Starting Mestinon
 

Finally found a neurologist who prescribed mestinon to see if it would do any good, as my AChR test was negative, and no one would ever run any tests beyond that.

She said, start with 1/2 pill (30mg) three times a day, and work up to 1 pill (60mg) three times a day.

But, me being me, who has a list of drug reactions and side effects longer than my arm, and having been floored by pediatric doses of some medicines, I decided to start with 1/4 pill (15mg) in case it did something evil to me like so many other meds (there's even an antihistamine, allergy med, that MAKES my throat swell shut, yes, I am allergic to an anti-allergic med.)

Well, THE 1/4 PILL WORKS!!!!! Other people can SEE the difference, it's not just me thinking it. I stand straighter with no conscious thought about it. I can walk, really walk, like a normal person, no longer shuffling along in pain and unsteadiness, at twice the speed I have been, with minimal shortness of breath. I'm not huffing and puffing to breathe if I'm talking while standing or walking. I can sit without having my head against the back of the chair, (or wall if the chair isn't tall enough) without being in pain or getting dizzy. My eyes can move to the right again (also have eye muscle problems), and I can look up for more than 2 seconds. IT WORKS.

If I save the third quarter-pill to bedtime, or "cheat" and take a fourth quarter, I am sleeping so much better, because I don't have to be so careful about what position I am in (I sleep in a recliner, because if I am not upright enough I don't breathe well). I have even had a few dreams this past week, I haven't dreamed in YEARS.

I am finding, tho, that by the end of the day I am exhausted. Not weak-exhausted, tired-exhausted, worn out. Figure it's because I am doing more in a day than I have for years and I'm not used to it?

The 15 mg seems to work for about 4 hours from time of taking. Or, it's worn off to the point where the upper back pain comes back if I'm standing, the sweating from the exertion of standing or walking comes back, basically things just fall apart after the 4 hour mark, they're decreasing before that.

So, should I work up to the 30mg, and then 60mg the doctor told me to, or should I just stay at the 15mg since it's made such an improvement for me, and move up in dosage when the need arrives, not just now because that's what I am supposed to do?

Doctor is difficult to get a message through to, their patient portal email is just general delivery, so it goes to the office and hopefully someone gets it to her. She didn't really think it was going to have an effect, why, I dunno, my ophthalmologist has been saying it was mg for about 5 years now (but no one local will treat anything without a blood test to diagnose) and I've had symptoms for over 15 years (was pregnant with daughter when it started, so weak and out of breath I could not stand and talk at the same time, the effort of microwaving my lunch and then walking back down the hallway to my desk had me so weak I'd just sit there, staring at my food, because I couldn't raise my arms from my sides to get it into my mouth).

My follow up appointment is in early January. I suppose I should try to get a message through to her now? But I don't see a reason to up the dosage yet, especially when the results I am getting now are wearing me out, what good could more energy/strength possibly do me? And wouldn't it be better to save the ability to up the dosage for when I need it?

Anything you can tell me about how it all works would be great. No one in my area knows anything about mg, nor do they care to. This doc is not local, hubby needs to take time off from work to get me there (I don't drive anymore because of vision), and having only been to her once, I don't know how she will take me claiming results from such a low dose. But other people can SEE the difference in me, including my physical therapist of many years, so it's NOT my imagination.

winic1,
Great, now seems like your getting there. Hope for the best. I don't think it would hurt for you take the dosage she prescribed for you. You might really feel good. Mestinon does not last long in your system, only 2-3 hrs after you take it, so it is not building up. Keep us posted.
FREDH

I feel really good now, on the low dose. And I am wearing myself out, now that I don't have to sit down for half an hour after every 5 minutes on my feet. I haven't been this active in years, not sure I could take feeling any better, if you know what I mean.

If this dose is working, it seems that going higher, at least right now, isn't necessary?

winic1,
I am very happy for you. you know what works best. If your good, that's what you want. Let us know.
FREDH

You might want to try Timespan 180mg I find them to be gentler on the stomach and slowly releases for a prolonged time span for a much as 8hrs maybe in your case you could get away with one a day, regular Mestinon 60mg pills are fast acting and short effect 2 to 4hrs...Just my .02

Good luck

I was wondering about the time release one--I am sleeping better because breathing is "lighter" and easier, and not so position-dependent, if I take my little piece of a pill before bed, too. I might actually be able to lay down flat, or nearly flat, instead of halfway or more up in a recliner! Haven't been able to lay flat for more than 6 years. If I had a pill that lasted all night, geez, I might actually be able to sleep all night, that would be a novelty!

Went to see my daughter perform in The Nutcracker being performed by her dance studio. Went up the long flight of stairs in the old theater to the balcony, and was hardly out of breath when we got to our seats! And was then able to sit through the show without my neck and upper back hurting from the effort of holding my own head up.

This is fun.

I'm taking Mestinon SR around the clock when I'm feeling better and don't need a quick acting dose, you can also break them in HALF when in need of a lower dose, I find it a lot gentler on the digestive system and less cramps and having to go to bathroom too.

Glad to hear that things are working out for you!😉

Mestinon
 

You are very lucky that it is working so well for you and I think I would be a little dubious taking more but I don't think it would do any harm to try if you find it is too much you could always go back to the lower dose. I think 60mg 3x a day must be standard practice!!! I started taking mestinon 8 months ago and felt no change on the half 30mg tablets. I started on 1x30mg once a day for a week then 1x30mg twice a day for a week etc until I got to 1x60mg 3 times a day I noticed no difference until I took my first full 60mg tablet and I felt much less fatigued my eyes were more open my face more symmetrical, no trouble swallowing however I do find it only works for me for up to 3 hours and I do then feel a wall of fatigue however my eyes and my swallowing stay fine except by about 9pm when my droopy eye slowly starts to come back. I also find taking mestinon with a glass of milk stops me getting acid indigestion and taking it half an hour before or after a meal stops me getting stomach pains. It took a while to work out how to feel OK with it. :)

If I remember correctly the Max dosage per day is 1200mg +/-

I've been on mestinon for 11 years and first started on 180 mg 2 times a day (3 x 60 mg)that was good for maybe 2 1/2 years and I started getting SEVERE diarrhea SEVERE stomach cramps SEVERE sweats and dizziness so I dropped down to 150 mg (2 1/2 ) twice a day for another 2 1/2 to 3 years and again the same SEVERE symptoms so 2 weeks ago on 135 mg or 2 1/4 SEVERE diarrhea, stomach cramps,sweating and dizziness so I stopped cause was to scared till I saw my neuro and told to drop down to 90 mg or 11/2 twice a day.