green Posted December 4, 2018 Report Share Posted December 4, 2018 Hello All, My doctor is trialing me on time-release mestinon. I've taken mestinon before, but as a sustained-release, and at a low dosage. It has been awhile and I've gotten more sensitive to medications in the past few years. In general, I've kind of gone downhill overall - I'm also out-of-shape physically. Sometimes people have really bad experiences with mestinon. Did anyone break the time-release pill up and try a small dose at first? I'm hoping that mestinon will help me exercise without being so fatigued that I'm useless, so that I can get back in shape. And I hope that my having gone down-hill is mostly due to being out-of-shape. But we will see. Thanks in advance, Green Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 4, 2018 Report Share Posted December 4, 2018 I don't think you can crush, chew, or break any extended release medicine. It would probably just make the medicine hit you instantly. I'm taking 30MG 3x a day. I'm about to start 60MG 3x a day. It'll only be my second week. This is not the extended release version. It does slow my heart rate down but I might be getting increased symptoms from it. Like feeling nasuauted has increased and also I'm getting hot flashes where my forehead starts to sweat a bit. But everyone is different. All I can say is just give it a shot. What are you officially diagnosed with? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted December 4, 2018 Report Share Posted December 4, 2018 Timed release pills are not designed to be broken up and must be swallowed whole. Get the smallest dose you can, or try back on a standard release form which can be divided safely, until you know how it is going to affect you. I personally did not find mestinon effective at all other than as a laxative. On the plus side there were no negative effects either, and it can be stopped straight away rather than weaning down. B x Quote Link to comment Share on other sites More sharing options...
statesof Posted December 5, 2018 Report Share Posted December 5, 2018 Hi @green I'm on 15mg of the regular mestinon and sometimes I got up to 30mg if I will have to do walking or a lot of ups and downs during a given day. For me personally, mestinon didn't give me any negative symptoms. The first few weeks it made me feel like I was on amphetamines or something; had this 'on drugs' type feeling to it, but then that went away. Also, I've been on it for a couple of years now, I do notice that if I move up to 30mg for a number of days in a row the effectiveness of it goes away pretty quickly (for me I noticed it already becoming less effective on day 5). I do think that it helps my POTS symptoms a bit, but overall is not a cure or anything like that. It has been a 5-10% help in my case. Quote Link to comment Share on other sites More sharing options...
green Posted December 5, 2018 Author Report Share Posted December 5, 2018 Thank you everyone. No one knows what is wrong with me, but the only diagnosis is POTS. I have sensitivity to orthostatic challenges (heat, dehydrating, elevators, standing still, make me tired and drained) and PEM (post-exertional malaise). I also have difficulty getting moving - physically and mentally - in the mornings, brain fog, and I fatigue easily doing office work. Dr. Stewart in NY said that I have POTS w/ blood pooling in my legs. and evidence of peripheral autonomic neuropathy. My BP is always low normal and my HR elevation on standing is only borderline unusual. We don't know what kind of POTS it is, but I am pretty sure I do not have the hyper adrenergic subtype. I could have something like Mythenis Gravis, or a mild version at least, going on. Especially when things are at their worst, I become extremely fatigued from repetitive motor tasks. An example is: scrubbing dishes, my arm just quits. Or moving my eyes back-and-forth quickly - my eye motions become eratic, and I have to rest. But, this comes and goes. Green Quote Link to comment Share on other sites More sharing options...
green Posted December 10, 2018 Author Report Share Posted December 10, 2018 I took the mestinon for the first time today. The doctor said he was prescribing the lowest dose, but clearly he got it wrong because they filled a script for 180 mg. It was scored, so I broke it in half and just took 90 mg. I didn't notice much, maybe I was better today, but it was hard to say. I am mostly excited about the possibility that it could help me exercise more intensely and with greater regularity, but I didn't feel up to exercising today either. I am planning on going for a run tomorrow. I am still very much in a funk. I have no motivation. It's concerning - I used to have a lot of drive. What is my problem? I am thinking about mixing the mestinon with rhodiola rosea, but concerned about interactions. Best, Green Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted December 10, 2018 Report Share Posted December 10, 2018 My tablets are 60mg and scored both ways, so I started with 15mg. I'm glad you didn't have issues starting with 90mg! I have better exercise tolerance and temperature regulation on it, but it's not dramatic. definitely ask your pharmacist about the interaction. I tried a supplement that had rhodiola and didn't have much effect, but maybe you will. Quote Link to comment Share on other sites More sharing options...
green Posted December 10, 2018 Author Report Share Posted December 10, 2018 Well, today I took the mestinon and went on a 30 minute run and now 3 hours later I am at work, but nauseated and anxious. But, I also took some provigil, so that's probably why I am so anxious. Not having a good time. No idea why it would have been smooth sailing yesterday, but today it would be nauseating. Maybe the nausea is just a byproduct of the anxiety. Best, Green Quote Link to comment Share on other sites More sharing options...
Potsie1990 Posted December 11, 2018 Report Share Posted December 11, 2018 I was left with severe muscle weakness at its peak and almost suffered a stroke later that night while in the hospital. I had temporary paralysis for over an hour as well. I tried 10mg. I’d be cautious. I heard it helps some people but left me worse. It took me 3 weeks to recover from the meds and gave me even worse chest pains and spasms. My neurologist and cardiologist took me off immediately after 1 dose Quote Link to comment Share on other sites More sharing options...
CuriousThinker Posted January 22, 2019 Report Share Posted January 22, 2019 @Potsie1990Wait, what? I'm prescribed 240mg mestinon daily. Taken as 60mg four times. I just took my first dose about 3 hours ago. I was worried about taking these medications because of the side effects, but finally decided to give it a try. My other one is florinef. At the moment I feel like I can't eat anything and my stomach is all full and also I'm having weird symptoms with my eyes and muscles being all jumpy. Quote Link to comment Share on other sites More sharing options...
Potsie1990 Posted January 28, 2019 Report Share Posted January 28, 2019 On 1/22/2019 at 11:25 AM, CuriousThinker said: @Potsie1990Wait, what? I'm prescribed 240mg mestinon daily. Taken as 60mg four times. I just took my first dose about 3 hours ago. I was worried about taking these medications because of the side effects, but finally decided to give it a try. My other one is florinef. At the moment I feel like I can't eat anything and my stomach is all full and also I'm having weird symptoms with my eyes and muscles being all jumpy. Yes, I had a really bad experience. Just monitor yourself and hopefully everything will be fine for you! If at any point you feel off, start documenting your vitals. Quote Link to comment Share on other sites More sharing options...
CuriousThinker Posted February 9, 2019 Report Share Posted February 9, 2019 @potsie1990 I tried the mestinon and it didn't seem to help. I did notice side effects though like mouth watering, lack of appetite and stomach feeling really full, indigestion, slurred speach etc. The other prescription I have is florinef. I may eventually get a prescription midodrine or something like that. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.