New, Question About Mestinon

[mcpucho]

Hi. Hope all is well.

Have interesting and long backstory, but will give the short of it.

I have symptoms of orthostatic hypotension (OH) - though it may better be called neurally mediated hypotension (NMH) - for many years now after Lyme disease, which was a late diagnosis and became chronic and autoimmune.

I have been receiving high doses of intravenous immunoglobulin (IVIG) since May of 2006 and made great advances, but OH never fully recovered. Was concomitantly taking Cymbalta, which I stopped, but had withdrawal symptoms from of which I am still recovering (and subsequently had to reinitate the drug at minimum dose) and it has increased OH and fatigue since I restarted. OH and fatigue levels had made great strides as well on IVIG.

Two tilt table tests (10 minute tests) have both been negative.

I have had twice documented cerebral hypoperfusion (when blood is not circulated in the brain properly) via SPECT scan, which is indicative though not conclusive of OH (or NMH, ie POTS).

I have other autonomic problems on testing including decreased sweating (sweat test) and failure of pain sensory test. I also suffer from distal, idopathic neuropathy which the IVIG has been very helpful for.

I am seeing my neurologist next week and want to discuss Mestinon with him, which I've read has had success in trials (versus Midodrine). I am not apt to take Flornief because its a steroid and has a high side effect profile. So I wanted to see some people's personal take on it.

I am also wondering about Adderall, for its Norephinephrine reuptake inhibition (which is also indicated in OH), though I do not like the side effects of these stimulant drugs and was very displeased when I once tried Provigil as it made me very mentally hyper and agitated.

I think I will try to test my Norephinephrine levels, which is a Catecholamines test. Unfortunately this test will have to wait until I am completely off Cymbalta for accuracy.

Wondering if anyone has done that testing for Catecholamines? Also have never had cardio workup beyond EKG, but will do an ECHO (echocardiogram) in two weeks in time.

Guess thats it for now. Thanks and be well.

Zip

[Eillyre]

Welcome, Zip!

Have you tried looking up past Mestinon discussions using the search engine (link is located in the light blue box at the top, right-hand side of your screen between the "Help" and "Members" links)? You should be able to find some of our more recent discussions/anecdotes about Mestinon there.

I'm on it myself and found it to be one of the "turning points" in my POTS saga. Outstanding results in my case with few and very insignificant side effects. Not everyone has been so blessed, however.

Best of luck! Glad you found us!

Angela

[roxie]

HI Zip, the combination of florinfd and mestinon, have been the only combination of meds that I have made progress on, I"ve been on them for a year and a half now, and am stronger then I have been since I got sick 9 years ago!!!

Best of Luck

Madeline

[mcpucho]

Thanks for your replies. I see my neuro Monday, what dosaging are you folks on for the Mestinon, and did you ramp up from a lower to higher dose? I would like to be prepared for our consult. I've read Dr Grubb's medical articles and will bring those with me.

Much thanks.

Also did you find that the Mestinon helped with energy/fatigue in addition to balance?

Cheers,

Zip

[Eillyre]

I'm currently taking 180mg each morning (extended release version -- I prefer taking 1 pill rather than 3 spread over the course of a day; haven't noticed any difference between it and the regular version in terms of effectiveness).

Dr. Low had me start very slowly and gradually work up to 180mg over 6 weeks. I think this is how we did it:

Week 1: 30mg in the morning

Week 2: 30mg in the morning, 30mg at dinnertime

Week 3: 30mg in the morning, 30mg at noon, 30mg at dinnertime

Week 4: 60mg in the morning, 30mg at noon, 30mg at dinnertime

Week 5: 60mg in the morning, 30mg at noon, 60mg at dinnertime

Week 6: 60mg in the morning, 60mg at noon, 60mg at dinnertime

As for Mestinon helping with energy, I don't think it really gave me extra energy but I was able to use what little energy I had more efficiently (since I wasn't spending it on constantly lying down & getting back up ). I noticed my energy increasing as I added in other treatment measures and improved my energy management (avoiding crashes).

Good luck on Monday!

Angela

[DSM3KIDZ]

Do you do IVIG for the Autonomic Neuropathy?

Dayna

[roxie]

I am taking 60mg in the morning. I have read that you can take more though, I will have to ask my dr.

I started out on a very small dose, like 10mg I think. It was SO small that I had to take the liquid and worked over to 60 mg over maybe 3 months.

I wouldn't say it gave me a ton more energy but I think that it's helped me create almost a platform where I can work with what I have and see some results instead of continous setbacks, if that makes sense. Maybe I should say the thing it helped with most is that I recover faster from doing things!

Good luck

Madeline

[Leigh]

I was on Cymbalta before doctors knew I had POTS and it made me suffer greatly. I was sleeping 18 hours a day in July, so I took myself off of it clean. The doctors wouldn't listen to me; I had to do something.

After trying Florinef and having a brief success followed by hospitalization, I was put on Mestinon 30 mg twice daily. I increased in myself and had such success I convinced my doctor to allow this. I take 60 mg twice daily and I am slowly but surely improving each week. I'm still in Level II Cardiac Rehab and I experience intestinal upset a couple times a day, but I'll take it! I have some cramping and loose stools, but it's worth it. My doctor isn't concerned enough to take me off of something that has helped me so much.

I still take Florinef for "breakthroughs" or episodes...I am with the others; I recover quicker than ever before!

I hope you have success!!

Does anyone know if you can take it while pregnant? I'm hoping to stay on it if we decide to have more kids.

Leigh

[roxie]

Leigh, idk if you can take it while pregnant, but I do know that the GI upset and loose stools will probably go away in a few weeks, at least they did for me! But then again I only take 60 mg in the AM.

I should talk to my Dr about taking more, does anyone know if that amount of mestinon is ok to take if you are EXTREMELY med sensitive and a small person?

Best wishes,

Madeline

[mcpucho]

Well doc started me on Mestinon, wants me to take 15mg 4 times a day (since the half life is only 4 hours).

Don't know if i can break up these pills into quarters so might try 30g twice a day and see how that goes. If response is good I will see if the sustained release (180mg), in a split does (90mg) may be good for me.

The theory behind using Mestinon for POTS symptoms is that antibodies get caught in the aceytioline receptors (AChR), aka ganglia. So I had my neuro take an AcHR test and some others and sent them to Mayo Clinic and we'll see what we get back.

I take the IVIG for autonomic and immunologic issues. My orthostatic tolerance improved greatly on it, until I started to withdraw from Cymbalta. I had a severe withdrawal reaction (started going mental) from Cymbalta and they put me back on the drug on the lowest dose and want me to "titrate" over the next few months. My balance nor energy has been as good since. Terrible time with this drug.

I can't take the Catecholamine testing until I get off the Cymbalta, since my results will be skewed.

Keep you all updated, and be well.