Who's Tried Mestinon?

[scarfgirl]

I know there's similar posts regarding mestinon, but you know.....brain fog, don't really want to sort through them all. So if you're taking or have at least tried mestinon, what was your opinion of it?

Thanks muchly,

Stacy

[Guest dionna]

i tried mestinon but i was allergic to it so i wasn't able to really try it. it did give me a lot of side effects though. it may be worth you atleast trying. you never know until you try, right?

dionna

[Ernie]

Hi,

Gave me bad diarrhea.

[Sunfish]

it definitely helped me, though more with my GI hypomotility than with orthostatic issues, at least for some period of time. it helps (or helped...not sure if it still is) my ability to remain upright a bit longer but the GI benefits were stronger for me. the same thing many have problems with was the best thing for me...it allowed me to eat fairly normally for almost a year longer.

and i know it takes time & energy, but i'd still recommend reading some past posts. there's been a lot of discussion & b/c many of us are limited energy-wise you're not likely to get a lot of really thorough answers here from those who have replied already.

melissa

[corina]

hi kexia,

don't think we've met yet, so hi to you and welcome around.

i've been answering the mestinon questions almost always and will try again. like sunfish says, it takes a lot of energy but i do think mestinon is one of my most helping meds.

it took me lots and lots of perseverance because i've been having a lot of stomach problems (which is always my problem with meds) but my doc asked me to hold on and finally i was glad that i did.

for me, mestinon isn't a MIRACLE med, but it helps me a lot with keeping my body at temperature (i always can tell when it stopped working because i got very very cold again), with walking a bit better (my walking like being drunk i mean) and overall doing a bit better. as i'm having brain fog trouble riht now i can't explain any further, so when you have the energy try and find earlier posts.

what i wanted to say is: i wouldn't want to be without the mestinon anymore!

hope this helps,

corina

[Eillyre]

KeXia,

We definitely understand the brain fog issue!

Mestinon has been a life-saver for me! At this point (more than 1 year on Mestinon), POTS has almost no apparent impact on my life as long as I take my meds each morning (180 mg XR version once daily); if I miss a dose (as I have done only once -- the outcome was enough to serve as a permanent reminder!), I'm back falling on the floor, completely lightheaded and tachy.

I have experienced almost no side effects (rarely had minor cramps in the early days of trying it out). It really helps to work up the dose very, very slowly (I worked up to 180mg over 6 weeks) and to never take the pill(s) on an empty stomach. I did start with the regular tablets (as opposed to the XR tablets) while working the dose up, but have found the XR just as effective in controlling my symptoms (and I find 1 pill easier to remember than 3!).

As you can see from the earlier posts, this is not the experience that everyone has. However, I do know other POTSies that have found Mestinon very helpful (even if they aren't on the forum to anser your post). I would certainly check with you MD to find out it if it might be an option to try. I had a lot of trouble with some of the other standard POTS/OI meds, so this has been a great choice for me! You'll never know how you'll react until you try.

If you have any other questions about my experience with Mestinon, please feel free to PM me!

Best of luck,

Angela

[Dizzy Dame]

Mestinon has been a great help to me. I haven't had the stomach issues that many have, but I always take the medication with a bit of food, since I think it can cause lots of stomach cramps if you don't.

I'd say it's worth trying. It's been very helpful to many on this forum.

[goldicedance]

I will preface my remarks with the comment that I am very tired and not in the best of spirits.

I would certainly recommend trying Mestinon--particuly, since Mestinon is a very short acting drug.

I am not sure that other people's experiences are that relevant since we adjust to medications differently and have different tolerances with regard to balancing negative side effects with positive benefits of being upright. Mestinon aggravates my GI system; however, I am willing to put up with that in light of the positive benefits I get. Frankly, any little bit of improvement I get is welcome. It surely beats the alternative of maintaining status quo or worse.

I have been suffering with POTS since 1994. My POTS is being controlled with a basketful of drugs - mestinon, midodrine, neurontin, zoloft, ritalin, and sometimes PROCRIT and IV fluids. However, to get to this point, I tried in varying combinations and dosages - beta blockers, clonidine, florinef, sandostatin, and the list goes on.

Frankly, if I was not able to resume a fairly normal or even a restricted lifestyle, I would pay strong attention to the list of the drugs and treatments that Dr. Grubb has outlined. I would cross off those you have tried without success, and explore the others with your doctor.

I was and continue to be very receptive to trying medications if there was any thought that there would be improvement.

Throughout my membership on POTS place, I continue to be struck by the number of people who either haven't tried the various "first-line" POTS drugs or don't want to try a particular drug. I am of the opinion that you have to be willing to try different things as long as there is the possibility of feeling better.

I see reluctance to try a drug recommended by the POTS experts as somewhat indicative of reluctance to move forward in feeling better. Perhaps I shouldn't say that, but it always frustrates me when I see that many have not seemed to try the different meds for whatever reason and remain feeling miserable.

Oh well, at the end of the day, the choice is yours. But, I would think it beneficial to ask to try Mestinon as long as it is not contra-indicated based upon your own situation. That goes for the other POTS mainstays.

[Rachel]

Hi,

I tried Mestinon for a couple of weeks. It helped me feel better at first (more strength and energy), but after 3 days the medicine had built up in my system and the side effects got to me and I couldn't walk at all because I was so weak. I'd like to try it again, but in a smaller dose. My neuro told me that there is a liquid Mestinon that would enable us to do a much smaller dose than we can do with the pills. And someday when I have insurance again I'm going to give it a try. Mestinon is one of the very few drugs that has helped me even a tiny bit.

Rachel

[scarfgirl]

Wow, thanks for all the responses.

I've been limited in medical recourses for almost a year because my doctor was busy having a baby. But now that she's back from maternity leave and my weird little clonidine crisis is over we're looking at the options about what to try next. I'm doing better, but I'm still not stable enough to work, which of course is my ultimate goal. So back to medical musical chairs.

Mestinon isn't listed in any of the research I have, but I had noticed it get a lot of hype so I wanted to get more info from people who had actually tried it. It's always hard trying to decide where to go next, especially since you always have the possibility of making yourself worse instead of better (or like Adderall that worked miracles but had that one annoying side effect of making me manic and suicidal).

Goldicedance, you mentioned a list of drugs that Grubb outlined? Where can I find that list? I've never seen him, but I did have him send me a bunch of research and we've mainly been going on that. However, both mestinon and procrit are absent from that list. Maybe it's time I requested a research update.

Thanks again guys.

[Sunfish]

here's a link to dr. grubb's most recent article on POTS, though some of contained info may be helpful in other dysautonomias as well. it has a lot of info re: treatment options, including procrit/epogen & mestinon.

http://www.medscape.com/viewarticle/522421

hope this helps,

melissa

[Jacquie802]

Hi,

My cardio is referring me to a new neuro. to see about putting me on the Mestinon. My cardio thinks it would help me out a great deal, but he said he would like to see what a neuro has to say about it, since this particular neuro I am going to see has alot of experience with the drug.

Anyhow, I hope if I do end up being prescribed the Mestinon that it helps!

Jacquie

[pickledfairy]

I have been on Mestinon for four weeks now. I haven't noticed any side effects (I am on 60mg three times a day) as of yet, so maybe I will be one of the lucky ones. Like Sunfish it has helped me more with my GI hypomotility (i.e. no more constipation) but has not helped me with any of my orthostatic symptoms or nausea. I say that any drug is worth a try if it could potentially get us back on our feet. It looks like my neuro will keep me on the Mestinon and add others to see how the combination affects me. Good luck and I hope it works for you!

Sheridan

[scarfgirl]

Thanks for the link Sunfish! I'll drop that off at the doctor's office first thing next week. I especially love the diagram in that article. I've been trying to put together something similar for ages and now I won't have to.

Saw my Dr and my blood pressure was too high (never thought I'd live to see THAT) so we're gonna work on getting that under control by weaning me off of Florinef a bit before looking at new meds.

Sheridan and Jacquie: Good luck to both of you, I hope it affects you positively. Keep me updated.

[gelann]

I believe that Pyridostigmine is the same as mestinon and is mentioned in Dr. Grubb's article that is noted here earlier.

[Sunfish]

yes, mestinon is the brand name for the generic pyridostigmine bromide. with such a mouthful of a generic brand it's usually referred to as mestinon for sanity sake!

and yep, like i mentioned above with the posted link, it is discussed in the article.

melissa

[corina]

thanks for the link melissa, i've been searching for a doctor to discuss epogen as a try for me, but found no one so far. the article might help me!

warm wishes,

corina

[Leigh]

To respond to the following comment, "I see reluctance to try a drug recommended by the POTS experts as somewhat indicative of reluctance to move forward in feeling better. Perhaps I shouldn't say that, but it always frustrates me when I see that many have not seemed to try the different meds for whatever reason and remain feeling miserable."

AMEN!!

I stopped reading posts for a few weeks because I just couldn't take it anymore. Just like many of you, I'm not trying to make enemies, but many need help waking up and getting motivated again. It's 10 times harder to get motivated now that I have POTS, but all I have to do is look at the things in my life that used to make me so happy and remember it. I want to get back to that life so desperately, I'll try ANYTHING!

I got on Florinef/Potassium and thought it was a miracle drug until about a month later and my left side went numb and I passed out over and over until the paramedics came and hauled my butt to the hospital. Then, the cardiologist on call from my doc's office recommended Mestinon/Pyritostigmine because of Dr. Grubb's article.

It's only been a week, but I can throw my son up in the air again! I can smile and MEAN it! Before I'm 30, I'd like to LIVE again.

I am determined to help others. So, please, if you are someone who is afraid to move forward or just plain afraid of POTS, then something isn't right. Try different combinations until you get something that will work for you and at least help you deal with this. It shouldn't be a life sentence like many autonomic conditions/disorders/diseases.

[kitchenqueen]

I am currently on mestinon 60mg a day and found it has made a difference reducing palpitations and standing heart rate. I haven't had bad side effects. Having said that my doctor just put me on two months leave from work today.

kind regards

KQ

[momdi]

My son has been on mestinon for a few months now. He went off for a day b/c his prescription ran out and experienced a very strong sensation of his heart pounding, over and above the usual tachycardia.

Anyway, he only takes a half tab twice a day, which I think is 15 mg (though it's prescribed for 3 times a day). It slows his heart rate a bit (ie, just enough) and he doesn't have any real side effects. He also takes inderal 10 mg 3x/day.

It certainly was a good thing for him, and I was really afraid of the side effects when he started it up. Hope it works as well for you. Like so many of the meds, you just need to try it and start very very very slowly.

[sonshine456]

I've been on mestinon for almost a year now. It really was a miracle drug for me. I had side effects big time in the beginning but they do get better. I had to play around with the dose quite a bit too. completely worth it all. I can't say enough good about it. My pots was really really bad..i was barely functioning and it brought me out of it and it's maintained its effect for me. my biggest complaint about the side effects was the twitching...which i figured out you just have to make sure you eat enough when you take it and that helped alot.

My sister also tried it...she has a different grouping of symptoms than me...and it unfortunately didn't work for her.