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CommunityMember492

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"Today I am sitting in my recliner for the past 3 hours just like I begin most days. I wake up with the intention of doing so many things but that notion is gone by the time I reach the top of my stairs after feeding my pets. My new 'sleep doctor' says I have hypersomnia. He prescribed a C-pap which I use and it feels really good. He said after I have begun getting 7-8 hours sleep while using it that I will be able to get totally off my meds but HE'S the one dreaming now! Besides the meds--Nuvigil and Adderall--don't really help. I can take them, sit down with a cup of coffee and be ready for a nap within 15 minutes. They say 'you just need need to get up and move around'. How do you do that when you don't have the energy or desire to do that? Does anyone else also feel like they have a constant movie or dialogue going on in your head? While talking to someone I see a constant movie of what they say going on. It seems too that my thoughts are out of control--I think negative thoughts when I"d rather think positive. My church would say it's Satan. The only time I feel my brain is at rest is while I am having an MRI and my brain is being bombarded with loud sound. My husband of 49 years died a year and a half ago. I'm stuck now with trying to do the physical, financial, etc., things involved in owning a home. But why change from a comfortable home that is paid for to a different location? I'm 75 years old and have a history of longevity in my family so that would be a lot of years and a lot of expense to transition to assisted living. Although I have a muscle disease (Myotonic Dystrophy) I am in reasonably good health. By the way one of the symptoms of my disease is apathy along with the depression I've battled for my lifetime. A psychologist told me I know all the right tools for what I have. A neurologist has told me there is no treatment yet for my muscle disease, they can only treat the pain associated with it. Ok, so am I just 'screwed' or what??"

  1. thank you for your compassionate reply. Yes unfortunately I've been re-evaluated for both conditions quite recently. Miss my previous 'sleep doctor'. I had been seeing her since my official diagnosis. She too was very compassionate and I considered her not only my doctor but a friend. Maybe we who have auto-immune conditions need to hang signs around our necks that say 'I may look healthy but I'm not.' This is a wonderful place to share and learn. Thank you too for being aware of the hypersomnia and apathy that can be associated with Myotonic Dystrophy.

  2. Hi . I am so very sorry about the loss of your husband. My heart goes out to you. Have you ever considered getting second opinions for both conditions? If your issues with sleepa are tied to some psychiatric issues, you might benefit from seeing a neuro-psychiatrist. They can be hard to find, but it might be worth traveling for an appointment. From what I have read, excessive daytime sleepiness is a common symptom of Myotonic Dystrophy. This article from Cleveland Clinic says methylphenidate (Brand names: Concerta, Metadate ER, Methylin, RELEXXII, Ritalin SR) is commonly prescribed for it: https://my.clevelandclinic.org/health/diseases/24516-myotonic-dystrophy-dm. Is that something you have tried? Though Myotonic Dystrophy, you can see from that article that there are treatments that can improve your quality of life. I hope your progression is slow and that it never becomes debilitating for you. Please know we are here for you whenever you need us. - Lori (Team Member)