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Vickie5297's Achievements


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  1. Yes, I take 15 mg extended release Adderall. Some days I won’t take it so that I can get a break from the anxiety that crops up at night on an almost daily basis. On those days, my BP is usually in the low 80’s over high 60’s or 70’s. I don’t have any energy on those days and usually just do as little as possible. Have any of you had the Ansar test? Mine shows that I have sympathetic withdrawal. I have no desire to do anything when I don’t take Adderall. I have taken midodrine, florincef, mestinon, Northera. Nothing helped keep my BP up except adderall. My BP is usually normal at bedtime when I don’t really need it to be. Even if I take adderall and my BP is up, if I do anything physical such as mopping the floor my heart rate goes to 135 to 140. Lying down it is low sixties. Before the onset of Dysautonomia it was always about 68 every time I had a dr visit. And BP was always 110 to 118 over low sixties. When I was first diagnosed and in the hospital it was 80/40 and Dr didn’t even suggest there was a problem and released me after arterialgram and some lung function showed no abnormalities. You would think that the BP would have given someone a clue???? This has been a long journey for me and I still have a very low quality of life compared to my previous life. Is there hope for a return to Health? Or just acceptance of how my life is now? Thanks
  2. I will have to tell you it’s an uphill battle to get answers when all the blood test, etc...come back normal. I was diagnosed with Fibromyalgia over 20yrs ago, but it took years with several Drs to get one that believed me. I was told that it’s stressful to take care of a family and work. It was much more than stress. Back when It started with me, no one knew that it had anything to do with the autonomic system. Now they do. Look up Fibromyalgia and the autonomic nervous system. It’s amazing what you can find. I can’t diagnose anything. MSA usually starts in late fifties or early sixties. Keep your spirits up! I had a pretty long stretch of a good life, with work and family after I was diagnosed with Fibro. I was diagnosed with Rheumatoid Arthritis at 54 and then had Dysautonomia diagnosed at 57. I feel your pain.
  3. I thought the same thing when all this started with me. I’ve had CAT scans PET scans all kinds of test. I did have hypotension but no increase in heart rate on the Tilt Table Test. I fit every description for MSA and I was scared to death. As far as I know I don’t have MSA but believe me I was really worried about it. I also have the burning on my limbs and also on my face. They did say I had Dysautonomia. Fibromyalgia has a lot of the same symptoms as you have described. The stress you are incurring from the fear of having MSA could cause some issues. Keep trying to find answers for your piece of mind.
  4. I still don’t have Social Security Disability. I had short term disability and long term disability insurance through my company. They didn’t give me any trouble. SSD is another story. I’ve been waiting 18 months for a judge to hear the case, but I got a call that they may take another look at it without a judge.
  5. My chest has been heavy ever since I had the first episode of the blood pressure dropping. It didn’t slowly happen for me. I was in my office and my chest started feeling heavy, I couldn’t read my computer, I could barely speak. It didn’t feel like a lack of oxygen but like an elephant was setting on my chest. I had an angiogram and other test immediately that showed no problems. I finally got into see a neurologist who was absolutely worthless. Didn’t know a thing about autonomic dysfunction. I had been looking at the internet for answers between the cardiology test and visiting the neurologist and somehow came up with asking the neurologist myself if she could order a tilt table test. She did and it showed I had Dysautonomia. I had no compensatory heart rate increase, no sympathic skin response. This was three years ago and I have been on disability ever since I left my office. Some days the heavyness is not as bad. I take adderall. That is the only thing that keeps my blood pressure up, but I have terrible anxiety at the end of the day. I don’t know if it’s from the crash from adderall or it just makes me anxious. This is my first time on the site and I am trying to find people with answers for me. I’m 61 and not tipical POTS age. I also have RA so the docs think it maybe from autoimmune disease. But NO ONE can tell me why! I’m so glad I found this site.
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