Who Has Experienced Taking Mestinon And A Beta Blocker?

[Lethargic Smiles]

Alex has drawn my attention to Mestinon as a medication to talk to my doctor about. I plan to do just that. I read the research and checked out some old threads on it. I've got the e-mail with articles attached, ready to go. However, there is one area I am fuzzy on which is what to do about my beta blocker.

My doctor consults with my Mayo Clinic doctors as needed, but also takes my research seriously, so knowing other people's experiences will be really helpful. I'd like to hear about people who took a beta blocker along with Mestinon. From my understanding, Mestinon doesn't effect the resting heart rate quite so much as it effects the standing heart rate. If this is the case with me, I'll probably need a bit of beta blocker for days my resting heart rate is tachycardic.

Any stories are welcome and will be helpful. Specific questions I have are... Did you need to decrease the amount of beta blocker after starting Mestinon? If yes, did you do this right away or did you wait to see how Mestinon effected you? Did you find it effected your resting pulse? How long was it before you saw the first signs of benefit (or lack thereof)? If you know your dosages, that is always helpful as well.

Thanks in advance for your time!

[Guest Alex]

Hi Jackie,

when I started mestinon I was already on propranolol (10 mg bid) and florinef (0.1 mg bid). My initial mestinon dose was 45 mg upon waking up, 30 mg 4 hours later and 15 mg in the afternoon (4 more hours later).

In time I realized that florinef was actually responsible for a lot of my symptoms (symptoms that my dr attributed to my dysautonomia) so I discontinued that, and then later on I weaned off the beta blocker as well (again, due to side effects).

I have seen improvements with mestinon from the first dose I took, but what I never considered at that point was to reduce my propranolol intake (live and learn, right?). In hindsight I believe that the combo of mestinon and propranolol was responsible for my episodes of bradycardia as well as for my cholinergic chrises.

What has helped me tweak my medication doses was keeping records of my vitals (HR and BP measured on a daily basis at the same times) and communicating those numbers to one of my doctors.

I hope I answered all your questions, but if there is more you'd like to know, you know where to find me

[Lethargic Smiles]

I'd like to be off of the beta blocker, the sooner the better. I believe I could be on a lower dose of Midodrine without it since I have to lower my Midodrine dose if I have a day where I take less beta blocker. I also think it makes me more fatigued. Unfortunately, I may still need a bit of beta blocker because, prior to any sort of treatment (fluid loading, salt, etc), I had tachycardia even at rest (unless I am supine). I suppose we will wait and see what happens. My proposed game plan is to go back to the beta blocker, give my body a rest and let it get back in its groove with that, then add Mestinon according to what is outlined in Dr. Grubb's article and monitor closely. We'll see what my doctor says.

Thanks for all your support!

[Psalm 23]

Hi Jackie,

Two years ago I started taking Clonidine 0.1mg Bid and Mestinin 60mg Tid which restrained my tachycardia but because of a continued very labile b/p with upper limits of 200/110, Propranalol 10mg Bid was added in about three months later. That amount was reduced a short time later to 5mg Bid because of chest pain and worsening shortness of breath. Three months ago the propranalol was discontinued because of bradycardia and hypotension. At present the Clonidine has been reduced to 0.05mg Bid because of hypotension problems but that amount combined with the Mestinon is not enough to fully restrain my tachycardia or the extreme tremulousness so I am not sure where this is going for me at the moment. Mestinon is generally an add on medication. It is rather short acting and so there would appear to be a need to have another medication along side it to have better tachycardia management. I don't tolerate beta blockers well so substituting a larger dose of propranalol for the clonidine wasn't an option. I suspect MSAC as another diagnosis but that has yet to be determined. In any event until three months ago my supine heart rate ran in the 60s and standing 70s-80s. My labile b/p always remained pretty labile. I honestly do not take my b/p or check my heart rate on a regular basis. Only if something feels different and I am feeling less well then usual so I don't have as specific information as you might like.

Best wishes to you in finding a new drug regime that helps.

Janet

[Lethargic Smiles]

Janet, this was great information. I only take my BP/HR regularly during medication changes or, like you, when something feels off, so I completely understand not having stats. I'd like to do a weekly poorman's test just to track things, but I don't. Thanks for sharing your experience and sorry things are all mixed up for you as what to do med-wise. I hope something is figured out!

[Chaos]

I've been on beta blockers for several years. (propanalol which was changed to nadalol this Jan.) I just started mestonin 30 mg 3x a day 2 weeks ago. I'm also on midodrine. Jury is still out on the mestonin. Have been having pretty intense nausea on it, which isn't one of the usual side-effects. Was supposed to go up to 60 mg 3x a day after 1 week, but only got up to the full starting dose a few days ago, so am going to stay here for awhile before increasing. Haven't had bradycardia, but still having some tachycardia, especially in the mornings or before all the meds kick in.

I was hoping it would help with the weakness that continues to be one of my most limiting issues. So far it hasn't.

[Lethargic Smiles]

Chaos, thanks for sharing. Changing around meds is so difficult! It's hard to decide how many/which symptoms (on top of all the ones we already have) we can endure or are "worth it" to be able to see if a medicine helps.

It'd be great if in a week or two you came back and updated us!