Poll

[michiganjan]

Posting a poll, Not sure how to do it. Hope this works.

[Sunfish]

looks like you did just dandy with the poll jan...i've never posted one myself so you're one step ahead of me there

i voted (oooo....first voter....do i get a prize??) that the mestinon helps me but - oddly enough, or perhaps not so odd, it actually helps my GI issues (SUPER slow motility) just as much or as more as my BP/HR issues. hard to tweeze out what does what though with all the meds, combos, etc. but it definitely helps my GI motility. which for some people is a problem to the degree that they have to stop but for me is good.

if you've read past posts re: mestinon and/or my vandy stay you've probably already read my "mestinon history", but i was started on mestinon during med trials at vandy in may. objectively speaking (though realizing that it was only one day and there's obviously no way to control for other variables) the mestinon alone did little to nothing for me. a low dose of beta blocker (inderal) made me pass out. but together we hit the best case scenario....at least for that day. i did have some, though limited, improvement with the BB & mestinon combo, also coupled with midodrine (& DDAVP at night). other things too, but those are the more direct BP/HR related meds in the mix. the biggest change though was that i switched over from months of constant weight loss to gaining back b/c i could actually keep food down. a very good thing.

when i started i was on 30mg TID (every 4.5hrs, same schedule as inderal & midodrine). in october/november we gradually moved up to 60mg TID. honestly no big change there. a bit more sweating (at the parts of me that do sweat...no help where i don't sweat at all) and a bit of improved bladder emptying (but not enough to keep me from having to self-cath so not really helpful) but no change otherwise. perhaps a bit better GI motility too though not as noticable as when i initially started it. but i can eat now more times than not so no problem there. i still didn't have any negative GI effects with it though (cramping, etc.) which is a reason some stop it.

the only real problem i've had with the mestinon is when we tried to switch me to the XR version. "same dose" but in one pill in the AM rather than throughout the day. it did NOT go well and almost put me in the hospital. it had to do with my tummy/intestine's inability to process the XR formulation such that i essentially ended up with an underdose, then an overdose. it was NOT good. i've since found out that others with GI motility &/or absorption issues have had problems as well (not on the forum, but MG patients). my new neuro says he never uses the XR for people with notable GI issues.

and a minor technicality re: getting the mestinon. a good number of pharmacies don't seem to keep it in stock & thus generally have to order it in. usually only takes a day but just a heads up. it was only a challenge for me when i was getting discharged from vanderbilt & they couldn't give me extra to take and i definitely needed it. my poor mother (without a car) had to walk what probably amounted to several miles around nashville hunting it down!

eeks...i've written way more than i intended or than you probably needed/wanted to know. (my fingers are cooperating with my typing for the first time in three days so i'm coming out of withdrawal perhaps?) hope at least something in my ramblings is of some help though.

and know that you & your hubby are continually in my thoughts & prayers.

melissa

Edited December 17, 2005 by Sunfish

[persephone]

I really want to get my hands on this and try it, but it's not even undergone trials in the UK yet

[Eli6596]

Hi

Mestinon helps me a little. It feels like I have less downs before my midodrine doses because of mestinon. Sunfish's input on mestinon and GI isssues is interesting. Sunfish, what were your symptoms during the mestinon overdose? I am curious if they were similar to a myasthenia gravis patient's symptoms when overdosed with mestinon. (You know that mestinon is really just approved for these patients.)

I found that my heartburn/ reflux definitely worsened on mestinon. In myasthenis gravis patients, GI side effects are the most common. I have less GI side effects (stomach pain, nausea) on mestinon timespan (the long acting form) compared to the immediate release. I MIGHT have gotton more wonderful peaks on mestinon immediate release, but I could feel it wearing off between dosages. The timespan is smoother for me.

I can see why timespan might be a problem with GI issues because of absorption issues though.

Karyn

[dizzygirl]

hmmm... I ddint vote b/c I'm not sure whcih to answer....

I have been on both timespan and non timespan..

with the timespan.. I absoluelty could/cannot handle the doseage....or that form of pill.. it caused some nasty unbearable side effects for me...I had alot of severe GI problems on timespan.... and it caused some speech difficulties..for me.. and the dose was just to high.. and was causing overdose (speach difficulties/slurred---couldnt form words....seizure like symptoms...though no seizures..) for me.. i was on 180 timespan twice a day.. and couldnt handle it...

Now I have been on the 60 mgs 3 times a day and the first few days.. were really rough.. but after my body got used to it.. it did help... my mind was clearer and i did have some more nergy...and eventually. my dose went to the time span then back down to the regular..was on 120mg 3 times a day.. and have had to keep knocking it down.. as the dose was too high...)go figure.. at one point could handle 60 mg now i cant!!

so I'm currently taking 30 mg 3 times day..(half of a 60mg pill).. and the side effects from taking 30 mg verse 60 and higher.. is much better for me..still get some GI upset.. but not a severe..... the only down side to 30 mg is it wares off before the next dose is due.. and I really feel it after about 4 hours after taking it.. that its waring off.. so I will now have to monley with the timings again on the mestinon...

for me it has taken allmost a yr to find the right dosage.. but I finaly did. and it does help.. not drastically.. but every little bit helps!!

[goldicedance]

I have been taking Mestinon since October 2004. I tried to work myself up to the once a day dosing but, like Melissa, my body couldn't tolerate it. I stick to the 60 mg 2 or 3 times a day. Some days, when my system is really stressed I add Midodrine. Mestinon has a few things going in its favor--you can lay down without having your bp soar (as is the case with Midodrine) and it really cleans out your gut. As Melissa says, that is positive for some of us--an added benefit.

Mestinon has been on the market for many years, I believe. It is prescribed for Myasthenia Gravis. It can be prescribed for other illnesses at the doctor's discretion. POTS is one of them.

[corina]

Although it doesn't do miracles, it helps me in keeping warm, feeling less dizzy, sleep much better (?????) and maybe some things I've forgottten (well, it doesn't seem to help for my bad memory ). As I had very much trouble tolerating it I'm using a stomach protector med (sorry, don't know if this is correct English) and I built it up to 3 times 120mg a day, by using 10mg tablets so that my body could gently get used to the mestinon. Hope this helps,

Corina

[BuddyLeesWife]

I just asked my husband this morning if he thinks the Mestinon is working and his comment is that he feels good so something must be working and since Mestinon is the latest addition to his meds it must be the Mestinon. I can't argue with the reasoning. He has not had any side-effects other than twitching the first two evenings. He continues to take the 60 mg tablets 2x/day and occasionally adds a third pill if he has to work into the wee hours of the morning. It really seems to help for those late night work situations.

[ariella]

I love mestinon.

It was given to me for muscle weakness, not POTS, but has kept the POTS under better control than the midodrine. I stopped taking midodrine.

However, had a flu shot about 5 weeks ago, and have not been the same since. I haven't found anything online saying that the flu shot may directly knock out mestinon. The flu shot has been known though to sometimes exarcebate myasthenia gravis, which clearly happened in my case. So, if the MG and POTS are somehow interconnected, well, there you have it.

Ariella

oh, wanted to add that I take 60mgx5. I know when it's wearing off because I start to feel POTSy.

Edited December 19, 2005 by ariella

[michiganjan]

bump

[michiganjan]

bump

[dizzygirl]

what does "bump" mean?

[shannon]

I've been on it for over a year, and it has made a huge difference. Although I still have some bad days and some fatigue, my daily life is really pretty normal. Oh, for me, I needed to have mestinon time-release. I tried it just regularly and that did NOT work well at all.

Have a nice day everyone!!