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About cyndi75rose

  • Birthday 10/27/1975

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    Racine, Wi

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  1. I am a few weeks shy of 38. I got diagnosed at age 36 and have had symptoms since I was 15 or 16 years old and had a bad case of MONO.
  2. I completely understand where you are coming from. Panic was my constant. I have had many different drugs but the one that works for me the best is Prozac. I do not take it for depression but for anxiety. I didn't realize how much it helps me until I stopped taking Prozac a year or so ago and got on Cymbalta that is supposed to help with Nerve pain. It helped with the nerve pain but the panic came back full force to the point that everything I did, anywhere I went, I was constantly having crazy thought of things that was going to happen to me, friends, my kids. It was awful. I switched back to Prozac and will never stop. Good luck I hope you find something that works for you.
  3. Oh this post is exactly where I am right now. I just got prescribed florinef and Amitriptyline. Actually I got prescribed them on Monday. And I am scared to death to take them. I have so many reactions to medicines that I just don't want to have one make me pass out. I will do anything to avoid that situation. My doctor gets very upset with me cause I will not do what they want me to do. I am scared to take anything that messes with my heart. I am just a horrible patient when it comes to that stuff. I am going to try them though. This weekend. When I don't have to work and if I get sick I can be at home to deal with it.
  4. I drink bacardi and diet. I am not an alcoholic and I don’t get drunk often but almost every night I drink a drink or two... I do it because for some strange reason, alcohol is one of the things that doesn’t mess with my dysautonomia. It helps! It calms me, Helps with the constant anxiety, I helps with the pain. I helps to lessen the skin crawling feeling I get every night. It helps me to sleep because normally I can’t sleep. I wake up with Night sweats, and palpitations, and insomnia, and the alcohol helps. I am not promoting alcohol but it helps me feel better.
  5. Omg. I get this all the time. Drives me nuts. Like big crocodile yawns. Like I can't control, one right after the other. I get it a couple times a a day and I guess I never thought it could be related to they dysautonomia. Hmm? Good question.
  6. I take 40 mg and I love it but not so much for my dysautonomia. It helps tremendously with my anxiety.
  7. I have this all the time. I wake up feeling numb from sleep. I feel numb when I stand. My legs and arms and especially my fingers. It also happens when I try to go for a walk or work out. I will get numb. I am really use to it but yes its quite wierd.
  8. I see Dr. Marquez (neurologist) specializes in autonomic disorders at Froedert for my issues. I have only seen him once but I was really happy with him. At that point I was happy with anyone that believed me (lol) and wanted to help. Anyways he is an option to consider. He is a true believer in exercise to help issues.
  9. Thanks Everyone. Sounds like it is a lot more common then I realized. I know my nerve are not compressed. I walk around all the time day and night with my feet and hands going numb. Definately worse at night. When this happened I was on my back. With my arms out straight. Not laying on them so I don't know. But it was scary.
  10. So last night I woke up in the middle of the night and moved to my side and brought my right hand up to scratch my face and it was almost dangling from the wrist. Like I had absolutely no control of it what so ever. It was completely asleep but even worse than that like I could not move it. It took me a minute to even realize what was happening and it kind of really freaked me out. Probably took a good few minutes for it to wake up but during that time it was completely useless like it wasn't even my hand. I have always had numbness, tingling in feet and in my hands but this was different. They have always been able to function. Does anyone else have this issue? it was really kind of scary. Not sure it I should be going to doctor for something else instead of thinking its just another one of the million symptoms happening to me daily with this illness.
  11. All the time!! When it happens its awful. I get that and the feeling of something bad is going to happen. Like anxiety but its not.anxiety. I don't know, but I totally understand what your feeling.
  12. Definately agree with the heat, even when its not technically hot, everyone else looks at me like I am crazy and I am literally melting and feel awful. It's ridiculous, Others symptoms that are bad; Fatigue, Hand and feet going numb, blurred vision. Anxiety can be pretty bad too.
  13. Yes omg how ridiculous of me. I totally meant that. lol Thanks.
  14. Sounds kind of bad to use a drug to stop the side affects of a drug but I have the same issue with my cymbalta, I wake up frequently all night and never get good sleep. I started taking a xanax to help me sleep. I take them more as needed but when I am having a bad night I get up take one and usually I am out til morning. I don't want to get off the cymbalta cause it helps me a lot with my nerve pain. Its hard to figure out which is worse.
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