Pyridostigmine

[erikainorlando]

I took pyridostigmine when I was first diagnosed back in March. I really didn't notice any difference so i stopped taking it. I just read that itis usually helpful in post-viral or autoimmune pots. This is what I thought I had....am I to assume from the lack of benefit from this that my acetocholine levels are ok? Does this mean I don't have post viral POTS?

I have POTS but I do not appear to have any blood pressure problems.

Any input is real helpful here!! Thank you!!

Erika

[ramakentesh]

Not necessarily. Mestinon seems to work by increasing either sympathetic or (more precisely noradrenergic) activity in the lower limbs or vascular system, increasing vasoconstriction there. Or this is the presumed mechanism.

However there is a finding that it helped a patient with orthostatic hypertension where the lower vascular system was not at fault. In this patient a hyperadrergic response was attentuated, seemingly proving the theory that perhaps there is a partial denervation causing hypersensitivity of remaining receptors.

Mestinon is also being evaluated for use in patients who have faulty parasympathetic activity (an evolving field in POTS research).

Edited July 7, 2009 by flop

[bjt22]

I don't think it's actually helped me with the pooling or with being orthostatic...but, I think it's made some of the symptoms I get while upright more tolerable, if that makes sense. And for the record...it's speeding up of my digestive tract is reason enough for me to stay on it. I know it makes some people have gastro problems because of this, but for me it is a definite benefit.

[erikainorlando]

Thank you!

Would you expect that it would help even if you are not struggling wiht hypotension tho?

When they speack of acetocholine receptors....do they mean the acetocholine nicotonic receptors or are those different? Does anyone know? Just wondering as someone mentioned that POTS and Guillain Barre are both affected by these potentially...and perhaps this is something I should look into.

Sorry for sounding so confused with this but I am. Furthermore, I am sick..and would love to feel better!! I just am thinking there may be some connection in my body that has abnormal immune reponses (POTS and Guillain Barre).

Thanks again...any info is really appreciated

Erika

[iheartcats]

I tried Mestinon/Pyridostigmine for a month at 60/mg morning/evening. I didn't think it was doing much so I tried 180mg (timed-release) and had the really bad side effects (tingling, twitching, lethargy, etc). So my DR and I decided to drop this. A few days later I was feeling much worse again so we put me back on 30/mg morning/evening and it is helping. I'll probably be back up to the 60/mg morning/evening next week as that was my original working dose. I just wanted to get back slowly.

They think I have post-viral POTS (my sister has POTS symptoms, too, but maybe it's a genetic trigger we carry?). Anyway, the Pyridostigmine plus BB plus Midodrine are helping me live a more normal life. Not normal like it used to be but better than it was.

I'm still not sure what the he77 it does, though! (Pyridostigmine)

[ramakentesh]

Yeah it helped patients with neuropathy who may have reduced blood pressure on standing and in one case it actually helped a patient with postural hypertension (hyperadrenergic presentation who in theory shouldnt have been helped by it). For me this may indicate that hypers also have some form of neuropathy - patchy denervation where other receptors are becoming hyperactive to compensate.

I think many of the patients with suspect neuropathy tend to have stomach / gerd type issues and pupil issues. I have accommodation or focusing issues and visual snow.

[janiedelite]

I was told by the Mayo neurologist to try mestinon and midodrine, although we've been trying to conceive so I haven't done this yet. I just mention this because I have high BP with standing and elevated norepinephrine on standing. He called me mildly hyperadrenergic and said I had POTS from small fiber neuropathy. I also have problems with frostbite of my feet. When I took midodrine before, it made the frostbite problems worse (bluish feet, purple toes, cold, painful, chilblains). I mentioned this to the neuro and he thought that taking midodrine with mestinon would make my pooling better, thus reducing the compensatory norepinephrine and reducing the vasoconstriction to my feet.

If we don't get pregnant in the next few months, I'm going back on birth control and will try the mestinon. I'm still hesitant to try the midodrine, but if all goes well for a week or so on mestinon then I'll add the midodrine and see what happens. I'm not expecting any miracles...

[erikainorlando]

I tried the Pyridostigmine today...30 mg. I didn't feel any better...in fact...my tongue got itchy and the pressure in my head seemed to get worse. I don't know if these things go away with use. I did get them when I first tried it too and discontinued it because I didn't see any benefit from it after a week.

After reading that it may take from 2 - 4 weeks to see an benefit I decided to try it again. I will try it again tommorrow...hope this itchy tongue and head pressure gets better...anyone have these side effects from it?

Thanks..............Erika