Hello All,
I am new to this forum and I'm so grateful I found it. My daughter is 20 years old and has been suffering for the past 9 months with severe fatigue, muscle weakness, tongue and speech problems, etc. We finally found a neurologist who believes she has MG (just need the lab tests back to prove it) based on the EMG and clinical findings. He prescribed mestinon immediately and that has been a huge help, although we're still wondering about the right dosage and timing.

Anyway, her main issue is lack of sleep. She hasn't been able to sleep for months and this is physically draining. Our PCP prescribed Klonapin to help her anxiety before we found this all out. We thought it would help her sleep, but didn't. The melatonin doesn't work either. Advil PM doesn't phase her. Sleepy Time tea doesn't help. Her B12 level is 800, so high enough. Does anyone have any tips or other ideas about why this is happening and how she can get relief. She says that she will toss and turn all night maybe dosing for 1/2 hour at a time.

Hi, and welcome. I hope your daughter can get a firm diagnosis soon.

I have Graves' disease (hyperthyroidism) as well as MG, so thyroid problems are always on my mind. Graves' disease is common in people with MG. Everyone who has MG should have a thyroid blood test anyway, but especially if they have symptoms like insomnia. The blood test is simple, and some doctors do it routinely anyway.

There are a zillion things besides Graves' that could cause insomnia--but since it makes sense to have a thyroid check anyway, it couldn't hurt to consider it. The good news is that hyperthyroidism is easy to treat. Also, being hyperthyroid makes MG symptoms worse, so if she does have it, it would be good to know.

Please feel free to ask questions here. If her blood test for MG comes back positive, then you have your diagnosis. But if it comes back negative, don't let anyone tell you that it rules out MG. There are lots of us here with a diagnosis of MG and negative blood tests.

Abby

Hello There,

Sorry to know this is happening:-(...I suffer from insomnia as well, and have for many years. I have epilepsy as well and know Klonopin is based for epilepsy...and I'm not a Doctor, but I don't know why Klonopin would be prescibed for spleep...never heard of that. I have been prescribed many meds for sleep throughout the years and have found the only one to help me is Ativan. Ativan is not only a sleep aide but is an anxiety med. My Doctor told me that anxiety has a lot to do with insomnia. Like I said, I have tried many, many meds for insomnia and Ativan has been the med that has worked for me. I have been taking it for a little over a year now and it still helps tremedously.
Just some input, I truly hope it helps...I will be praying for you and your Daughter.

Sincerely,
Michelle

Thanks for your response. She had the TSH and T3 done and they are well within normal limits. The PCP actually thought that hypothyroidism may have been her problem early on and put her on low dose synthroid even though her thyroid levels were normal, thinking that maybe they weren't normal for her. But she didn't have any improvement and with repeat thyroid testing 6 weeks later her levels were similar.

Thanks for the heads up about the coincidence with thyroid disease in MG. We'll be sure to ask our doc to repeat testing later so that we can monitor for it.

Does your daughter have problems sleeping in certain positions, because I have this problem?

If I lie on my back, I cannot sleep, because it feels as if I am being compressed. It literally feels as if my back muscle is bucking on my lungs.

I noticed that if I don't sleep on my back or left side, then I can get some rest.

A friend who is a nurse just told me about the Brazilian Toe Massage.... does anyone know about this? She says it really helps people fall asleep.

Im 21 and dx'd with mg and havent been able to sleep since ive had it either, the prednisone certainly didnt help things. but i take ambien 10 mg pretty much every night now. it is oner of those things that have a different effect on everyone....no night driving for me just crazy dreams so maybe that can be a consideration if shes as desperate as i am for sleep

Michelle, thanks for your note. I looked up Ativan on the internet and it is contraindicated for MG patients --- not sure if it reacts with the mestinon. I guess we'll keep hunting. Looks like many sleeping pills are on the "do not use" list.

I agree - Ativan is not for mg patients! It put me on a vent last year - fortunately I was already in ICU when they administered the Ativan. My oxogen level dropped from 98 to 36 within a matter of 5 minutes. Apparently it depresses your lungs. Of course, as we always say, everyone with mg is different, but based on my experience and the fact that Ativan is contradicted for mg, I wouldn't try it!


Good luck!

Violet, Hi. I'm sorry your daughter is having so many problems so young.

Do you mind saying what drug or supplement she is dosing every half an hour? I doubt that there are any meds where that is okay to do. You can get some serious side effects.

Go to www.myasthenia.org and take a look around. There are a lot of drugs that are relatively contraindicated for MG and some that are an absolute NO. If she gets diagnosed with MG, she'll have to really read up on it. And she'll need a pulmonologist too to assess her baseline breathing. Why? For a couple of reasons. One, then her pulmy will know when she gets worse and by how much. Two, if she ever has a breathing crisis, they can look at those records in a hospital and know what her pulmy has recommended. Neurologists are not pulmonologists and you need an expert to assess breathing. When I get worse, I have standing orders to go in for tests.

As far as the sleep issue, has she brought that up with either her primary doctor or the neurologist? Is she afraid to sleep? Some people with MG are, since we can wake up gasping for air. She needs to find out what the problem is exactly before she starts throwing drugs at it! There may be a reason and there may be supplements such as vitamin D and Melatonin which might help. She could get her Vit. D level tested to see if that's an issue.

I completely agree about the Ativan. It is a muscle relaxer! When you sleep, muscles become even weaker, so not a good idea. And some drugs can send an MGer into an MG crisis.

A toe massage is not a bad idea, however, she really needs to know the cause of what's going on. Dr. Oz has a LOT of tips on how to set yourself up for a good night's sleep, as do other doctors.

That was a great thought about Graves, Abby. What is your daughter's pulse? Ever check it? Look up the symptoms of Graves and have a look.

A lack of sleep is really bad overall and even worse for MGers. I hope she'll get to a doctor soon to discuss it!

Annie