Mesiton

[kayjay]

I have hyper pots and my dr wants to start me on mesiton. I am wondering how other people with hyper made out with this drug. Please share your story.... it is always so helpful to me! Thankyou

[janiedelite]

I have mild hyperadrenergic POTS (standing norepi 1089). I was encouraged by Mayo to take mestinon, increase by 30mg intervals, to a max of 180mg a day. I started last fall and went very slowly, only increasing by 30mg every 2 weeks and got up to 180mg. At first, I felt an increase in energy. Not huge, but noticeable. As I continued to increase the dose, I began to have more chest pressure. This may NOT have been due to the mestinon because I normally have more chest pain in the wintertime anyway.

But normally my episodes of chest pain, hypertension and flushing are relieved by lying down. I started having these episodes WHILE I was lying down. I ended up going to the ER when I couldn't get my BP to down from 185/105 and I had these waves of heavy chest pain alternating with waves of tingling coolness. It was just wierd! I ended up being kept overnight in the hospital because my troponin went up to 0.35 and was only brought down by nitro. Still I went home and continued the mestinon, taking nitro every couple hours.

Three days after being back home, I had another of these tingling hypertensive episodes while lying down. The nitro eliminated and I was back to normal within a couple hours. This prompted me to quit mestinon and, what do you know?.... No more of these episodes while lying down! I still have my regular chest pain which is under better control with carvedilol. I only need to take nitro when I'm under moderate to severe stress.

Just my experience. I could probably resume the mestinon at a lower dose, but I didn't want to risk having any more problems with coronary vasoconstriction.

[babettess]

Hi Kayjay,

I have hyper POTS and I just today started taking Mestinon. My doctor prescribed a very small dose of 1/4 of a 60mg tablet once a day for 2 weeks and then 1/2 a day for 2 weeks and then 1 pill a day. He is very aware of my medication sensitivities and is very willing to start my doses out small. I got up enough nerve to try 1/8 of a pill today and I didn't have any side effects. I will stay on this small dose for a few days and then start the 1/4 if all goes well.

I will keep you informed of how it goes.

Babette

[babettess]

Hi Kayjay,

I'm on day two of taking 1/8 of a 60mg tablet. No difference yet but I'm taking a VERY TINY dose. One funny thing though-the first thing my husband said when he came home today was, " Wow! You actually have color in your cheeks today." I read somewhere that Mestinon gives you color. So we will see.

Did you start yours yet?

Babette

[kayjay]

I started last night. 30mg in the am and 30 in the pm. Funny thing is I was less sick to my stomach today! Also I think walking up the stairs was easier. We shall see. Hope you are doing well. Keep me posted!

[heathmcev]

Hi kayjay,

I've been on mestinon since October. Was at 60 mg for 2 months (worked up to that slowly) then my dr up'd me to 180mg Timespan. Apparently mestinon has a very short half-life, so if you take it 1st thing in the morning, it's out of your system by afternoon, which was why I was feeling awful from about 3pm onwards. Even tho I increased gradually to the timespan, my body couldn't tolerate the higher dose. I had horrible abdominal cramping and gi problems - too bad to just deal. I went off the mestinon completely for a week to get it out of my system, then slowly went back up to the original 60mg of the non-timespan pill. I now cut that in half so I'm taking 30mg at breakfast & 30mg at dinner to keep it in my body most of the day. Seems to be working, and I may go up to 30mg 3 x/day just to see what hapens.

One other wierd side effect that did go away -- my thumbs twitched for the first 2 weeks!! Was certainly a minor thing, but I was glad when that stopped

Hope this helps and that you have luck with it!

-dizzyde