in the treatment of depression. METHODS: In a double-blind, randomized study conducted in a community hospital, 30 male and female outpatients (19 women, 11 men; mean age, 45.5 years) with mild to moderate depression received 600 mg/d of a standardized extract of hypericum (LI 160) or 50 mg/d sertraline for I week, followed by hypericum 900 mg/d or sertraline 75 mg/d for 6 weeks. RESULTS: The severity of symptoms, as assessed by scores on the Hamilton Rating Scale for Depression (HAM-D) and the Clinical Global Impression scale, was significantly reduced in both treatment groups (P < 0.01). Clinical response (defined as a

or =50%

reduction in HAM-D scores) was noted in 47% of patients receiving hypericum and 40% of those receiving sertraline. The difference was not statistically significant. Both agents were well tolerated. A post hoc power analysis indicated that failure to reach statistical significance between treatments resulted primarily from an absence of clinical differences rather than the small sample size. CONCLUSION: The hypericum extract was at least as effective as sertraline in the treatment of mild to moderate depression in a small group of outpatients. William Herrera <posting.acco…@lynxview.com

wrote in message

news:3a554404.167049393@news.rmi.net… – Hide quoted text — Show quoted text -

On Fri, 05 Jan 2001 00:44:03 GMT, Gerrit Deppe <gerrit_de…@my-deja.com wrote: The interesting thing with St. John’s Wort, is that it alters the ‘mood/mind’ enough to allow an objective and clear perspective of the Self. And therefore a clear insight into those parts of the Self that causes the depression. Is your intent to clear yourself of the depression?… or clear yourself of the sources of that depression? Translation: SJW is not strong enough to cure many cases of depression by itself, and works best with psychotherapy combination. By extension, an SSRI plus that kind of psychotherapy ought to be better

yet?

— The above from: address is spamblocked. Use wherrera (at) lynxview (dot)

com for the reply address.

Response:

Question:

I feel for you!  No advice, just hugs.  You aren’t a total slug, since you just joined this new NG and are still searching for answers – or at least advice.  Bravo! Helen "PhBtBet" <phbt…@aol.com

wrote in message

news:20000609130806.23881.00000332@ng-ck1.aol.com… – Hide quoted text — Show quoted text -

Hi group!  Thought it was about time I formally introduced myself and

asked for

some advice since I have been lurking for a very long time. My name is Betty, I’m 46 years old and I have Lupus, RA, Fibro, MPS, and

mitral

valve prolapse along with "vasoconstriction" (I have angina attacks at

rest and

on the go).  I think it appropriate to give some history here: I’ve had fibro since I was 27.  I’d had my son when I was 25 and went for several years without sleep–the kid screamed *non-stop* and was (still

is) an

incredibly intense child!  Anyway, one day I woke up and my entire rib

cage and

back was in spasm and screaming pain.  Went to my GP who did blood tests

and I

came out with a positive ANA.  Referred to a rheumy who did a zillion

tests for

Lupus, but finally diagnosed FMS.  Also discovered MVP at that time. Flash forward to a few years ago when, all of a sudden, my body went

totally

haywire.  I had major tremors (looked like an alcoholic desperately in

need of

a drink!).  Additionally, I had major chest pains.  Went to a cardiologist

who

first blew me off but when she did a stress test and I failed big time,

she

apologized profusely saying I looked so young and fit that she thought I

was

just a hypochondriac.  Anyway, she offered to hospitalize me that day but

I

declined.  Went in for an angiogram the next Monday and the heart was

clear but

when she injected me with some kind of medicine it brought on the angina.

Gave

me meds and did a follow up stress test which I still failed!  At this

point

she admitted that she didn’t have a clue and thought I should have a

second

opinion.  I went to a doctor outside of the group and he couldn’t find

anything

else either.  Right now I’m taking Cardizem CD and have my little Nitroglycerine spray for my "attacks."  As for the tremors, he thought

perhaps

I had "essential tremor" and suggested seeing a neurologist. During this same time my rheumy did some extra blood tests and I tested positive for Lupus–my anti-Sm was positive.  My joints were acting up big time–swelling of the knees and hands, costochondritis, etc.  She started

a

regimen of Plaquenil and prednisone which controlled my symptoms for a bit

and

also helped to relieve my tremors and my migraines which lasted for days

at a

time.  Unfortunately, my symptoms gradually worsened–terrible swelling of

my

knees and hands–and she started me on Methotrexate and increased the prednisone.  I asked her if I had RA and she, at first, insisted that I couldn’t have RA since I definitely had Lupus and said that even if I did,

the

meds should control the RA as well as the Lupus. Several months ago my joints were SO swollen I couldn’t move, I broke down crying in her office and told her "I don’t have a life!"  She was

sympathetic,

sat down and told me that I DO have RA and wanted to add Arava to the mix. That helped quite a lot with the swelling so I started to taper the

prednisone.

She also put me on Neurontin for the FMS pain which was severe.  Well, now

the

tremors and the migraines (which had subsided for 6 months) are back with

a

vengeance and I’m wondering if the prednisone helped control the migraines

and

tremors.  Any thoughts? Currently I’m taking 20mg. MTX, Folic Acid, 20mg. Arava, Robaxin, Xanax, Remeron, Cardizem CD, 9mg. Prednisone, Cytotec, Vicodin, Neurontin, and a

few

other things that I can’t remember off-hand. I never have a "good" day–it’s always bad or awful.  I’m basically house-bound.  I get severe tendonitis for no apparent reason that comes

and

goes on a whim.  By the time my morning regimen of having coffee,

showering,

and getting dressed is over with, I’m wasted and my legs are so swollen

along

with my ankles, toes, etc., that I sit on the couch all day!  I try to

pace

myself but the reality is that I can either clean a few bathroom sinks OR

cook

a meal and by that time I’m in screaming pain.  I’m really getting fed up

with

this!  I used to be so active–played tennis, racquetball, swam laps,

worked

out on the treadmill and did weights, etc.–and now I’m a slug. I am on several NGs and see other people with Lupus or RA saying they can

do

things, go places, go to work, and all the other things that comprise

having a

life.  I don’t know what ailments to attribute to RA and to Lupus.  The Neurontin has helped with the FMS but not the other pain.  Frankly, I’m beginning to lose it! I have planned a trip to Italy for the fall–a 12-night Mediterranean

cruise

with a few nights in Barcelona at the beginning and end of the trip.  I

want to

be able to see the sights and am desperately trying to find out what to do

that

will enable me to have a decent time.  I went on a cruise 1 1/2 years ago

for 7

days and barely came out of my cabin I was so sick the entire time (not

seasick

either)!  I don’t want a repeat. Well, sorry for the long rant, pity party and so on, but I’m in need of

some

help, suggestions, thoughts–anything that might lead me to a better life. Thanks in advance for any advice or words of wisdom! Hugs, Betty

Response:

Dear Betty, Sounds like you’ve had a tough time and I’m so sorry, will keep you in my thoughts and prayers.   Back to business-my experience with Neurontin brought on tremor type seizures. I took it to reduce inflammation in the nerves of a particularly bad leg. Tremors-Seizures were bad enough to spend 4 days in the hospital.  Discontinued the neurontin and I haven’t had any more.  Best of luck to you -I can empathize, I have Ra and SLE.  God Bless.  Cindy

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I want to welcome you to the group.  You certainly sound like you’ve had a really tough time with lupus and RA.  You have my utmost sympathies and respect for the incredible courage you show every day just facing life.  Fortunately, it does sound like you’ve been blessed with some good doctors. My sister, BTW, has had similar problems with angina associated with her MVP (mitral valve prolapse).  Fortunately, after lots of testing, it looks like even though she has a lot of symptoms, nothing overtly dangerous is going on with her heart.  She’s been treated symptomatically since then. So far as the tremors and migraines go, this sounds very much like CNS involvement of lupus.  My daughter also has CNS lupus.  We’ve been told by some very prominent researchers on her case that Methotrexate isn’t a great drug for this particular complication.  It’s wonderful for RA, but not as useful with lupus.  In my daughter’s case, they’ve suggested Imuran, Cellcept or Cytoxan.   If you’d like some weblinks where you can get more RA and lupus information, I’d be h happy to send them.  You’re also welcome to e-mail or IM me anytime.   Take care, Sandra

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Hi group!  Thought it was about time I formally introduced myself and asked for some advice since I have been lurking for a very long time.   My name is Betty, I’m 46 years old and I have Lupus, RA, Fibro, MPS, and mitral valve prolapse along with "vasoconstriction" (I have angina attacks at rest and on the go).  I think it appropriate to give some history here: I’ve had fibro since I was 27.  I’d had my son when I was 25 and went for several years without sleep–the kid screamed *non-stop* and was (still is) an incredibly intense child!  Anyway, one day I woke up and my entire rib cage and back was in spasm and screaming pain.  Went to my GP who did blood tests and I came out with a positive ANA.  Referred to a rheumy who did a zillion tests for Lupus, but finally diagnosed FMS.  Also discovered MVP at that time.   Flash forward to a few years ago when, all of a sudden, my body went totally haywire.  I had major tremors (looked like an alcoholic desperately in need of a drink!).  Additionally, I had major chest pains.  Went to a cardiologist who first blew me off but when she did a stress test and I failed big time, she apologized profusely saying I looked so young and fit that she thought I was just a hypochondriac.  Anyway, she offered to hospitalize me that day but I declined.  Went in for an angiogram the next Monday and the heart was clear but when she injected me with some kind of medicine it brought on the angina.  Gave me meds and did a follow up stress test which I still failed!  At this point she admitted that she didn’t have a clue and thought I should have a second opinion.  I went to a doctor outside of the group and he couldn’t find anything else either.  Right now I’m taking Cardizem CD and have my little Nitroglycerine spray for my "attacks."  As for the tremors, he thought perhaps I had "essential tremor" and suggested seeing a neurologist. During this same time my rheumy did some extra blood tests and I tested positive for Lupus–my anti-Sm was positive.  My joints were acting up big time–swelling of the knees and hands, costochondritis, etc.  She started a regimen of Plaquenil and prednisone which controlled my symptoms for a bit and also helped to relieve my tremors and my migraines which lasted for days at a time.  Unfortunately, my symptoms gradually worsened–terrible swelling of my knees and hands–and she started me on Methotrexate and increased the prednisone.  I asked her if I had RA and she, at first, insisted that I couldn’t have RA since I definitely had Lupus and said that even if I did, the meds should control the RA as well as the Lupus.   Several months ago my joints were SO swollen I couldn’t move, I broke down crying in her office and told her "I don’t have a life!"  She was sympathetic, sat down and told me that I DO have RA and wanted to add Arava to the mix. That helped quite a lot with the swelling so I started to taper the prednisone. She also put me on Neurontin for the FMS pain which was severe.  Well, now the tremors and the migraines (which had subsided for 6 months) are back with a vengeance and I’m wondering if the prednisone helped control the migraines and tremors.  Any thoughts? Currently I’m taking 20mg. MTX, Folic Acid, 20mg. Arava, Robaxin, Xanax, Remeron, Cardizem CD, 9mg. Prednisone, Cytotec, Vicodin, Neurontin, and a few other things that I can’t remember off-hand. I never have a "good" day–it’s always bad or awful.  I’m basically house-bound.  I get severe tendonitis for no apparent reason that comes and goes on a whim.  By the time my morning regimen of having coffee, showering, and getting dressed is over with, I’m wasted and my legs are so swollen along with my ankles, toes, etc., that I sit on the couch all day!  I try to pace myself but the reality is that I can either clean a few bathroom sinks OR cook a meal and by that time I’m in screaming pain.  I’m really getting fed up with this!  I used to be so active–played tennis, racquetball, swam laps, worked out on the treadmill and did weights, etc.–and now I’m a slug. I am on several NGs and see other people with Lupus or RA saying they can do things, go places, go to work, and all the other things that comprise having a life.  I don’t know what ailments to attribute to RA and to Lupus.  The Neurontin has helped with the FMS but not the other pain.  Frankly, I’m beginning to lose it!   I have planned a trip to Italy for the fall–a 12-night Mediterranean cruise with a few nights in Barcelona at the beginning and end of the trip.  I want to be able to see the sights and am desperately trying to find out what to do that will enable me to have a decent time.  I went on a cruise 1 1/2 years ago for 7 days and barely came out of my cabin I was so sick the entire time (not seasick either)!  I don’t want a repeat. Well, sorry for the long rant, pity party and so on, but I’m in need of some help, suggestions, thoughts–anything that might lead me to a better life. Thanks in advance for any advice or words of wisdom! Hugs, Betty

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