Poll: Mestinon Trial

Have you tried Mestinon (pyridostigmine) for POTS?

  • Yes and it helps, I still take it.

    Votes: 11 13.9%

  • Yes but it did not help.

    Votes: 13 16.5%

  • Yes, but I had to stop because of side effects.

    Votes: 9 11.4%

  • No I have not tried it.

    Votes: 46 58.2%
  • Total voters
    79
Learner1

Learner1

Senior Member
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Mestinon is not a cure for ME/CFS. Many of us are prescribed it for postural orthostatic tachycardia syndrome or orthostatic intolerance which are common in ME/CFS patients. I am being prescribed it by a dysautonomia specialist, a neurologist, who tested me for dysautonomia. My ME/CFS specialist sent my blood to Germany for these tests which showed I had antibodies causing my symptoms and also has prescribed IVIG to help attack the autoimmune part of it.

https://www.celltrend.de/pots-cfs-me-crps.html

The attached case study describes how IVIG was used to help one patient.
 

Attachments

  • POTS MCAS IVIG LDN.pdf
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Mel9

Mel9

Senior Member
Messages
995
Location
NSW Australia
Learner1 said:
@*GG* Are you still on 120mg of Mestinon? Did it help? And Mel9, what dose are you on and is it helping? Have either of you noticed changes in heart rate?

On a beta bl8cker plus Mestinon, my BP is better, I can stand in a grocery line without fainting now, but my heart rate is too fast. Been in multiple drugs and nothing has worked yet, but I'm only on 60mg Mestinon. Wondering if increasing it would help...
Click to expand...


I am now on 30mg (half a tablet) three times daily. I am fine for three hours and can go shopping or do light work during this time. A few times I have overdone the physical activity, resulting in a ‘light’ version of PEM next day.


I start to get tired again by four hours after my last half tablet and need to be careful to take my next one quickly.

Often I don’t realise and leave it for five or more hours by which time my battery is well and truly flat.

I plan to try setting a four hour alarm.

My doctor suggested I gradually increase to three lots of 60g per day but I will take it very slowly to avoid the side effects.

My resting heart rate is down from 81 to 78 bpm. That is not a lotdifferent.

But: I can shower now with a reasonable heart rate (it used to go up to 150 bpm).

My POTS is almost under control for 4 hours after taking a tablet but I am careful not to ‘push’ it.
 
Last edited:
Pearshaped

Pearshaped

Senior Member
Messages
583
Sorry for messin up the thread but has anyone had noticed
sleep being affected(good or bad)
while on mestinon?
 
Learner1

Learner1

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Location
Pacific Northwest
It had no impact.

My doctor suggested looking into a chilinergic burden score which might give you a clue. You put in all your meds and it assesses your acetylcholine negating and promoting factors to give you an idea of where you stand, which may affect sleep, hallucinations, and POTS symptoms. (My mom, with Parkinson's was put on an anticholinergic drug, and all hell broke loose...)

You might also find this interesting...

 
LauraB

LauraB

LLB
Messages
23
Eve18 said:
I’m glad that it helps you. Great to know that it also helps wit exercise and heat intolerance.

I’ve just got scripts for both. Right now I’m on different beta blocker. However I was prescribed 60 mg pyridostigmine 3x daily. Thanks to all comments I will start with much lower dose.
Click to expand...
Mel9 said:
I am now on 30mg (half a tablet) three times daily. I am fine for three hours and can go shopping or do light work during this time. A few times I have overdone the physical activity, resulting in a ‘light’ version of PEM next day.


I start to get tired again by four hours after my last half tablet and need to be careful to take my next one quickly.

Often I don’t realise and leave it for five or more hours by which time my battery is well and truly flat.

I plan to try setting a four hour alarm.

My doctor suggested I gradually increase to three lots of 60g per day but I will take it very slowly to avoid the side effects.

My resting heart rate is down from 81 to 78 bpm. That is not a lotdifferent.

But: I can shower now with a reasonable heart rate (it used to go up to 150 bpm).

My POTS is almost under control for 4 hours after taking a tablet but I am careful not to ‘push’ it.
Click to expand...
Which beta blocker are you on? I had a Bronchospasm one night and my doc told me bc I took propranolol and mestinon can cause this, even tho they were spaced out by 5 hours. I had done it in the past with no problems, but I did up my mestinon that day from 30 to 45 mg. I need both so not sure what to do.
 
MartinK

MartinK

Senior Member
Messages
388
@LauraB I took both too! 2x 20mg propranolol and 3x 30mg mestinon. I would be quite interested in how many of you still use it together. I have not observed any side effects yet. But I don't have it for POTS, my problem is OI - extremely fast fatigue and muscle pain when stay or sit longer then few minutes.
 
J

Jo from Austria

Messages
14
I startet with 60mg per day and increased it to 300mg per day, it did not have any effect on my POTS Symptoms but I didn't have any side effect neither, only my gut seemed to be more active.
 
Learner1

Learner1

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Location
Pacific Northwest
Jo from Austria said:
I startet with 60mg per day and increased it to 300mg per day, it did not have any effect on my POTS Symptoms but I didn't have any side effect neither, only my gut seemed to be more active.
Click to expand...
I have taken pyridostigmine and propranolol concurrently. They didn't seem to interfere with one another, and I was on significant doses of both.

I did have unpleasant intestinal symptoms with pyridostigmine. Switching to Huperzine A, a supplement, has been just as effective for symptoms, without the intestinal side effects.

Propanolol stopped working - I switched to metoprolol XL which has been more effective.
 
LauraB

LauraB

LLB
Messages
23
two years ago I used to be on 90mg of Mestinon and took Propranolol as needed, no more than 20mg. I had no drug interactions, then a Doc had me wean off the Mestinon, I was off it a little over a year and then I had a really bad health crash in mid January. Now I think I'm drug sensitive, wasn't before the crash tho. I'm getting a lot of side effects from the mestinon, so I'm splitting my tiny dose taking half and then the one hour later taking the other half to try to minimize side effects of brain fog, and yes, faster heart beat, sweaty, tingly feet, the first two hours, then after that it calms down.
 
LauraB

LauraB

LLB
Messages
23
It also makes me feel wired and emotional. I can't get comfortable in any position, sit up, jump up walk, lay down constantly in a vicious circle. I find I'm not resting like I should be to try to recover from this crash. I did have a lot of weakness after the crash, but I wonder how I would be if I skipped a dose?
 
LauraB

LauraB

LLB
Messages
23
Learner1 said:
Thanks for posting @LillyME

The thing here is that they gave pyridostigmine to a bunch of young, healthy people who likely did not need their acetylcholine levels mucked with.

As my mom has Parkinson's, ive had the opportunity to see the range of horrible side effects that can happen with the wrong amount of acetylcholine.

I was prescribed pyridostigmine by a dysautonomia specialist who is a neurologist, and I can only say that it has helped me so far, and that I had full blown ME/CFS 2 years before starting the pyridostigmine.

I've had no bad side effects, so I'm concluding it is what my body needed. But I'm 30 years older, female and sick, so my bio chemistry is different than the young (mostly) men who were given it by the Army.
Click to expand...

If you don't mind me asking, who is your neurologist? I live in the Charlotte NC metro area and would love to find a neurologist who know about dysautonomia.
 
LauraB

LauraB

LLB
Messages
23
Here are the pros and cons of me taking mestinon right now after my crash.

Pros: more energy, but wired energy

Cons:

Raises heart rate, and blood pressure, and after a few hours may bring down heart rate.

increases inner tremors, wired, unable to get comfortable laying or in one position,

increases tingly, sweaty feet

causes heavy brain fog

Hot body feelings

Heart rate can be higher laying than in a reclined or sitting position

anxious

I wonder if there is a comparable medication I could try instead, bc this is kicking my butt.
 
LauraB

LauraB

LLB
Messages
23
Learner1 said:
Mestinon is not a cure for ME/CFS. Many of us are prescribed it for postural orthostatic tachycardia syndrome or orthostatic intolerance which are common in ME/CFS patients. I am being prescribed it by a dysautonomia specialist, a neurologist, who tested me for dysautonomia. My ME/CFS specialist sent my blood to Germany for these tests which showed I had antibodies causing my symptoms and also has prescribed IVIG to help attack the autoimmune part of it.

https://www.celltrend.de/pots-cfs-me-crps.html

The attached case study describes how IVIG was used to help one patient.
Click to expand...

Did you get the IVIG infusions, and if so did they help?
 
MartinK

MartinK

Senior Member
Messages
388
Hi all, now Im on 120mg/day (4x30mg of Mestinon), no side effects, no gut problems..BP and hr still the same (normal). But still no improvement. Its a 1 month on Mestinon now.

Do you think it is worth continuing or even increasing the dose? I don't want to take unnecessary risks. I think some had improvements even at a smaller dose...
 
Pyrrhus

Pyrrhus

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Learner1

Learner1

Senior Member
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Pendergast

Pendergast

Spain
Messages
89
Location
Spain
Hi all!
I copy here my experience with Mestinon from another post:

I started Mestinon few days ago. First 15mg, then 30mg and now I'm taking 45mg.

It was prescribed by my Neurologist. I was a little bit afraid about taking it. Thus far I tolerated it well. I pretend to reach 60-120mg/day

I did not notice any benefit (nor bad effect) yet.

Important to add: I don't have POTS (but I get my symptoms worse while standing up) so just trying it to see what happens and maybe improve the Exercise intolerance.
 
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