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Grace50lee

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About Grace50lee

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  • Birthday 05/19/1950

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  1. I find the knee highs are hard and increase my sweating episodes more. I've been told to get the waist high also but I can't stand anything tight around my tummy with the GI issues and swelling? Is it absolutely essential to wear any compression stockings? Thanks so much.
  2. Hi my new friends, Insomnia is brutal because it seems to increase all my Dysautonomia, POTS, fibro, etc. issues. I get migraines with auras, often after a night's ups and downs. Also we have found it affects my heart rate and blood pressure, etc. my primary is working along with my neurologist and calls these disorders A MESS! So, I too have been on many sleep drugs, plans, etc. If any of you noticed, they cut the allowed dosage of Ambien in half. Regulation? It really doesn't do anything for me now. So she sent a script for the new insomnia drug Belsomra. However, when my husband went to pick it up, the pharmacy said they were waiting to see if my insurance would cover it? Otherwise it's about $300. a month . Has anyone tried this new drug? I have Medicare and a supplement but usually can only have generic drugs? I'm praying they make an exception. So many difficult things to deal with but no sleep magnifies everything. Life still goes on and I have responsibilities for three elderly relatives. No, I can't physically care for them, but decisions must be made. HELP? I'm in desperate need of sleep. Grace
  3. So sorry you are experiencing these 'newest' symptoms, Kellygirl (and others), This is my first time to post but I was dxed with Dysautonomia finally one year ago after years of doctors, tests and ?? I now think my 'thermostat' is broken. I have Raynauds which freezes my hands, feet and nose. But sometimes the rest of me will be dripping with sweat? I also have a constant runny nose and drainage down my throat. There seems no reasoning with it but I often notice the hot sweats after I eat...and yes, my GI system is affected. I have had urinary incontinence but not always. Just to be safe, I sleep in a Depends because for whatever reason, GI issues hit harder during the night and more often. I have gotten migraines for years but now almost daily I start with an aura. I'm a 65 yr old female and I understand each person has different patterns, meds and outcomes. Mine seems to be constant. No good days any longer. I do what I can when I can but its hard when not many understand this mysterious disease or its cause? I was blessed to find a neurologist (group) in my city who had training at Mayo for this. It's so good to finally find a place where I can read of others who are in similar situations. I would never wish this on any of you, but I will pray for you. Right now the neurologist says we treat one symptom as it comes. So many meds and I find I can't tolerate medication as well as I used to? According to him, this is also part of Dysautonomia Autonomic Neuropathy and POTS. He cannot give me a reason that I developed this but I was in a car accident in 1991, had a concussion and my neck is fused. I also have scoliosis in lower back? Feel sorry for each of you. It's not pity we need as much as understanding. Most people do not want to be sick.
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