[wondergirl]

Has anyone had some success with Mestinon and then tried other meds/supplements AND found something that works the same or better?

I was hoping to find something that works the same or better for me... but maybe has less side effects or longer action. Or any other benefit. Not necessarily to replace the Mestinon either but something I could use part of the time. Kind of worried using it too much.

Mestinon does work fairly well for me and I'm seeking advice from people who think it's helpful.

Thanks.

[suev]

Hello and Welcome!

You sound exactly like me! I needed Mestinon - but didn't want to medicate or become dependent (or maybe just didn't want to admit how much I needed it...I don't know!)

Anyway, I am quite functional for someone with MG - even without the Mestinon. But after a year and some of denial - - I have finally given in to the fact that I can do whatever I do better (and with less 'willing myself to get it done') with the Mestinon than without. I have now increased to 120 mg on quiet days and 180+ on physically active days.

Unfortunately, if I string too many physically active days together, I really need to up the Mestinon - - until by the 3rd or 4th day - I just have to give in and have an inactive day (which I hate!)

Even with the Mestinon increase I have had some deterioration - my eyes and swallowing are not as good (but not bad yet either). So I'm hoping that taking the Mestinon will allow my muscles to last longer (but I have no way of knowing that this is even factually true!)

There are certain foods and beverages that help or hurt MG - but the 'helpers' are not as effective as Mestinon. (Like caffine helps - alcohol hurts). Sleep (as in really restful REM sleep) is imperative. Not getting overheated (whether physical temprature or exercise/exertion) also very important.

Hope this helps - I applaud your wanting to investigate options. One thing my neuro recommended was daily sublingual B12 (for nerve health). That seems to be fairly consistent with everyone one here.

Sue

[wondergirl]

Hi all and thanks Sue for the welcome and informative reply.

I'm so much better with Mestinon, but one part of my doubt is because I'm not actually diagnosed with MG.

However, one expert's article said that (because other diagnostic methods can miss some people with MG) docs should try you on Mestinon and if it really improves your muscle strength, then he says you have MG.

Because yeah, some of us can have a milder form or otherwise different (I think it's possible to have no facial symptoms at all, or none noticeable).

What you said about "willing myself to get it done" makes complete sense to me. Without Mestinon I generally have to push and make myself get into an extra stressed feeling in order to feel like I can get something done. I don't think that's healthy to have to do it for most things I want to accomplish, even simple things.

I am sensitive to medications and other things, and take only little doses of Mestinon... since I take less, it wears off fast. But if I raise the dose, I get more pronounced side effects and I prefer to keep those down.

I'm the same regarding once I tired myself out to a certain degree, then the Mestinon won't work / work anymore. Tiring myself out can be from activity while on Mestinon or it can be from activity while I wasn't on it.

I have trouble getting good sleep. Overheated... may not be as much of a factor for me, I'm not sure. Caffeine & alcohol... yes definitely. B12... I will keep that in mind.

Any other advice is welcomed

[teresakoch]

You might want to talk to your doctor about changing the "timing" of your dosages. My understanding is that most people with MG can tolerate a certain dosage level of Mestinon, but it can wear off more quickly with different people (same thing goes for days when you do more activity).

If I'm not mistaken, your body won't let you take "too much" Mestinon - as you've noticed, when you do, you start to feel bad. However, there can definitely be the opposite - you can take "too little", and that can end up making things worse.

Think of it kind of like insulin for a diabetic - they are constantly having to monitor their blood sugar, and whenever their numbers get bad, they have to give themselves an injection - it doesn't really matter when the last one was, their body chemistry is off, and they need to get everything back to normal.

The same thing applies to people with MG - if we don't have enough "juice", we have to boost our system. If we don't, our bodies will become even more tired, which will require more of our precious energy. It then becomes a vicious cycle. It is so much better for our bodies to maintain a relatively level amount of acetylcholine so that our muscles can operate at peak efficiency.

I know that some people don't want to take any more medicine than is absolutely necessary, but in the case of MG, it is absolutely vital that we constantly replenish our body's ability to process acetylcholine, and at the present time the only way to do that is to take medication.

I'm one of those "Mestinon trial = MG diagnosis" folks. I know that if I don't take my meds on time, I pay for it later. As I said, talk to your doctor and see what he/she says about the possibility of taking a small dose more often - you'll probably find a dosage and a schedule that works for you!

[wondergirl]

My Drs don't believe I have MG, but I believe they are taught you have to have a lot more obvious symptoms if you have MG. My bloodwork didn't show that AchR antibody stuff like most MG people have. But luckily I still am prescribed Mestinon anyway.

I only take 12-30mg at a time. With 30mg that seems to be my max dose so that side effects are not too bad. They're still a pain because they last about 20-30 minutes and the good effects of Mestinon only last about 120 minutes, since it's such a small dose. When I take only around 15mg then side effects are low and I still get good effects. Less and shorter I guess.

That might be nice if I could take one pill and have it release slowly during the day. It's usually easy enough for me to just take an additional pill in 2-2.5 hours.

I rarely take more than 3 doses in a day though, on average it's more like 2... I really should take it more because without I get almost nothing accomplished. It just feels like I would crash/rebound more if I take too much. Maybe it would be okay to take 4-6 doses and get more done and still have 10+ hours a day off Mestinon.

[DesertFlower]

I take Mestinon and it works amazingly well to keep the worst of my MG symptoms at a minimum. I am currently taking 15 mg three times per day. I have taken more in the past, up to 120 mg per day, but luckily for me my MG has improved slightly in recent times.

If I take more Mestinon than what I need, I get worse symptoms that if I don't take enough. Too much Mestinon gives me muscles twitches, muscle cramps sometimes muscles so tight and painful they won't function, and worst of all the Mestinon makes my heart pound fast and hard which is very scary(this seems to be a rare side effect)...so I try to take the smallest dose that helps.

I have always been sensitive to medicine, so that is probably a factor in me needing such a small dose of Mestinon.

I only take Mestinon for my MG.

I have found that diet changes and vitamins help, too, but nothing makes the MG symptoms go away completely.

Taking Mestinon with a meal and drinking plenty of water seem to help the other side effects from mestinon, especially the diarrhea and mouth watering.

If I do too much physical or emotional activity, then I get tired and the Mestinon won't help...rest is the only thing that helps when I overdo it.

Mestinon has been a lifesaver for me.

[wondergirl]

I never noticed mouth watering at all, but I guess I have dry mouth normally.

Interesting, I think most who use Mestinon have similar results overall.

Does it help with your "motivation"? For example I feel "too lazy" to go take the Mestinon. It's like I know it will help, but for some reason I don't feel like doing it. if I had the Mestinon in my system, then going downstairs and taking it would be easy, but when I don't have it in my system I am usually indecisive. I think it's because my muscles feel weak so my brain is trying to tell me to just sit around and not actually move. But it's annoying how it's hard to take the pill that would help me.

The side effect that I hate is not really physical, it's mental... does this happen to anyone? When it's kicking in, my brain gets "fuzzy" in a certain way. Especially right when the drug is peaking, then I feel the side effect diminish. I guess I am prone to the fuzzy brain thing, I get it sometimes even without Mestinon, to different degrees. It's bad because if I were working a job, I would need Mestinon but then every 2-3 hours I would have the half hour of fuzziness, and I'm worried I would not be thinking straight. This side effect is the one that causes me to take less at each dose, but I think 15mg may be too little (not as helpful as 25-30mg).

[DesertFlower]

I get mental effects from the MG and the Mestinon, too.

When I get tired and weak from MG, my mind is a little slow, mostly the speaking part. I feel fine mentally until I try talking to someone. It is hard to explain...I have trouble finding all the words that I want to say, but this only happens when my MG is bad. I also have a hard time making decisions when my MG gets bad, even simple decisions.

About 20 minutes after I take Mestinon, I get a nervous feeling and avoid having conversations because I can't speak clearly, skip words and talk too fast...kind of like I drank way too much coffee. This isn't very noticable with the 15 mg dose, but when I was taking more I avoided people and would not answer the phone during this time. I felt like I was having some kind of panic attack, with a rapid heartbeat...this is why I dropped my dose to 15 mg...I started to feel nervous about taking Mestinon at this higher dosage and skipped doses sometimes and instead went to bed.

I have found that the Mestinon works best for me mentally if I relax for 30 to 1 hr after taking it, and have quiet time to myself.

Something else that seems to help...seems sort of silly, but I will type it anyway just in case it helps someone else...after taking the Mestinon I imagine how the Mestinon is helping me, and sometime even close my eyes and visualize myself having more energy and having stronger muscles, and this really seems to help. I don't want to imply that MG is all in my head (or anyone's), because obviously it isn't, but that our minds can help in the healing process somehow.

Vitamin B-12 helps with the mental tiredness for me.

I hope some of this is helpful.

[suev]

Wonder - - you and I are incredibly similar!!

I'm seroneg and barely 'passed' sfemg. Neuro almost didn't put me on Mestinon because the initial 'trial dose' (30 mg) test in their office had me commenting (after 20 minutes or so) that I felt like I had just drunk too much wine! A bizarre 'brain buzz' swept over me!! But then they retested my muscle strength - - and I was like the Incredible Hulk compared to without the Mestinon!!

So they said MG for sure and gave me script for 30mg 3x daily. I cut that in half to lessen the brain buzz and took it 5x daily. After many months, I started 30mg and the brain buzz was much less and the benefits much better. (Now I can take 60mg in one dose - but usually only do that when I'm going to play golf in the heat!)

I have never had any other side effects and the brain buzz incidents are nowhere near as dramatic as in the beginning (perhaps because they don't frighten me anymore). It's just weird that I can actually feel the drug 'kick in' every time I take it. My hubby calls it my fix!!

Hope this helps you in some way. I'm actually happy to have a short 'brain buzz' over the other nasty side effects I've heard some here reference!!

Sue

[wondergirl]

Yes, exactly! The speaking issue is a really big one for me (without Mestinon or when I am too drained for Mestinon to work). Wow, someone who knows what it's like. Though I am sad you (and others) have these issues...

Yes, around 10-30 minutes after I take it, I can't speak right, and I have a lot of trouble reading (visual focusing) and other focusing or deciding (logical thoughts don't "work" right somehow)...

(Mini rant... these doctors are crazy if they think I don't have MG, with all the symptoms I have and the way the Mestinon affects me well. And I suspect my mom has MG too though I read something that sounded like a diagnosed person mostly will NOT have a relative with it?)

Well... then again they are finding Mestinon helps for fibromyalgia apparently. But I feel my fibro only happened due to falling and I feel like it was more likely to happen because of MG. Oh, and I'm wondering if joint hypermobility has any relationship to MG...?

Hmm yeah sound like the higher dose was too much for you, I think I get those extra intense social/mental side effects if I take 45 mg and up. And definitely more of it at 30mg then 15mg.

That's probably another reason why i always have this hesitation to take a dose. Because I know my thinking will get all weird. It's brief so I should do it, and like you said, just rest during those times, but... sometimes it's not possible to plan ahead so much.

Oh, that's a great visualization suggestion.

Something weird (and mostly positive) that happens with me too is... I'll start feeling some benefit from the Mestinon super fast. I'm just that way with drugs, and esp if I let some of it get under my tongue... that's a much faster way to absorb a drug.