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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-06-2011, 11:43 AM | #1 | ||
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I wanted to share this especially as there was discussion about mestinon inceasing anxiety, nervousness. I was part of that here. I ran across this piece by accident this morn but as it was written from a pharmacist perspective with fair detail I was taken by it. The other piece for me is that I have been wondering off and on if the 'ho-hum' attitude of the young neuro I had at univeristy (and a couple others) about my response to mestinon meaing little has anything to do with mestinons use in the Gulf WAr. To me such a large 'experiment' like that, giving healthy soldiers this drug would HAVE an effect of deluting our reality when we have a geniunely good response to the drug.
I dont intend to get a big conversation going here on Gulf war syndrome so please dont take it that way. I am posting the comment by the pharmacist whose husband had to take the mestinon during the war. She talked to the chemist at the company that makes mestinon in an attempt to help her husband. "Kimberly M 5 months ago I am a pharmacy professional and when my husband was in the gulf, he told me he was taking something called NAP pills. It was not until he came home that I realized they were Pyridostigmine. He explained the dosing instructions to me, which I knew to be contrary to the normal prescribing regiment. I contacted the company that invented the brand name drug, Mestinon, and spoke with one of the chemists who works on that specific medication. His thoughts were concerns over the loading dose, and the multiple abrupt starting and stoping of this medication. There was no data on the impact on the brain if someone abruptly discontinued this medication. A person with Myasthenia Gravis would take this medication for the rest of their lives once they started. Only discontinuing if they developed an allergic reaction which would happen, usually within the first 72 hours. The doses my husband took were significantly higher than normally prescribed and he took them as directed by the Army, starting and stopping many, many times based on the threat level of incoming. Just a thought, one possible way to reverse some of the impact on the brain could be to begin a regiment of the medication, again, achieving similar doses to what was taken in Saudi, then properly titrate off of the medication over an extended period of time. My husband took his own life 15 months ago, so I have no one to present this to the VA on their behalf. If anyone tries this or speaks to the doctors about it, let me know." http://hubpages.com/hub/Gulf-War-Ill...-Bromide-Pills |
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02-06-2011, 04:25 PM | #2 | ||
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Grand Magnate
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Annie59, What happened to the Gulf War Vets was quite different. When taken as prescribed by a neurologist, a patient with MG should have none of the effects that the Vets did. The GW Vets also had exposure to a number of other chemicals, including pesticides. Some did have exposure to Sarin, a nerve gas.
As far as anxiety and nervousness from Mestinon, I still believe it is NOT from the drug alone. http://mestinon.com/index.jspf I can find no credible evidence even suggesting that Mestinon can have this side effect of nervousness and anxiety. The "thought" of taking the drug may make some people nervous or anxious but that is not a side effect. Annie |
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"Thanks for this!" says: | sugrkiss (02-07-2011) |
03-17-2012, 03:02 PM | #3 | ||
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My son was given Mestinon erroneously (no MG) and after 5 days had sever panic attacks, depression etc. We think it could be related to the medicine.
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03-17-2012, 10:47 PM | #4 | |||
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I do know that Mestinon causes me to be nervous and gives me the shakes sometimes, as if I drank too much coffee.
I have looked for information about this as a side effect and can find no information. I am very sensitive to medication in general, so maybe I was getting too much Mestinon. I reduced the amount until I only took 1/8 of a pill at a time and that helped a lot, but didn't completely eliminate the nervousness, just made it tolerable. For me, since I have PTSD, maybe Mestinon somehow triggers PTSD and makes me nervous, although I don't know how. I only know how I react to Mestinon and if my MG is bad, it is worth it. I'd rather be nervous than unable to move. I do think Mestinon is safe to take. I don't notice any permanent problems, just the nervousness and shaking about 15 to 30 minutes after taking Mestinon, and it goes away usually within an hour.
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"Thanks for this!" says: | AnnieB3 (03-22-2012) |
03-21-2012, 07:13 PM | #5 | ||
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I was concerned because I read the Mestinon was related to PTSD in Gulf war veterans and that in times of stress can cross the blood brain barrier. It seems the implication of crossing the blood brain barrier can result in a chemical imbalance of neurotransmitters...seratonin..which seems to be what has happened to my son.
It would be interesting to read that anyone else has this experience. |
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03-21-2012, 08:12 PM | #6 | ||
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Grand Magnate
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Hi, E13mom, Welcome.
What happened with our Vets is multifactorial. They not only had Mestinon - which not all of them did - but had super vaccines, pesticide exposure and so many other variables, not to mention the heat factor of Iraq. PTSD in most cases is directly related to the trauma of a "war" situation. The unexpected nature of what they went through is unsettling to the nervous system as well. When a body has too little or too much acetylcholine (ah-seat-ill-co-lean), it can make someone "feel" depressed. When the body gets weak, it can honestly make your mood lower. It "might" have something to do with seratonin, however, if the dose was small there would have to be some kind of underlying problem which it enhanced. It isn't known to have that as a primary effect. See this basic site and the PDF below. http://www.fpnotebook.com/Neuro/Pharm/Mstn.htm Is your son on any other medications or supplements? Does he have any other medical conditions? Mestinon can cross the blood-brain barrier but five days of it should not cause any serious effects or long-term effects. How much was he given? If he was given a huge dose, that would not only be hazardous since he doesn't have MG but truly STUPID on the part of the doctor. But the effects would be muscle weakness, drooling/increased saliva, bradycardia, shortness of breath, etc. As far as the panic attack, when did it occur? How soon into taking the Mestinon? Was he in a hospital setting? Could he have been worried about taking any drug and might any drug have that set that into motion? When I had my first strep antibiotic shot, it scared me; mainly because the doctor was a veritable robot. What made the doctors reach for the Mestinon in the first place? There has to be some kind of underlying medical condition for them to go that route. Do you wish to share? I think you should take a deep breath and realize that this was a temporary situation with Mestinon. No, it's not fun to have a child have a reaction to any drug but the drug is out of his system now. It leaves the body in hours and its effects can last up to 2 weeks on the immune system (not the CNS system, which includes seratonin). If there is some kind of metabolic issue, maybe a trip to an endocrinologist might help. The other thing Mestinon does is to increase peristalsis, the way food goes through the GI tract. It makes things move through more quickly. Perhaps there was an imbalance of electrolytes and fluids too. Did they check those? Those changes alone can look like someone is having a panic attack. Low sodium, for example, can cause extreme agitation. And having anxiety and having a panic attack are 2 different things! So if the doctor wasn't well versed in psychiatry, they may not have done a thorough enough evaluation to decide which one your son was having. I've been on Mestinon for over 11 years and have had absolutely no ill side effects. I have also had panic attacks (NOT anxiety) from some fairly traumatic medical situations. Just wanted to add that, so you know that I have experience to back up what I'm saying. If we can help in any other way, please let us know. Annie |
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03-22-2012, 06:43 AM | #7 | ||
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Quote:
The military uses Mestinon as an anti-nerve gas precaution. It was used extensively to "protect" the soldiers in Iraq (especially where Saddam was known to have and have used nerve gas in the past). Just a little trivia. Brian |
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"Thanks for this!" says: | AnnieB3 (03-22-2012) |
03-22-2012, 11:22 AM | #8 | ||
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Grand Magnate
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Brian, I actually know that already but thanks for chiming in. There were a number of shows years ago done on that and some other pretty awful things that were done to our Vets, like in Vietnam. My Dad was a representative to the Paris "peace talks" for Vietnam in 1970, so I got an early education on all that crap! Our country has done its fair share of polluting people, including the chemtrails they now spray on us. No amount of Mestinon will help with that.
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03-22-2012, 05:56 PM | #9 | |||
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I agree with AnnieB3 -- I've never suffered from anxiety due to Mestinon, either. But, I BELIEVE you saw what you saw. Listen to Annie -- take her advice and investigate. Also, Mestinon is known to make asthma worse -- if your son is asthmatic, that might explain the anxiety and depression. Not being able to breath is pretty scary!
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