Mestinon Users Or Once Used..... I Sooo Need Some Help

[hilbiligrl]

I've been on mestinon for 2 weeks now..... at times, i think i feel energy for the first time, like a tiny ray of light...... but at others i feel im crashing worse. My headaches have increased significantly and the past 2-3 days i am in a very bad 'pots hole' (i guess i culd say that).... today, i feel worse than i have in weeks and im getting desperate.... feeling so very sick and weak as i normally was. (not the side effects, as the side effects of the mestinon are dying down a bit adn are tolerable now somewhat)..... it's just, i feel like i have took 4 steps back from where i was or something........ I think i may have to force myself to get to the doc for a shot to kick the migraine out as it's lasted for 3 days now. Should i tough this med out for another week or 2? as, 2 weeks in, i can't tell whether or not its helping..... does it take a good 3-4 weeks before one notices that it helps??

any info is appreciated

thanks so much, as the suffering these past 2-3 days is intense and unbearable.......

tennille

[kclynn]

tennille,

My son took this med so hard for me to say exactly what he was feeling. He did about 8 weeks of this med, started out low and increased over time. After the first couple of weeks it seemed for a short time maybe was helping but really after that he got worse, and much of his problem was seizure like jerking, his comprension and loopy phases got way worse, and many other things that I have posted on here. I do NOT know for a fact it was the med, could be the med just wasn't helping. After he stopped the med he slowly improved but 5 wks later we also saw Dr. A and started the Midodrine and Florinef. Just thought I would tell you our experience.

I had heard from people who take it that it is a med that really needs fine tuning to an individual, and at the time Mayo wasn't very responsive.

Good Luck, hope you get some answers. What dose are you on and have you talked to your Dr.?

[hilbiligrl]

hi kc:

i was prescribed 60 mg 3 x a day.... but i started off on one half tab, and have just worked up to a full tablet twice a day..... seems like since i increased it, i've gotten worse. My doc doesnt know much about this drug, it took me 4 mths to talk him into letting me try it to see if it would work for me, as i seem to be in the more unable to function catagory. I haven't talked to my doc yet, as i told him i would call him in a couple of weeks and let him know how i was coping with the side effects and all. It's due time i call him, but i think he and I are in the same catagory as in, we are both experimenting to see what works and what doesnt.

Im thinking of cutting back to half tabs again and seeing if that makes a difference. I too have noticed an increase in 'loopiness' (confusion with disorientation) as well as shaking all over (but i think that might be from taking too much phenergan, as taking too much can make you shake.... but not sure if the mestinon is contributing to that as well).... so yea, over the past few days, my symptoms are worse...... i did however, take a 2 day trip from here in tn to florida to show my kids the beach for the first time and it was a 10 hour drive both ways and we didnt stay the night..... not sure if that totally set me back or what......

thanks kc for sharing that..... i will cut my pills in half and work with that a few days and see where that gets me... maybe 60 mg is just too much for me??

thanks so much again..... i don't feel so freak outish now..... cuz i was kinda losing it and i... just dont lose it, ya know?

tennille

[houswoea]

It started helping me in about a week. I had to be very careful about eating when I took it or it made me feel crazy. I still take it and it may be a coincidence but I'm doing better now.

[skiberthoud]

My experience has only been good on Mestinon, from day one. I will say this, though, that before/during my period it doesn't seem to help one bit. So, I'm not sure if hormone changes have a big impact on how you feel or not (and this might not be applicable to you right now anyway) but I'd say that if that could be a contributing factor you may want to give it some more time. I'm sorry you aren't having a good experience. I know you were really hoping for it to really help. I hope that things even out for you, or you find some resolution to the "dip" one way or another...

[Rachel]

Hi Tennille

I tried Mestinon several years back. I felt okay for the first day or two, but after that I continued to get worse and worse. After a week or two on the Mestinon I was so weak that I couldn't walk. I stopped the medicine and quickly returned to "normal" for me. I was still disabled and mostly homebound, but at least I could walk around our tiny house again.

I hope you can figure out what is going on and what is causing this flare in symptoms.

Rachel

[Tachy Phlegming]

I had a headache for a couple of days from a bath mat. The second I figured out that that was a possibility, the bath mat went outside. When the headache went away 10 minutes later, the bath mat took a longer trip.

A med would have almost the same fate. With this kind of illness, after a certain point, a med really had to give me some real relief from something within a finite period of time and have few or minimal side effects. The "side effect" I seemed to start to experience if and when a medication didn't give me any or too minimal relief was an overwhelming amnesia about taking it.

Do you get the headaches a particular amount of time after taking it? It would be good to figure out whether it's when you take it or when it wears off as well as whether there's a time correlation to when you feel that "ray of light." That could help you figure out whether you need it or need to discontinue it.

That trip sounds miserable ...

[hilbiligrl]

hey everyone.....

i would have gotten back sooner, but i have really had some bad days and feel like i have been in a true pots hole.... days that i name 'i feel like death day'..... (i name my different days as to the severity of what's going on.... silly i know, but ya gotta have some humor in this disease to survive it..).... it didn't occur to me till last night that I am a few days away from my period, and then i remembered what one of yall wrote about it...... i totally forgot that i am normally worse anyways this time of month, but i do think the mestinon has worsened it, plus added to my headaches. So, for the past 2 days, i backed off to 1/2 tablet twice daily..... and the side effects lessened some, but i still remain in a bit of a potshole. I woke up this morning to having the feeling of almost able to say 'i feel pretty darn good'....which hasnt happened in a long long time, but it only lasted about 2 hours at the most and i have been in the bed sitting up since.

I've promised myself to try to stick it out 2 more weeks at the very least, as, yes, i was so looking forward to trying this drug and fought so hard to get it..... i at least want to give it an honest chance and see if all this subsides. If after 2-3 weeks, if no improvement then i'll stop..... if im still seeing rays of energy here and there, i may tweak around with the dosage as we go.

One other thing i noticed that was common said (when i searched on here about mestinon) is that i seem more loopy than normal, more confused and disoriented as normal. I have flare up like these, but not like this, this is different. My speech had really been difficult.... completing sentences are a huge task. It was really bad for a few days until i decreased my dose, when i decreased, these symptoms lessened a bit.

As far as my headache, its ever present..... as in, i've literally had a headache non stop for 2 years.... what i notice is the differences of the types of headaches and i know the differences in them well. But the migraine came out of nowhere.....

Im a bit dazed and confused myself right now anyways, so i better get so that my brain can rest, so i can rest... lol

thanks everyone for replying so fast.... yall helped my anxiety to lessen significantly

tennille