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Sleep aid
How can a patient fell better with their sleeping problems in a bad day? I only see medication on the internet but nothing about alternative medicine.
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13 Replies
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My PCP has prescribed Hydroxyzine to reduce anxiety and help with sleep.
Scott
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I use ibuprofen pm & 12.5mg slow release ambein as needed not for long term use, usually when I’m taking High doses of prednisone.
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Thanks to share this information, it is really a help.
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Have been thinks about those options also
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I’ve been told ambien and other sleep aids are dangerous for MG Patients, so that’s not available to me. I take 150mg of Trazadone at bedtime and that helps. Kentucky is not a state that has medical marijuana so, though that helps with sleep, it’s not easily available.
But what I found that helps me a lot is hemp derived Delta 8 THC. That is legal in KY and most other states as long as it has less than .3% THC. You can get it in tinctures, vape tubes, gummies and other edibles as well as infused hemp flowers. I have a dry herb vaporizer that I use to vape Delta 8 flowers when I go to bed and I’ve been sleeping much better than I have been.
Thanks for this discussion.
Frank
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Trazadone is very affective and safe for MG patients according to my PCP & Neurologist. Works great for me.
TL
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Thank you.
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I am using delta but this only when my pain can’t even let me sleep a single hour…. I know this is not orthodox way but living in pain is such a hell sometimes…
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Pure ZZz’s 2 or 3, works for me (melatonin).
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Yeah this stuff helps.
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I’ve been trying Inheal products and now I feel better. Those are great, hopefully somebody could feel relief with them. Those are not bad products. But a help to people who is suffering.
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thanks to everybody who always answer in this site, you are very lovely. Thank you, I really appreciate it.
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I use delta 8 gummies when I feel I will encounter stress or anxiety with people or a venue — (ilnd8.com) gluten free, no gelatin, and vegan.. — just one calms my nerves and they come in a small packet easy to carry.
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yes, those are a bless when I am having a hard time.
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I still have HORRID ONSET INSOMNIA, ever since I started showing MG symptoms on July 25th 2019. I remained undiagnosed till late March 2020. My insomnia is still HORRID, and because most people don’t know ZIPP, about MYASTHENIA GRAVIS, I still don’t know if my issues are due to the SIDE EFFECTS of MG, my MEDS, or being stuck for over 5 MONTHS in 5 HOSPITALS with all their meds, IV lines, life support, cold rooms, paper thin short gowns, lights always on or what.
I have had three sleep studies … and no one would give me the results. Fortunately ALL STRIPES and PICNIC HEALTH RARE DISEASE RESEARCH FOUNDATION REGISTRIES have recovered over 1600 medical documents, tests, and consults … mulit pages in length. So I have the tests results now. I just need to get a referral to a doctor who is familiar with sleep studies and MG. On two tests, I had 11 minutes and 0 minutes of REM sleep. So I keep GOOGLING and researching.
I am on heavy doses of CELLCEPT and MESTINON. AVOID MELATONIN AT ALL COSTS. The medical drug websites say that MELATONIN is very dangerous to any of us on IMMUNO-SUPPRESSION MEDS. MELATONIN revives our immune system … while our drugs are suppressing our immune system … so our bodies don’t attack our cells. I am still trying to find a sleep solution. You always feel like SHIT .. when it takes 3 hours to get asleep, and then you wake up to early at 5 or 6 am …and rarely get back asleep. So with only three or four hours of sleep … you are the walking DEAD, and go lying down constantly.
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Thank you for providing information about Melatonin, I just did some quick research and tossed it out. Like others I’ll take Hydrooxyzine at bedtime or Delta 8 gummy in the early afternoon to aid with sleep.
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As a followup to my earlier answer …. At the moment I am still in MG REMISSION since I got out of my 5th hospital of 2020, on Black Friday 11-27-2020. At the five hospitals, I was given over 90 medications, and my med list is still growing as I receive my new, just discovered missing hospital reports.
Due to heavy doses of sedatives and three antibiotics I had 100% hearing loss for over 4 months. Then the hospitals started dumping STATINS and STEROIDS (especially high doses of PREDNISONE), so the hospitals also gave me MEDICALLY INDUCED DIABETES II. Once those drugs were tapered and KILLED …. my numbers of 350-400-high dumped to 113-120. So my new Diabetes doctor finally tapered me off of everyone shooting me up with LANTUS products … once or twice a day … by 10-25-2021.
So whatever drugs that you are considering, FIRST run them by an INTELLIGENT MG SAVVY NEUROLOGIST, who is familiar with all the MEDS very dangerous to MG patients … over 200 so far. I am stable and in REMISSION NOW … and I do not want to get a CODE RED and DIE again. Death by ACUTE HYPERCAPNIC RESPIRATORY FAILURE … due to an overdose of two ANESTHESIAS … given to an UNDIAGNOSED MYASTHENIA GRAVIS PATIENT … for MRI & CATSCAN TESTS. .
So be INFORMED about the risks and side effects of any meds … that you may wish to add to your current daily dose. I take over 5500 MGs daily to keep me stable.
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As noted, Trazodone, although an antidepressant, is a very good sleep aid with a very wide dosage range, making it possible to gradually titrate the dose up or down. Medical marijuana is another very good sleep aid.
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Dear Jonathan,
I’m sooooo sorry that in addition to dealing with MG you are having sleep issues.
My neurologist who IS an MG specialist has me on melatonin to help me sleep and has no problem with it. She took me off other drugs I used for sleep because they were contraindicated for people with MG. I’ve not had any problems with it at all.
I also take trazodone for sleep. It is labeled primarily as an-antidepressant, but is commonly used as a sleep aid. My neurologist is fine with it and upped me to 150mg before bedtime. It helps, but if I don’t take it, I don’t sleep much at all.
Sadly, I think your issues are your Cellcept. A dear friend has lupus and has been on Cellcept for years. Unless she takes zolpidem (Ambien) she can not go to sleep. Even in she’s totally exhausted she won’t sleep without Ambien. Sadly Ambient is NOT a drug for people with MG because it can reduce lung strength (or something like that). Another of my go to supplements–valerian root–doesn’t work because it is a muscle relaxer and that is NOT something for people with MG to take. The same goes for the prescription muscle relaxer tisanidine which helped me.
I’m sorry to be of no help and all I can suggest is to keep researching. Maybe some research centered on side effects of cellcept could help. None of my friends doctors are surprised she has sleep issues because of the drug, but no-one has suggestions other than ambien.
Best of luck!
Frank
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