Hi, Barbi-girl! Welcome.
I posted this over on Ron's post.
Quote:
I looked up insomnia in the "Coping with Prednisone" book. You might not be on steroids, but they give good advice in that book. Exercise can help, but that's difficult for MGers. Maybe even a small bit earlier in the afternoon might help. Meditation is useful. A peaceful environment (with no lights/clocks), comfy bed, cooler rather than hot room, and white noise can help.
Tryptophan can be helpful. Melatonin isn't always recommended for those with autoimmune diseases. Milk at bedtime is not useful. Why? Amino acids only make someone sleepy once they hit the large intestines, hours after intake. 5-HTP can also make one sleepy.
As with anything, speak to your internist and/or neuro first.
There are things that can add to insomnia, such as caffeine (and lack of exercise).
I am on Flovent, which can cause the same issues as oral steroids. There are times when I have wicked insomnia, but that may be from other hormones! I don't just sit in bed and toss and turn. I either meditate, get up and have a small snack, or watch something on TV that I know will put me out (weather channels or baseball games). White noise or a fan can help, too.
Sleep is so important! Very hard on the central nervous system, heart, and brain without sleep. Have you ever had a sleep study? A CPAP/APAP/BiPAP might help you sleep as well.
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That's a fairly high dose of steroids. I doubt that it's too soon to think about tapering Pred. Who is monitoring the steroids for you? You may need something like IVIG in the meantime, as Mike did. These days, MG experts try to use steroids only during an exacerbation. The long-term side effects and inability to withdraw from the drug make it a difficult drug at best. Sure, it can really help AIs, but I've known so many people who wish they'd never taken it.
Do you have a pulmonologist? They work in tandem with neuros in a hospital setting. They could at least assess the pulmonary portion of your MG to monitor your progress. Neuros can't do that!
Massaging muscles can also help. Why? That has the same effect as exercise without actually exercising. But doing that could make you weaker as well. Worth a try!
I hope you can find relief too!
Annie