Still Trudging Along On The Mestinon

[babettess]

Well I made it through the first week of taking 7.5 mg of Mestinon. I am nauseated for about 2 hours everytime I take it, but its not horrible. I read that the nausea usually takes a week or so to calm down. I am taking it with food. I am supposed to increase my dose next week. I'm wondering if the nausea will go away and then come back as soon as I up the dose. My next 3 weeks are crazy for me and I need to feel the best I can. I might just hold off uping the dose until after my life calms down and I can deal with the nausea. ( That is if it even goes away. I tried Zoloft for 5 months and was nauseated every single time I took it. )

Any ideas?

Thanks,

Babette

[kayjay]

Hi- I do have H-pots and am taking 30mgs 2x's a day...but my bp has been high. I am not sure what this drug is supposed tp do for us. I think I am less tired but not feeling "better". With the BP swing I am having headaches are more of a problem.

Anyone have high bp on this drug?

Hope you are doing well Babette!

[sue1234]

I was wondering the same thing--what is the drug supposed to do for dys.? I have been reading about people being on it, but not sure what in the body it does. I have hyper-POTS also, so don't know if it is for that or not. Can someone fill me in on what it does? All I know is it is used for people with myasthenia gravis(if I remember correctly!).

[janiedelite]

Initially mestinon provided a bit more energy and actually decreased the burning pain I have in my feet and hands. As I increased my dose (got up to 180mg/day) I started having spikes in my BP even while I was at rest that were only relieved by nitroglycerin. I have mild hyperadrenergic POTS and after two of these very scary BP spikes (over 185/105 that lasted for hours), I stopped the mestinon. What do you know.... no more spikes!

I think mestinon is supposed to provide vasoconstriction when we stand up. At first I did have this effect. My normally high BP on standing actually went down to somewhat normal ranges. But the longer I was on the drug the more headaches I had, my standing BP started rising, then I started having these BP spikes accompanied by waves of coolness, chest pain, and a really detached feeling. I went to the hospital during the first of these BP spikes and my troponin was elevated, I was kept in the hospital overnight. My cardiologist then prescribed the nitrates to be taken as needed, but he couldn't say whether the mestinon caused my coronary vasoconstriction.

I'm prone to excessive vasoconstriction anyway. One of my first POTS symptoms was frostbite even though I was only indoors. Also, I actually benefit from a small dose of nitrates. They actually GIVE me energy. I also do have problems with pooling, but my sympathetic NS is already in overdrive so I chose to forego the mestinon.

[McBlonde]

I can't take it either because it gave me bad headaches.

I took Florinef for years and had no problem. Then, in August, when all this POTS stuff started (or rather, I was dx'd) suddenly, Florinef made me have headaches.

So far that's Florinef, Midodrine, and Mestinon all give me bad headaches. What is it that they all have in common that would do that?

[Simmy]

From Webmd:

"Pyridostigmine (Mestinon) is used to improve muscle strength in patients with a certain muscle disease (myasthenia patients with a certain muscle disease (myasthenia gravis). It works by preventing the breakdown of a certain natural substance (acetylcholine) in your body. Acetylcholine is needed for normal muscle function."

My doctor prescribed it to me to help the leg muscles push up the pooling blood. I was on 60mg 3x, but the nausea and abdominal cramping became too severe, usually about 90 minutes after taking it. I cut back to 60mg 2x and that's better for me. I also take Midodrine, a vasoconstrictor, 10mg 3x.

The combination of all of my meds have helped my blood pressure become somewhat more stable and have overall lowered my heart rate by about 20bpm, but the >30 and head explosions when I stand still remind me who's boss. The worst side-effect of the meds for me is this all-day stuffy head and overall yucky feeling that I think I can attribute to the Mestinon. I'll try it a little while longer and decide if the benefits outweigh the yuck.

[erik]

Acetylcholine is the key neurotransmitter for the parasympathetic nervous system (except for sweat glands, IIRC) whereas norepinephrine is key neurotransmitter and hormone for the sympathetic nervous system. I like to characterize Mestinon as like an SSRI for acetylcholine... which gives a half-accurate analogy. I'm sure there are numerous implications of boosting acetylcholine, but if nothing else it represents shifting the balance between sympathetic vs. parasympathetic nervous system activity (those two "branches" of the ANS tend to oppose each other in overall effect).

Since POTS especially is characterized by too much sympathetic activity... this notion seems to fit. I think I've heard docs mention "parasympathetic withdrawal" as part of their diagnoses too... which makes a parasympathetic boosting drug seem especially handy too. As with any drug, I'm sure there are plenty of more detailed ways to look at it, though.

It is different than some comparable drugs in that, assuming I am remembering correctly, it doesn't cross into & have effect in the brain... just outside. This distinguishes it from semi-similar drugs which tend to come up in Alzheimer's and such (acetylcholine is pretty key inside the brain too but that is not said to be adjusted by Mestinon).

[janiedelite]

Well, Erik's post made me curious about where I'd heard about pyridostigmine helping only when you stand up and here's the article (written by Dr. Low):

http://www.ninds.nih.gov/news_and_events/n...hypotension.htm

This article was written about study using pyridostigmine in combo with midodrine to treat various dysautonomias.

Here's the section where it addresses how pyridostigmine works:

"pyridostigmine is thought to work by slowing breakdown of the nerve-signaling chemical acetylcholine, which is used by a cluster of nerve cells called the autonomic ganglion. The autonomic ganglion transmits signals from the central nervous system to the peripheral nervous system. Signals from the autonomic ganglion are minimal when people are lying down, but increase dramatically whenever they stand up or undergo other "orthostatic stress" that causes the body to adjust to maintain normal blood pressure. Therefore Dr. Low and his colleagues theorized that pyridostigmine would increase blood pressure only when people stand up, and that it would work in proportion to the amount of orthostatic stress they experience with different activities."

I wish I knew why this drug caused the spikes in BP. According to this article, it shouldn't have acted that way because it's supposed to only work in response to the amount of orthostatic stress I'm under. Either way, this article was written only after one dose was given, and followed up an hour afterward.