Poll: Mestinon Trial

[Learner1]

What beta blocker are you on? What effects have you noticed? The doctor prescribing the pyridostigmine is a dysautonomia specialist, and he says he usually starts people at that dose.

The compounding pharmacy kept flagging the combo as one's heart rate and BP can get too low on propranolol and pyridostigmine together. My heart rate and BP run high, so that's a benefit, but the dicyor also says he has several other patirnts on this specific combo at low doses.

 

[Eve18]

What beta blocker are you on? What effects have you noticed? The doctor prescribing the pyridostigmine is a dysautonomia specialist, and he says he usually starts people at that dose.

The compounding pharmacy kept flagging the combo as one's heart rate and BP can get too low on propranolol and pyridostigmine together. My heart rate and BP run high, so that's a benefit, but the dicyor also says he has several other patirnts on this specific combo at low doses.

Thanks for letting me know. My hr runs really high and beta blocker doesn’t help much. My bp is on a lower side, I’ll be monitoring my bp closely.
I see a regular cardiologist who is not knowledgeable about dysautonomia.
Thanks for all info.

 

[LillyME]

Hi all,

since the article on healthrising and the video of Dr. Systrome I consider taking Mestinon. By accident I came across some information about Mestinon that worries me. Mestinon is mentioned in connection with gulf war illness and there is a hypothesis that Mestinon (Pyridostigmine) might caused/triggered Gulf War Illness. Mestinon was widely given to soldiers during the war as an anti-nerve agent pill against toxic/nerve gas attacks.

https://www.publichealth.va.gov/exposures/gulfwar/sources/pyridostigmine-bromide.asp
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116950/
https://www.sciencedirect.com/science/article/pii/S0010945215003329

As Gulf war illness and ME/CFS share similarities, I wonder if I put me in danger taking Mestinon.

Did you hear about that and if so what do you think?

Thanks
Miriam

 

[Learner1]

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.

 

[frozenborderline]

I am possibly starting mestinon soon. I don't really want to or think it will help but I don't want dr to think I'm non-compliant. Have some concerns about it. if there are side effects, should it show up quickly?

I probably have POTS, but it is not my primary complain. I respond well to IV saline though, which is part of why the doctor thinks it will help.

For reference, I had terrible reactions to beta blockers, which are supposed to be pretty mild drugs, but caused awful air hunger and I'm just paranoid about stuff that might impair cellular bioenergetics in any way.

 

[frozenborderline]

Oh and I'm also paranoid about the gulf war thing.

 

[frozenborderline]

I don't get crazy heart rate or blood pressure problems, that bother me more than the general symptoms of awful fatigue etc

 

[wigglethemouse]

For reference, I had terrible reactions to beta blockers, which are supposed to be pretty mild drugs, but caused awful air hunger

If you haven't done so already you may want to look into MCAS. Beta blockers may lower the threshold for mast cell de-granulation.
https://www.mastattack.org/2017/03/beta-blockers-epinephrine/

 

[Learner1]

My ME/CFS specialist identified my MCAS and prescribed a beta blocker for my adrergic antibody-driven high BP. My dysautonomia specialist agreed with the beta blocker and added pyridostigmine, says he hss lots of patients on both. Neither mentioned the possibility of mast cell degranulation, though, and i haven't had any problems.

 

[frozenborderline]

My ME/CFS specialist identified my MCAS and prescribed a beta blocker for my adrergic antibody-driven high BP. My dysautonomia specialist agreed with the beta blocker and added pyridostigmine, says he hss lots of patients on both. Neither mentioned the possibility of mast cell degranulation, though, and i haven't had any problems.

I haven't really had high bp or much adrenergic problems and beta blockers make me feel like death itself, so I really wonder about trying mestinon

 

[frozenborderline]

hmm apparently the mestinon costs a LOT which might be good in this case as I can have a good excuse to put off trying it

 

[Learner1]

I haven't really had high bp or much adrenergic problems and beta blockers make me feel like death itself, so I really wonder about trying mestinon

Beta blockers and Mestinon do different things, you may not need both. I have found that being able to stand in a grocery line or talking to someone without passing out adds to my quality of life. And it has increased my ability to exercise without crashing as often.

 

[bombsh3ll]

Decent laxative but no help with POTS. I am in the UK so have to buy anything for POTS online, whereas I get a prescription laxative which does the job so there was no point in me continuing mestinon.

 

[Ruthie24]

I tried Mestonin several years ago. I found it helped with my high HR but it didn't help with the hand tremor and some other symptoms that the low dose beta blocker helped with so my doc and I decided to go back to the beta blocker.

 

[*GG*]

Are you taking any other medications for POTS like beta blockers or fludrocortisone?

I am, my Dr Just prescribed me 60 mg Mestinon 2 times a day (took 1 dose 11/16 and 2 doses yesterday), so daily dosage of 120 mg. He also increased my Florinef from 0.1 mg to 0.2 mg a day, can go up 0.3 he told me.

GG

 

[Mel9]

Beta blockers and Mestinon do different things, you may not need both. I have found that being able to stand in a grocery line or talking to someone without passing out adds to my quality of life. And it has increased my ability to exercise without crashing as often.

I have been on mestinon for three days now. So far I think I may feel a little better. I am really hoping for the ability to stand in grocery line without the worst of the POTS symptoms.

 

[Learner1]

@*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...

 

[*GG*]

@*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?
/QUOTE]

No, I am now up to 180 mg for about 2 weeks now. Nothing significant yet, hope it works for me!

GG

 

[Learner1]

Wow, thats a lot! Do you take it a at once? I was started on 10mg 3x a day...

Why were you given so much and are you taking anything else for POTS with it?

 

[*GG*]

I don't think I have been diagnosed with POTS. Don't really know what that is. Would florinef count?

I am taking that much to try to get better from the ME/CFS.

GG