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DYSarray

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About DYSarray

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  • Gender
    Female
  • Location
    washington state
  1. I go through the same thing with the sleep. I can wake up in the morning and within 3 or 4 hours I HAVE to sleep again whether I want to or not. I also am FREEZING cold when this happens. After waking up for the second time in the day in another couple hours and I will sleep another 5 or 6 hours, wake up for a couple and then back to sleep again. It doesn't impact my being able to sleep at night though. I can go a couple weeks sometimes without the excessive sleeping and then wham it is back again. I haven't found anything that makes it worse or better.
  2. Hi. I am on medicare and I have Regence BC/BS med advantage plan with prescription coverage. I talked to an agent who helped me pick the plan that fit my needs and so far I have had no problems whatsoever with the coverage. I am mid forties and I also live in Washington state and see out of state doctors (Oregon). If you have any other questions just let me know. Thanks, Lori
  3. Erika, I know it is scary and I don't know if this helps or not but I have issues like this and sometimes it is worse than others. I have a power chair for when it is bad. When I told my neuro that I didn't understand how the dysautonomia could affect my ability to move he explained it to me. I wish my brain wasn't foggy right now I so I could repeat what he told me but I am kind of dumb right now. My neuro is a neuromuscular disease specialist by the way. I guess what I am trying to say is there are ways in which dysautonomia can interfere with skeletal muscle movements and when this happens
  4. My bracelet says Autonomic Neuropathy on it. The doctors know what the autonomic system is and they know what neuropathy is so even if they don't know what Dysautonomia is they will at least go do some quick research. In my case what happens is that when they have seen the term autonomic neuropathy they end up calling in an internal medicine doctor or another specialist to deal with me and that doctor has usually prepared themselves for anything. That is, of course, if they have bothered to pay attention to the bracelet. The last time I was in the Emergency Room I was taken by ambulance becau
  5. dakota....thanks, it felt like a fitting name at the time (still does....LOL) They make some kind of thing that you drive up onto for a power chair and the thing attaches to the back of your car and you can pull a cover of some sort over it. I didn't do this however because I drive (used to drive anyway) a Hyundai Sante Fe and if I fold the back of the seat forward with a flip of a lever, it goes up these ramps I have and into the back of my Sante Fe so that it doesn't get wet and isn't hanging off the back of the car.
  6. Hi. I don't have a regular wheelchair because I can't push it myself but I have a powerchair. When I went to the medical supply place to get one they told me they had a person who comes out to my house and talks to me to determine exactly what types of options would be helpful and also measured me for the chair. He was great. We ordered one that has the reclining feature and the legs raise up too. There is a special seat for me because sitting is painful otherwise. There is also a lumbar support made to my measurements. He really did a nice job helping me get set up with what works for me. He
  7. My neurologist is the only doctor that keeps me relatively functional. He his highly skilled in managing not only my OH/OI issues but also addresses all other symptoms caused by my dysautonomia and if it is something that can be better handled by a different specialist he sets me up with the doc that will best suit my needs. In my case, my dysautonomia is progressive and the neuro works extremely hard to give me the best quality of life possible. I struggled for a very long time with a lot of different types of doctors who really didn't understand what to do with a patient with an autonomic pr
  8. I am from Washington state and my doctors are at OHSU. They are very good. I was able to have a QSART test there. I don't think there are any other places close to us that do the QSART in order to diagnose dysautonomia. I was diagnosed two years ago. My doctors there work as a team to address all my needs. Each doctor has full and complete access to everything that each other doctor is doing. It is very efficient and effective. The doctors I have treat me wonderfully and never make me feel bad about myself or the disease. They all took me seriously from the start and are available whenever I n
  9. My experience has been this: Horrible over stimulation of GI. Then syncope during bathroom issues. Fun. Sometimes I am on the bathroom floor for days at a time. What helps me (regarding the benzos) is that I take 5 mg valium but I take it at night before I go to bed. I can do this because when I lay down my BP will raise too high even if I sleep with my upper body raised slightly. Now when I take the valium then the next day the GI stuff is much slower and less violent and the BP doesn't raise (that I know of) when I am sleeping. I take Flourinef 2X a day for the syncope due to BP drops, Gab
  10. Jan, that is an excellent idea! I like that. I have a spray bottle that sprays a wide spray so that I wouldn't have to have perfect aim (I don't see very well). I am going to give that a try tomorrow. Thanks!! Lori
  11. Thanks Julie, Good idea on the unscented products, I hadn't thought of that. It was sooooo tempting to go outside today. It is about 70 and the sun is shining, which doesn't happen all that often in the Pacific Northwest. I am so cold all the time it sounded so good to sit in the sun for a minute to warm up. If it is too hot I can't go outside so I wanted to take advantage of the temperature and the sun but in the end it kind of wasn't worth it. Each day I learn a little more about how to cope with this stuff. I just have a hard time anticipating things sometimes. Thanks again, Lori
  12. Gained a little insight today.... Bald-faced Hornets can fly faster than a power wheelchair on its highest speed.....Ouch.....LOL Although the power chair can make quick maneuvers, my vertigo doesn't deal with it well and leads to a whole new set of problems....... Everyday for the last two years has been a wonderful learning experience...NOT. Good thing I learned to have a sense of humor a long time ago. But I am really not finding the carniverous flying insects that amusing right now. Any bee, wasp, hornet, or other flying insect repellent tips? Apparently I can't outrun them. Thanks.
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