Question:

Boy can I sure relate to this post!  I see a Pulmonologist while also receiving allergy shots.  I had some unanswered questions about the immunology shots that only the Allergist could answer.  Can we say the Allergist is a bit arrogant? He totally disagreed with all the med’s that the Pulmonologist has me on..commented that it was a child’s dose.  Said the blood test the Pulmonary dr. did was…"A waste of money"..questioned why I was changed from Serevent MDI to the Discus and the Pulmicort.  Wanted to know why I was off the Flovent and this guy already slammed into me when I said I was experiencing side effects from the Flovent he said that it was.."ALL up in my head".  That Flovent doesn’t cause side effects.

The 2 newest steroid inhalers in the US are Flovent [3 strengths, MDI & DPI versions] and the Pulmicort Turbuhaler. There seems to be a lot of controversy over which of the 2 is ‘best’. My personal preferance is the Pulmicort Turbuhaler [200 ug budesonide/puff]. 200 puffs/container My doctor has to write an annual justification to my HMO to cover it, but it’s the one that works best. It has no additives, just pure drug; and no propellant. And the 200 pf/canister lasts a long time. The Serevent Discus is one I would like to transfer to since it’s also a DPI, but don’t know if my HMO will cover it. It’s a little more expensive. Note that inhaled steroid should be used in the lowest dose needed to control the problem; if all you need is a ‘child’s dose’ that’s all you should use. However this is usually called a ‘Low Dose’, not a child’s dose. Maybe a new allergist would work better. Anyway I prefer advice from your pulmonologist on asthma drugs. Ellis

Response:

It’s impossible to generalize without knowing the individuals involved. I’m a pulmonologist and I use allergists and ENT’s. While I obviously have my bias, I just note to people that the pulmonologist will be able to take care of your asthma if you are hospitalized – even if you’re so sick you wind up on a ventilator. I don’t know of any ENT’s or allergists who do this. Most allergists don’t work in the hospital at all and most tend to not be that available after hours. Further, in the case of asthma (but perhaps not in other diseases) there’s no financial incentive on the part of the pulmonologist to pursue allergy shots or surgery though these referrals are certainly available if they seem indicated. I have both sinusitis and asthma.  I have been to see ENTs, allergists, and pulmonologists.  And one thing I have noticed is that each type of specialist seems to be a bit "prejudiced" toward the others.  That is, some allergists think that ENTs only care about surgery; some pulmonologists think they know how to treat asthmatic bronchitis better than allergists; some allergists think THEY are the best experts on asthma; etc. Anyone else noticed this?  Is it just good-natured rivalry, or is there some legitimate basis for this mutual suspicion?

– Don Elton Columbia, SC http://www.midcarolina.org

Response:

- Hide quoted text — Show quoted text – Boy can I sure relate to this post!  I see a Pulmonologist while also receiving allergy shots.  I had some unanswered questions about the immunology shots that only the Allergist could answer.  Can we say the Allergist is a bit arrogant? He totally disagreed with all the med’s that the Pulmonologist has me on..commented that it was a child’s dose.  Said the blood test the Pulmonary dr. did was…"A waste of money"..questioned why I was changed from Serevent MDI to the Discus and the Pulmicort.  Wanted to know why I was off the Flovent and this guy already slammed into me when I said I was experiencing side effects from the Flovent he said that it was.."ALL up in my head".  That Flovent doesn’t cause side effects. Gee…could it be all the samples of Flovent I see marching in the doors sometimes?  I had mentioned that they were alot of people on the internet suffering from side effects and this jerk proceeds to tell me.."Well, if you listen to the idiots on the internet there’s nothing I can tell you"….

Denice, as one of the "Internet idiots," I would like to point you to the Clinical Pharmacology database at http://cp.gsm.com/ where under "Flovent:  Adverse Reactions", it states the following: "Common adverse reactions to oral inhalation of fluticasone include pharyngitis (10

Question:

I have another question about peak flows. I was diagnosed 14 months ago and, despite many different meds, my peak flows have not really budged. And, based on the charts, I’m 100 below where I should be. So how reliable are they? And why aren’t my meds working? (BTW — Just given another new med today!) The charts are only a rough approximation based on height, sex, and age. Other variables include race, chest size, etc. Your Peak Flow is what is measured when asthma is under control, after using a bronchodilator at mid-day. Your peak flow is not supposed to increase; the asthma drugs keep your lung function in the Green Zone (80% of PB).

Sorry, I was referring to Personal Best peak flow here. Personel Best numbers are not expected to increase, but if your typical peak flow is <80% of personal best, it indicates asthma is not controlled. To determine Personal Best peak flow, it may be necessary to give a burst dose of prednisone to quickly control the asthma. – Hide quoted text — Show quoted text – If asthma meds are not working, it raises doubts about the asthma diagnosis. Asthma is diagnosed using lung function tests. Lung function is measured before and after giving an inhaled bronchodilator like albuterol; a 12% improvement tends to confirm an asthma diagnosis. In difficult cases, a 2nd lung test may be given, called a methacholine challenge. Asthma is a reversible disease. If lung function is not reversible, it raises suspicions of COPD. Ellis

Response:

I have had asthma for 15 years and was told about a month ago that my asthma is not under control at all.  I was on Beclovent but now I take Serevent, Flovent, and Salbutamol. I now only use Ventolin about three times a week instead of 3-4 times a day like before. I monitor my peak flows everyday and have noticed that even when I feel that I am having an asthma attack (short of breath, tight chest, coughing) my peak flows usually don’t drop very much and sometimes don’t drop at all.  Are peak flows really a good way to tell how much distress you are in?  Does it work better for some people and not for others? My doctor always determines the severity of my attacks by having me blow once on the peak flow meter.  The problem is that sometimes my peak flows are good but I’m still not feeling great.  I have read a lot on asthma but I still have no answers to this (forgot to ask my doctor that last time I was in).   Sometimes I have wondered if it is all in my head when my peak flows are good and I’m still having problems breathing, but I know that that is ridiculous.  Any insights on this would be greatly appreciated. Meghan (new to this list) Before you buy.

Response:

I have another question about peak flows. I was diagnosed 14 months ago and, despite many different meds, my peak flows have not really budged. And, based on the charts, I’m 100 below where I should be. So how reliable are they? And why aren’t my meds working? (BTW — Just given another new med today!)

Response:

not everyone fits into the charts.  The charts are based upon an average individual with average non-disease oriented lungs.  The charts are averaged based upon size and age however. therefore, your norm will be unique to you.  If it is not budging upward then you may well be at your personal best and all future measurements will be based upon that number. Scooby RCP, EMT-P Perinatal-Pediatric Respiratory Specialist This mail is a natural product.  The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

Response:

I have another question about peak flows. I was diagnosed 14 months ago and, despite many different meds, my peak flows have not really budged. And, based on the charts, I’m 100 below where I should be. So how reliable are they? And why aren’t my meds working? (BTW — Just given another new med today!)

The charts are only a rough approximation based on height, sex, and age. Other variables include race, chest size, etc. Your Peak Flow is what is measured when asthma is under control, after using a bronchodilator at mid-day. Your peak flow is not supposed to increase; the asthma drugs keep your lung function in the Green Zone (80% of PB). If asthma meds are not working, it raises doubts about the asthma diagnosis. Asthma is diagnosed using lung function tests. Lung function is measured before and after giving an inhaled bronchodilator like albuterol; a 12% improvement tends to confirm an asthma diagnosis. In difficult cases, a 2nd lung test may be given, called a methacholine challenge. Asthma is a reversible disease. If lung function is not reversible, it raises suspicions of COPD. Ellis

Response:

Question:

Thanks to all who replied to my question about Advair. We were very careful to keep the Flovent the same level (she used the Flovent inhaler in addition to the Advair to keep it equal) and she switched from a Serevent diskus, so all things should have been the same. However, I left the choice to her, and she decided to go back to the Serevent diskus and Flovent MDI. She hasn’t been having any problem since. I guess it’s a case of "different strokes for different folks." sue — Susan Hartman/Dirty Linen The Magazine of Folk and World Music http://www.dirtylinen.com

Response:

Does Advair have the same compounds as Pulmicort. Check with your doctor. Lane – Hide quoted text — Show quoted text – Hello. I’ve read lots of posts about Advair and seen that most people like it. But I’m still slightly concerned. My 13-y.o. daughter has severe asthma and takes Accolate, Serevent, Flovent, and Zyrtec. She’s been well controlled over the summer. In the past she has tried Pulmicort Turbohaler and had disastrous results. She couldn’t sleep at night, couldn’t wake in the morning, and had awful nightmares and almost "psychotic" dreams/nighttime episodes. This occured between 1-3 weeks after starting Pulmicort, and when we made the connection we put her back on Flovent and she was fine. (And this has happened twice, at 18-mo intervals). Well, she just started Advair about a week and a half ago and is starting to have trouble sleeping and waking. This morning she mentioned that she thinks it might be similar to the Pulmicort experience. But since it’s just the first couple of weeks of school, it’s hard to say whether it’s Advair-related or normal teen adjustment to a daytime schedule! Though she did also just yesterday have her first asthma flare in a long while – several weeks at least (used the neb for the first time since the beginning of summer). So my question is, has anyone had similar problems with Pulmicort Turbohaler, and what is the experience of those "sensitive" people to Advair? Is there something related to the delivery method? Or was the Pulmicort/Flovent difference related to the drug involved? I should also mention that’s she’s one of those unfortunate people who responds "over the top" to prednisone…every bad side effect known to woman! Munchies, water retention, screaming meanies, etc. Thanks for any light you can shed. Sue — Susan Hartman/Dirty Linen The Magazine of Folk and World Music http://www.dirtylinen.com

Response:

Her reaction to Advair shouldn’t be any different than her reaction to Flovent and Serevent since Advair is the combination of the 2 drugs in a more convenient form. What dose is she on? And did she increase her dose? For example if she was on Flovent 220 is her Advair 250/50? Or higher?

Response:

Well, she just started Advair about a week and a half ago and is starting to have trouble sleeping and waking. This morning she mentioned that she thinks it might be similar to the Pulmicort experience.

It may be an issue of dose. It is possible that her technique with the MDI is not optimal so what the doctor thinks is an equivalent dose of the dry powder inhalers is actually an increase. Advair comes in three different strengths so it may be possible to reduce her dose safely. — CBI, MD

Response:

I took Advair for about six weeks and finally decided to take a break inasmuch as my nasal passges have been very sore deuring that time.  I don’t know if there’s a connection, thus the break to see what happens.  If it clears up then reappears when I resume the Advair, then I’ve resolved the problem.  I did find that the NIH resume was most helpful … I don’t have it in front of me, but loss of sleep might’ve been one of the side effects. Hope this helps … Al Fisher

Response:

Hello. I’ve read lots of posts about Advair and seen that most people like it. But I’m still slightly concerned.

I loved Advair.  I was down to one puff a day, and was off my ventolin inhalers completely.  <I am one ofthose people who has cats, sleeps with them – and is allergic However, I also had a concern – I began having heart palpitaitons.  I checked the web for side effects, asked the doctor – and my concerns were dismissed.  I ended up in the hospital with Ventricular Tachycardia (VT). Normally a very healthy (other than the asthma) adult who hikes, bikes and climbs stairs, my energy level was dropping off the bottom. I have since read that the Advair guys had done some tests on VT and Advair, but I don’t know what the results were.  Why would they do the tests if there was no concern?  If you do develop VT from using Advair – does it disappear after you stop using it? Does anyone have any anecdotal evidence on this? Connie

Response:

I found on a switch from Aerobid to Flovent, that the switch itself caused me to be extremely sensitive for about 3 weeks. It wasn’t that the new drug didn’t work, I think it was that the old one quit before the new one built up. Time may help? LA – Hide quoted text — Show quoted text – Hello. I’ve read lots of posts about Advair and seen that most people like it. But I’m still slightly concerned. My 13-y.o. daughter has severe asthma and takes Accolate, Serevent, Flovent, and Zyrtec. She’s been well controlled over the summer. In the past she has tried Pulmicort Turbohaler and had disastrous results. She couldn’t sleep at night, couldn’t wake in the morning, and had awful nightmares and almost "psychotic" dreams/nighttime episodes. This occured between 1-3 weeks after starting Pulmicort, and when we made the connection we put her back on Flovent and she was fine. (And this has happened twice, at 18-mo intervals). Well, she just started Advair about a week and a half ago and is starting to have trouble sleeping and waking. This morning she mentioned that she thinks it might be similar to the Pulmicort experience. But since it’s just the first couple of weeks of school, it’s hard to say whether it’s Advair-related or normal teen adjustment to a daytime schedule! Though she did also just yesterday have her first asthma flare in a long while – several weeks at least (used the neb for the first time since the beginning of summer). So my question is, has anyone had similar problems with Pulmicort Turbohaler, and what is the experience of those "sensitive" people to Advair? Is there something related to the delivery method? Or was the Pulmicort/Flovent difference related to the drug involved? I should also mention that’s she’s one of those unfortunate people who responds "over the top" to prednisone…every bad side effect known to woman! Munchies, water retention, screaming meanies, etc. Thanks for any light you can shed. Sue — Susan Hartman/Dirty Linen The Magazine of Folk and World Music http://www.dirtylinen.com

Response:

Hello. I’ve read lots of posts about Advair and seen that most people like it. But I’m still slightly concerned. My 13-y.o. daughter has severe asthma and takes Accolate, Serevent, Flovent, and Zyrtec. She’s been well controlled over the summer. In the past she has tried Pulmicort Turbohaler and had disastrous results. She couldn’t sleep at night, couldn’t wake in the morning, and had awful nightmares and almost "psychotic" dreams/nighttime episodes. This occured between 1-3 weeks after starting Pulmicort, and when we made the connection we put her back on Flovent and she was fine. (And this has happened twice, at 18-mo intervals). Well, she just started Advair about a week and a half ago and is starting to have trouble sleeping and waking. This morning she mentioned that she thinks it might be similar to the Pulmicort experience. But since it’s just the first couple of weeks of school, it’s hard to say whether it’s Advair-related or normal teen adjustment to a daytime schedule! Though she did also just yesterday have her first asthma flare in a long while – several weeks at least (used the neb for the first time since the beginning of summer). So my question is, has anyone had similar problems with Pulmicort Turbohaler, and what is the experience of those "sensitive" people to Advair? Is there something related to the delivery method? Or was the Pulmicort/Flovent difference related to the drug involved? I should also mention that’s she’s one of those unfortunate people who responds "over the top" to prednisone…every bad side effect known to woman! Munchies, water retention, screaming meanies, etc. Thanks for any light you can shed. Sue — Susan Hartman/Dirty Linen The Magazine of Folk and World Music http://www.dirtylinen.com

Response:

Question:

Hey Don, My running partner has asthma and routinely runs Ultra Marathons. If you write me I’ll forward your address with your permission to him. He might

Response:

        Some meds such as Ventolin or sodium chromolyn are often prescriobed to be taken before exercise.  When I do hard runs, I hit the puffer.  On easy days, I usually do not (preference on my part). – Hide quoted text — Show quoted text – Does anyone out there have advice for running with asthma.  I ran in highschool and my best times were around 16:30 for the 5K and 35 for the 10k and continued to run sporadically thru college . I got out of shape later in life and developed asthma, since then I have been running for a year and a half and can’t seem to get in shape or run faster than 7 minute pace, yet I’m only 33.  Mentally I know I’m capable of at least running close to those highschool times as I never really even did any speed work in hs and college, just went for long runs. Any advice please Frustrated runner

Response:

Don, I have asthma and had used Ventolin for years (and Cromolyn and epinephrine and bronkaid and Prednisone and Beclovent and Beclofort and side-stream at the hospital and … on and on and on), since I was 18 (I am now 45), up until last fall. I then consulted another lung specialist. He categorized me as "severely asthmatic" and put me on two new meds; Serevent (2 puffs x 2 daily) and Flovent (2 puffs x 2 daily). Since then, almost 1 year, I have used my Ventolin … once! I used it practically daily up until I started the new meds. I now "never" use Ventolin during my runs (I "always" used it before), my breathing is stronger, my lungs feel stronger and life, overall is that much better. I’ll stop sounding like a shill for pharmaceutical companies now and get on to the … ***SOLICITED ADVICE SECTION*** I’m not saying that these meds will do for you what they do for me … we are all different. What I’m saying is this; There is help out there for asthmatics that wasn’t available even 1 or 2 years ago. Do your homework, see a specialist, get a diagnosis … and get back to running. Geoff *18 days to Seattle Marathon!!* Nash – Hide quoted text — Show quoted text – Does anyone out there have advice for running with asthma

Response:

Does anyone out there have advice for running with asthma.  I ran in highschool and my best times were around 16:30 for the 5K and 35 for the 10k and continued to run sporadically thru college . I got out of shape later in life and developed asthma, since then I have been running for a year and a half and can’t seem to get in shape or run faster than 7 minute pace, yet I’m only 33.  Mentally I know I’m capable of at least running close to those highschool times as I never really even did any speed work in hs and college, just went for long runs. Any advice please Frustrated runner

Response:

Hey there.  There’s another thread here about this same topic, you should check it out.  You didn’t mention being on any medications; there’s some really good ones out there.  For example, there is Ventolin, which is good for stopping your wheezing once you’ve already started.  I can also use it just before easy runs; but it does increase your heart rate so it’s probably not a good idea for those days when you push yourself.  Another really great one is cromolyn, which prevents wheezing in the first place.  Unless it’s cold, what’s probably happening is that your lungs are hypersensitized to pollutants.  Cells in your lungs release nasty stuff that constricts your airways (in case you’re interested); cromolyn stops those cells from ever releasing that stuff. Ventolin opens your airways up afterwards.  Cold weather may be different; I don’t think anybody really knows how that works.  The cromolyn that I’m taking doesn’t really seem to help there.  Ozzie has mentioned breathing through your nose (thanks Ozzie!); I’ve also heard that wrapping a scarf around your mouth helps too. Either way, the air gets warmed before it hits your lungs. Just to be on the safe side, you may want to get your wheezing checked out, just in case it’s heart-related and not lung-related.  It’s much more likely to be asthma than anything else, but I’m quite the hypochrondriac! Good luck! Jo. – Hide quoted text — Show quoted text – Does anyone out there have advice for running with asthma.  I ran in highschool and my best times were around 16:30 for the 5K and 35 for the 10k and continued to run sporadically thru college . I got out of shape later in life and developed asthma, since then I have been running for a year and a half and can’t seem to get in shape or run faster than 7 minute pace, yet I’m only 33.  Mentally I know I’m capable of at least running close to those highschool times as I never really even did any speed work in hs and college, just went for long runs. Any advice please Frustrated runner

Response:

Question:

Let’s see; the OP said specifically that the onset of the increased symptoms was directly related to irrigation..

One can’t tell reliably what is related to what just by sequence of occurrences.   Better to look for underlying factors to avoid mixing up triggers with causes. – Hide quoted text — Show quoted text -

. Odd that his thyroid would slow to a crawl each time he irrigated, eh?  :-)

Response:

So you’re saying that irrigation is the trigger of a metabolic slowdown?

No I am not.

Response:

On 12/5/05 1:23 PM, in article 1133817823.808457.32…@g43g2000cwa.googlegroups.com, "dougred…@gmail.com" <dougred…@gmail.com

wrote: I am not using bottled water, just a PUR filter on my faucet.  Should I use distilled water with the Breathe Ease XL?

Unless your tap water is especially bad,regular PUR filter or any bottled water is OK with Breathe.ease XL

Response:

On 12/5/05 2:03 PM, in article d0e9p15e7ofpv4tf2ge3smtfv4p4umc…@4ax.com, – Hide quoted text — Show quoted text -"Don Brady" <dbr…@pobox.com

wrote: On 5 Dec 2005 13:21:29 -0800, dougred…@gmail.com wrote: Don Brady wrote: Really! Hmm I wonder if there could possibly be a metabolic or immune status issue then. This is entirely possible; I am actually a hypopituitary patient.  My endocrinologist Dr. Te Friedman is actually at Cedars Sinaii where Dr. Grossan is.  I’ve been planning to make an appointment with Dr. Grossan the next time I see Dr. Friedman. In a nutshell – Dr. Friedman is about as thorough an endocrinologist as can be found anywhere, and he’s gotten all of my hormones into the mid to high normal range that were low (which was most of them). Do you know what your TSH (thyroid) numeric value is?  It is a blood test. If possible, the numeric value is desirable rather than a conclusion as refernce ranges vary and are being revised. I don’t recall TSH or T3, T4 measurements but at the time I was on 88mcg of T4 which Dr. Friedman raised to 125mcg, and based on a later test, back down to 117mcg. Also I would check fasting B12 level and white blood cell morphology. I can’t answer either of these at the moment, although I do take B12 supplements. Are you tired all the time? Yes indeed.  I am not sure if this is due to some yet to be found hormonal issue related to my pituitary (head trauma is what caused the damage) or if this is sleep related.  I suspect sleep, as there HAVE been times when I have slept well and noticed a definite improvement. But, it appears to be dependent on both possible nocturnal asthma being under control, AND clear nasal breathing.  Nasal CPAP was worthless as I had predicted considering how closed off my nasal passages are.  You can’t force air through pinholes. I have a CPAP machine and I’m considering trying it with an OPAP (oral) mask as it seems at the moment at least, mouth breathing at night is my best and possibly only option. Ok that is what I suspected – there are some underlying metabolic/hormonal factiors here.   You are right on top of them though. Lack of sleep also will cause inflammation through the body, so it could be that alone. I  think that it is among those factors that the cause of your sinusitis lies…..

One of the important findings re sleep apnea is the need to take antioxidant vitamin supplements due to the accumulation of oxidative products during the apneic periods.

Response:

I should note as well that between my nose and lower airways, I get sleep apnea as a result.  When I use Advair and the Afrin / Singulair / Claritin nasal spray before bed, I sleep better than I have ever slept.  If I only use Advair and no nasal spray I still have restless sleep and visa versa.

Response:

On 1 Dec 2005 16:52:44 -0800, dougred…@gmail.com wrote: – Hide quoted text — Show quoted text -

Here is my history: – Allergy shots for several years – Septoplasty & turbinectomy 3 years ago – Using oral claritin and singulair before bed – tried all the various nasal sprays to no avail – tried irrigation both isotonic and hypertonic and it didn’t help much – allergist had me try Afrin a few times just to see what would happen. It did almost nothing. After reading this board for awhile I tried concocting my own spray. First I tried saline + Singulair + Benedryl and this spray seemed to work a bit, but was still disappointing Next, I tried 1/2 oz Afrin, mixed with 30mg crushed Singulair and 3 crushed Claritin tablets.  This actually works pretty well. Next, I’m going to try saline (Breathe Ease) 1/2 ounce + 3 crushed Singulair tabs and 3 crushed Claritin tabs to see if it will have the same effect WITHOUT the Afrin. My question is: 1) am I using too much of the Claritin or Singulair and 2) could I mix these with a cortisone spray instead? Also, I believe the spray I tried mixing in Benadryl, I used too little Benadryl.  I wonder if I should try Benadryl instead of Claritin at a higher dose? I only use the Afrin combination once a day, before bed.  This helps my sleep a LOT.  I clearly have a real problem breathing through the nose and also some twitchy lower airways (and possible nocturnal asthma) and I’m hoping to come up with a spray combination that I can use several times per day without worrying about resistance or making the problem worse.  I’m thinking: 1) Use a corisone + Singulair + Claritin spray 2) Start hypertonic irrigation again with Breathe EaseXL twice per day 3) Hopefully, combining #1 and #2 will keep my nose clear. 4) Continue allergy shots and hope that eventually, they cure my nose ailments. All comments welcome.

Afrin is often (always?) addictive if used for over a few days so it is not recommended to  use it continually. Some of the others are antihistamines.  They can be ok but can tend to dry out your sinuses too much which can limit the drainage needed to keep them clear. Yes this stops the irritating drainage onto the turbinates but may have its own price long term.  I would get a CT scan to make sure that sinusitis is not the underlying problem (if not done already) and that you would not make it worse by preventing drainage with too much drying. The steroid spray has few problems. I’d bet you are allergic or sensitive to dust or mold in your work or home and that if you could totally clear that up (very hard to do), that might eliminate the need for all of these medicines. Meanwhile  and get whatever medication combo you are taking signed off on by your allergist.  As long as you do the latter, then you are a lot safer than totally winging it on your own…

Response:

On 12/1/05 7:30 PM, in article 7uevo1tgdobbcic79n1eo220jqvevb9…@4ax.com, – Hide quoted text — Show quoted text -"Don Brady" <dbr…@pobox.com

wrote: On 1 Dec 2005 16:52:44 -0800, dougred…@gmail.com wrote: Here is my history: – Allergy shots for several years – Septoplasty & turbinectomy 3 years ago – Using oral claritin and singulair before bed – tried all the various nasal sprays to no avail – tried irrigation both isotonic and hypertonic and it didn’t help much – allergist had me try Afrin a few times just to see what would happen. It did almost nothing. After reading this board for awhile I tried concocting my own spray. First I tried saline + Singulair + Benedryl and this spray seemed to work a bit, but was still disappointing Next, I tried 1/2 oz Afrin, mixed with 30mg crushed Singulair and 3 crushed Claritin tablets.  This actually works pretty well. Next, I’m going to try saline (Breathe Ease) 1/2 ounce + 3 crushed Singulair tabs and 3 crushed Claritin tabs to see if it will have the same effect WITHOUT the Afrin. My question is: 1) am I using too much of the Claritin or Singulair and 2) could I mix these with a cortisone spray instead? Also, I believe the spray I tried mixing in Benadryl, I used too little Benadryl.  I wonder if I should try Benadryl instead of Claritin at a higher dose? I only use the Afrin combination once a day, before bed.  This helps my sleep a LOT.  I clearly have a real problem breathing through the nose and also some twitchy lower airways (and possible nocturnal asthma) and I’m hoping to come up with a spray combination that I can use several times per day without worrying about resistance or making the problem worse.  I’m thinking: 1) Use a corisone + Singulair + Claritin spray 2) Start hypertonic irrigation again with Breathe EaseXL twice per day 3) Hopefully, combining #1 and #2 will keep my nose clear. 4) Continue allergy shots and hope that eventually, they cure my nose ailments. All comments welcome. Afrin is often (always?) addictive if used for over a few days so it is not recommended to  use it continually. Some of the others are antihistamines.  They can be ok but can tend to dry out your sinuses too much which can limit the drainage needed to keep them clear. Yes this stops the irritating drainage onto the turbinates but may have its own price long term.  I would get a CT scan to make sure that sinusitis is not the underlying problem (if not done already) and that you would not make it worse by preventing drainage with too much drying. The steroid spray has few problems. I’d bet you are allergic or sensitive to dust or mold in your work or home and that if you could totally clear that up (very hard to do), that might eliminate the need for all of these medicines. Meanwhile  and get whatever medication combo you are taking signed off on by your allergist.  As long as you do the latter, then you are a lot safer than totally winging it on your own…

Your are out there all alone, no one can guide you because no one has studied this. Merck spoke of a singular nasal spray some years ago but … I don’t know what the solubility of these products are. In theory you can open the benadryl capsule and use that. The coating of the claritin is a problem. Let us know how your experiment works out. If it does, get a patent.

Response:

Here is my history: – Allergy shots for several years – Septoplasty & turbinectomy 3 years ago – Using oral claritin and singulair before bed – tried all the various nasal sprays to no avail – tried irrigation both isotonic and hypertonic and it didn’t help much – allergist had me try Afrin a few times just to see what would happen.  It did almost nothing. After reading this board for awhile I tried concocting my own spray. First I tried saline + Singulair + Benedryl and this spray seemed to work a bit, but was still disappointing Next, I tried 1/2 oz Afrin, mixed with 30mg crushed Singulair and 3 crushed Claritin tablets.  This actually works pretty well. Next, I’m going to try saline (Breathe Ease) 1/2 ounce + 3 crushed Singulair tabs and 3 crushed Claritin tabs to see if it will have the same effect WITHOUT the Afrin. My question is: 1) am I using too much of the Claritin or Singulair and 2) could I mix these with a cortisone spray instead? Also, I believe the spray I tried mixing in Benadryl, I used too little Benadryl.  I wonder if I should try Benadryl instead of Claritin at a higher dose? I only use the Afrin combination once a day, before bed.  This helps my sleep a LOT.  I clearly have a real problem breathing through the nose and also some twitchy lower airways (and possible nocturnal asthma) and I’m hoping to come up with a spray combination that I can use several times per day without worrying about resistance or making the problem worse.  I’m thinking: 1) Use a corisone + Singulair + Claritin spray 2) Start hypertonic irrigation again with Breathe EaseXL twice per day 3) Hopefully, combining #1 and #2 will keep my nose clear. 4) Continue allergy shots and hope that eventually, they cure my nose ailments. All comments welcome. Doug

Response:

On 12/5/05 11:52 AM, in article 4569p19iud5l544s8bc1ju1hlpbv5cv…@4ax.com, – Hide quoted text — Show quoted text -"Don Brady" <dbr…@pobox.com

wrote: On 5 Dec 2005 11:39:13 -0800, dougred…@gmail.com wrote: Don and Susan, thank you for your comments about Afrin. I have found unfortunately that my nose becomes "addicted" to Afrin even using it only once per day, before bed.  However, it is my understanding that it is a preservative in Afrin that causes this and not the actual active ingredient??? Why on EARTH would they not change their formula if that is the case, or why wouldn’t a competitor release a generic with a preservative that does not have this problem?? Actually I think it is the active ingredient but I am sure that others will claify. As far as cleaning up my area goes, before having to move for work reasons I had a brand new house built with all hardwood flooring, and the best Consumer Reports whole-house Aprilaire air purifier.  I also had top of the line HEPA room units in my bedroom and my office.  All pillows / bedding allergen proofed.  There literally was NOWHERE for any allergen to be in those rooms.  They may have well have been Intel cleanrooms.  This didn’t help, either Really!   Hmm I wonder if there could possibly be a metabolic or immune status issue then. Do you know what your TSH (thyroid) numeric value is?  It is a blood test. If possible, the numeric value is desirable rather than a conclusion as refernce ranges vary and are being revised. Also I would check fasting B12 level and white blood cell morphology. Are you tired all the time? Are you on any kind of fad diet or do you have major digestive problems?

one way to break the afrin addicition is to dilute the afrin with saline 1/2 and 1/2 each week.

Response:

On 5 Dec 2005 19:01:27 -0800, dougred…@gmail.com wrote:

Don Brady wrote: Ok that is what I suspected – there are some underlying metabolic/hormonal factiors here.   You are right on top of them though. Lack of sleep also will cause inflammation through the body, so it could be that alone. I  think that it is among those factors that the cause of your sinusitis lies….. Unfortunately if that is the case I don’t know what can be done, as all of my hormone levels are now at least midrange and in most cases towards high normal.

If it was only recently then it will take time for all layers of the skin etc. to fully recover. But the sleep angle is the other one I referred to.

Response:

Don Brady wrote:

Ok that is what I suspected – there are some underlying metabolic/hormonal factiors here.   You are right on top of them though. Lack of sleep also will cause inflammation through the body, so it could be that alone. I  think that it is among those factors that the cause of your sinusitis lies…..

Unfortunately if that is the case I don’t know what can be done, as all of my hormone levels are now at least midrange and in most cases towards high normal.

Response:

I just nuke the filtered tap water to kill any microbes that might be present.  Your experience sounds like irrigating is making your sinuses worse (I don’t think you’re withdrawing from antigens) and it made me wonder if you were shooting pathogens up your nose. It sounds as if that’s a strong possibility.

How much time is required to ensure that all microbes are killed? I assume just bring the water to a boil and let it cool?

Response:

It appears he’s irrigating with unsterile water.  That one’s a lot more obvious and easy to fix.

As I said, I do not agee that it is more obvious.  I happen to think it is extremely unlikely that mere unsterile water matters much.   Lots of people go swimming every day.  

I’m interested in your metabolism theory; do you have cites or some material that indicates this may be the case?  Also, what do you mean by slow?  Are you referring to thyroid status, insulin resistance, or something else?

The most common cause of slow metabolism is low thyroid (which is extremely common!. Here’s one reference: http://health.yahoo.com/centers/allergy/154 "Non-allergic rhinitis may also be triggered by pregnancy, thyroid problems, stress or by certain medications. These triggers of non-allergic rhinitis do not cause your body’s immune system to react. Thus they are not an allergen. But they may still irritate your mucous membranes, causing inflammation and your rhinitis symptoms." Really it is no surprise – low thyroid has effects throughout the body and on the skin.  How could it not have the potential to affect the linings of the sinuses and nose also? These matters are covered in any book on endocrinology. As to sleep, it  also profoundly affects natural cortisol levels.  Inflammation throughout the body will result from lack of enough sleep.   The worst thing is that if this is the case in an individual, the sinuses are just one marker. Elevated inflammation will increase the risk of heart disease also amd many other diseases. This is covered in many recent articles on sleep. My sinuses are now getting back close to what they were right after surgery (very good) just by getting *lots* more sleep. In me, sleep is *far* more signficant than streroid sprays.   My thyroid is also bodferline low (TSH is borderline high) but in me it is part;y caused by low caloric intake, which is not too hard to remedy…..

Response:

I am not using bottled water, just a PUR filter on my faucet.  Should I use distilled water with the Breathe Ease XL?

Response:

On 5 Dec 2005 13:21:29 -0800, dougred…@gmail.com wrote: – Hide quoted text — Show quoted text -

Don Brady wrote: Really! Hmm I wonder if there could possibly be a metabolic or immune status issue then. This is entirely possible; I am actually a hypopituitary patient.  My endocrinologist Dr. Te Friedman is actually at Cedars Sinaii where Dr. Grossan is.  I’ve been planning to make an appointment with Dr. Grossan the next time I see Dr. Friedman. In a nutshell – Dr. Friedman is about as thorough an endocrinologist as can be found anywhere, and he’s gotten all of my hormones into the mid to high normal range that were low (which was most of them). Do you know what your TSH (thyroid) numeric value is?  It is a blood test. If possible, the numeric value is desirable rather than a conclusion as refernce ranges vary and are being revised. I don’t recall TSH or T3, T4 measurements but at the time I was on 88mcg of T4 which Dr. Friedman raised to 125mcg, and based on a later test, back down to 117mcg. Also I would check fasting B12 level and white blood cell morphology. I can’t answer either of these at the moment, although I do take B12 supplements. Are you tired all the time? Yes indeed.  I am not sure if this is due to some yet to be found hormonal issue related to my pituitary (head trauma is what caused the damage) or if this is sleep related.  I suspect sleep, as there HAVE been times when I have slept well and noticed a definite improvement. But, it appears to be dependent on both possible nocturnal asthma being under control, AND clear nasal breathing.  Nasal CPAP was worthless as I had predicted considering how closed off my nasal passages are.  You can’t force air through pinholes. I have a CPAP machine and I’m considering trying it with an OPAP (oral) mask as it seems at the moment at least, mouth breathing at night is my best and possibly only option.

Ok that is what I suspected – there are some underlying metabolic/hormonal factiors here.   You are right on top of them though. Lack of sleep also will cause inflammation through the body, so it could be that alone. I  think that it is among those factors that the cause of your sinusitis lies…..

Response:

On Mon, 05 Dec 2005 15:06:26 -0500, Susan <neverm…@nomail.com

wrote: More horse than zebralike, I wonder if the irrigation solution is sterile?

Fair enough question but I actually think that slow metabolism is a major factor in soem forms of sinsusitis. View may differ on which is the horse and which is the zebra….

Response:

Don Brady wrote:

Really! Hmm I wonder if there could possibly be a metabolic or immune status issue then.

This is entirely possible; I am actually a hypopituitary patient.  My endocrinologist Dr. Te Friedman is actually at Cedars Sinaii where Dr. Grossan is.  I’ve been planning to make an appointment with Dr. Grossan the next time I see Dr. Friedman. In a nutshell – Dr. Friedman is about as thorough an endocrinologist as can be found anywhere, and he’s gotten all of my hormones into the mid to high normal range that were low (which was most of them).

Do you know what your TSH (thyroid) numeric value is?  It is a blood test. If possible, the numeric value is desirable rather than a conclusion as refernce ranges vary and are being revised.

I don’t recall TSH or T3, T4 measurements but at the time I was on 88mcg of T4 which Dr. Friedman raised to 125mcg, and based on a later test, back down to 117mcg.

Also I would check fasting B12 level and white blood cell morphology.

I can’t answer either of these at the moment, although I do take B12 supplements.

Are you tired all the time?

Yes indeed.  I am not sure if this is due to some yet to be found hormonal issue related to my pituitary (head trauma is what caused the damage) or if this is sleep related.  I suspect sleep, as there HAVE been times when I have slept well and noticed a definite improvement. But, it appears to be dependent on both possible nocturnal asthma being under control, AND clear nasal breathing.  Nasal CPAP was worthless as I had predicted considering how closed off my nasal passages are.  You can’t force air through pinholes. I have a CPAP machine and I’m considering trying it with an OPAP (oral) mask as it seems at the moment at least, mouth breathing at night is my best and possibly only option.

Are you on any kind of fad diet or do you have major digestive problems?

No fad diets.  I don’t believe in them.  No digestive problems that I am aware of aside from excess stomach acid and this can be eliminated by dietary adjustments.  But, I LOVE hot / spicy foods unfortunately lol. Thank you for the help. Doug

Response:

Don and Susan, thank you for your comments about Afrin. I have found unfortunately that my nose becomes "addicted" to Afrin even using it only once per day, before bed.  However, it is my understanding that it is a preservative in Afrin that causes this and not the actual active ingredient??? Why on EARTH would they not change their formula if that is the case, or why wouldn’t a competitor release a generic with a preservative that does not have this problem?? As far as cleaning up my area goes, before having to move for work reasons I had a brand new house built with all hardwood flooring, and the best Consumer Reports whole-house Aprilaire air purifier.  I also had top of the line HEPA room units in my bedroom and my office.  All pillows / bedding allergen proofed.  There literally was NOWHERE for any allergen to be in those rooms.  They may have well have been Intel cleanrooms.  This didn’t help, either.  My allergist referred me to an ENT and I had a CT which showed no infection but I did have oversized turbinates, and one turbinate had a cyst / nodule or something on it. I had at turbinectomy and that didn’t help, either. Dr. Grossan, I’m actually not using Claritin, I am using Costco generic and this does not appear to have any sort of coating on it.  Since Afrin was starting to give me rebound problems I quit using it and started using Singulair + Claritin in saline.  It seemed to help a bit, but not NEARLY as much.  Not enough help to even bother so I quit using spray entirely.  My nose has completely recovered from the Afrin as I didn’t use it very long. However, I HAVE continued to use my Hydropulse 2X per day, hypertonic. This time around, it seems to be having a positive effect and it’s only been a few days now.  I am using Breathe Ease XL this time, whereas last time I was just using regular salt and baking soda.  Since irrigating however, (and this happened last time as well) I have felt TERRIBLE – I would liken it to the "withdrawal" one may feel when going on a diet that restricts a lot of foods they previously ate.  Really foggy head, very tired, can definitely feel it in my sinuses and eyes. I am guessing that this is my body reacting to the abscencse (or greatly reduced level) of offending allergens in my nasal passages and hence the "withdrawal" feeling? I am hoping that what will happen if I continue to irrigate is, this will go away and I will feel better than before.  How common are these symptoms and any idea how long this process can take?

Response:

On 5 Dec 2005 11:39:13 -0800, dougred…@gmail.com wrote:

Don and Susan, thank you for your comments about Afrin. I have found unfortunately that my nose becomes "addicted" to Afrin even using it only once per day, before bed.  However, it is my understanding that it is a preservative in Afrin that causes this and not the actual active ingredient??? Why on EARTH would they not change their formula if that is the case, or why wouldn’t a competitor release a generic with a preservative that does not have this problem??

Actually I think it is the active ingredient but I am sure that others will claify.

As far as cleaning up my area goes, before having to move for work reasons I had a brand new house built with all hardwood flooring, and the best Consumer Reports whole-house Aprilaire air purifier.  I also had top of the line HEPA room units in my bedroom and my office.  All pillows / bedding allergen proofed.  There literally was NOWHERE for any allergen to be in those rooms.  They may have well have been Intel cleanrooms.  This didn’t help, either

Really!   Hmm I wonder if there could possibly be a metabolic or immune status issue then. Do you know what your TSH (thyroid) numeric value is?  It is a blood test. If possible, the numeric value is desirable rather than a conclusion as refernce ranges vary and are being revised. Also I would check fasting B12 level and white blood cell morphology. Are you tired all the time? Are you on any kind of fad diet or do you have major digestive problems?

Response:

Question:

::I went to Roel this morning, and I have still the zoloft. ::But I take now 2x 50mg, first I had 3x 50mg. ::I will see him back in 14 days, and than we will talk again abaut the med. ::And we will than talk also abaut the problems I have, ::with the deadt of my sister, and why it is so difficult for me. Dear Diana, I hope the Zoloft reduction helps. I agree with Philip in that I don’t understand why nothing more was done at this appt.  You’ve been suffering long enough. (((((Diana))))) Jackie ~*~Life was so much easier when your clothes didn’t match and boys had cooties~*~ — The charter is available at: http://readystump.algebra.com/~asapm

Response:

My dear Family . I went to Roel this morning, and I have still the zoloft. But I take now 2x 50mg, first I had 3x 50mg. I will see him back in 14 days, and than we will talk again abaut the med. And we will than talk also abaut the problems I have, with the deadt of my sister, and why it is so difficult for me. I will let you know how things are going. Love Diana — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi, Diana, I hope this med adjustment is successful for you. Dealing with the death of a loved one takes time.  Your sister was a valuable piece of your life but you will make it through this… smiles, Elise

– Hide quoted text — Show quoted text – My dear Family . I went to Roel this morning, and I have still the zoloft. But I take now 2x 50mg, first I had 3x 50mg. I will see him back in 14 days, and than we will talk again abaut the med. And we will than talk also abaut the problems I have, with the deadt of my sister, and why it is so difficult for me. I will let you know how things are going. Love Diana — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

I wish you the very best with this med change, Diana.  I hope you can, somehow, deal with the death of your sister.  I know how close you were and I would feel the same.  Thinking of you.  {{{{{Diana}}}}} Love, Di

My dear Family . I went to Roel this morning, and I have still the zoloft. But I take now 2x 50mg, first I had 3x 50mg. I will see him back in 14 days, and than we will talk again abaut the med. And we will than talk also abaut the problems I have, with the deadt of my sister, and why it is so difficult for me. I will let you know how things are going. Love Diana

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

Diana schreef: My dear Family . I went to Roel this morning, and I have still the zoloft. But I take now 2x 50mg, first I had 3x 50mg. I will see him back in 14 days, and than we will talk again abaut the med. And we will than talk also abaut the problems I have, with the deadt of my sister, and why it is so difficult for me.

I wonder why he didn’t talk with you about your medication now instead of postponing it. The same goes for talking about your sister’s death. You were scheduled for aan appointment, weren’t you? Or didn’t he have enough time? Well, you will survive another two weeks but it’s a bit disappointing that nothing was talked about. Maybe lowering ther Zoloft dose is a good idea. Philip — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Question:

Hi All, I’m seeing my PCP about my concerns with Zoloft. I’v been on it for maybe three months now and the only positive thing I can say is that it was a far cry better for me than Wellbutrin. I couldn’t tell if the Zoloft eased the anxiety at the switch or if just stopping the W did it. Now for the problems–obviously not initial side effects. Weight gain and unable to lose it not matter what I do–I’m not in to fads, just a good diet and as much excersize as I can tolerate. I’ve tried low fat, then low carb–all smart and balanced as I don’t want it to be in vain as soon as I start eating normally again. But I get no results. This is chipping away at my self esteem (and this has never happened to me before and I’m in my 40’s). Gritting/clenching my teeth. At first I thought it was recent dental work (crowns) but it is getting to be so severe that it is causing headaches and I can’t chew anything more firm than cooked rice. Meat? Forget it! I have been back to the dentist twice and though I haven’t completely let him off the hook, I think since I notice the teeth clenching all day long, I have to take some responsibility and look into the Zoloft possibility. I have small involuntary twitching in my arms and legs. It’s unnerving–I hate it. I fear parkinsons or something similar though, again, it started after I was on the Zoloft for a few months. Heightened anxiety all of a sudden. I was down to .75mgs daily and now am up to twice that–conciously I think for the teeth clenching–it seems to help a little–but also my entire disposition, mood, all over feel. I have horrible nightmares every nightl. I can not even bring myself to tell you the content. They seem to last for ever and if you consider the worst possible thing that could happen to a parent, that is what I am dealing with almost every night. I seem to sob all night long, though I know dreams are very short. Consequently, I wake up with a horrible yet relieved feeling–but very exhausted. I used to get canker sores as a child. NOT COLD SORES–they are so often confused with one another. My mom took me to many doctors and there was nothing they could do back then–I’m hoping medicine has made some progress in this area. This has to be some of the worst pain I have ever had to endure and they seem to be nonstop–two or three coming on the heels of another two or three just healing. I am guaranteed a canker sore (mine always result from trauma) if I eat chips, crisp french bread, if I bite the inside of my cheek when eating. They last a good 1 1/2 to 2 weeks and I realize that the Zoloft may not be to blame but I like to be informed when I see the doc. I have seen a few studies posted here recently about the teeth clenching. Truly, I don’t know if I benefit at all from the Z. I am taking it for anxiety not depression. If anyone has any suggestions or has heard of any one else with a similar story. Any links to pertinent info also greatly appreciated. Finally, does anyone know how well Buspar seems to be working for GAD-ites. Since it’s not a member of the SSRI family—I read somewhere that pre-existing conditions can be exaserbated–something to do with the dopamine????? Obviously, I need some intelligent help here LOL.

Response:

I have small involuntary twitching in my arms and legs. It’s unnerving–I hate it. I fear parkinsons or something similar though,

Hi.. I see you are in your mid 40s,, just have to ask, are you female?? I have found out that many of my symptoms including my anxiety ( which manifests itself in many ways) are all peri/menopause related… have you checked that out?? it does not matter if you still are regular, your hormones can start fluctuating and cause all kinds of symptoms… just consider it , unless you are male of course! Martha

Response:

Hi All,

Hi Little bear I’m seeing my PCP about my concerns with Zoloft. I’v been on it for maybe three months now and the only positive thing I can say is that it was a far cry better for me than Wellbutrin. I couldn’t tell if the Zoloft eased the anxiety at the switch or if just stopping the W did it. Now for the problems–obviously not initial side effects. Weight gain and unable to lose it not matter what I do–I’m not in to fads, just a good diet and as much excersize as I can tolerate. I’ve tried low fat, then low carb–all smart and balanced as I don’t want it to be in vain as soon as I start eating normally again. But I get no results. This is chipping away at my self esteem (and this has never happened to me before and I’m in my 40’s).

Unfortunately alot of the anti-depressants can cause weight gain. Gritting/clenching my teeth. At first I thought it was recent dental work (crowns) but it is getting to be so severe that it is causing headaches and I can’t chew anything more firm than cooked rice. Meat? Forget it! I have been back to the dentist twice and though I haven’t completely let him off the hook, I think since I notice the teeth clenching all day long, I have to take some responsibility and look into the Zoloft possibility.

You can clench your teeth when your anxious, angry, or in pain. It might be a symptom of your anxiety or perhaps the dental work. A few hours after my sister`s accident I started clenching my teeth. It was causing pain in my temples and at times it was so bad I was close to tears. It seemed the more I focused on the clenching the worse it got. Believe it or not, chewing gum seemed to help me. What does your doctor say when you tell him you can`t eat anything harder than rice? I have small involuntary twitching in my arms and legs. It’s unnerving–I hate it. I fear parkinsons or something similar though, again, it started after I was on the Zoloft for a few months.

Twitching is a very common symptom of anxiety. I have had twitches in my arms and legs, the most annoying place to get a twitch is my eyelids. When I went on Paxil they stopped. Maybe your Zoloft dose is just not enough to relieve your anxiety. I think the only way to find out if it is anxiety or the Zoloft causing these symptoms is to get off of it and see what happens. Heightened anxiety all of a sudden. I was down to .75mgs daily and now am up to twice that–conciously I think for the teeth clenching–it seems to help a little–but also my entire disposition, mood, all over feel.

Has increasing the dose helped with the symptoms and the heightened anxiety? I have horrible nightmares every nightl. I can not even bring myself to tell you the content. They seem to last for ever and if you consider the worst possible thing that could happen to a parent, that is what I am dealing with almost every night. I seem to sob all night long, though I know dreams are very short. Consequently, I wake up with a horrible yet relieved feeling–but very exhausted.

When my anxiety is high for a extended period, I get terrible nightmares. I know what you are going through, I use to be afraid to go to sleep for fear of what I would dream. ((((((Little bear))))) I used to get canker sores as a child. NOT COLD SORES–they are so often confused with one another. My mom took me to many doctors and there was nothing they could do back then–I’m hoping medicine has made some progress in this area. This has to be some of the worst pain I have ever had to endure and they seem to be nonstop–two or three coming on the heels of another two or three just healing. I am guaranteed a canker sore (mine always result from trauma) if I eat chips, crisp french bread, if I bite the inside of my cheek when eating. They last a good 1 1/2 to 2 weeks and

Hmmm, did the jaw clenching start after you started getting canker sores? I would bet that your jaw clenching is related to the cankers, indirectly. You said yourself it is some of the worst pain you have endured You might be clenching due to the pain in your mouth. You should tell your doctor about these sores, he may be able to give you a ointment to help with the inflammation. Avoid citrus fruit, tomato`s and nuts. I also heard that many of the toothpaste we use can cause cankers in sensitive individuals. I realize that the Zoloft may not be to blame but I like to be informed when I see the doc. I have seen a few studies posted here recently about the teeth clenching. Truly, I don’t know if I benefit at all from the Z. I am taking it for anxiety not depression. If anyone has any suggestions or has heard of any one else with a similar story. Any links to pertinent info also greatly appreciated. Finally, does anyone know how well Buspar seems to be working for GAD-ites. Since it’s not a member of the SSRI family—I read somewhere that pre-existing conditions can be exaserbated–something to do with the dopamine????? Obviously, I need some intelligent help here LOL.

Buspar is effective for generalized anxiety disorder, which is what I think you said you have. You don`t suffer from panic attacks, right? I don`t think it would hurt to try the Buspar.

really think for your best interest you should see a psych doctor for diagnosis and treatment. Most MD`s  just don`t have the knowledge to treat anxiety disorders properly. Take care and good luck tomorrow. *Hugs* Jackie

Response:

Question:

I’ve had Tinnitus for about 2 years now even though I didn’t realize what it was until last week.  I haven’t yet been to a doctor, but will make an appointment soon, although after reading this NG, I’m not sure what good it will do. About two years ago I started taking Zoloft.  If I missed a dose or was late with a dose, I would get a loud buzzing in my head.  In addition to the constant loud buzzing, I would also get very strong ‘jolts’ in my head which also made me very dizzy – but only for the moment that I had the ‘jolts’.  Of course these jolts could happen several times a minute and would happen off and on for hours.  I tried to make sure that I didn’t miss any doses.  I mentioned this to my friend John who was also taking Zoloft and he told me he had the same problem.  We called them ‘brain farts’. I asked the shrink who was prescribing the Zoloft about this and he told me that it was all in my head ( isn’t that what I said ?? ;-} ). He said that Zoloft CAN’T cause that.  Well I knew he was wrong, so I got up on the net ** and read about some other people who experienced the same thing.  After taking Zoloft for about a year, I decided that I wanted off.  So I tapered down and went through really bad episodes of these brain farts.  I’ve been off Zoloft for about a year now and the brain farts are no more, but I still have the (sometimes) very loud buzzing in my head. I’d heard of T before, but didn’t think that’s what was happening to me because T is a ringing in the ears, not a buzzing inside the head which is what I have.  One night last week, as I was *trying* to sleep, it dawned on me again to check the net. **  First I looked up T and found that, I think it was 24% of people with T report that it’s a buzzing in the head not a ringing in one or both ears.  Bingo.  Then I looked up T AND Zoloft and found that T is one of the potential side effects of Zoloft occurring in a study in 1.6% of the people who take it.  Anything over 1% is considered significant.  Bingo #2. I don’t think I’ve had any hearing loss due to the T.  I’ve always had trouble hearing if there’s any background noise, and as my friend John put it, now I come with my own built in background noise! Ok, long story for a simple question for y’all.  I have Kaiser Health, which in my opinion sucks.  I have to see a GP before pursuing anything else.  Once I get through that, what should I be asking for? What type of specialist should I insist on seeing about this? bill ps remove the first ‘x’ in the email address to send email ** don’t ya just love the net?

Response:

xbtr…@concentric.net (Bill Truax) wrote:

Ok, long story for a simple question for y’all.  I have Kaiser Health, which in my opinion sucks.  I have to see a GP before pursuing anything else.  Once I get through that, what should I be asking for? What type of specialist should I insist on seeing about this?

…………………………. Here’s what I would do. Join the American Tinnitus Association, and talk with other folks who have had tinnitus.  Find out what approaches have been successful for them.  When you find an approach and a facility which in your judgement are most compatible with your needs, I will absolutely assure you that it will not be part of the Kaiser plan.  So then speak with the office manager at the facility you have chosen, express your interest in paying cash for the service, and request information about the uniqueness (and success rate) of that particular program, which you then will present to the client services representative of your Kaiser plan to see if an appeal will result possibly in partial or complete remuneration to you! By your own analysis, your health care plan "sucks."  That does not necessarily mean that your health care must follow suit, but typically it will cost you!  Remember, Kaiser is cut rate coverage (again the colorful word "sucks" comes to mind), and in the end … in life you generally get what you pay for!  Hence, the national trend actually AWAY from HMO’s! Best of luck. nagler Stephen M. Nagler, MD, FACS Director Southeastern Comprehensive Tinnitus Clinic Atlanta, Georgia http://www.tinn.com (404) 531-3979

Response:

Welcome, Bill. Pull up a chair and make yourself at home. Bruce Seattle

Response:

Thanks for the info.  I’ll keep it in mind when I get around to seeing someone about this.  At this point, this has been going on for 2 years, and it hasn’t driven me nuts yet, although before I realized what it was, I thought I was going nuts a few times.  I never mentioned it to a single person until last week when I figured out what it was.  Just knowing what it is can be a big help. I’ll be sure to let you all know if anything happens with the doctors. Thanks again, bill btr…@concentric.net – Hide quoted text — Show quoted text -Stephen Nagler wrote: xbtr…@concentric.net (Bill Truax) wrote:

Ok, long story for a simple question for y’all.  I have Kaiser Health, which in my opinion sucks.  I have to see a GP before pursuing anything else.  Once I get through that, what should I be asking for? What type of specialist should I insist on seeing about this? …………………………. Here’s what I would do. Join the American Tinnitus Association, and talk with other folks who have had tinnitus.  Find out what approaches have been successful for them.  When you find an approach and a facility which in your judgement are most compatible with your needs, I will absolutely assure you that it will not be part of the Kaiser plan.  So then speak with the office manager at the facility you have chosen, express your interest in paying cash for the service, and request information about the uniqueness (and success rate) of that particular program, which you then will present to the client services representative of your Kaiser plan to see if an appeal will result possibly in partial or complete remuneration to you! By your own analysis, your health care plan "sucks."  That does not necessarily mean that your health care must follow suit, but typically it will cost you!  Remember, Kaiser is cut rate coverage (again the colorful word "sucks" comes to mind), and in the end … in life you generally get what you pay for!  Hence, the national trend actually AWAY from HMO’s! Best of luck. nagler Stephen M. Nagler, MD, FACS Director Southeastern Comprehensive Tinnitus Clinic Atlanta, Georgia http://www.tinn.com (404) 531-3979

Response:

Thanks, it’s appreciated.  I may be the silent guest at the table for a while, since at this point I have more to learn than contribute, but I am here. bill btr…@concentric.net – Hide quoted text — Show quoted text -Bruce F. Meyers wrote:

Welcome, Bill. Pull up a chair and make yourself at home. Bruce Seattle

Response:

Question:

Frankly, you’d be nuts if you weren’t depressed by this state of affairs. Ask your doc about antidepressants. Mel Headcat (head…@headcat.com) wrote:

: Does anyone else experience "emotional" symptoms when their : allergies/sinusitis is acting up? I find that I get *extremely* : depressed (low-spirited, hopeless, negative, generally defeated-feeling) : when my allergies kick in. : : I was allergy-free until I turned 40, but after that I started to notice : stuffyness, sneezing, sore throat, etc. whenever I was outdoors for any : length of time. Each year it got a little worse and finally last summer : it seemed to really "blossom" – I had what seemed like a whopper cold : that lasted literally from April through September. I had hoped the : arrival of cold weather would clear things up, but instead it got worse : – the allergy stuffyness/sneezing/etc. eased seamlessly into what was : first diagnosed as bronchitis and later recognized as pneumonia; I spent : November and December in bed and am truly just starting to feel good : again. But the damn allergy stuff is starting all over again! I’ve : learned to stay indoors a lot and that helps, as do antihistamines, etc. : But I seem to notice that in addition to the standard stuff, I also feel : distinctly depressed whenever the allergy thing is in high gear. Has : anyone else noticed this in conjunction with allergies/sinusitis? Or am : I nuts as well as allergic? : : Any input from other allergy sufferers is most gratefully welcomed. This : stuff as me about at my wits end!! The doctors I saw for pneumonia said : the allergies wouldn’t have had anything to do with it, but I find that : hard to believe. Anyone else experienced anything similar? : : R.A. Butters : — Mel Billik in Michigan Remember: if you can keep your head about you when all around you are in a panic … perhaps you don’t totally understand the situation!

Response:

Headcat, Are you taking decongestants when your allergies act up? I find that decongestants of ANY kind make me depressed, and the longer I take them the worse it gets. Clare

Response:

I finally found a psychiatrist who diagnosed my depression and related it to an early start with chronic allergies and sinusitis.  I’m now 39 and have had 7 surgeries (maybe 6 – they all blend together).  I am also allergic to aspirin and have found that I can’t take Ibuprofen or ANYTHING except 650 mg. of tylenol/acetominophen. H

Response:

In article <338CAD05.7…@iname.com

, Clare <cl…@iname.com wrote: Headcat, Are you taking decongestants when your allergies act up? I find that decongestants of ANY kind make me depressed, and the longer I take them the worse it gets. Clare

I’d like to echo what Clare said…many decongestants even advise that they can cause negative symptoms…related to nervous irritation or anxiety. COnsistent or excessive use of thiese medications have made me feel "depressed" in the past. I’d sooner irrigate, take papaya, or use very limited amounts of a prescribed spray. (Livostin is my choice.)

Response:

Question:

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

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

Response:

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

Response:

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

Response:

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

drgeor1…@aol.com (DrGeor107a)

writes:

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

and

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

psychopharmacologists – Hide quoted text — Show quoted text -

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

Response:

darc…@aol.com (DarcieG) wrote:

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

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

Response:

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

Response:

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

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

Response:

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

Response:

In <312879F3.4…@metvax.metro.msus.edu

Pat Rummenie

<rumme…@metvax.metro.msus.edu

writes:

 we will have some good moral

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

was

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

bashing

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

all

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

if

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

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

Response:

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

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

Response:

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

Response:

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

Response:

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

, Pat Rummenie

<rumme…@metvax.metro.msus.edu

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

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

Response:

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

Response:

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

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

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

, drgeor1…@aol.com

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

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

OCD

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

extremely

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

them

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

learner

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

Response:

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

Response:

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

Response:

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

Response:

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

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

Response:

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

Response:

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

Response:

THis year’s

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

Response:

Ramona writes:

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

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

Response: