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....

Glad beyond words that you are keeping a journal!! It will be very helpful both for you over time and for neuro (in synopsis form). First let me preface by saying you should never change meds, dosages, or timing of doses without neuros ok. That said...

It took a long time for me to hit on the right combination of timing and dosage on the Mestinon based on how I was feeling. I now have permission to take my Mestinon 'at will' as long as I don't exceed certain dosages in specific timeframes.

What I do now is take 30 mg (1/2 pill) every 3 hours that I am awake (and none at all during sleep hours). Because I try to be pretty active, I couldn't stand the highs and lows. So a smaller dose overlapped throughout the day helped eliminate this for me. However, I have been told flat out not to try this schedule with 60 mg - - remember too much Mestinon can be as debilitating as not enough. ( I was also told to never exceed 90 mg in a four hour window. Don't know if that's a guideline or a rule set just for me!!)

Hope this idea helps and that your neuro is as 'flexible' as mine!

Hi! You are describing my symptoms exactly. Due to the sudden crashes my nuero put me on timespan mestinon. I take one first thing in the morning and another around 6-8 hrs later. I've heard some don't have a reliable response from it, but it has worked fabulously for me! Also I bought a pill case and prepare all my meds for the next day before I go to bed. I bring the case and the bottle of timespan to bed with me, and my hubby will wake me to help me take it before he leaves. Also if you have stomach problems from it, I eat a couple bites of banana with it. I also take my mestinon 60mg at will, about 1 an hour up to 12 ( at one point I went into a serious flare and was taking a dangerous amount 20! And my nuero almost throttled me. Mestinon overload can cause heart problems) so now I know I can't keep popping them if I'm weak, just means it's a resting day. Also, as your treatment progresses your symptoms should become less severe. I was so weak when diagnosed I was having nasal regurgitation and collapsing... But after about a year of all my meds and ivig the "extra" damage that was done before treatment started to heal. Now I'm "normal" weak lol if it exists. But just know that u know so much more about what ur going thru than ur dr. They try but they can't see thru our eyes so make sure u are very clear about what u are experiencing. Most will say not to change ur dozing or times but I think if u need to move ur pills a little u know ur body. U can even cut them into quarters! At one point at my best... I was taking a quarter of a pill an hour because any more than that was too much at one time. Also the pill case was because I would forget if I had taken my pills at the time I was supposed to... When ur taking pills every 2-4 hrs sometimes I would forget if I just had or if I was thinking of yesterday lol. It's also easier to get to when ur crashing. I hope this helps you! Sorry if I rambled and I'm short. My fingers are struggling so I'm shortening my thoughts. I wouldn't mind texting during the day if you need somebody to talk to Jessica.Allgyer@gmail.com
Jess

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!

Hi Ravenred,
Neuro's usually live by the books, specially with newly dx'ed. And since no 2 MG's are comparable, I found out that for Mestinon, the best reference was myself and I modulate the amount of Mestinon I take according to my activities. The 60 mg intakes are spaced from 2.5 to 5 hours and I take the next one just before I would need it taking into account the 30 minutes required to kick in.
Maurice.

have you tried the slow release Mestinon? I was on 5 pills a day and I could not remember to take them at the proper times. Now I take 2 tabs a day.
Although the SR may not be the best option for everyone, maybe the doctor can help you out with advise.

randy

I am leary of "experimenting" with the dosage as I've read it can cause the same weakness it's suppose to help.... but everytime I 'hit the wall' it's harder and has me contemplating it - just need to get thru a few more days and then I can ask about adjustment / timespan....

I've been wondering if I have been trying to "be normal" when on the Mestinon and that's part of the problem - I really don't know what normal is anymore for me -

Considering all the reading I've been doing - I'd really be interested in what the phsyiological explanation is......

That's definitely something you should take into account... A new normal! My new normal is being able to do the dishes and rest, sweep and rest, ect lol. J used to b like the energizer bunny! It's hard to justify so much sitting around when your used to being on top of things. But it's very very important for your new health...