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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-18-2014, 01:14 PM | #1 | ||
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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. |
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02-18-2014, 02:55 PM | #2 | ||
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Quote:
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. |
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02-18-2014, 02:59 PM | #3 | ||
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What a yukky situation! I hope you get some resolution.
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02-18-2014, 04:02 PM | #4 | ||
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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. Last edited by BackwardPawn; 02-18-2014 at 05:09 PM. |
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02-18-2014, 05:21 PM | #5 | |||
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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 |
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02-18-2014, 07:19 PM | #6 | |||
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I really would re-think taking meth. That stuff is very dangerous.
__________________
Celeste |
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02-18-2014, 09:44 PM | #7 | |||
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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 |
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"Thanks for this!" says: | Panorama (02-18-2014), southblues (02-18-2014) |
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