Mestinon

[Adria]

Hello Everyone,

I finally got an appointment with my actual cardiologist and not one of his partners that have no knowledge whatsoever about POTS. Anyway, he is letting me have my way as far as trying Mestinon. I am starting out at 60mg 3 times a day. I just took my first dose and thus far no side effects . No improvement yet either but it's only been a couple of hours. I know that the dose I am currently on is considered low, however, provided that I do not have side effects at this dose my cardiologist is prepared to increase my dose. I was wondering how long does it take for the benefits of mestinon to present themselves. Just wondering when should I expect to see an increase in BP? Thanks.

Best Wishes,

Adria

[doctorguest]

Mestinon is a type of medication that should produce effects immediately, but your body may need a few doses to adjust. Mestinon does not increase BP, but rather prevent orthostatic drop in BP, as well as attenuate orthostatic HR increase. It's good that you don't have side effects with your first dose - that does imply that you may tolerate increasing the dose further, if necessary. However, I'd give it a few more days at your current dose before considering increasing it. Good luck!

[Patricia]

Doctorguest,

If Mestinon does not increase blood pressure, then is it beneficial to those of us POTS patients with "normal" resting BP's in the

80's-low 90's/50-60 range?

Thanks,

Patricia

[roxie]

I did better with Mestinon then with any other medication, I was able to go out 2-3 times a week!!!! It took me awhile to get that strong with it though, so give it some time as long as you tolerate it

Dr. Guest- you said tha mestinon isn't supposed to increase bp, but after taking it for ayear and a half last spring all of a sudden my bp went high, we had to take both my florinef and my mestinon down to half a dose. The times we have tried to increase it my bp has gone up within 2 days Soon I would like to try staggering the doses. Are you sure mestinon doesn't cause hbp?

It's soooo frustrasting b.c no matter what I do I can't regain the strength that I had with more meds, but my body doesn't want to handle. can your body change like that? I just don't know what to do and get disappointed sometimes.

we may try and back track on other meds I have taken

Madeline

[doctorguest]

Patricia, yes, Mestinon is beneficial because it helps stabilize blood pressure and heart rate through enhancing the autonomic nervous system transmission in the peripheral nervous system (try saying this 3 times ). Although Mestinon does not directly increase blood pressure, like Florinef or Midodrine, it is useful in patients with POTS and OH because it prevents orthostatic fluctuations.

Madeline, yes, your response to medications and your autonomic disorder can both change over time. It can be very frustrating because it requires medications adjustment, changes or complete change of treatment plan. Your blood pressure probably increased secondary to Florinef, not Mestinon, or it could have increased on its own and not from medications. Hope you and your doctor can figure out a new treatment plan for you!

[roxie]

Dr Guest, does that mean there is potential that I could get benefit from retrying other medications I have been taken in the past but stopped for various reasons?

One med that helped was Midodinre but then my bp would shoot up with just a half of a pill in the AM. It could change now that it's been a few years?

Maybe it has to do with the florinef, I have been taking that for 9 1/2 years. My body is just very wierd though, no one really knows what to do, it is all trial and error

Madeline

[doctorguest]

Madeline, it is a complicated trial and error approach for a complicated disorder. Please, discuss with your doctor what your next step in treatment sould be. I cannot advise you for or against a retrial of Midodrine, but your doctor should have a recommendation for you in this regard. Good luck!

[Ernie]

Hi,

I felt the effect within 2 hours.

[Rachel]

Adria,

I noticed a difference from Mestinon within a day. I had more strength and energy (not much, but a little). After a few days, though, it backfired on me and I was bedridded until the med was out of my system.

I want to try it again sometime in the liquid form because I require such a tiny dose that even the smallest dose of pills was too much.

I hope it works well for you. Let us know how it is going!

Rachel

[roxie]

rachel, i started out with the liquid b.c they didn't make a low enough dose for me to start with, i have the same problem as you!!

i may be giving it another try this month staggering it, like every three days and see how my body handles it b.c before it helped so much

i'm trying to figure if I should retry procrit and i don't know my mind is constantly cahnges, has anyone had good experieces with mestinon and procrit?

madeline