[gay]

Had the same onset – small hurricane on Mississippi Gulf Coast went through to major gMG in 24 hours due to stress (previous house destroyed in a major storm). Symptoms, after several years of IVIg and other infusions, have been reduced but flare up during the summer on the coast. The role of mental/emotional stress and its control without too many more drugs needs to be researched and reported on. My most volatile and sensitive symptom is diplopia, which prevents driving.

[Indi]

I have been unable to sleep for over 4 yrs. I get restless legs too, which does not help. I am not tired during the day. I have tried benadryl, and melatonin. Neither helped. I am lucky if I get 2hrß of sound sleep.

[wilson]

I finally gave into sleeping pills. Steroids are probably the cause of my not being able to sleep.

I have been on them for the last several years. I would like to think I will wean off of them but at my age I doubt that is going to happen. Don’t start on them if you can keep from it.

[miche]

You can’t stay on steroid forever unless a minute dose. I don’t sleep easily, I fond CBD helpful.

[buzzybee]

I have the same problem. my doctor didn’t want to put me on anything addictive. she asked me to try Doxepin and it does help. Before I was sleeping about 3 hours a night. Now I’m getting about 6 hours of solid sleep.

[John]

Very interesting Buzzybee, many thx and will look into Doxepin. Yes Gay, Stress! I’m sure it’s been mentioned many times, but I’m convinced with what’s happened to me, that MG contributes to well over 60% to our(well, to mine anyway) condition and perhaps this should have its own heading to see how many of us can pinpoint an event or events in our lives that led up to this, and see if there is a common denominator? I blamed a rash, in my case something rather nasty called Dyshidrotic eczema on IVIG treatment, but now realize that’s not the case, when I get stressed, I can feel it in my hands and feet.

As for various sleeping drugs, Zolpidem (ambien)10mg, is the only one that works anywhere from 1.5 to 3 hours max, otherwise I just lie there, hour after hour and then at 6-7 am in the morning, may take half of another one just to get a few hours sleep(and one shouldnt) and then stagger all over the place and I know this is not good. Many others I have tried actually give me nightmares and my Doc said I must sleep, so now for the first time in my life he recs I take Xanax and take that before I go to bed and if I wake up after say 3-5 hours, then take a Zolpidem. Hmmm, this just does feel right to me as I think Xanax is an anti-depressant and I’m nor depressed as such, just stressed, perhaps that’s the same as in anxiety?

And as for the poster only getting 2 hours sleep, yes, I feel for you. I used to love my sleep and it’s just like something therein is stopping you from doing so, and how much is this actually MG specific? The strange thing is that when I was on 60-80mg of preds, I couldn’t sleep all night had loads of energy, no dry skin or psoriasis issues(had all my life) and now I’m down to less than 2.5MG, all those issues, back but vision has suffered due to those preds…..

But I, we, all need sleep. What to do? Wish you all well.

[buzzybee]

I took Xanax for years for anxiety. The doctor that was giving me the prescription retired. The doctor that replaced him told me to wean myself off of the Xanax. It was one of the hardest things I have ever done. I thought I was going to have to “check myself in.” I’m sure using it once in awhile is okay but every day could be a problem if you decide to stop taking it. hope things get better for you 🐈

[John]

Thx all. Yeah I think Xanax is dangerous. So I was told to go slow and take half my zolpidem and then 1 gummie and eventually wean of zolpidem, but noticed I had to pee every 2 hours, I then last night took one alprazolam 0.5(xanax) and on the recs of others here, tried as mentioned, sunmed sleep gummies with CBN( says 16mg per serving and 60mg total CNB per serving.)Yep, I went to sleep on and off through the night but for whatever reason kept peeing every hour and had very strange dreams…..and basically felt awful the rest of the day, unsteady on feet and just tired. Had a pee test last week and no traces of anything so no UTI. But, a recent scan showed kidney stones,(punctate stone as well 3mm) albeit not huge and having back pain so wondered if they might be passing through, hence the numerous trips to the loo. Plus I have been taking plenty of beetroot juice which has been wonderful in getting my BP down but I read its not good if you have kidney stones.

Xanax is for anxiety and depression and I think my Doc was wrong to say I need this to sleep and then(and it says on the bottle, not to take Zolpidem within 2 hours of Xanax) the doc says I can take Zolpidem later on…..No, as a poster mentioned, will eventually send one to the funny farm. Was concerned to hear another poster could have had a serious fall due to CBD(hemp) but reverted back. Understand as need sleep. Will just try a half a zolpidem and half a gummie tonight and see. Plus, these gummies are not cheap, $2.00 each(30 in tub). However, if something works, it’s priceless.

[jeri]

I started 1GM 2x daily of CellCept in Nov 2024. In Feb 2025 I got a terrible rash on my hands which continued to my legs (front only). My dermatologist said it was due to the CellCept. He said CellCept causes any sun damage or pre-cancers to the surface in form of a rash. I ran out of my CC and backed down to 500mg 2x daily. The rash subsided and is now healing. I’m not sure if this could be your issue, but it was strange how I just stumbled on this relief measure. My Neuro was even surprised. Best wishes to all my MG buddies!

[Susagoode]

Are you saying that a rash or eczema is another MG symptom?

My daughter has MG but seems in remission for the most part but lately her hands have had a horrible rash almost blisters for unknown reason. But to the sleep subject she cannot sleep and takes 2-10 mg ambien when she can get a script. She takes so much sleep medication that I worry for her and still doesn’t get enough sleep ever to be rested. Constantly fatigued. High stress job as an attorney so interested in the remark about stress and rash.

Thanks to you all for posting.

[John]

No not directly. IVIG I thought was the cause of eczema, or rashes, but now convinced that this is stress and now you say your daughter has a fair amount of stress as an attorney, more convinced that this has a lot to do with what “could” have caused many of us to one day simply wake up, and be it one month later, or 3 years later, finally be diagnosed with MG! and then for whatever reason, some of us start to develop some form of rash. Again, it could be the preds or other pills we take long term. I don’t know for others, but for me, it’s stress related.

My wife has dementia, had three major Florida storms in 2024, major flooding with Hurricane Ian in 2022, damage to properties then and around June last year or so was really doing well and eyesight improving, everything doing really good with MG issues under control and then all hell broke loose on the SW Florida coast. Again. Yes, got to control my stress levels and get some good sleep.

Onwards.😱😁

[Phyllis]

I’m sorry to hear you’re having trouble. I have for years. My doctor prescribed Temazapam, however, I only take it when I am extremely anxious, as I don’t like the grogginess the next morning. I have been taking SunMed Beyond CBD gummies for 2 years with great success. I’ve tried other things, like melatonin, valerian root, and teas, and other CBD gummies without the success. These work like a charm for me. I hope you find something that works for you.

[greynold]

On recommendation of Neuro Doc and Pharmacist, I’ve had some success with daily dose of 25 mg CBD (from Hemp) caps and 300 mg Magnesium Chelate for anxiety and sleep issues. Had tried Rx Zoloft 15 mg last year with negative side effects of increased anxiety and racing heart… I did experience an unusual side effect with CBD that after 3 weeks continuous use – I experienced a ‘Sleep walk Fall’ in my bedroom. I did not hurt myself, other than a bruise and big knot on my right elbow; however, I’ve never Sleep walked before and I had no knowledge of getting up and walking that night… The fear of what could happen, caused me to go off the CBD for a few days, but the positive effect it had on me caused me to take on modified schedule of 2 days ON and 1 day OFF. So far that continues to work well for me. CBD seemed to act fairly quickly for me after only a few days dosing; similarly the negative effects returned very quickly once I discontinued.

Hope you find a good solution for you.

greynold99

[Susagoode]

Phyllis, which of the CBD variety do you take? I immediately looked the brand up but they make several varieties. 2 had low level THC so I’m not sure I can obtain that in Idaho but I’ll try if that’s the one you use. My daughter seriously needs some sleep. By the way, she is not on any meds for MG nor IVig for a couple years now and just struggles periodically through symptoms, but the insomnia continues and the eczema is new in last month.

Thank you!

Susan

[Jodi Enders]

Hey there! I’m reaching out to see if you are interested in participating in a short volunteer community spotlight. MyastheniaGravisNews.com is looking for individuals to share a personal story (350–500 words) for our June Myasthenia Gravis Community Spotlight. You can write about any topic you’d like, just needs to be your original work and not published anywhere else.

The initiative of the spotlight is to highlight various voices and stories within the MG community. I was curious if you’d be interested in providing a view of a parent with a child with MG.

Along with your story, we’d need three images to go with it (plus captions), and if there are any people in the photos, you’ll just need to mention who they are by first and last name. We also ask for one photo to be used as your cover image.

If you’re interested, just let me know! We’d need to receive everything within the next two weeks.

If it’s not your thing or the timing’s not right, no worries! I appreciate you taking a moment to consider it

Jodi, Team Member

[Phyllis]

I take Sunmed Beyond, they have low THC under 3% so you can take them on planes inside the United States. The THC is derived from hemp, not marijuana plants. The bonus is that I have no grogginess the next day & it’s actually helped me with anxiety, as well. I take one an hour before going to bed. Please note that I do not have breathing issues unless I am doing strenuous activity. If you do, then please check with a doctor before taking. They don’t affect my breathing, but everyone is different. Let us know if you find something that works. Good luck!

[mik]

Just a heads up Xanax and Ambien isn’t recommended with our Mg.

[Sharon Haw]

Every so often, I get a run of several weeks of really bad insomnia and restless legs. It’s like someone turned off my sleep switch. I don’t feel tired but I’m exhausted and I have to void every hour instead of once or twice overnight. I’ve had signs of stress lately but no apparent cause – my psychologist says a lot of people are stressed by the global economic uncertainty, warfare, and disasters lately whether they are directly impacted or not. I’ve had sinus congestion for the past 7 months which wakes me up, too. I stop swallowing, the congestion gums up and blocks my nostrils. It feels like whatever keeps my sinuses and nasal passages open isn’t working anymore. I’ve had many nights of zero sleep or 1 or 2 hours at most. I’ve followed all of the protocols and tried many non-addictive medications, and nothing works anymore. Taking 1/4 of a trazodone pill to get to sleep occasionally used to work great, but now it makes me restless and I wake up 2 hours later and can’t get back to sleep. Because of my MG, I can’t go to the gym or on walks on days I don’t sleep because I get out of breathe after 5 minutes or I have to lay down for the rest of the day (and not sleep) with exhaustion and aching muscles. I haven’t slept more than 0-3 hrs for the past week and today I’m taking an Uber to a doctor appt instead of driving.

[wilson]

I have had to take sleeping pills for past four years. I suspect the steroids that I take are the reason I can’t sleep without taking them. Clearly habit forming and don’t recommend them.