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Everything posted by cyndi75rose

  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.
  15. My doctor is Dr. Marquez. The testing there is wonderful and I really am pleased with my care. They do listen and try to help.
  16. I just have a question. I have been experiencing a lot of nerve pain in the head and neck and the doctor has prescribed my cymbalta. I am willing to try it but it is a name brand drug and rather pricey so I do not want to try it if it is not going to work. Has anyone been proscribed or tried this and what is your opinion on it?
  17. I have vision issues no matter what I am doing. It differs throughout the day from having nothing, to a spot in my vision, to blurred vision. When I am extremely symptamatic, I get the bottom half of my vision is completely blurred. I wish I had words or advise for it but I have yet to learn how to fix it. stay positive.
  18. Hi Mandy, Wecome to the forum. I just wanted to share that the hand tingling is very common for me. Some times I get it in just my fingers, sometimes my whole hand, sometimes up my arm. Can be on boths sides too. I also experience it in my feet at times. Nothing ever comes of it and it can last a long time and then go away. I don't know if it is a common symptom but I have it happen a lot. Cyndi
  19. Good Question. I have also had the 48 hour monitor done and was just asked if I was working out a lot. I am like no not at all. They said my heart rate would spike a lot but it was in the normal range. Now that you wrote this post, I would like to get a copy of it to see when and why my heart was doing what it was doing. Let us know if you get any where with it.
  20. Rich, I have had many issues my whole life with pneumonia. I have had asthma and breathing issues as long as I can remember so almost when ever I get a cold it will go into my lungs and I end up on antiobiotics and steroids. I am also allergic to penicillian and they always give me the Zpack. I have never had any problems taking the zpack or with it making symptoms flare up. Although when I am sick I tend to have more issues or maybe they just feel worse cause I am sick. As for the Strep test. They usually take a culture and then do something to it right away that will tell if you most likely have strep but if that is negative then then they send it away for further testing and that takes up to three days to tell for sure. I hope you start to feel better soon!
  21. I get this often. I feel extremely hungry and then my heart starts going nuts and I get hot, sweaty and feel like I am going to pass out. Its very scary. This usually happens when I am sitting at my desk at work. But I have had my blood sugar tested and its fine. I have learned it's just part of my autonomic dysfunction.
  22. I have been having huge issues with my husband since getting diagnosed. Well we have had some issues the whole marriage, but not this bad, but he is definately not a caretaker. I have had issues my whole life and we have been together for almost 14 years, so he has seen it, and lived it with me, but it has been getting worse in the last 3 years or so, I had my third child three years ago. I am having more and more issues. More fatigue, more episode, more problems. I never pass out and I am mostly fuctionable so I think he just thinks I am faking it or something. I don't know. He seems to discredit it. Almost like my dysautonomia does not exist. I just had the positive table tilt test in January more of less finally proving something is actually wrong with me and for me it was like finally, see I am not crazy, I actually have these issues. For him its like, no big deal. Like so what? If I say I am tired, its why?, or I am dizzy, he says "again?" Like how can this happen. My husband is a health nut and exercises all the time, runs marathons, and believes that everything can be solved or fixed just by exercising and fat people are just lazy. I have gained quite a bit of weight in the last three years. It ***** for him and it ***** for me too. I want to loose the weight. but its hard I think part of it is, I feel like crap all the time. Exercising is usually so hard if not impossible to do. He uses the attitude of I just need to try harder. I think he thinks if he gives credit to the fact that exercise is extremely hard then I will quit and continue to gain weight. Like use it as an excuse to not exercise. I don't know. I work full time and have three children 12, 10 & 3. I am extremely exhausted. I don't sleep well. Exercise HOW??? All I know is I feel like I can't talk to the one person that I should be able to talk to. I just sometimes needs some comfort or even acknowledgement that maybe it is harder for me. I just want him to realize that this is a huge chronic issue that I have and his help and support is needed. I don't want a pity party but something would be nice. I just feel really alone a lot and I don't want it to destroy this marriage, I love my life and I love him, but I am seriously getting more and more angry at his attitude and it is causing a lot of stress and arguments.
  23. Hi, I am very new to this site (this is my first post). I have not been diagnosed with anything besides a positive table tilt test (AWFUL) mostly because the neurologist that I went to had no idea what to do with me and referred me to Frader and I am currently awaiting my appointment there. I have had issues my entire life and have never known at all what is wrong with me. I remember the first time I got my period at like 12 almost passing out. The world got very fuzzy, I got extremely hot and it just started blacking out. Since that day i have had too many to count episodes like that. I get extremely hot , sweating intensely, then the world almost like closes in on me. It happens when I am Hot, when I am tired, when I am standing, when I am emotional, when I am in crowded loud places even when I am sitting upright.. If I lay down it will get better dramatically. I have had these episides upward of 25 year now. I have times in my life when it is better and I don't have any issues but it always comes back. I have a million other issues going on at anytime and have always thought I was loosing my mind because nobody (doctors and test) could ever tell me what is wrong. Every single test from brain scans, EKG's, MRI's, Neurolgical testing all comes back with you are fine. Well I don't feel fine. I am constantly dizzy and my world is constantly moving, the fatigue is unbelievable, pain in my chest and neck that is constant, palpitations, nausea, irratable bowel problems, asthma, Everything.The list goes on and one. It seems like every day is a new symptom. Its so frustrating. so I just started researching on my own. I would search day and night just trying to find something and I just happened to stumble across a website that mentioned POTS and I knew... Finally! I am not alone and most of all I am not crazy. I have no idea if it is POTS or somewhere else in the Dysautonomia area. All I know is I am finally in the right area. I have never been to the point that I can't function long term and for that I am extremely thankful. I have felt like since my third child was born three years ago my symptoms have been getting much worse and the fatigue is so intense that I can seem to shake it or work through it like I have always done. I work full time and have a husband and three young children and its hard to deal with it all. I am excited to go to the doctor at Frader that specilizes in this area and have someone believe that I am not crazy. I truly enjoy this Forum and having validation that this is really a real thing
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