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Old 02-23-2013, 09:37 PM #1
dar78999 dar78999 is offline
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Default 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
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Old 02-24-2013, 08:45 AM #2
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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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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Old 02-24-2013, 01:43 PM #3
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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?
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Old 02-24-2013, 02:42 PM #4
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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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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Old 02-24-2013, 02:49 PM #5
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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.
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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southblues (02-24-2013)
Old 02-24-2013, 03:01 PM #6
Tracy9 Tracy9 is offline
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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.
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Old 02-24-2013, 03:10 PM #7
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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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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Old 02-24-2013, 07:12 PM #8
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Well I am taking pyridostigmine while constantly worrying about blood pressure. That is not good.
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Old 02-25-2013, 12:51 AM #9
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Well the Mestinon certainly wasn't stopping me from feeling faint.
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Old 02-25-2013, 04:59 AM #10
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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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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