So I have been taking Mestinon for probably about 6 months and other than having some adjusting to do in the beginning I've really liked it. I'm on a low dose - have built up slowly to 20mg 3/day. Just recently I'm having more autonomic problems - and it seems to be worse when I take the Mestinon. I'm really confused because until this point the Mestinon has always made me feel better. Is is possible that something has changed and it's making me feel worse? Has anybody else had a similar experience with this drug?

I also take Mestinon, but I've only been on it a short while so it's probably too early for me to start advising others on it, other than to say it sounds as if your dose may now have become too high for you. If you are feeling worse when on it, maybe try cutting back a little. Maybe twice a day is better than three times right now, or some variation of cutting back, so you can see if it is in fact the Mestinon doing this to you. Mestinon is one of those tricky drugs...too little, and it does nothing, or too much and it makes you feel worse. Talk to your dr on your next follow-up and see if he or she thinks cutting back is the answer.

Gillian

It took me a long time to like Mestinon. Now I can clean house, shower before work, all kinds of stuff that was totally unheard of before. Now I'm still crappy for a couple hours in the morning but it's worlds better.

Here's what the keys were for me:

1. Feather the dose, for sure. I'm still only taking 1/2 what the docs want me to take. 60 mg twice a day is too much, I feel all headachey and fuzzy. 30 mg twice a day seems to be perfect.

2. It didn't really help until I quit my beta blocker. My heart races so I feel a little fluttery or anxious but I'm MUCH more energetic. It was like the Mestinon didn't work until I gave up the beta blocker. Now it's GREAT.

3. I do much better when I take on the 4 hour interval religiously. I was waiting to take my second dose for 6 hours or so (because it was conflicting with the med to slow down my bowel) and that doesn't help near as much as when I do it right at 4 hours after my wake-up-in-the-morning dose.

Keep trying it. The first 2 months I was on it I was ready to pour it down the drain -- it tore up my bowel and I was nauseated 100% of the time. It just took me a while to adjust and figure out exactly how it would work for me. And the gains were incremental -- I was thinking "fuff, this isn't helping me" until my husband pointed out how much more mobile and capable I am than I was in July. So it's really made a small change every day and now it's a big change.

Good luck with it!!!

Mynagirl,
First let me say thank you for posting that. I'm in the beginning stages of Mestinon, and your post about hating it during those first couple months, and taking the doses too far apart, rang so familiar and true for me and what I am currently going through. It feels so good to see that maybe hanging in there with this will benefit me so much in the future. We can only hope!

Second, my jaw dropped when I read that the key for you was getting off a beta blocker! I take a bb too (Bystolic, 10 mgs morning and 2.5 in the eve) and I can't imagine going off it although I have often wondered if I should. It's tricky with me though, since my BP is now too high at times instead of too low as it once was. Could you explain why it is that going off your bb made the Mestinon work? In what way?

Thanks for the info. I'm having a hard time but not giving up. I still feel this could be the drug for me.

Gillian

I have been on slow release (time span) mestinon for several years. Some times it seems to build up in my body. I take a drug holiday for a day or two to get it out of my system from building up to much. Everything is fine then for another week or two. Ask your doctor about this.

Elsa,
Does this happen to you every couple of weeks?

Mestinon actually increases the effectivness of beta blockers so if you don't at least decrease the beta blocker it would be like you are really taking double the dose. I am fine with taking half the dose of beta blocker I used to, I have IST and I cannot stop taking it.

It didn't seem to have any consistent pattern. although as soon as I started getting muscle twitches I would cut back.

Two months ago I found out I had celiac disease and have been on a gluten free diet. I've improved, my blood pressure is not dropping as low and the mestinon is working more consistently. I had thought for along time I had another autoimmune process going on in my body besides type 1 diabetes.

It makes one wonder if celiac disease affects how our medications is absorbed. Celiac disease can be silent for a long time and they now say 97% of the cases are undiagnosed in the USA. Celiac disease can cause neuropathy and mimic gastroparesis.

Yes, Celiac Disease causes foods, nutrients, medications, and everything else from being properly absorbed into the body, since the villi in the intestine are flattened, and cannot reach up and grab the nutrients and medication as it makes its way into your stomach and intestines. I experienced the same thing a few years ago until my Celiac was under control.

Gillian

dx celiac 2003, dysautonomia 2003, colitis 2004

So I am thinking what is going on is related to whatever virus I've been fighting. I am extremely discouraged and frustrated because I have definitely have a pretty big setback dys-wise. I had been doing pretty well and now I'm back to having difficulty standing and an overall feeling of just ICK. Nobody seems to get it since I often can't describe it. Anyway, I'm taking 15mg mestinon 3/day now and will try to slowly go back up to 20 and see how I do.

I HATE THIS FRIGGIN ILLNESS!!!!

I have POTS and hypotension. I have struggled with this condition for several years and tried different medications without success. However, this past year I was prescribed Midodrine and Mestinon. The combination of these two medications have literally changed my life. I think back to where I was a year ago and how I have improved significantly brings tears to my eyes. Obviously, this did not happen overnight and I had my share of ups and downs even with these meds.

Listen to your doc and listen to your body. Midodrine for me caused insomnia and scalp tingling but these side effects faded. Mestinon caused some muscle twitching which still occurs but only slight.

I started on low doses and have worked up to:
Midodrine 10mg 3xday
Mestinon 60mg 3xday
I have been on these steady doses for about 6months.

I hope you to will find that right combination that works for you.
TDAWN

TDAWN,
Did you ever feel that awful sort of drugged feeling with the Mestinon? I'm only on 15mgs a day right now (just getting started) and I feel hungover as the drug wears off. When I tried taking a 2nd dose of the 15mgs later in the day, I felt so drugged out that I awoke the next morning thinking back to what I had done the day before that was making me feel so hungover...and then it was like, "Oh, right. I took my medication!" It shouldn't be like this. Is this "normal" for the beginning stages of Mestinon? It doesn't feel like this every day, but it happens often enough. I don't want to give it up since it definitely does increase my walking ability and muscular strength.

Gillian

Gillian,
Could you talk to your doctor about switching to the pediatric/liquid version of the drug? That way you could ease yourself into even slower. Maybe the second dose of 15 is too much for you.

Just a thought - I use the liquid version and like it much better!

dsdmom--What is it about the liquid that makes things easier? I thought about trying that, but was a little concerned about a few of the ingredients in the syrup, since I have Celiac Disease and I remember there was something in the syrup that I thought may have traces of gluten, so I decided on the tabs instead. Also I'm so much more used to dealing with pills than a syrup that I was worried maybe I wouldn't measure correctly or something silly like that and end up taking too much. If the syrup really is easier on people, though, I may consider it after all, as long as I can find out there's no gluten in it.

Gillian

I find it easier because I can do the dosing so much more accurately and in smaller amounts. I don't know if there is any gluten in though - that's something you'd have to check. You could always use a compounding pharmacy as well to make you some w/o gluten - it'd be more expensive that way though. As far as measuring correctly, the syringe that the regular pharmacy gives me is not worth anything. I get these "baby" syringes from a compounding pharmacy that are measured out in tenths of mls so you can be extremely accurate. I also get these tops from them that allow you to get the liquid out easier. Here's a picture of one:
http://shop.tps-online.com/browse.cfm/4,135.html

I also seemed to notice a difference going from the generic pill to the brand name liquid - less side effects for me, but maybe an increase in bowel motility.