Myasthenia gravis fainting syncope
 

Hi All,

I'm writing this post about myasthenia gravis, mestinon (pyridostigmine bromide), and fainting or syncope. I'm not looking for an answer on this, I just want to put the information out in cyberspace in case anybody is looking for it. Since I've got MG I might as well share what I've learnt about it, so this is one more entry. I am a medical practitioner.

I'm a 37 year old male with myasthenia gravis, which unfortunately I've had since I was 18. On the bright side, I'm doing well, hardly taking any Mestinon in the last couple of years. Just some mild ongoing facial weakness. I currently take Azathioprine.

There have been countless surprising things that have happened in my time with MG, some of which I think are unrecognised side effects of Mestinon.

When I was a junior doctor (aged about 24 or 25) I had to spend some time in operating theatres, and I found that I would frequently feel faint and have to go outside to sit down. I'm not afraid of blood, and prior to spending time in theatre this had never ever happened before. I seemed to be able to prevent it somewhat by eating and drinking something before going in there. Obviously I now work nowhere near operating theatres.

I wonder (I'm not sure) if this is a side effect of Mestinon. Given mestinon causes side effects through the parasympathetic (autonomic) nervous system, I think it's possible that it could cause faintness, particularly when it's combined with standing still and wearing gloves, gown, mask etc.

So just in case there are any other doctors out there with MG who are finding that they faint in operating theatres, this may be why.

I suppose some atropine would help.

Some of the other posts I've put on the internet regarding MG or mestinon include:
- Myasthenia gravis and swimming (warning)
- myasthenia gravis, mestinon, and teeth / tooth enamel


Cheers,
D

Hi,

Mestinon is actually used to increase standing blood pressure by the mayo clinic. My dr here in the UK has asked me to try it (I suffer from dysautonomia - problems with my autonomic nervous system of which syncope, low blood pressure,orthostatic hypotension, poor temperature regulation and postural orthostatic tachycardia are just some of the fun things I live with!).

With regard to your syncope it is possible that the MG has caused problems with your autonomic nervous system. Many people with auto immune disorders go on to develop such problems.

I would suggest that you take a look at this forum
http://forums.dinet.org/index.php?/f...ia-discussion/

where many of the people suffer from Postural Orthostatic Tacycardia syndrome, Syncope (many different types) and other issues to do with the autonomic nervous system along with various autoimmune diseases.

http://www.mayoclinic.com/health/ort...ents-and-drugs

It sounds like you could be suffering with orthostatic hypotension have a look at the above link which mentions mestinon.

Rach

Shouldn't mestinon decrease blood pressure?

Since it increases acetylcholine available at receptors in general, it should increase acetycholine at the heart. Acetycholine decreases the heart rate, which should decrease the blood pressure.

Right, wrong? Opinions?

Hi,

It is extensively used in people with Hypotension and Postural orthostatic tachycardia syndrome as it increases standing blood pressure.

The Mayo Clinic were the first ones to report this finding and the link I posted earlier shows the use of mestinon in hypotension.

My own consultant wants me to take it but unfortunately I dont tolerate mestinon very well at all.

Rach

http://www.medicinenet.com/low_blood_pressure/page6.htm
http://www.ninds.nih.gov/news_and_ev...ypotension.htm
http://answers.webmd.com/answers/117...essure-treated

just some examples where mestinon is used to treat low blood pressure. The second website explains about the acetycholine. I hopes this helps.

I take Mestinon to treat my POTS/Dysautonomia as well as for my MG, and it helps me immensely. In fact I take it more for that than for the MG, as it isn't very helpful with the MG but very helpful with the near syncope, chest pain, shortness of breath, and heat intolerance I experience from dysautonomia. Before Mestinon, I was almost incapacitated from it. I could not walk up the stairs or up a hill without having to collapse to the floor, and would black out after any bath or shower. Forget standing in place, everything would start to swim...and in heated places, wearing a mask, etc...much worse.

Hi

http://clinicaltrials.gov/ct2/show/NCT00223691

The clinical trials link shows the trials going on in the USA with Mestinon for the treatment of postural hypotension in Autonomic failure.

Rach

Well I am taking pyridostigmine while constantly worrying about blood pressure. That is not good.

Well the Mestinon certainly wasn't stopping me from feeling faint.

Hi Celeste,

I am sorry that you have low blood pressure, the side effects of which can be truly debilitating alongside those of MG.

Is it worth you having the low blood pressure investigated? Keeping a diary at home to show when your BP is low is a great place to start as it can help you identify triggers - heat, exhaustion, dehydration or eating a carb heavy meal can all drop your bp.

It maybe worth finding somewhere tha can do a Tilt Table test to see if you have postural hypotension. If you have a look on the Dinet website that I posted the link for they have a list of Drs in the USA and all over the world that diagnose and treat patients with autonomic nervous system problems.

I hope you get some answers and find some way of raising your bp so that you feel better.

Rach

I guess I miscommunicated. I have problems with high blood pressure.

sorry maybe I misread what you were saying.

Mestinon didnt prevent me from fainting it reduced the number of times it happened. It isnt a cure all and sometimes needs to be used in conjunction with Midodrine (another medication I cant tolerate).

The best treatment I have found so far (and Im still fainting and have POTS) is Salt Tablets, Fluid loading (sports drinks are best for this) and a progesterone only contraceptive pill.

I am reaching the end of all the medicines I can try to reduce my syncope or pre-syncope.

Rach

dar78999, There are so many things that can cause fainting, such as being dehydrated! Do you have any known heart condition? Perhaps being evaluated for syncope is a good idea. Don't assume it's from a drug. A high or low BP can cause fainting too.

I faint when I experience extreme pain. I've never fainted due to Mestinon.

Rach, I think Celeste has high blood pressure. Right? Celeste has a very wry sense of humor. ;) Oh, you guys are quick! You snuck in there before I could post. I'm glad you clarified that, Celeste.

Annie

Thanks Annie.

Sorry Celeste I am not on here enough to have got to know everyones personalities! I know that I can come across as quite direct so I apologise if any offence was caused!

Dar - there are so many causes behind a faint it would be wrong to blame it on a medication before having a full evaluation such as a Tilt Table Test or blood tests to check you dont have something like aneamia (spl?). There are also many medical conditions that can cause you to faint. I have Ehlers Danlos Syndrome. Which causes the blood to pool in my legs on standing or even sitting with my feet touching the floor. I have to sit with my legs at the same level as my hips or I will faint sitting down - hows that for a talent lol! Thats why no medication - even mestinon is ever going to cure my fainting as it cant change the Ehlers Danlos syndrome!

Even eating a carb heavy meal can provoke a faint in some people.

I hope you get to the bottom of your faints but I do feel that mestinon probably isnt the culprit and something else is going on such as problems with you autonomic nervous system due to MG.

Rach

No offense taken. I hope that nobody gets offended by my off the wall sense of humor. Just for the record, I love you guys.

myasthenia gravis
 

hi i have never replied to anyone before, so if i'm not doing this right let me know. i'm 53 yrs old and have problems my whole life. these are the following problems i've had: myasthenia gravis, pots, supraventricular tachycardia, artial fibrillation, rupured discs, ankylosing spondylitis, sjogren's syndrome, i sweat so bad i'm emmbarassed, stomach problems, other things. going to cleveland clinic b/c twitching, leg cramps, toes do not move need help. 22 years like this.