I take my morning mestinon after I eat, unless I am going to sleep in(@6:30A always). I take 1-2 timespan in the morning(depending on my day ahead, more often I take two), about 3 hours after I have my mestinon.(@9:00-9:30), The company says do not take again for at least six hours, so my next timespan, will usually be @3:30 or so, if I take one in the afternoon. Then my last one will be when I go to sleep, usually between 10-12PM. I find it is not really necessary to take the regular mestinon sometimes, and I get a little tardy, but normally I will take my mestinon every 5-6 hours, and I take either 60 or 90MG.

Hope that helps. Feel free to send me a private message on it also. The timespan has been awesome for me.

I take my timespan at night, either at 6pm (if I'm having a good day) or at 10pm if it's been a bad day symptom-wise. I take 90mg pyridostigmine at 6am, 10am, 2pm and then again at 6pm if it's a bad day. I know what you mean about feeling out of control. I hate changing my dosages, I like predictability. Go figure, I like predictability and I end up with MG. God does have a sense of humor.

I'm so glad you woke up feeling better than you have in years! It's a funny thing to realize what it is to feel good, isn't it? I had an excellent response to ivig last February and experienced joy for the first time in months. I am hoping for many future days when you and I and all of us here feel good and joyful!
Cathi

Hi Beth, i was on timespan and mestinon for only six weeks but my neuro had me take mestinon every 4 hours, first those as soon as i got up, I was told, timespan is pretty much out of the system by A.M..

Take care,
Maria

Thanks TJ and Cathi

I was just learning what to expect and this hit me like a blast out of the blue. You know, I could get used to feeling like myself--now if I can just get the neurologists on board! It is so frustrating that they hold your deliverance in their hands and you can't get to it. I just looked at the paper I got from the local neurologists and the place for diagnosis says lethargy, malaise, and fatigue. Where they get that I have no idea. I am so lethargic that I care for public gardens in addition to my own, do Tai Chi, and am stronger than they are. All I'm complaining of is sudden unexpected weakness that is relieved by rest and now pyridostigmine. Thanks for the input and a chance to rant

hi Maria,

Whatbtime did you takebit in the evening?
b.

Just change those b's to spaces. I have to get used to virtual keyboards and proof a bit better.

Hi Beth, I took it right before i went to sleep, back then I was crashing between 8:30 and 9:00 P.M., I only took it at night, during the day I took mestinon. The timespan was 120mg and i started with mestinon 15mg, every 4 hour and worked my way up 60mg every 3 hours.
I never had a set time of taking it due to me, going to sleep and waking up at different times.
I kept a journal daily of how i slept and also how i was feeling during the day with the increases but especially with the time schedule, it was hard trying to remember what time my next dose was to be. I also set alarms on my phone to remind me.
Hoping you will find what works for you.


Feel well, Beth
Love, Maria

Hi Beth -

Sorry you're having such a tough time keeping your symptoms under control. I always took Timespan at night, just before sleeping. It saved me from needing to get up at 2 and 5 to take regular pyridostigmine. I'm not sure why it's release is so erratic and unpredictable for you. As I remember, it is nothing more than 180mg of regular Mestinon mixed with parrafin. Shouldn't normal stomach acids release the Mestinon at a predictable rate? I never had any problems with it and I would awaken much stronger than if I hadn't taken it.

TJ -

In my life, I've never heard of anyone needing to take so much Mestinon. As I do the math, you have indicated that, at times, you are taking as much as 210mg dose equivalents (at 9am, with the Timespan from 6am still in your system). If your symptoms are so severe, something sounds wrong. At my worst, I've never taken more than 90mg every four hours. I also found Timespan not to be very useful during the day.

Curt

B -

Like most of the others, I take the Timespan to get me through the night, too, so I don't wake up weak. I usually take it whenever I go to sleep (usually around 11pm), unless I'm out really late (anything after 2am). That gets me through to my first regular Mestinon dose of 120mg around 8 am, and I usually go between 4 - 5 hours between regular doses during the day. If I forget to take the Timespan, I need the Mestinon earlier in the morning, usually on waking, instead of after I've gotten ready for work. I've never noticed problems with the erratic release of the TImespan, but them I'm also quite asleep while on it. :)

As for feeling out of control, I look at it as being more in control to take the Mestinon as needed. As my neurologist has always said, it's like taking Tylenol for a headache. When you need it, take it.

Hope that helps!
Jen

The diagnosis section of your paperwork would have sent me spiraling to the point where they would have had to add a few more negative words to that section! ;)
I know you are going to get the answers you seek!
I don't have any answers for you on the timespan... but I love the advice you have received from everyone else! I have heard it takes a good year or so sometimes to figure out the meds... but it seems even more challenging when the MG changes daily too! You will get it figured out! Be patient and kind to yourself.... and TOTALLY find a new Neuro!!!

Thanks all--last night the timespan behaved more as expected, woke up feeling better than before I started it, was awakened by it kicking in around 4, but not so dramatic. My doc had warned me it was erratic, so maybe it was just living up to it's billing or maybe the timespan out East misbehaves :-)

Anyway I think I am doing better without the nighttime letdown, erratic or not. It is nice not to have to awaken during the night. b

Ps, becca If I can get care somewhere else I will never darken that door again. Sadly a classmate started that group. He is retired and I am not sure where he is.

I stopped taking my timespans after about 3 years - they started making me sick (even with zantac) since im a light sleeper and wake up pracactically every hr - i would just take 3 (60mg) pyrids at seperate intervals during the course of the night while i slept. the trick was too have 1 in me right before i awoke -as opposed to taking my last 60 five hrs before i got up. some others i know just take time spans all day (so as not to be popping a 60 all day long they usually do 1 every 6 hrs or so. i used to do them that way too. now i only take a 60 a few times a week