How quickly did negative side effects happen for some of you when you first started to take Mestinon?

I started taking 30mg 4x daily a little over two weeks ago. I didn't really experience any problems at all. Felt pretty good overall. Could feel a significant difference in my arms, only some minor improvement in by back and legs!!

On Saturday I awoke with an awful migraine like headache, this is not unusual. I went out for my morning walk, felt my usual fatigue upon my return. Put my legs up to rest... I ended up with such nausea and diarrhea by the end of the day and throughout the night. I felt a little better yesterday, but not quite my "new" Mestinon self. Still felt a bit under the weather today, went to a warehouse store with my sister this morning, by the time we were done I was lucky I could lift my legs to get into the van without help. Lifting my legs to get into cars or upstairs is one of my biggest problems!

Not sure if a should chalk this up to some stupid stomach bug, or if it might be a meication issue.

Thanks for your input,
Rachel

Rachel,

I'm going through the same thing with Mestinon (sort of). I started on it a few weeks ago. I haven't really had any GI problems except a bit of an upset stomach. But, I did have a weird headache, panicky feeling a few times after taking it. It almost scared me into not taking it anymore. I think my body is getting used to it now though and that side effect hasn't happened since.

It is hard to tell if some of these side effects are actually from the meds or something not related. If the side effects aren't severe I usually just keep taking it until they pass.

If you don't mind me asking, did the doctor start you on that dose, or are you just ramping up? I'm suppose to be taking 60mg three times a day, but I started with 15 mg and am now up to 30 mg 3 times a day.

Like you, I do think it is helping me. But, I've noticed that while I am able to do more, that doesn't mean that I should. I usually pay for it later. I am trying to find a balance.

Good luck!

Whenever your body experiences stress (emotional or physical), it can make your MG worse. And even though you are taking your regular dose of Mestinon, it just doesn't work as well. Maybe try to figure out if headache and / or nausea is better or not relative to when you are taking the Mestinon.

I'm guessing you have a 'bug' and hope you get to feeling better soon.

i am still new to this experience and trying to figure this out as well, however a lot of my research and experience is showing that lots of things can impact not just the disease, but also how your body handles the meds. There have been some older threads of people talking about delayed side effects, so that could be the case. Meds can also be impacted very much by caffeine ( like taking more meds), eating foods in the nightshade family ( potatoes, tomatoes, etc..) and by normal hormonal cycles.

Were there any other changes that went along with the different reaction?

hope the side effects have subsided

Shalynn- my neuro started me on 30mg 4x daily, he wants to up the dose slowly, we are going to discuss uping the meds as needed during my visit next week.

suev-I think it must have been a stomach thing, not a side effect from the Mestinon. I've continue with my prescribed dose and have had no other problems. I'm taking it about 5hrs apart, it only seems to last about 3.5 to 4 hrs. Going to take it every 4 hrs. and see if that helps. I also tend to overdo when I have the extra stamina, I know better but some days I just want to make up for what I didn't get to do the day before.

rouguepuppet- great name!! I couldn't agree more, like with any other medical problem, what we eat, hormones and caffiene can all play nasty tricks on our bodies. I also have type 2 diabetes and have lost about 60lbs over the last year and a half, and working hard to keep losing. I want to get down to an even healthier weight in case steroids are needed in the future. I guess between diet, excercise, stress and everything else my system is just a bit out of whack.

Thanks again for all the advice and input,
Rachel

Rach, this soound like what I get from time to time from the mestinon. I have to be cautious of somethings to avoid this tho sometimes I dont think there is anything to be done. I found that when I first getting used the drug tho I was stronger in the morning if I tried to take my meds after eating and try to 'hurry' to my daughters or a medical appointment I could get really yucky. I learned it was better to pace my mornings in respect to letting my body wake up, eat and take my medicine in a gentle way.

Stomach upset from something else can make the stomach upset part of the mestinon reaction come on easier for me. I would rather throw out some food or a bottle of water if I am not sure it is ok than to pay for it by messing with my mestinon.

Hope you are doing better.

Annie59

I wanted to add here that Mestinon gives me headaches if I don't drink enough water. If this happens again, try drinking more water. I have found that additional water helps minimize my side effects from Mestinon.

Annie59, Thank you for taking the time to reply, I know you have been having a very difficult time as of late. You're right about pacing yourself. I'm still trying to adjust my day so I don't poop out by mid-afternoon.

DesertFlower, I'm still not sure the headache was from the Mestinon. I've been a headache sufferer my whole life. Stress, menses, even changes in the weather trigger them. I totally agree about the importance of plenty of water. It's always been my "drink" of choice. There is always a big glass at my side ready to be enjoyed! I usually drink about 1-2 cups of coffee daily, also drink Celestial Seasons herbal tea. Never soda, very rarely alcohol (none at all since starting Mestinon).

I'm trying to pay close attention to anything that may or not be a potential problem. All has been ok as far as headache, nausea, and diarrhea since the other day. I'll be sure to bring all of this up when I see my neuro again Tuesday.

Thanks again for everyone's input and helpful suggestion's!
Rachel