Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I had my post-sleep consult on Thursday. The report says I actually slept 4.5 hours of the 6 hours I was hooked to machines. It seemed like I was awake the whole time so was glad to get some data.
Final conclusion is "Non-pathological (not clinically significant) apnea detected. Details show my lowest oxygen level was 92%, It seems I only had low oxygen episodes during REM sleep (15% of my sleep; normal isw 23%). Doctor says muscles relax during REM and that is when my problem shows up.
Interestingly I have far more lowering of oxygen episodes in REM sleep closer to morning. That timing is about 11 hours after last Mestinon. I wake up about twice a week groggy with mild headaches on nights when I felt I actually slept more soundly and didn't awaken in early morning.
The doctor says he treats by symptoms, not by graphs so offered me a trial of CPAP. I also have Sjogren's with dryness issues and can't sleep with any noise in room. He also said a mouth appliance was an option to move my jaw a bit forward to prevent throat collapse from happening during REM. But he said that can cause tooth problems (risky because of my Sjogren's dryness) or TMJ (joint pain). Or he said the other option is to do nothing for now and see if sleep troubles worsen.
I offered a fourth option - home oxygen measuring while sleeping. He said it wasn't offered. But the home healthcare store says they loan out machines with a prescription so we are pursuing that option for now. Otherwise I'll buy my own machine and record data for a month in hopes of catching the days with headaches. Then I thought I'd try a bedtime dose of Mestinon that my neurologist says I can add if necessary.
Has anyone heard of worsening oxygen levels as the night goes on and Mestinon wears off? I used to do lab research and analyze data for a living so feel like this is just one more experiment to try!
Flutebell
Final conclusion is "Non-pathological (not clinically significant) apnea detected. Details show my lowest oxygen level was 92%, It seems I only had low oxygen episodes during REM sleep (15% of my sleep; normal isw 23%). Doctor says muscles relax during REM and that is when my problem shows up.
Interestingly I have far more lowering of oxygen episodes in REM sleep closer to morning. That timing is about 11 hours after last Mestinon. I wake up about twice a week groggy with mild headaches on nights when I felt I actually slept more soundly and didn't awaken in early morning.
The doctor says he treats by symptoms, not by graphs so offered me a trial of CPAP. I also have Sjogren's with dryness issues and can't sleep with any noise in room. He also said a mouth appliance was an option to move my jaw a bit forward to prevent throat collapse from happening during REM. But he said that can cause tooth problems (risky because of my Sjogren's dryness) or TMJ (joint pain). Or he said the other option is to do nothing for now and see if sleep troubles worsen.
I offered a fourth option - home oxygen measuring while sleeping. He said it wasn't offered. But the home healthcare store says they loan out machines with a prescription so we are pursuing that option for now. Otherwise I'll buy my own machine and record data for a month in hopes of catching the days with headaches. Then I thought I'd try a bedtime dose of Mestinon that my neurologist says I can add if necessary.
Has anyone heard of worsening oxygen levels as the night goes on and Mestinon wears off? I used to do lab research and analyze data for a living so feel like this is just one more experiment to try!
Flutebell
Also have startred not initiating enough breaths at night during the past few years so now have a back up rate on my BIPAP. Many of us use them when we tire during the day.
I think you are right to have an all night oximitry. Your primary can even order it.
Mouth Appiiances work for a few but can cause major problems for others.WIth your muscle weakness a BIPAP would be more in order and better tolderated so I hope if you are offered a trial it goes straight to BIPAP mid way through the night if you can't and don't tolerate the CPAP. You can ask ahead of time and request they do this. That way you don't have to come back for another 2nd night of study.
Also wondered if you are on the TIme Span. I use that in the background and take a 60 mg. short acting before bed on top of it.
WIll hope you find something that works for you....Good for pushing for all the studies. Hugs, Marie
I would recommend BiPAP. It made a HUGE difference in my life. I felt like a new person after I started therapy. BiPAP is better for MG patients b/c the pressure is higher when you inhale and lower when you exhale - so it saves muscle strength.
The O2 monitor at night will definitely help to pinpoint the problem, but it is a diagnostic tool only. I would definitely try a BiPAP trial and see if it helps. I also wanted to say that I used to be a "light sleeper" and wake up to every little sound. Well, not anymore. With BiPAP, I sleep so well that I don't hear anything and rarely wake up during the night at all.
Jen
Michele
I, like Jen have dramatic O2 drops during REM. Mine drops into mid 60's, I don't stop breathing like some, I just get more and more slower respiration.
Good luck, I hope you get a quick answer.
During my recent accident, my husband had presence of mind to have our son bring BIPAP to hospital to ER and during 5 days in ICU. I needed Oxygen and the hospital can bleed O2 into with adapter.
I think the BiPAP has kept me out of crisis more than once.
Dee
Experiment will begin "in 1 to 2 weeks" according to the shipping receipt. If 02 levels drop enough at home I'll go in for CPAP trial and ask for a BiPap part way through the night for comparison.
Flutebell
I found out that the only other sleep clinic in town (at the hospital) can order overnight oxygen metering for one or two nights. My problems don't show themselves every night, just once or twice a week so I need to monitor longer. I will do several weeks of testing to see if REM drops regularly drops oxygen and then will take mestinon at bedtime to see if there is a difference. Then I'll go back to the sleep doctor who is very interested to see my self-collected data. I'm in a small city so am lucky that he actually understands MG sleep problems, even though I have to experiment on myself to get answers. I've been doing stuff like this (experimenting)with various docs and a naturopath figuring out my rare calcium disorder so this is much safer and hopefully faster.
Good thing I worked in a lab for decades plotting data so this should work okay for me. Will just have to get up a little earlier to download data each morning!
Flutebell
I understand about desaturation being only when you are overtired as I do the same. Before I was on Mesttnon I needed it 24 hours a day....
After mestinon much less often. For sure evenings plays a part for me. I carry a finger model about to test when I need to. IT fits nicely in a pocket or purse.
Good luck with this. Marie