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Usage of Pyridostigmine

Has anyone tried using Pyridostigmine for POTS?  I just started it and it seems to only be making things worse.  My shortness of breath, dizzyness, and weakness has gotten worse.  I'm wondering if these things will get better after taking it for a while or if it will continue.
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Avatar universal
I've never been on clonidine or atenolol so I can't help you there.  My POTS doctor says you should get 2-4 grams of salt a day but I'm barely able to get 2 so I don't know.
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Avatar universal
anyone have any bad side affects with clonidine?  The endo after i asked....about the atenolol, mood swings, etc....said to taper off the atenolol and increase salt...take tabs,,,he never has....how many grams should he be taking a day>>any idea> so we will see if there is any improvement....i read about others with the atenolol same things going on,...not all but this is where it was...you can put any med inthere, and it is PEOPLE telling their story with the use of the drug
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Avatar universal
I had to stop taking atenolol and all beta blockers because of major short term memory loss and other adverse side effects. Even 10 mg is more than my body can handle. It is not unusual for dysautonomia patients to be so sensitive to beta blockers that we cannot take it. I call that time in my life - Beta Blocker Hell. I also could not tolerate mestinon but the effects were much different than Beta Blockers.
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Avatar universal
the mestinon or the atenolol, i believe is making mental.mood changes in my husband,  When i ask,  they all say it is such A LOW DOSE....but something is making his mental status really off!!  And it is getting worse!  Any one else have this happen>>??  And his memory is SO SO BAD,,,short term mostly!  But he is aggitated easily and almost downright mean!  I am very concerned!!
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Avatar universal
I wrote about my experience with Pyridostigmmine / Mestinon
http://www.dysautonomiaprison.com/janism/2010/03/24/my-mestinon-experience/
There is also a survey on Mestinon on the page.

My experience with Mestinon was not a good experience.

Jane
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Avatar universal
binder: I stopped taking it a while ago and felt better when stopping it.

pepito: I was on the smallest dose you could take and my side effects were that it just generally made my POTS worse (more dizzy, more short of breath, and more fatigued).  I don't have asthma and the doctors don't really know why I am so short of breath (everything is fine with my lungs).  I am treated by a cardiologist not a neurologist and she switched me to florinef which seemed to help some.

NYCpots: I drink salt water instead of thermotabs which seems to help along with lots of fluids and florinef.  I tried Midodrine a couple times but it didn't help at all.
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Avatar universal
Hi there,

I was put on Pyridostigmmine by the Mayo Clinic and now take 60 mg 3x day. It seemed to help with the blood pooling and some of the symptoms although it certainly hasn't been a panacea.From my understanding it is generally considered a pretty benign drug - especially at these doses - but we all know that what is benign for one is murderous for others!  For the POTS, I am also taking 1) Salt Tablets (thermotabs) - 9 - 12 tablets per day 2) fludrocortisone - just went from .1 mg 1 x day to 2 x day - we'll see 3) various anti-histamines for mast cell issues which can trigger the POTS for me. The salt tablets and additional fludrocortisone along with fluid loading seem to have helped as well but the next drug on my list is Midodrine and after that Clonidine (beta blockers can exacerbate mast cell issues but I may try them anyway)......
Helpful - 0
886699 tn?1270779744
I have been taking Pyridostigmmine for about 6 months now and it has help me some,  I started on a very low dose 1/4 of a 60mg pill 2x day and increased it by 1/4 every week until I felt that I could tolerate it better, I am now taking 1 3/4 pills every 6 hrs and the Dr says I should increase it again little by little, we'll see if I can , the side effects that I get from it (if I go on higher doses ) are twitching around my eyes and a weird feeling in my eyes, it does slow down my heart rate, and loosens bowel movement. I also got the shortness of breath,( because I am an asthmatic) are  you???
You might want to call your neurologist a let him/her know of your symptoms. he might need to adjust the dose.  According to my neurologist , I am on a low dose.  BUt we are all different.and might need different doses to take care of their problems.  He tels me that I could take up to 4 pills every 4-6 hrs.  I personally cannot!!! I am very sensitive.
Helpful - 0
Avatar universal
all i know is do not stop taking it....as it is devastating....husband thought he could dole out own meds, and for some reason thought he only had to take it once a day....it was horrible....he started passing out and having like phsyocotic episodes
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Avatar universal
Thanks.  I think that the dosing that needs to be done very carefully with changing little increments is for myasthenia gravis, not as much for POTS, according to my mom who's a doctor.  I am currently on 30 mg twice a day.  It's not really that I'm having side effects as much as that all my POTS symptoms seem to have gotten worse.
Helpful - 0
612876 tn?1355514495
Sorry, I have no personal experience with this one.  I know there are some on the forum who do and I'm hoping one of them will eventually see this and chime in.  Keep bumping this up if it starts dropping off the front page, folks!!  I know a lot of our "regulars" are sick due to the seasonal heat and aren't on as frequently right now.

Thanks,
-Heiferly.
Helpful - 0
1323747 tn?1364806882
I have been reading a lot about this medication although I have not used it as yet.
My understanding is that you need to keep a very good log of when you take the pills and what side effects you have so your doctor can adjust the dosage correctly.  I would think your symptoms should be reported to your doctor as soon as possible. Evidently there can be a fine line between too much and not enough.

I found two articles that talk more about the side effects and adjusting the dosage as well as relative contraindications.   I hope this helps.  Marie

http://www.gulflink.org/GulfWeb/naps/psb04.html
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682229.html
Helpful - 0
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