INSOMNIA

[MJK]

Hi Jean. I have a niece that lives in Phillips! I am in Sun Prairie, just outside of Madison. I have the Congenital form of Myasthenia (CMS) and take a half of a Trazadone (50 mg) tablet for insomnia. My PCP rxed it (not nuero). Have been taking it for a while. I started on a 1 and 1/2 tablet dose and have weaned down to 1/2 tablet. When I was taking the higher dose, it did make me a bit weaker and I have to take it about an hour before I hope to get to sleep for it to work. I was finally able to fall asleep and stay asleep but I was then sleeping 9-10-11 hours, so that is why I have been slowiy trying to cut back the dosage. I also use bipap.

[David Davidson]

Have you tried mailordermeds.com out of Canada for the 180SR Mestinon. The Phone # 1-888-727-0726. Good luck.

[David Davidson]

OPPS wrong discussion Sorry

[Mama]

I wish I had a magic solution for insomnia. I am better since being taken off the 5 mg of Prednisone. Sometimes I am ready for bed very early. Some nights it may be as early as six and last night it was seven. I cannot stay awake. I may sleep for a couple of hours and tonight I slept for five. I may or may not go back to sleep. My body does not react well to most medications so I have not pursued sleep medications. I do hope the doctor you will be seeing will have a solution.

[Jonathan A]

I have ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS. I have been in REMISSION … gradually, since I left my fifth hospital of 2020 … on BLACK FRIDAY of 2020 … November 27, 2020. It was PURE HELL … since my first vision and very weak fingers/calves of MG first appeared on July 25, 2020 … when my fingers just did not have the strength behind them to switch the irrigation drop gates to start my yard irrigation that morning. I have recovered and in REMISSION from MG, … but NOT the lingering side effects of MG and the 5000 MGs of meds I take daily to suppress my symptoms and side effects.

My ongoing and continuing three BAD PROBLEMS are … ACUTE ONSET INSOMNIA, HEARING PROBLEMS at the lower voice ranges, and a TOASTED IMMUNE SYSTEM ( I try to get my gardening and pruning done … but get injured by flying insect bites and thorny rose, palm tree, and bougainvillea thorn punctures .. that take months and many tries at antibiotic meds to slowly heal). The MYASTHENIA GRAVIS NEWS FORUMS, such as the one that we are on now … is a great opportunity to learn from each other and share what we … and others like us discover. I complained earlier about INSOMNIA and other issues … and others have emailed me, medical papers of overseas trials and medical journal articles … that I keep copies of … in my computer medical files.

My INSOMNIA problem is basically …it takes hours to fall asleep, you then wake up a few hours later … say 3am or 4am … and it takes forever to fall back asleep, if at all. I follow all the rules … no lights, blackout window curtains, no caffeine after noon, wear eye (or my winter knit snow season caps pulled down over my eyes), no late TV, and try to poop myself out first … but nothing works. The reports that I have been emailed by others … say that overseas clinical trials have found that both SLEEPING INSOMNIA issues and HEARING LOSS issues are the newest “symptoms” of Myasthenia GRAVIS. But, because this information is relatively new, MG researchers are still uncertain, if these “symptoms” are because we have MG … or because of the required MEDICATIONS that we must take.

Such an example is the dangerous steroid PREDNISONE … that many of us are finding extremely difficult to taper down on and stop. That drug gave me SLEEPING ISSUES, WEIGHT GAIN, medically induced DIABETES II, and being forced to take three other meds (all start with “P”) to prevent stomach, GERT, and other issues. I finally got a terrific endocrine doctor, who tapered me off of people shooting me up with LANTUS products. I took two years, but I have been LANTUS shooting FREE, since 10-25-2022. My HORRID A1c scores are now 6.1 or 6.2 … or A1c readings on the five minute clinic A1c test … and not the SONORA QUEST LABS blood draws. So I have been safely under the A1c scores that all the people on tv ads are trying to achieve.

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>The </font>following<font color=”rgba(0, 0, 0, 0)” face=”inherit”> </font>articles … <font color=”rgba(0, 0, 0, 0)” face=”inherit”>that I have been emailed by others, relate to problems MG patients like me have encountered … so try GOOGLING to access them online … and print out copies to hand out to your own PCP, Sleep doctor, hearing doctor, and others accusing of you having something else … and call you TANGENTIAL or a POOR or DIFFICULT HISTORIAN, when you are trying to carefully explain all your MYASTHENIA GRAVIS symptoms.</font>

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“PAIN, HEADACHE, and OTHER NON-MOTOR SYMPTOMS in MYASTHENIA GRAVIS” by Olivia Tong published online 5-3-2018 Springer Science + Business Media, LLC (see sleep problems on … pgs 5 and 6)

MELATONIN … MAYO CLINIC PRESS website dangers of “Delayed sleep-wake phase disorder” and Insomnia … “its effects on sleep quality and total sleep time aren’t clear”. It also states on their webpages that MELATONIN and supplements “REDUCE BLOOD CLOTTING” and “INCREASE THE RISK OF BLEEDING”. Further on, it states that MYASTHENIA GRAVIS patients should never be given MELATONIN as it “CAN STIMULATE IMMUNE FUNCTION and INTERFERE with IMMUNOSUPPRESSIVE THERAPY”.

“RELATIONSHIP BETWEEN HEARING FUNCTION and MYASTHENIA GRAVIS: A CONTEMPORARY REVIEW” by Massimo Ralli in the 2017 Journal of INTERNATIONAL MEDICAL RESEARCH.

“HEARING TESTS CAN HELP DIAGNOSE, MONITOR MG, STUDY SUGGESTS” February 5, 2019 on this website of http://www.myastheniagravisnews.com/news/hearing-tests …. The article goes on to state the STUDY was published in the journal FRONTIERS IN NEUROLOGY. This article and another one state that TEOAE and DPOAE HEARING TESTS are the newest way to test and confirm that a patient has MG … just as well as the AChR Antibodies testing that they did on me.

I ZOOM monthly with four other MYASTHENIA GRAVIS groups … in the valley of Phoenix Az, in SUN CITY, AZ, in Minneapolis, and in LONDON. If I get email links from my four support groups, then I can ZOOM with other MG support groups in ATLANTA and SOUTHERN CAL. The LONDON MG Support group has a large collection of MG reports to download and handout to the MG CLUELESS community, if you ever have the risk of a possible MG crisis. One of their papers is called and can be found at http://www.myaware.org/anaesthetic-and-myasthenia Also they have handouts ONLINE to download and hand out to 911/ambulance crews, emergency rooms, anesthesia providers, and police. This is very important to have with your medical papers, when you are going to your appointments and any errands, … especially when your MG mouth, speech slurring, droopy eyes, weak legs, and vision problems make every one automatically assume that you are drunk … but without the liquor smell.

 

It took me EIGHT MONTHS to be diagnosed, but I am currently in MG REMISSION, using Mycophenolate Mofetil (Cellcept) and Pyridostigmine (Mestinon), as well as 8 other MEDICATIONS, (5000 MGs plus daily) including four blood meds, but not any more of that dangerous steroid Prednisone.

Due <font color=”rgba(0, 0, 0, 0)” face=”inherit”>to the Phoenix area being filled with clueless doctors, as well as also two hospitals, being staffed by similar physicians (including three “neurologists ??” that I can name), I remained undiagnosed for EIGHT LONG SUFFERING MONTHS .. until I was finally diagnosed by a very intelligent third floor nurse. But we had to communicate by pen and paper only. The first hospital could not diagnose me with MG, and they were not happy that all their tests clearly proved that I did not have a STROKE. Instead, due to an overdose of SEDATIVES for MRI testing, I got a CODE RED … and died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE, due to an overdose of SEDATIVES, given to an </font>undiagnosed<font color=”rgba(0, 0, 0, 0)” face=”inherit”> patient. So that first hospital gave me three pneumonias, three antibiotics (one of which was a dangerous </font>MYCIN<font color=”rgba(0, 0, 0, 0)” face=”inherit”> drug), a collapsed right lung, a slit throat (TRACH), a PEG tube, a Foley Cath, and sent me to a second hospital … so I had 100% SPEECH and HEARING LOSS. Hence, the diagnosing nurse and I communicated by pen and paper pad … or in the therapy room … a dry erase board tablet and dry magic markers. The next day she printed out and gave me the news of MY DISEASE … </font>

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>WWW.UPTODATE.COM/contents/myasthenia-gravis-the-basics … which told me what I had, the symptoms, the tests, and the treatments. That is the “patient” version. At another of my five 2020 hospitals, they had a MED LIBRARY and felt sorry enough for my condition and “need to know” … that they printed out the physician and medical VERSIONS, as well as a new CLEAN COPY PATIENT VERSION for MG … of what the diagnosing nurse gave me. I was so absolutely HAPPY to finally DIAGNOSED … after eight months of SUFFERING … that I started right away HIGHLIGHTING my symptoms with dry erase markers (used in therapy to talk with a “WHITE BOARD”) and writing “ME TOO” all over … all four pages. Those “pages” that I got from the diagnosing nurse … turned into one very colorful mess of pages … between all the colored markers and my MG weak, toasted fingers trying to use a pen, with both hands together to try to write in the margins. </font>

She recognized my various symptoms, BELIEVED ME, and explained to her supervisors that I needed a NEURO-CONSULT (she got me two … March 20th and 24th, 2020) and AChR Antibodies tests. I ended up getting SIX TESTS … all VERY SERO-POSITIVE. Three were BINDING, two were BLOCKING, and only ONE MODULATING. Then, they brought over a NEUROLOGIST from BARROWS NEUROLOGICAL INSTITUTE next door … and she got me through all the NEW MEDS and the five days of IVIG treatments, on top of the meds, that I was already taking, for the illnesses that the doctors thought I had … but never had.

myastheniagravisnews.com

Hearing Tests Can Help Diagnose, Monitor MG, Study Suggests

The inner ear function in myasthenia gravis (MG) patients is significantly impaired, and hearing tests can serve as a diagnostic and monitoring tool.

[Jonathan A]

I continue to have INSOMNIA issues, since my first MG symptoms appeared on July 25, 2019. I was not diagnosed with MG till eight months later on March 24, 2020. I spent five months in five hospitals in 2020. Then for 2021, I had to switch to a new PCP. After a lot of begging for a referral, I finally got a phone call from INFINITY SLEEP SOLUTIONS in Tempe AZ. They scheduled me for one test in May and later they wanted me to return for a second overnight test in June.

My PCP thought that he had ordered an “in Home Test” … but both were in a test lab overnite. Neither my PCP nor INFINITY would ever give me those two test reports or even discuss the sleep study results. So I finally replaced that PCP and got a more responsible ADULT PCP, and she has much better doctor/patient skills .. so she got me a referral to a BANNER SLEEP SOLUTIONS doctor, who I specifically ask for … as the new referral is a NEUROLOGIST and also the SLEEP STUDY doctor. That way … if she is another poorly educated “neurologist ?” … then at least she knows who to ask around … to find out what MYASTHENIA GRAVIS is (unlike the three “neurologists??” at my first hospital). Also I was told about ALL STRIPES and PICNIC HEALTH RARE DISEASE FOUNDATIONS … and they have recovered for me over 1600 medical documents, including my two 2021 SLEEP LAB REPORTS, my old PCP’s referral request, and a separate report from the first hospital that talked of N1 and N2 and spindles ??

So now I am ready to have the new referral explain my original SLEEP STUDIES and schedule new ones if needed, once my slow healing left leg wound recovers and my right side “shingles” continues to improve … so I can at least try to sleep on my side again.

The two reports said that in May I had only 11 minutes of REM sleep (8pm till told to leave at 5am) and in June .. the report says I had 0 minutes of REM sleep ( I was told not to appear before 9pm, they were late starting as I was told to switch rooms … so probably 10pm start) … but they pushed me out at 3 am so NO REM SLEEP at all.

So I am looking for answers to INSOMNIA. I am very lucky if get four hours of sleep. I always sleep on my side and play by all the “how to get some sleep rules”. The five hospitals had me all wired and hosed up and my throat TRACHED with a hose coming out my neck … so it was about impossible to sleep at all especially with open window curtains and open room doors with shiny hallway lights out there. The hospital papers also listed that they gave me morphine, fentanyl, and MELATONIN to sleep and not try to turn on my side to sleep/have hoses & IV’s come loose.

MELATONIN is very dangerous to MG patients, as the Mayo websites say that the MED is very bad for MG patients like us, who are on IMMUNOSUPPRESSIVE THERAPY, as it “undoes” all that our meds are doing to keep us stable.

My parents were born in Marquette Michigan and then moved from Minneapolis to Tempe Az. Dad’s mother Anna Splies was from WISCONSIN RAPIDS, like her sister ESTHER … who was a milliner in downtown Milwaukee. They say that MG is not contagious or hereditary, BUT there seems to be that MG has a BAD GENE, so that several family members can have similar neuro or muscular diseases. Anna died at a young age of LUPUS. Dad died of MYASTHENIA GRAVIS at home (acute respiratory failure), I have MG (and died at the hospital of ACUTE HYPERCAPNIC RESPIRATORY failure but was resuscitated at 8:37pm on 2-5-2020), and my brother Greg, daughter, and grandkid all have EDS – Ehlers Danlos Syndrome. So all it takes is one bad gene to cascade to other relatives possibly. So hopefully … you too will have success with your new neurologist. It is so hard to know what meds help you, what meds hurt you, and what meds affect adversely the other 5000 MGs of meds, that you must take daily to stay stable and get some much needed SLEEP.

[Phyllis]

Hello to all,

I struggle with insomnia too. I’ve tried all the things: keep room dark, no electronics before bed, keeping on my schedule, no food before bed, etc. I have a rx for tempazapam, but I don’t want to be dependent on benzos. I’ve been taking 1/2 of a Sunmed Beyond CBD gummy. It not only helps me sleep, but has improved my anxiety throughout the day. Please note, I do not have breathing issues with my MG. This may not be for everyone, but it works for me. There’s nothing worse than not being able to sleep. I hope you all find & share something that works for you.

[Bill V]

If your breathing is fragile then it can be risky to use a lot of the sleep agents. However, sleep is critical to overall health and ought to be addressed. I only have a mild case of ocular MG so what applies to me may not be right for you. I use medical marijuana ( 1/2 CBD and 1/2 THC solution–oil) and it works for me very well. If you have a medical marijuana office near you, I’d connect with them and start with just CBD oil ( it might work on it’s own) and, depending on your response, then gradually build in a percntage of THC over the course of weeks. Also, using cognitive behavioral treatment and self-hypnotic techniques may be helpful as well.

[BAMO]

I have constant Insomnia issues and take two Tylenol PM each night. I sometimes add an extra Advil if too restless.