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Hi..

i have been on mestinon since January of this year.. and I had a rough time in the beginning taking mestinon.. it caused severe fatigue.. and nausea.. and a few other things I am sure but cant remeber now.. B)

anyways.. may dose was eventually bumped up to 180mg once a day timespan release.. I actually didnt do too badly when i increased to that dose.. then it began to not work as effectively as it had when i first increased the dose.. so It was bumped up again to 180mg. tiwce aday.

well It has been over 2 months since I increased my dose.. and it is amking me feel worse. about 2 hours after taking it.. I get sever abdominal pain, nausea.. diarrhea and vomitting.. and i get very lightheaded feeling like I amm going to pass out.. and my vision gets so messed up I can barley stand it.. this happens nearly everytme that I take it.. more so with my night time dose.. then with my mornig dose..

also my heart and chest feel very funny.."weird" I do not know else to describe it.. my cognitive thinking and ability to retain info has gotten much worse over the past month or so.. more so noticable in the last 2 weeks.. I just cant concentrate, and feel very 'fuzzy minded" which I know can be normal for a potsy person..

I keep taking the mestinon.. in hopes that i will have a half ways decent day.. and that it will help me feel better..

its is crazy you know.. I or we take a medication that makes us (me) feel worse.. in hopes that it will make you feel better..

I know that if anybody understands what I just said.. it will be you fellow potsy people.. LOL

anyways i am wondering if any of you have had this reaction to Mestinon.. either on a higher or lower dose.. are these normal side effects of mestinon?

I was hoping that if I stuck it out longer enough that the side effect of ahigher dose would go away..

I am wondering if the high temperatures and humidity we have been having is playing aprt in my feeling this way.. or if it is the mestinon or a combo of both.. i really dont know..

But I am seriously wanting to talk to my dcotr about going off of mestinon.. i just cant handle the effects of it any more.. most days after I take it i am so bad off that i am useless..

tonight is a good example.. i tried to get a few loads of laundry done.. and had to climb up the stairs,, and my legs felt so weak and fatigued.. my legs started to buckle and i got very dizzy.. i all most fell backwards down the basement steps..it is so scary.. had the railing not have been there i would have..

So i would appreciate and opinion or advice.. I go to the doc. thursday..

the thing is.. even though the mestinon makes me feel so poorly.. it has decreased my number of blackouts and passing out spells..

so I feel like it a double edged sword.. not so great solution either way that I go..

AAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRG!!!!!!!!!!!

a very dizzy dizzygirl... :P

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Dizzy,

I'm not a doctor so everything I say is what I experience and it may be different for others. But I do want to give it a try to help you out!!!

I have the same trouble you're describing with abdominal pain and nausea. What I did was ask my dog for a med AGAINST the pain and nausea. This works for me, as long as I keep eating little things, during the day.

What helped me very much was: spreading the pills over the day. I take 120 mg in the morning (with all my other meds, including something for my stomach), 110 mg around lunch (and a med for my stomach), 60 mg around 3.30pm and the last 60 mg around 6.30 or 7.30pm. I NEVER take pills later because I don't eat after that time so I would have the nausea if I took the mestinon. Also I don't need the mestinon during the night because I am flat on bed! I NEVER increase with a 60mg because my stomach can't take that. I take a 10mg more and see how it works, meaning if that is enough to make me feel better.

I hope this helps you a bit. When I started on the mestinon I felt soooo sick that I called my doc and told him I would stop the meds because I didn't need to feel more sick than I already was. He kept on telling me to hold on and helped me by prescribing different meds against the naseau and pain. And finally it worked. I am glad I held on (not sure if this is correct English???). Still, everytime my body gets used to the meds it stops working so I have to increase. I hate that.

I'm sorry this is sooo long Dizzy but I hope it helps you. Can you talk your problems over with your doc? (meaning: do you think he will understand and help you out???)

Best wishes,

Corina

ohh btw: I can't climb the stairs anymore so I have an elevator. This can be caused by the POTS, (or maybe the heat) instead of being an effect of the mestinon

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Hi corina..

thanks for the tips..

I take my mestinon at 8am and at 8pm. and then i take my BB at 10 am,5:30pm, and10pm.. this is the schedule that the docs worked out.. hoping that if they got the timing of my meds right.. along with the right dosage that I would start feeling better..

I take 180mg, in the am and pm.. and I am thinking that it may be to much medication all at one time.. so I see the doc tomorrow and I am going to talk it over with her..

and yes Corina you english was perfect!!! :)

thanks for you help

Linda

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Hi steph..

yes I just started the new dose..I wasnt told about the splitting the pills up..i will have to look into that..

I am waiting to here back from Dr. Grubbs office to get an appointment to see him. I am praying that it wont be a very long wait to see him..

But I could handle the Mestinon at the 60mg dose 3x's a day.. but not this dose I am at now.. YUCKY!

Hopefully tomorrow I will be able to start getting things straightened out..

thanks!

Linda

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linda -

so sorry that you're having such a rough time with the mestinon. i definitely think you need to talk to your doc b/c - normal or not - you're having too many side effects without seeing benefits. it's one thing to put up with side effects if you know a med is helping in other ways, but if it's not....

i've never been on or tried to be on as high of doses with the mestinon...i only take 30mg 3-4 times/day with no plans in the near future to up it. i was lucky to not have any negative side effects but it definitely affected me GI-wise...it just happens that the increased motility helped me where for many it brings on cramps & discomfort.

i too have seen a lot written about too much or too little mestinon often having similar effects, and do think that your doubling your dose at once may have been too much for your system, even if you needed a higher dose. so perhaps a more gradual change would be better and would allow you to find the right dose. while long-release meds have their benefits they don't allow for as much "playing around" in terms of dosing, time taken, etc. which can be frustrating...

good luck with the doc tomorrow. while your docs have worked out dosing schedules for you, make sure you are a part of the decision-making too b/c you're the one that has to deal with how things make you feel...

hang in there,

:-)melissa

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Melissa..

i spoke with the docs office this morning.. and they called me back.. and lowered my dose to 2 60 mg. tabs 2x's a day in the am and pm.. now I spoke with the nurse about this..(the timing of it) they are not the timespan pills.. so they will most definaltely ware off before I am due for the next dose..

But I sse the doc tomorrow morning.. so I am going to talk to her about this..

I really am wanting to stop the mestinon.. I am just so fed up with feeling so crappy!

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linda -

i hope your appointment goes well. it's great that the office got back with you so quickly re: the dose change but it does seem a bit odd in terms of timing. but of course i'm not the doc. just agreeing with you that it seems there could be down time between the doses. maybe you could ask about taking the same 4 pills spaced out as opposed to at only 2 times? just a thought...i'll be curious to see what your doc says. let us know how things go...

:-)melissa

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dizzy,

Thought I'd chime in just to second what Steph wrote about mestinon and fatigue/weakness. I take mestinon for suspected myasthenia gravis, not for POTS. I have been told that mestinon can first cause muscle weakness in those who take it who don't have myasthenia. Or in those who overdose. Even for myasthenics, correct dosing is often a personal thing with a lot of trial and error, and myasthenics will adjust their dose even daily, based on severity of symptoms.

As far as stomach issues, that's considered standard with nearly anyone on mestinon. I was advised to ALWAYS take with food. Someone suggested Saltines. I had some rice cakes with it this morning. So far so good.

If it's helping your POTS, I would try to have patience and play with dosage. I'm hoping it will do something for my POTS as well, had to be taken off of midodrine because for some reason didn't interact well with the mestinon.

Hope this helps.

Ariella

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Hi steph..

yes I just started the new dose..I wasnt told about the splitting the pills up..i will have to look into that..

I am waiting to here back from Dr. Grubbs office to get an appointment to see him. I am praying that it wont be a very long wait to see him..

But I could handle the Mestinon at the 60mg dose 3x's a day.. but not this dose I am at now.. YUCKY!

Hopefully tomorrow I will be able to start getting things straightened out..

thanks!

Linda

Linda. Don't split the pills with a pill cutter if you take time releasecapsules. Somehow it just will just increase the dose of the medication. I learned this the hard way. An overdose can be quite horrible. Actually you may be experiencing a slight overdose now. The symptoms that you describe are similar to the way I felt when I was splitting my pills and getting too much.

If you feel sick because of this dose you don't have to drop it all together,Maybe it was just too much at once.

You might want to try taking the 180 timespan and then a 60, later on and see how that goes. Then you can go up 60 at a time.

I had to get off of the time release because of digestion problems, so now I take 60 three times a day. You can also get liquid if you prefer. Now I'm thinking of bumping it up 60 more. After that overdose I want to move slow.:)

My doctor had told me that some people are very sensitive with this med, so it's best to build up slowly.By the way. If by any chance you do feel horribly sick and you think it's an overdose,( look up side effects on the net, and it'll tell you) The medicine will be out of your system in 12 hours, so dont get worried.

Sue

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