Jump to content

Has Anyone Tried Mestinon?


kitt
 Share

Recommended Posts

Hi,

I've been on mestinon for almost 9 mo. I've posted my personal experience with it in several older posts - feel free to look them up, as others here on dinet shared their stories too.

I have - according to my dr - hypovolemic pots, so I am unsure if my experience with mestinon could be the same for someone with hyper pots, but here it goes.

Does it help? I am not so sure - mainly because I started this almost at the same time with florinef and propranolol so i can't quite tell what pill does what for me. Did it keep my HR under control 100%? No, not even in combination with the other meds loads of salt and water, but it definitely lowered it - sometimes even too much. Did it improve my overall energy level? Not exactly.

Side effects? Several - abdominal cramps that should have diminished in time but didn't, so I kept lowering my dose hoping they would go away...tough luck, blurred vision about 45 min to 1 h after taking it (this can last anywhere from 20 min to 1 h), excessive salivation, excessive sweating, excessive production of tears (I'd cry without actually crying), loose stools (sorry if tmi), muscle twitches all over the body, bradycardia accompanied by chest pain, painful esophageal spasms - eating or drinking is quite painful (again about 45 min to 1 h after taking it ).

I tried lowering the dose hoping to get some relief. The lower I got, the less of the side effects except for the stomach issues, only at my current dose - 15 mg (I started at 45 mg), it barely touches my HR anymore. These are expected side effects of mestinon, and some people tolerate them better than others.

Some "good" things about mestinon - from my point of view anyway- it has a relatively short action time (about 4 hours) so the side effects are short-lived (but at the same time that's why it requires several doses throughout the day). Also, if for whatever reason the drug doesn't work for you, according to my dr it can be stopped cold turkey without any withdrawal symptoms (unlike other meds ror POTS like beta blockers, florinef, benzos, or SSRI's).

I've said this time and again, what works for one of us might not work for another, as we all have different body chemistries, and even different flavors of POTS. Your drs might have a much clearer pic of your situation, so they can definitely help you weigh in the pros and cons of taking certain meds. I've read about mestinon as being a life changing drug for some POTS patients, but I guess you won't know until you give it a try.

Best of luck, and let me know if you have further questions.

Alex

Link to comment
Share on other sites

Kitt,

I am more inclined to think that mestinon doesn't help me. I'm not sure about its mechanism of action, but it reduces my HR to some extent. Yet I still experience many days with crazy high tachycardia, plus all the side effects I've listed above. (as a side note now that it's been about 1 h since I took it, I can tell you about another side effect I overlooked yesterday - shortness of breath; I feel as if I were breathing through a filter. I know it will go away shortly before my next dose, only to come back a while later).

My POTS is a bit curious as most of my tachy episodes happen when I'm supine, but i also have the increase in HR when standing. With all the meds I'm on my baseline HR is still elevated at times, ans I still get jumps of 30 bpm and even more when I get up, not to mention that i am far from functional.

I haven't gone completely off mestinon as even my drs contradict one another when it comes to its efficiency - some advise to continue taking it, others say I don't need it, and I'm right it the middle. What I have done is lower the dosage to see if i can get some relief from the side effects - I went from 90 mg total a day to 30 mg total a day and things haven't changed for good or bad. I am planning though to discontinue taking it shortly after I'm done tapering the klonopin; I'd rather take things one at a time instead of changing too many meds simultaneously.

I remember reading somewhere that mestinon is most likely to help those with the autoimmune variety of POTS.

When mestinon is prescribed for those with Myastenia Gravis, I believe it is a life long, relatively high dose treatment, so i'd be inclined to think that people are able to tolerate it for long term.

Good luck to both of you and keep us posted.

Alex

Link to comment
Share on other sites

It's been a *shrug* drug for me - on it for about 6 months here. I'm taking 60mg 3x daily; I tried going up to 120mg 3x daily but had issues with slurred speech and confusion, so we dropped the dose again. I think it helps a little bit with fatigue, but it's hard to say; I might stop it in a bit, though will watch to make sure it's not helping with the dry mouth/etc side effects of clonidine. Certainly less of an obvious effect for me than atenolol and clonidine, and less useful than methylphenidate (Ritalin).

The best layperson's description I can give you... let's see here. So acetylcholine is the main neurotransmitter (signalling chemical) of the parasympathetic nervous system (PSNS), which is the "calming" branch of the autonomic nervous system (ANS). The PSNS promotes things like digestion, salivation, decreases cardiac output, etc. Acetylcholine is broken down in the body by an enzyme called acetylcholinesterase (which stops the acetylcholine from working) to keep the signals from propagating endlessly. What pyridostigmine/Mestinon does is block the action of the acetylcholinesterase for a short period of time to allow more acetylcholine to hang around, which promotes the action of the PSNS. It doesn't cross the blood-brain barrier, which means that it only acts in the body itself rather than having some central nervous system/brain effects. In short, Mestinon supports/enhances the PSNS, which increases "relaxation/calmness" types of activities in the body, including decreased heart rate.

Link to comment
Share on other sites

P, that is a great lay description! And, I love the description, "shrug drug!"

I have been on it for 9 MOS. And I too have thought it was a shrug drug. It was prescribed for me by Cleveland clinic for exertional intolerance when they learned I couldn't tolerate Midodrine. At that time I was homebound and unable to exercise.

Like others I just stayed on it. I have not noticed any direct side effects. Although I have many of the symptoms Alex described above thus far I have not connected them to the Pyridostigmine and don't seem to have any problem immediately after taking. (Isn't it funny how we are all so different!). I have not noticed an improvement in BP or HR.

Here's the interesting thing- i had been on 60mg 2x day and recently stopped it, not intentionally- but ran out by accident. Went a whole day and a half without and noticed a huge increase in fatigue. It was like I could barely get out of bed. I've since upped my dosage to 3x day without side effects and have a very mild improvement in fatigue. I now exercise strenuously 3x a week and wonder if it in part has to do with this med.

As a side note like you Kitt, I have Hyper POTS w MCAS. But I also have severe blood pooling/ hypovolemia issues.

Link to comment
Share on other sites

Peregrine,

thanks for the explanation. It makes a lot more sense now.

"shrug" drug indeed.

Kelly,

can you please clarify something for me/us have you had those symptoms I listed as side effects before taking mestinon? Any particular reason you don't think they are related to the mestinon?

Thanks,

Alex

Link to comment
Share on other sites

Alex, yes. I had all those symptoms before and, as a short acting drug, I don't notice an increase in those symptoms within the first hours following taking it. (note: for me unless it is a long term side effect such as hair loss I tend to notice side effects within the first 15-30 mins after taking something. I have become super sensitive to drugs and chemicals of almost any kind so I don't know if that is just me or not.)

Rama, can you explain how this helps your baroreflex responses?

Link to comment
Share on other sites

So I'm a Mestinon success story. I've been on it for just over a month now and my neurologist titrated me up to 60 mg 3x a day over the course of the first three weeks. It has significantly improved my digestive issues, helped my neuropathy and regulated my heart rate and, best of all, I've had no side effects. As I was increasing dosage is have a little digestive upset for a day or two, but then things would adjust and I'd have no problems at all. I take mine with meals, per my neurologist's instructions and really consider it a miracle drug. My doctor did say it seems to help those with less severe forms of dysautonomia and also seems to be most effective for those with sympathetic nervous system issues, so this may factor into people's experiences. But, speaking for myself, I could not be happier.

Link to comment
Share on other sites

Kitt,

I didn't struggle horribly with energy issues from the outset (which always baffled me). But my sleep was HORRIBLE. What I've found is that because everything is working so much better now, especially digestion and muscle function, I don't feel as run down. If it makes sense, before I was taking the Mestinon I always felt like everything was taking so much effort. Like because my body wasn't working right everything took twice as much effort. Now, however, things are running along much more smoothly and, as a result, I feel more focused.

Now, the other lifesaver for me has been Klonopin. Even once I'd increased the dosage of the Mestinon I still couldn't sleep for you-know-what. And we tried everything. Finally we gave Klonopin a whirl. For some reason, taking the 60 mg of Mestionon 3x a day and 2 mg of Klonopin at night right before bed (I take 1 mg 30 minutes before I go to sleep and 1 mg right as I crawl into bed), it's like I'm almost back to my old self. (Well, as close as someone with dysautonomia can be, of course!) I usually go to bed at 9:30 p.m. and I will wake up once during the night (sometimes at 2 a.m. other times at 4 a.m.) and then I fall back to sleep until my alarm goes off at 6 a.m. I wake refreshed, energized. Again, no side effects. For me, and obviously this is just my personal experience...but for me, this combination has been a god-send.

I really hope that over time you find it brings you some relief. And if there's anything else I can answer for you, please let me know.

-Jen

Link to comment
Share on other sites

Kitt,

Like I mentioned before, I have been on mestinon for 9 mo and sleep has been an issue almost throughout the entire 9 mo. I strongly doubt it can help with the sleep issues. Also, I've never taken it after 4 PM, I'm unsure why, but I recall my dr stating something about mestinon not being needed at night... bad case of brain fog lately ...wish I could remember what it was that he said.

Also, could you please post the link about mestinon being helpful in 45% of cases - I'd be curious to read more about it.

Thanks

Alex

Link to comment
Share on other sites

Thanks a lot for getting back to me Kitt.

Will read those articles probably tomorrow.

I'll have to see if anything applies to me as i am supposedly hypovolemic pots.

Also, I never had any digestive issues, and despite having a low-ish bp, I don't get lightheaded or dizzy, nor do I faint.

Sleep is a big issue for me, more so lately. I am hoping my sleep will return to normal once I get off klonopin - I am weaning off it now and withdrawal symptoms are horrible.

Meanwhile I've tried with no luck a bunch of meds and/or herbs: benadryl - doesn't even make me drowsy, melatonin - didn't help and for the 1st time in a long time I got dizzy when i tried it as my bp was in the 80's, some otc sleep aids- waste of $, valerian - doesn't help me, linden tea -zilch, passion flower - another dead end. I am severely sleep deprived at this point, and have run out of options. For the time being I'm at a loss, so I'm ....counting sheep.

Again thanks.

Alex

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...