Quote:
Originally Posted by Ravenred
Hi everyone! BTW: if no one has told you all - you are a fantastic group of peeps! 
I realize I haven't been on the Mestinon very long (newly dx) / on for 10 days - and when it's working I feel FANTABULOUS (hehe) and can usually do just about anything I want/need to as long as I don't get silly about it (I've officially declared my super-woman cape to be out to the cleaners to my family... 
BUT I can also tell you within 20 minutes of when it is out of my system / wearing off - I "crash" and hard - and the symptoms are actually worse  than when I started the Mestinon - I'm now choking (twice this week and on bread!), drooling (hey I thought I had a few more years before I needed a bib again!), and sometime (evenings more so than day) struggle to take a breath not to mention that a professional couch potato has nothing on me as I can barely move until about 20- 30 minutes after I get the next dose down (which was fun last night as I couldn't get the bottle open and no one was home....
Is this the MG getting worse / progressing and the Mestinon just masking it? Does it get worse this fast????
I started keeping a log and can see a pattern that it (the Mestinon) appears to last about 4.5 hours before I turn into an MG pumpkin.... but the neuro is on Turkey vacation till next week so I'm very leary about bumping it up but this rollercoaster ride is really starting to get to me already....  |
For some people (like me) mestinon is not the drug of choice. There are other meds that can be used. Although, for some reason, very few neurologists will consider them. Also, from my experience, the "energy" you get from any medication (and more so those like mestinon) can be miss-leading, and you can easily push yourself over the edge doing more than you really can, and this is when you crash.
If you take the nice metaphor you used with your grandson, it's like taking mestinon makes you feel that you have a few more cups of water near bye and then you drink real fast, knowing that you can easily get more, but find out that those glasses of water have a hole in their bottom, so not much water left when you pick them up to drink.
There is a possible physiological explanation for why it happens ( in some patients, probably more in MuSk and seronegative), but doesn't really matter.
That is why I try to take longer acting medications which do not have such extremes in their levels. And also recognize very early signs of weakness, so that I stop before I crash. (doesn't always work even now when I am highly "experienced").
But, this has been a very long learning experience. Almost like finding out what tigers like to eat in the hundred acre woods. I too do very well with cough syrup my neurologist prescribed for me!