Pots Symptoms Worse After Changing Dose And Then Stopping Med

[iheartcats]

I find it hard to believe a DOSAGE adjustment could cause this much of an issue.

I was on Mestinon for 2 months, 60mg, once in the AM and once in the PM. I couldn't say for sure it was helping or not (hard to tell what the Midodrine, Mestinon and Inderal do together!).

That ran out so to see if it would help more + for convenience to only take once a day I switched to the 180mg timed-release which said it releases 60mg instantly and the other 120 over several hours. With that I had the bad side effects noted in the literature which are usually a sign of overdose. It was an awful experience and I was down that whole day.

Now that I'm completely off Mestinon I am much more Potsy. I was doing better with the 60mg twice a day...now I'm doing worse without it...but I was doing HORRIBLE with the 180mg Timed-Release.

How can such a 'small' dosage increase matter? Some people mentioned the non-generic Timespan seems stronger but I don't know how accurate that is...you'd think generic/non-generic of Mestinon would be similar as it's an old medicine.

Anyway. I'm beginning to think I'm losing it because the lower dose helped, the higher does made me sick as heck.

[MelissaCrystal]

Our bodies are SO sensitive that it gets dependent on drugs really easily. At least in my experience. It took me 3 months of shaving down pills to get off something without withdrawing and feeling like I should be in the hospital. I seriously had to shave it down in order to not experience horrible symptoms. So of course the reverse is true for a lot of drugs. Not really sedatives (for me) but any kind of upper or birth control or anything that messes with my levels tends to make me react in weird ways.

[ramakentesh]

I guess at the end of the day one of the mechanisms that controls changes in blood pressure and circulation when standing is faulty in POTS, the others are constantly trying to compensate. WHen they finally find a balancing point it doesnt appear to take much for them to go back out of wack and be unable to compensate. Just a theory.

[futurehope]

I find it hard to believe a DOSAGE adjustment could cause this much of an issue.

To put your reactions to changes in Mestinon dosing in context....

I was given the liquid form of Mestinon and a syringe to pull 5 MG of the liquid into it. It was a minute amount. It gave me a horrible headache and I couldn't wait for it to wear off. 60 MG's would have put me on the floor. So, yes, any amount of anything changes our "homeostasis" (set point). That's my opinion.

[iheartcats]

Good to know I'm not 'imagining' all this. But yeesh. Talk about a picky condition to have.

[maggie]

My doctor wanted me to try mestinon, but when I did the research on the drug I kept reading how hard it was to get off the med. When I read this and for other reasons as well I decided not to try this med. So you're not going crazy many others are having problems with this med as well.

Maggie

[iheartcats]

My doctor has told me to go back on it since my symptoms are worse now...60mg two times a day.

I guess when I want to go off for real I'm going to have to taper it somehow. It's supposed to be one you can just stop...but that didn't seem to work. And too much of a dose is not a good thing, either!