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Another Question about Mestinon:


lalalisa
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Hello again! :)

I've been on Mestinon now for 12 days. So far I haven't noticed any positive effects but I'm giving it at least 3 weeks - so we'll see.

I do have a few questions about the side effects....

Since I've started the med i've been experiencing really intense dreams -- some are nightmares and some aren't but they are all very intense. My husband says I've been talking a lot in my sleep and asking him questions. Have any of you also experienced this?

My other question is about the dosage. I'm on 30 mg 3 times daily. Whenever I go up to 60 mg my GI tract acts funny. Have any of you found that Controlled Release formulation is easier on your stomach? I'm thinking of trying this.

My final question is about headaches. Over the past couple of days I've experienced a dull aching headache. Is this a side effect any of you experienced with mestinon?

Thanks so much for any input. I appreciate you all so much!

Lisa

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Yes to the headache. I couldn't stand feeling that bad so I quit, though I may be forced to try it again.

BTW, the neurologist who prescribed it couldn't believe I got a headache. He said he never heard of that so I'm glad you mentioned it. It makes me feel validated.

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I've been on Mestinon since last October. I take 60 mg twice a day - am and afternoon. I notided a positive effect immediately. I have not had headaches with Mestinon - a + since I suffer from migraines (before Mestinon). The nasty side effect seems to be GI-related if you can get my drift without me being too scientific. I tried the slow release version but I stopped--I can't remember the reason...Chemo Fog!!!

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I just stopped my second trial of Mestinon as it was not making a significant difference but yes I had very vivid dreams...I dismissed it as being my imagination so it`s interesting to read your post! I also had a very gassy GI tract on it although found it helped to take it right after eating. Hope it helps you ..I was very disappointed!

Margaret

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I also tried it for several weeks, and have tried it off and on since, but I get the GI tract problems - that are just too severe for me.

I also suffer from headaches - pretty much all day everyday, so doubt I would have noticed if it was causing them.

I also have very vivid and bizarre dreams, so again, couldn't comment.

But definately the GI tract problems...

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I have just started trying mestinon. I am taking 1/4 of a pill once a day. So not much chance that it is really affecting me yet. I am just trying to get my body used to it.

However, what are the GI issues. I thought they were GI upset and loose bowels or diareha. For me, I have experienced some GI distress and increased constipation in the past week since starting this low, low dose.

Surely it doesn't cause constipation?

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Thanks for your replies.

The "GI issues" include increased gas, mild cramping, and it definitely speeds up my intestinal tract. (The quicker tract is actually a good thing for me -- I haven't had to eat lots of fiber this week as the Mestinon takes care of this)

When I do increase to the full 60 mg dosage the quick GI tract turns into diarrhea and more cramping. I have heard that these symptoms can go away.

As far as it causing constipation - it doesn't seem like it should. Hmmm.

The medicine trial continues.... :)

Lisa

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Hello to Lisa,

I am still on Mestinon. Taking 1/4 pill twice a day now, up from 1/4 pill once a day.

I know this low dose probably isn't enough to help with the POTS, but I am having very vivid dreams. That is a change for me.

Also, still constipated. I am planning on increasing to 1/2 pill in the morning and staying at 1/4 at dinner time tomorrow. I am going so slowly, but will am tolerating it so far, so going slow has been useful.

How are you doing with your trial. Keep me posted. I will report back when I get this next increase underway.

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Thanks for the update on how youre doing, I appreciate it!

I worked up to 1/2 pill (30 mg) 3 times daily and was doing ok. The dreams are still there and mild headaches. I am beginning to wonder if I'm feeling I bit more mental clarity -- but I'm not quite sure yet. (it's kind of hard to tell)

I decided to give the 180 mg Timespan a try today as I've been on regular mestinon now for 3 weeks. So far today I'm feeling pretty dizzy and my eyes are twitching (weird, eh?) I probably won't take the timespan formula again tomorrow if this continues.

Thanks for keeping me posted,

Lisa

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I havent started the mestinon yet b/c I have been dealing with a stomache bug for the last week or so...

I am really having second thoughts about it... It just seems everyone is having weakness, twitching, vivid dreams, headaches etc....

I'm just not sure what to do......

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To Emily,

Dr. Grubb prescribed 60 mg tablets and told me to take 1/2 tablet twice a day to start. In the letter he sent to my doctor, it says the dose may be titrated up to 180 mg per day (3 whole pills). He did not say I had to get to 180, rather that I could go that high.

1/2 tab = 30 mg. so his recommended starting dossage is 60 mg per day, broken into 2 30 mg doses.

I, however, chose to start with 1/4 pill (15 mg) in the a.m. for a week, then I went to 1/4 twice a day for a week.

Tomorrow I will start taking 1/2 tab in the a.m. and 1/4 in afternoon. I that works, I will bump the 1/4 in the afternoon to 1/2 and I will achieve Dr. Grubb's starting dose.

I know my own body and even though Dr. Grubb's instructions already factor in starting low and slow, I am taking it even lower and slower. Experience has taught me that my body is more apt to adjust to a new drug and I will experience less side effects if I do it my own very very very slow way.

To Lisa,

I have read that some who do well on the regular Mestinon do not always do well on the timespan, and others like the timespan. I think you have to experiment, just as you are doing, to see what works best for you. If the timespan is an entire day's dose in one time-release pill, and if your metabolism somehow manages to use up most of the pill right away, then you would have too much and get side effects and maybe not enough drug later.

Jenn,

I do not like to try new meds, either. So far the only thing I have experienced that I might ascribe to the mestinon is vivid dreams. They are not nightmares--some are quite silly. They don't bother me.

Funny thing is that I have an occasional eye twitch just above my left eye. It has been there off and on for a few weeks now. HOWEVER it started about a week before I started the Mestinon, so it is NOT a reaction to the drug.

That occasional twitch is still there. I am so glad I did not start the mestinon a week earlier because then the eye twitch would have started and I know I would have assigned it to the mestinon, and I would have been wrong. I think you are wise to wait until you are over the stomach bug.

Whether or not you want to try the mestinon should depend on whether or not you need help with your POTS symptoms. If you really need them to be better, then you won't get there unless you try meds. According to Dr. Grubb mestinon has been like a miracle to some POTS patients. You may have to try several different meds to see what helps you.

My ridiculously low and slow program is how I cope with the drug trials. I have managed to try lexapro, clonadine, wellbutrin, and others, and get up all the way up to a therapeudic dose and stay on it long enough to make a good assessment of several drugs. I am happy that I went through the process for each drug, because I now know a whole lot of things that don't work. I also know that a beta blocker is very helpful. Since my POTS requires more help than just the beta blocker, I continue in my quest to be as high-functioning as possible.

I am so happy I have all of you as companions in this latest experiment.

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Hi Jan - Thank you so much for your response...... Yes I do agree that we have to give these druga a fair shake to really see if they help...

I guess when it comes to a med like mestinon I get scared b.c it is a pretty "heavy duty" drug as far as my drug regimn goes....

I think you just gave me the courage to give it the shot it needs..... Dr Grubb wants me tp at least try it...if not he wants to go to the procrit but it will be a battle to get that approved.......

again thanks for explaining your sympotms for me.... Keep us posted! It helps to hear from people that are going through what I am going through....

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Jan,

THANK YOU so much for helping me out.

My POTS doc wants me to read about people's experiences and see what I think and how they are dosing. I think you and I are very similar in our need to go with itsy-bitsy doses and work up VERY slowly!!!!

One more question...how far apart are the doses spaced?

I appreciate all of your dosing details...I will be sharing what you said with my doc. He has read all the literature, but hasn't actually prescribed it yet...but we are getting desperate! :( So, I may get to be the guinea pig.

Emily

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Yes, Yes and Yes. I have such vivid dreams, on Mestinon, that they are actually more intelligent than my waking thoughts!! Har Har!! Last night I dreamed that I bought a drum set and it included details like getting a course catalog to the local university and taking the classes, buying the right drum sticks and surprising my parents by drumming my way through the movie "That Thing You Do"! Oh, did I say intelligent? I meant "vivid" ! I've also started kick-boxing people at regular intervals. I certainly am alot more confident in my dreams now!! One was in matrix-like cat movements and I foiled two would-be backpack thieves!!

The transition onto Mestinon was hard for me, but one million times worth it. I started very slowly and when I had wierd flu-like feelings, I backed down a bit, gave it a few more days and tried again. I did this over and over. I am now at 60mg every 3 hours and right now I am flyin' high! My boss says that she really has noticed a difference- that I seem to be able to handle Thursdays and Fridays when before, I would nearly collapse half way through the work week. I don't have that "staticy" feeling as much as I once did.

Good luck. I would give it time.

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Jan

My daughter, Rachel, has also started on mestinon (from Grubb) just the way you have started. She started with a 1/4 tab a day and will increase the same way you are. We have noticed that she does not tolerate most drugs if started at full dosing. Actually, she usually stays at the low end of most drugs permanently.

Louise

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