Hi all,

I realy need advice, as soon as possible. Sorry for any typos. My sleep doc recently switched me from provigil to adderall and then meth as I was having trouble keeping my eyes open and staying awake.

As it appeared the mestinion wasn't helping, my neuro advised I discontinue for now.

The meth worked well for both keeping me awake and keeping my eyes open. I have trouble with the eyes when the meth was wearing off at the end of the day, and got the sleep doc to adjust it so it was close to bedtime rather than the middle of the day.

Woke up this morning worse than ever...couldn't open my eyes at all to get out of bed. Ended up making my way to the bathroom for meds at about 9 and called in sick. Meth is definately working, not tired at all, but I can still barely open my eyes. and don't know what to do.

Should I try Mestinon to see if I get any benefit? Try another 5mg of the amphetamine (allowed up to 30, but have been taking 25), or should I see if the ER will give a shot of epi, as I've suspected the norepinephrine has been what's helping all along? Thanks in advance.

By "meth" I am assuming you mean methylphenidate, the same as Focalin? That is a powerful med, and most want it worn off a couple of hours at least before bedtime.

I am thinking the forced "alertness" has tired your ocular muscles. I am not sure throwing more meds at it is the best solution. I would suggest calling both the sleep doc and neuro for a possible solution.

Good luck.

Actually by meth I meant Desoxyn, the legal perscription version of methamphetamine. Adderall made me edgy and I have trouble with the generic brand of d-amphetamine, aside from the fact that my pharmicist said its on backorder.

I'd have been willing to try Focalin, but the sleep doc never brought it up, only Dexedrine and Desoxyn. I'd already asked the pharmicist about Dexedrine when I couldn't take the Adderall, so when given the choice I chose Desoxyn. Next time I'll use the brand name as it looks much less sketchy, but it is legal.

My neuro usually returns phone calls at the end of the day and I don't have any to drive me to the ER at the moment so I'm trying a Mestinon tab to see if it helps.

EDIT: Your theory about forced alertness makes sense though, since the amphetamine has been allowing me to keep my eyes open like a normal person for the last week. Also my sleep doc is pulmonary, not neuro, so I'm thinking that since I feel alert but can't open my eyes its not his area. I am waiting on a consult with a sleep neuro, but that doesn't help much now.

Sorry if I don't respond to people right away. I"m having trouble focusing on the screen at the moment.

Will let you know if the Mestinon helps and will try to call my neuro. I'm pretty sure my sleep doc would tell me to either come in or go to the ER. Neither are an option at the moment as the closest ER is setup for emergencies only (no hospital attached) and I can't drive to the sleep docs office.

If the mestinon doesn't help I'll get someone to drive me to the ER tonight.

The mestinon test is definately helping. I still have sever ptosis, but I can open my eyes some without overly straining.

I'm in a bit confused though. I was taken off the mestinion because it stopped working and I was having trouble keeping my eyes open through the workday.

The amphetamine helped both the sleepiness and the eyelid symptoms after the mestinon failed. My neuro even said that something other than MG was causing the eyelid problem since the mestinon was doing nothing and amphetamines aren't supposed to help MG.

Now I feel like today was the complete reverse. The amphetamine helped with the sleepiness, but my eyelids were pretty much stuck until the mestinon.

I don't know if I'd just become tolerant of the Mestinon or if there's multiple conditions and today happened to be an MG attack (possibly due to over stimulation, maybe just random).

If I stop the amphetamine, the Mestinon alone doesn't seem to do much and I'm too sleepy to function. If I stop the Mestinon, it seems the amphetamine over stimulates the MG. I'll try to get in touch with both doctors, but I feel like neither way will allow me to function long term.

What a yukky situation! I hope you get some resolution.

I hope so too. I spoke with the nurse at the pulmonary office and she's going to call me back with the doctor's recommendation. I emailed my neurologist--hopefully I hear back from her about either this situation or the consult with the sleep neuro.

The pulmonary doctor is good, but most of his practice is apnea and I don't know how much he's taking neuro-muscular into account. We had a disagreement about what level of sleepiness is acceptable and I realized later that he thought sleepiness was left over drowsiness from BiPAP therapy, whereas to me, it was, "I can't open my eyes without the medicine." I didn't verbalize this very well, though.

Unfortunately I can't find any local neurologist who specialize in sleep, only a few that I know didn't treat sleep problems as of a few years ago and are really MS doctors or generalists.

EDIT: Another possibly related piece to the puzzle is that my BiPAP numbers have been almost off the chart since switching masks a few days ago. The new mask is much more comfortable, but I wonder if a few nights of high leaks and apneas contributed to today. I'm going to try to shave my beard and try to make the new mask work, as every other mask pulls on the back of my neck, hurts my ears, or leaks all around on high pressure. Strange thing is I don't feel this leaking at all, but the computer doesn't lie. Its also the only mask I have since my old one needed replacement parts.

So sorry you are going through all this. Have you tried some ice packs on your eyes? It helps me when they start to tremble.

kathie

I really would re-think taking meth. That stuff is very dangerous.

I notice they tried you on Adderall and it didn't help. (I my have misread that) Please be aware that Adderall is contradicted for mg patients. It stopped my breathing the last time I was in ICU and I was on a vent for 7 days. It's one of those drugs mg patients should never take because it affects your breathing.

Goo luck and hope you find what works for you!

Juanita