Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
hated them so stopped. Not worth the grief.
You can break them on the score with no problems.
Here is a link, if it works, to a previous discussion of this issue.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/15877436-those-timespan-mestinon
Have you and the doctor talked about different methods of dealing with the MG, as your doctor should try to make you as comfortable as possible, and clearly this method isn't working for you, so maybe your doctor has a different/better idea of managing the condition.
I was offered either the mestinon or steroids and was put onto Immunoglobulin (not sure if that's the spelling) infusions. I chose the mestinon as I didn't want the side effects that came with the steroids, so there are other options besides the mestinon, but just talk to your doctor and see what other treatments options that are available for you.
I really hope that you sort this out soon, it's an absolute nightmare over medicating and under medicating! I am just thankful that I am currently in remission! I hope that lovely sounding word graces your ears soon!
I wanted to wake up with the mestinon in my body ready to go rather than wake up and take the first pill and wait for 30 minutes to be functional. It did do that, but at the bother of overnight over cramps, twitches and bathroom trips. Waking up at 1 am with a severe agonizing foot, leg or thigh cramp and spending a half hour trying to ease it out, is not my idea of a good night's sleep!
Using a CPAP to help with breathing made it so I didn't need overnight mestinon. I took a regular mestinon pill 1/2 hour before getting out of bed and that got me functional. Eventually with prednisone, I gave mestinon a not-so-fond farewell.
Good Luck
Russ
I do have a routine now! I take a 60mg when I get up, then 3 hours later take a 180mg timespan, then in the evening take half a timespan for sleeping.
I do like the timespan during the day, and did not realize until recently how much better and effective a fresh, dry timespan works vs. the gummy, exposed, moisterized timespan - which is not good at all.
It was found not to be slow release, delivering too large a shot of Mestinon in the early part of the night and insufficient by morning,
I know people here wh just set their alarm for every 4 hours and take 60mg every 4 hours during the night - inconvenient but effective.
I find they help my significantly for getting out of bed. Mind you, I am feeling a lot better these days and its hard to tell whether I am just improved from when I was in crisis or if its the meds. Probably a combination of the two.
I hope you work it out.