Mestinon Questions?

[kitt]

I started Mestinon a week ago. Started slow at 7.5 mg twice a day.

Felt it helped with my sleep at night, one of my biggest problems since I have a norepinephrine level of over 1400. The adrenaline with that high of an NE makes it impossible to sleep more than one, sometimes two hours at a time, and I have great difficulty falling back asleep.

Felt as if Mestinon inhibited the excessive sympathic activity, and was really pleased, as I was able to sleep for longer periods. I felt a bit more energized during the day, which is an issue for me since I have a CFS with hyper pots.

On Sunday night I switched the Mestinon to 15.mg 2 x a day, and felt like I've been 'hit by a truck' everyday since.

Have spent my days in bed which is not normal for me.

Did anyone taking Mestinon have a hard time 'getting started'? Anyone notice time being a factor, or were you 'up and running' right off the bat?

Thanks for your feedback!

[roxie]

I took mestinon a few years ago. I felt it helped. I told people I could do things and actually sleep that night which is opposite of my normal.

Whenever I increased I did have an adjustment period but that's normal for me and any med.

it seemed like my body adjusted to mestinon and stopped working. Now for sleep I'm taking propranolol and clonidine. It helps some but I still feel like i need more.

[Kellysavedbygrace]

Kitt, is your dose really 15mg? My script is for 60mg 2-3x a day. I usually just take 2 but that seems off.

I'm glad to hear you've seen some improvements. I agree w bananas to hang in there through the titration time if you can. If you find u can't maybe go back to original dose and consult the doc but don't give up.

Btw- when I was at Vandy I had to get off the Mestinon again. I noticed more benefits of Mestinon being off it than on. I think for me the improvements were so subtle. Most helpful benefits- lower fatigue, fog, crashing. I also noticed some side effects went away- reduced sweat and digestive issues.

[kitt]

Kelly,

Yes, 30 mg. a day is my prescribed dose of Mestinon.

My cardiologist studied with Dr. Jeffrey Goldberger at Northwestern U. Dr. Goldberger is a longtime researcher of dysautonomia and has been Vice President of the Dysautonomia Foundation and on the board of directors. He has authored dozens of papers on dysautonomia.

My cardiologist has been on this journey with me from the beginning, and has done all the testing and seen my negative and extreme response to two low doses of BB's and a low dose of Clonodine.

Perhaps because he witnessed my extreme and somewhat bizarre reactions to very low doses of bb's and Clonodine, he choose to prescribe Mestinon as he did. Seems like a wise decision based on my responses.

I know what the standard dosage is. I've done the research. But some of us have a hyper response to even small doses of medication due to immune and neurologic predispositions.

What concerns me is a poster on Dinet who claimed her Mayo doctor said Mestinon was NOT indicated for hyper-pots patients. I'm also trying to understand if other patients had difficulty titrating up to a higher dose. It's not where you start the dose, but where you end in terms of mgs. I've had this experience with almost every drug I've ever taken. Hyper sensitive in the beginning.

Thank you for you input. So you're going to stay off Mestinon after going off of it?

Lower fatigue would be a gigantic benefit for me due to having CFS , yet when I titrated up a small amount my fatigue increased.

I queried posters about Mestinon before this appointment, and there were two types of responses. Some felt it was a 'shrug drug' (great term!) and others felt they couldn't live without it!

On the basis of people who 'loved it' I felt I should try it. Rama and several others. Hope they'll chime in.

Am trying to determine if others had difficulty titrating up and if anyone else was told it was contraindicated in hyper pots?

I see the doctor at M.D Anderson tomorrow after doing a slew of blood testing and a24 hour urine collection for N-Methyl-histimine and 11-beta-Prostaglandin F2 to test for Mastocytosis. Am hoping for a negative response, but have MCA at the least and hope to get a lead for that. M.D. Anderson does not treat MCA and only agreed to do a work up for systemic Mastocytosis after I 'applied'. (No one can make an appt at M.D Anderson to see a doctor without sending in paperwork.)

That's 'off-topic' but I appreciate input from anyone with experience with Mestinon.

I appreciate the responses, and if anyone else is a 'freak' who has an extreme reaction to even very small doses of medication I'd appreciate your thoughts.

[green]

I really like mestinon. The effect is subtle, but consistent. It helps me read longer for school, and helps me not 'crash' after exercise.

The only side-effect I get is frequent bowel movements, except when I accidentally take two at once, then I have reduced motor function and muscle spasms. Don't overdose!