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  • This topic has 15 replies, 13 voices, and was last updated 2 weeks ago by Troy.
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    • #16531
      Jonathan A
      Participant

      I have been in MG remission since diagnosed on 3-24-2020   … but it took 8 months to be diagnosed.  A floor nurse recognized my 9 or so symptoms from her other patients.  Even the hospital neurologists were clueless and did not recognize my many MG symptoms.

      I am on  Prednisone, Mestinon and Cellcept.  But the doctors killed the Prednisone after rehospitalization for month of November 2020 (my pill disabled immune system – 2000 mg per day – could not protect me from Septic Bursitis forearm) …… because Prednisone precipitated my getting Diabetes which I never had, weight gain, and insomnia.   I thought I could finally get asleep again ..after they killed the Prednisone  …. but it has not happened yet.  Now I am told that Cellcept also causes Insomnia   …   as well as my bicep MG muscle pain possibly also contributing to my nightly Insomnia.

      I sleep on my side and breathe through my nose….. and it takes 2 or 3 hours to fall asleep every night.  I have already had two clinic sleep studies  … but they turn on the lights and wake you up at 5 am  .. so they can go home.  So I was lucky to get three hours of sleep that night …  and later on second study  ….   two hours hours of sleep.  I have not gotten my sleep tests results back yet  … but it sounds like they want to do a third.  I think that they are also clueless   … and never had a MG sleep study patient either.

      Is Insomnia and MYASTHENIA GRAVIS close buddies? Do most of you have my problem of being unable to get asleep … as well as get back asleep later too?  I am still googling and listening to other MG patients and how they are doing.  One of your earlier emailed links says that Univ. of Cal-Irvine is asking the same questions in their new study.  Is it my MG disease, my 13 medications, or another illness that mis-diagnosing doctors are giving me other pills for?

    • #16537
      Tim Lindsey
      Participant

      Jonathan… Thanks for your post and info.

      I was diagnosed with generalized MG last September. Up to that point, I had used melatonin for sleep for years. After I read that melatonin might have an adverse effect on my symptoms, I asked my primary care doctor and pharmacist for an alternative. I was given trazodone 50 mg. I am also on pyrodistigmine and immune-suppression. The low dose of trazodone works great for me.

      I don’t know if it will help you, but it might be something to ask about.

      I hope you can solve the insomnia problem. Fatigue is a strong force against the challenge of living with MG.

       

      • #16581
        Jonathan A
        Participant

        I also read about adverse effects of medications.   I usually try to print out the article  … but I have so many papers now to go searching thru.   I started on Melatonin because somewhere I read that another drug I was taking may negate the release of my body’s Melatonin into my body in the evening before sleep.   So I was trying to take a Melatonin pill  to counteract that   … if it was true.    But as with most drugs  … they never say what is a safe versus an unsafe dosage.

        I also ready somewhere also that Melatonin might affect the effectiveness of other medications  … but I don’t remember if they affect blood pressure pills, or diabetes pills  … or in what dosage taken.  So it might be worth trying Trazodone  … as some time Melatonin works and other times not.  THANKS

      • #17724
        Sue
        Participant

        I also have sleep issues. I had 2 sleep studies. The second study I was hooked to the machine and they test different levels to see what works best. It has been going pretty good although I do still have sleep issues.  I think it’s the myasthenia. I am down to 5 mg Prednisone. I also take imuran and meeting.

         

      • #17762
        Kenneth Berg
        Participant

        I can tell you melatonin was bad with my G> I was a zombie the whole next day (Only took 1 night) Thanks for thee trazadone suggestion.

      • #17770
        CathyF
        Participant

        Many thanks for addressing the sleeping (or not being able to sleep) issue.

        My husband was diagnosed with mg in 2019 after 9 months of puzzlement. Just wanted to weigh in and agree with you.  Insomnia is a major problem.

      • #17779
        Sheila Troiano
        Participant

        Yes, it does seem that MG has included insomnia as a side effect. So cruel a part of the disease or side effect of medication. We are fatigued to the max at the end of the day and then have trouble sleeping. I have learned some tips that might help. Being a psych RN, I’ve had a lot of experience with medication. Trazodone will help you fall asleep, but you can get that ” sleeping pill sleep” falling asleep initially but then awakening 3-4 hrs after that. Morning hangover is common as well as nightmares, especially for those with PTSD, like those military persons who suffer MG.  Melatonin, the same thing. I find that taking my last mestinon at least 5 hrs or more before bed, I find it activating at night. I do take a full timespan early in the day which carries me through the later day, without the activation and decrease muscle cramps during the night. I use a sound machine, white noise when I do awaken at night. I use doxylamine, unison , and it has not seemed to have a negative affect on my MG. I always wake up 1-3 x a night, that’s usual. But by using the machine and the unison help. Some people with insomnia find essential oils or diffusers with calming scents. I hope this will help some of my MG community.

    • #16586
      Tim Lindsey
      Participant

      Jonathan… I understand the confusion with medications.  You have to do a lot of research (and sometimes trial & error) to get to the truth.

      Best of luck with your insomnia. Counting stars & sheep only help so much. Keep us posted about your progress.

    • #17756
      Ronald E. Clever
      Participant

      Wow this is right up my alley.  I sleep at most 4-5 hours a night and I commute 90 mins each way to work.  I am hoping to go out on disability with in the next 10 months but we shall see.  I also have sleep apnea and am morbidly obese weighing 425lbs.  I have had several sleep studies over the years but now with MG I just had a new one and they want me to come in for a second one.  I feel as if i am being forced out of my job since I have been reprimanded several times for falling asleep at work.  Luckily I am a Union member and they have managed to keep me in my job but I am afraid time is running out.  I use Melatonin sparingly since it makes me too tired in the morning and I only take 1/4 a pill of the 1mg dosage.  I know it is my meds & MG keeping me awake cause it has never been this bad.  I take 40mg of prednisone and 1500mg of CellCept per day along with blood pressure meds, depression meds, etc.  Half my meds keep me awake and then the other half try to put me asleep in the morning.  My pulmonologist is trying to get me to use the CPAP but with breathing issues from MG I don’t know if that will be possible.  This is all such a struggle.

      • #17759
        Tim Lindsey
        Participant

        Ronald…

        I have generalized MG, diagnosed only a year ago.  I have been using a CPAP for apnea for 12 years.  After MG hit me hard last year, my breathing was very much affected.  I still struggle with breathing through my nostrils  The only thing that allows me to get any sleep at night is the help of my full-mask CPAP.  I don’t even take a nap without it.  Good sleep requires good air flow – the CPAP will be adjusted to your need.

        My advice is to get tested and fitted for one as soon as possible.  It will not hurt you, and almost certainly will help.

        Best to you. Stay well & safe

        Tim L

         

         

         

         

         

         

    • #17758
      Jonathan A
      Participant

      This is Jonathan.  I am still awake now at 1:54 am ..and reading this  … as I tried twice to fall asleep and could not.  I find that going to bed early does not make falling asleep quicker  … and getting to bed at 2 am makes it only a little faster falling asleep  …. so I am up trying to get sleepy.

      I still taking Mestinon as well as 200o mg of Cellcept.  I was finally tapered off Prednisone  … after it and STATINS gave me medically induced DIABETES II and a big weight gain.   Also I take over 5500 mg of other pills daily.  Last month my newest doctor finally tapered me off 18 months of insulin shots  .. that the hospital doctors force me to take.    I sure hope that this Univ of California at Irvine study funded by MG Foundation Calif. gives us MG/Insomnia sufferers some answers.

      It takes forever to fall asleep.  Is it MG side effects  … such as muscle pain/weakness  …. or pill side effects… such as 200 mg of Cellcept ?  I keep turning from one side to another with sore shoulder/bicep soreness while I wait to fall asleep.  I have tried all the “DO NO DO’s”.  My only success has been  .. if I totally poop out by being out  … with doctor appointment, pill pickups, and errands …. without a chance to rest.  Then I arrive home … and say screw taking the  PM pills now.. screw dinner… I am laying down for a few minutes  … then I accidentally fall asleep for two hours.   Is it because MY AM PILLS WORE OFF ????  So I get up… eat my dinner and my  PM pills … and quickly try to get back in bed.  Then I can not get asleep again for at least two hours !! Why?? THE PILLS you just ate ???

      You are lucky to have a Union job …I had one as Fleet Service agent for a large airline.   For 8 months I kept getting sicker and weaker with ACUTE OCULAR and generalized MG.  No doctor could ever diagnose me  … finally a floor nurse at the second hospital diagnosed me  … she had seen MG patients and recognized my 8 or 9 symptoms.  I was lucky at the airline  … as I had sick days that I never touched  … and we could also pick up/drop shifts with co-workers up to 30 days ahead by computer website.   But my undiagnosed MG made my life SO UNKNOWN  .. that I had to retire early … as I was holding out for my 15th anniversary  …. but the union and the airline are still arguing over a new contract from preCOVID arrival….. So I had to retire 10-30-2019 from union work.

      I did two sleep studies but no results.  They never talked to you.  I sent in ahead of time  … their forms…my medications lists….. my MG disease history….. but they never talked.  They just hooked me up, sent me to bed (arrived at 8pm… they turned on lights at 5am and threw me out  .. got about 1 to 1.5 hours sleep.  Got home and never got asleep again)   and second time (arrived at 9 pm… they turned on the lights and threw me out at 3 am.  I got 30 minutes of sleep  … but because it was so early, I was too awake, got home, and fell asleep twice)

      I HAVE ONSET INSOMNIA.  They never asked or cared about … all the time I spent trying to get asleep in their bed  …. only ASLEEP counted on their meters.  The second attempt/nite was HORRID.  They kept trying to sufficate me  .. by covering my nose with all types of masks/hoses.  I have always slept on my side, breathing thru my nose, and talking thru my mouth.  With a mask there was not enough air to breathe in  .. or room to exhale air out. I never really fell asleep at all  .. unless I “put my finger upside of my nose like SANTA CLAUS” so my finger could break the mask seal… so I had fresh air to breath.  It was another case if ill-educated medical personnel  … who did not know anything about MYASTHENIA GRAVIS, knew anyone with the disease, or how to handle people who could not fall asleep to do their electrode tests.

      So I keep googling things and watching these websites to find answers and printing out information off websites … to educate doctors who have never seen a suffering MG person.

    • #17767
      Wayne Eisen
      Participant

      Jonathan A,

      2,000 mg of prednisone a day? Holy cow!!! 60 mg/day is a high dose. Prednisone can produce the problems it’s supposed to address. Testosterone can aromatize into estrogen.

      Good luck! Wayne

    • #17773
      janell
      Participant

      I have had MG for almost 5 years and I have taken Melatonin almost all of that time. It has not affected my meds at all. I would not worry for a minute about taking up to 10-15mgs. nightly. Both of my doctors tell me it is not going to interfere with any meds.
      Actually, I am not certain why a neurologist has not placed you on an ASV already. I sleep on a home ventilator every night and never wake up once I go to sleep.I never had a sleep test and a good neurologist should know that.
      Medicare approves two types for MG, an Astral or a Trilogy. They will not approve a Cpap for AM patients.
      You should ask your Neurologist. You do need a Blood Gas, which is just a blood draw but it does have to come from an artery which is just a tad more pain than a regular one.
      You should not suffer unnecessarily when a lot can be fixed. Hang in there.

    • #17901
      Alan Bridle
      Participant

      I resonate with most of what is being said in this thread! Chronic insomnia was the bane of my life for months after my MG symptoms became severe but before I was diagnosed.  I went over three months on only two or three hours of sleep a night.  Sleep deprivation was compounding all the difficulties I had with muscle tiredness from the MG.  Some of that was mental distress from not knowing what was wrong with me, then some was panic attacks after I began to experience severe orthopnea (I was a side sleeper in a flat bed).   I tried taking melatonin but it had no good effect on me.

      Soon after I was finally diagnosed with MG I went into full blown myasthenia crisis and ended up in an ICU on a ventilator for about two weeks.  In that hospital they gave me trazodone 100mg and seroquel   25mg as a sleep aid.  This has worked like a charm and I now get a full 7 or 8 hours of good sleep most nights at home.   I was also advised by my doctor to avoid melatonin as it does not interact well with MG.

      Insomnia is a vicious cycle, as the mental distress from lack of sleep and concern about my symptoms worsening compounded and recycled the problem.  Now that I can sleep again I am doing noticeably better every day in most ways.

      I hope the combination of sleep aids that has helped me to reach this happier state will help someone else here as well.

       

    • #17924
      ChrisM
      Participant

      My sleep was rubbish when on a high dose of prednisone (75mg) and for a long while during weaning.  I’m now off it but still on 1.25g x2 mycophenolate and sleep is better but still not like it was pre-myasthenia.  I’m scheduled for a sleep study in March.

    • #17938
      Michael Morris
      Participant

      I suggest looking into bipap. I’ve been using the machine for six weeks and my sleeping is much better. The mask is not invasive. Machine is quiet and I adjusted in three days. 

    • #17949
      Troy
      Participant

      Jonathan,

      I have a question about the statement you made about “Your bicep MG muscle pain”. Can you elaborate on this for me PLEASE??!

      I have been diagnosed for 8 years and went 2-3 before diagnosis. I am on prednisone and it is the only medication I have taken for MG. I take 10 mg a day.

      I have been suffering from aches and pains in my shoulders, biceps, legs, fingers, and I’m probably forgetting some. I thought it was rheumatoid arthritis, because most of our neurologists say MG Does Not Cause Pain!  It makes it hard to sleep, stay asleep, and miserable to wake up to.
      So when you said bicep MG pain I am curious as to what you mean and if you have been able to prove it’s from MG. A lot of us mention the aches and pains , but our doctors don’t seem to be able to figure it out. I will not do a sleep study, as I know it couldn’t be accurate in a setting other than my home & my schedule.
      I have loved to sleep my whole life,as much as 10-12 hrs/day when I was younger, but now it’s often something I just dream about(along with waking up w/o aches and pains & weakness).
      There are times when I wake up and it feels like I went through a workout session while I was sleeping or ran a marathon or something.
      I hope & pray the New Year will keep us all Safe, Healthy, Happy, & maybe give us some Answers!

      Troy

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