New clinical trial for Mestinon

[ljimbo423]

@Mary I took some Huperzine A / Parasymplus a few years back when I was at my worst. Noticed nothing at small doses, and a significant worsening at high dose that took a week to wear off. Other people have had success however.

I also had a significant worsening of symptoms. I think they were from the Huperzine increasing acetylcholine. Raising my acetylcholine levels, weather it's with choline, phosphatidylcholine or Huperzine, makes me feel much worse.

It made me feel worse slowly, over about a week but I started to feel better within a few hours of stopping it.

I agree @Mary, it's a crap shoot. Might make you feel better, might make you feel worse. Only one way to find out for sure.

 

[Mary]

Interesting @ljimbo423 - actually I already take choline with no problem. I started taking it several years ago to see if it would help with my memory, and it did. Within a week I was better remembering things I meant to buy at the store, etc. So there is a possibility the huperzine might raise my acetylcholine too high . . . It is nice to hear you started to feel better within a few hours of stopping it though!

We have to be guinea pigs as you note! And I don't know of any other way to make progress, and thank goodness once in awhile we hit a home run such as with BCAAs

 

[frozenborderline]

I recently tried mestinon. I started at a very low dose and still got some side effects. If I wasn’t so sick I might try and push through the side effects but my quality of life is already so low. Also I think the cause of my pots is either cci or mold toxicity or more likely both, so I expect it to go away once I address those. Still feel a little guilty for not pushing through Bc I don’t want the new pots doctor to think I’m non compliant

 

[Mel9]

I recently tried mestinon. I started at a very low dose and still got some side effects. If I wasn’t so sick I might try and push through the side effects but my quality of life is already so low. Also I think the cause of my pots is either cci or mold toxicity or more likely both, so I expect it to go away once I address those. Still feel a little guilty for not pushing through Bc I don’t want the new pots doctor to think I’m non compliant

The side effects can be overwhelming at first. The only reason I persisted with it was the sudden feeling of ‘better’ after my first 30mg.

I had to take anti nausea medication and eventually had to stop most other supplements so I could keep taking Mestinon.

I’m so very glad I did, because all side effects are now gone

but we are all different.

 

[kangaSue]

We have to be guinea pigs as you note!

You could always have a blood test done to check for acetylcholine receptor antibodies. It might not help though as I did this test and had a low titre of these and thought Mestinon would be just what I needed for the GI problems too, but it only helped to improve my sweat function (which is reduced due to having Autonomic Neuropathy).

 

[Mary]

You could always have a blood test done to check for acetylcholine receptor antibodies. It might not help though as I did this test and had a low titre of these and thought Mestinon would be just what I needed for the GI problems too, but it only helped to improve my sweat function (which is reduced due to having Autonomic Neuropathy).

Thanks @kangaSue, but I have some questions. I've never looked into SFN or anything to do with acetylcholine before. So what did having a low titre of acetylcholine receptor antibodies mean, or, rather, why would it be an indication that Mestinon might help with GI problems? I'm guessing that you were assuming that low levels of acetylcholine might be the cause of your GI problems, and so Mestinon might help. But I don't know what that has to do with acetylcholine receptor antibodies. Could you explain? Thank you!

 

[kangaSue]

These antibodies are more commonly found in Myasthenia Gravis and Mestinon is a first line med for that.

Those with MG can have significant GI dysfunction too, hence my drawing the conclusion that it might help with my GI problems as well.

Some GI's prescribe Mestinon just for gastroparesis though as it can act as a motility agent when there is a problem with acetylcholine signalling, something which can be the case with Autonomic Neuropathy too, and I was diagnosed with AN after which, my GI prescribed Mestinon.
(SFN can also be referred to as Autonomic Neuropathy when it also affects autonomic fibres rather than just affecting your extremities.)

Low titres of acetylcholine receptor antibodies can be found in healthy people as well though (I think the statistic is in about 5 % of cases) so a doctor will pay little regard to it unless it is above a certain cut off point. I also had a low (negative) titre of a voltage gated calcium channel which can occur in autoimmune neuropathy so I had a few different reasons to expect that Mestinon might have significant benefits.

 

[pattismith]

Interesting @ljimbo423 - actually I already take choline with no problem. I started taking it several years ago to see if it would help with my memory, and it did. Within a week I was better remembering things I meant to buy at the store, etc. So there is a possibility the huperzine might raise my acetylcholine too high . . . It is nice to hear you started to feel better within a few hours of stopping it though!

We have to be guinea pigs as you note! And I don't know of any other way to make progress, and thank goodness once in awhile we hit a home run such as with BCAAs

Did you try Ginkgo Biloba ?

like Mestinon, it has cholinergic effect, and it is also believed to improve brain perfusion.

I am currently starting a trial with ginkgo and felt an effect on my brain (I would say beneficial but it's only a two days trial for now). The minimum dose to take is 120 mg and you can have better effects with 240 and 360 mg.

 

[Mel9]

Did you try Ginkgo Biloba ?

like Mestinon, it has cholinergic effect, and it is also believed to improve brain perfusion.

I am currently starting a trial with ginkgo and felt an effect on my brain (I would say beneficial but it's only a two days trial for now). The minimum dose to take is 120 mg and you can have better effects with 240 and 360 mg.

I would be very interested in how your Ginkgo Biloba trial went @pattismith

 

[pattismith]

I would be very interested in how your Ginkgo Biloba trial went @pattismith

Hello Mel9,
I had to stop it. The reason was not from the Ginkgo, but for the Testosterone dosage that I couldn't tolerate(head pressure, teeth pain, acne), so I had to stop everything and try different testosterone doses to see what I can tolerate, and if I can increase the dose very slowly.
I suspect some autonomic nervous system problem though, so I currently added some Mestinon at night only.
I know starting several drugs together is a bit risky for us, but we have so much issues to adress at the same time, we don't really have choice...

Testosterone seems to be very efficient for all kind of pain + muscle strength + excess join laxity, so I try to stick to this one for the moment, because I need a quick relief.

 

[Inara]

The side effects can be overwhelming at first.

That's my experience, too. I started with 10mg and waited until the side effects were gone and then increased. And so on...

I am really curious about the outcome of this mestinon trial. Sadly, it will take a while, which is normal of course, but still...

 

[hunter1899]

Any update on this trial?