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