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stacdliw

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Everything posted by stacdliw

  1. It takes me at least 3-4 hours after waking to get any kind of energy. I really don't feel energized until after supper. I just got diagnosed at Vandy last month and my husband told the neurologist the same thing. The doctors offered no explanation why I feel so much worse in the morning than later in the day. Because of the tachycardia, the neurologist advised me avoid all caffeine, which I was addicted to because I feel so tired all the time. I've tried the decaffeinated coffee in the morning, but it's not giving me the boost of energy I need. Now, that I see others consuming caffeine, I think I will add my caffeinated coffee back in the morning. Without it, I'm a zombie!
  2. I'm so happy that you found a doctor who was thorough and understanding-- a hard combination to find. Cymbalta has been my lifesaver for my fibromyalgia. I take 2 60 mg tablets daily. 1tablet daily was not effective at all, but when I went to twice daily, the difference was night and day. I hardly ever have to take Tramadol for pain any more! I hope it helps you like it has helped me! Good Luck!
  3. Thanks for all of the replies. I just was diagnosed with POTS two weeks ago, so all of this is new to me. I'm scheduled for QSART testing next week. Prior to be prescribed salt pills 3x daily by the neurologist, I had never experienced those type of headaches. I do own a blood pressure monitor, so I will take my BP the next time I have one of those episodes.
  4. I've had a bad couple of days where I get extremely out of breath with minor walking. I can tell my HR is becoming tachy, but something that I haven't noticed before is that my head feels like it's going to explode. The most pressure is at the base of my skull and at my temples. If I rest and my HR goes down, the head gets better. Does anyone else experience this symptom?
  5. Thanks for the replies. I was worried that I could put on 10+ pounds.! Bev
  6. I just returned from Vandy and, to my surprise, I was diagnosed with POTS. When I was diagnosed with Autonomic Neuropathy last year, I experienced extreme shortness of breath with exercise, but my heart rate remained at resting rate. Now, just 16 months later, my heart rate increased almost 40 bpm when standing. My neurologist, as an initial treatment plan, has prescribed 1 salt tablet 3x daily while awaiting further test results. I have just lost 15 pounds (much needed pounds) from a 3-month of gastroparesis, and I was wondering how much of a weight gain I should expect from the increase of sodium. Of course, any weight gain would be worth it if I could walk again without feeling like I'm going to pass out! Thanks! Bev Ray
  7. I don't have POTS, but I have severe exercise intolerance and become extremely out of breath whenever I bathe. Bathing and washing my hair can really really get me out breath, so I try to delay washing my hair as long as I can, about 5 days. I've tried taking showers, but I guess the warm water, plus the movement of washing the body is too much activity because I almost passed out in the shower once, so I only take baths now. I try to take a bath every other day, but I hate to admit it, if I'm nauseous with my gastroparesis too, I might just get a quick wash off in the sink!
  8. I actually received my AN diagnosis as a result of my GP sending me to a neurologist for AN testing due to an obstipated constipation episode I had last year. He ordered the testing when I had no bowel movement after a week of Miralax, prune juice, and two Fleet enemas, he ordered a colonoscopy. However, believe it or not, the colonoscopy prep didn't even produce a bowel movement! Flash forward a year later and just two weeks ago I experience the same situation. A week of Miralax and prune juice produce little stool. On some days, I experienced severe labor-type pains that lasted at least 1-minute in duration and occurred 4 minutes apart for at least 6+ hours. As the previous poster said, some loose bowel movement was passed around the impacted stools. My GP suggested an enema. It took not 1, not 2, but 3 enemas before all the fecal matter was finally moved out of my body. Both of those obstipated constipation episodes were one of the most painful, most exhausting experiences I've endured without pain medication. Sure hope I don't have to experience it ever again!
  9. I typically sleep nine to ten hours a day and still wake up exhausted. I have been known to sleep as much as 15 hours! I forced myself out of bed today after 11 hours of sleep and have felt exhausted all day. Odd thing is that I always feel worse in the morning (if I'm up that early) and afternoon and I feel better later at night. AN hase affected me the worse by exercise intolerance-- I can't walk very far without getting totally out of breath( both my heart and lungs are functioning appropriately). Today, I can't walk down the hall of my house without getting winded. I have directly correlated how tired I feel with the severity of the exercise intolerance. Needless to say, I've been a couch potato today!
  10. I am new here and everything you all have been experiencing is exactly what I have been feeling! I don't have POTS, but I do have AN with severe handicapping shortness of breath with minor exercise, even walking, and moderate gastroparesis. I've been on disability for 5 years and have lost most of my friends. I, too, have a good attitude 98% of the time, but after a long-extended period of illness, I become extremely depressed. No one, not my family, sometimes, not even my doctors, and surely not my friends, understand the pain and ongoing feeling of sickness and fatigue that I feel on a daily basis. I think what bothers me the most is the feeling is that I have lost much of my intelligence. When I was well, I was respected in my field, gave in-service sessions to my peers, and published materials in my field. Today, when I'm sick, I often experience specific word-finding difficulty or I can't complete a thought. Trying to complete anything beyond simple math skills becomes to complicated. And the worse: I find that my 20-something children are mothering me instead of me being the parent. Sometimes I feel so useless. I am Though I realize my tears won't change anything, I have found the tears to be cathartic. I need to cry to get all the negative feelings out of my mind and to realize that my situation could be much, much worse! So, after 5 years, I made a New Years Resolution to become more social, regardless how ill I feel. So far, I've forced myself to two social events when I haven't felt the greatest. In both instances, I'm glad I went, though it was difficult getting ready and even more difficult forcing myself to talk and smile even though I didn't have the energy to do either. I'm determined to have a better quality of life and this is at least one way I can make a difference.
  11. Yes, I am a member of the Yahoo Gastroparesis Support Group. Thought I would join this group too since I've having such difficulty adjusting to this shortness of breath symptom. I need all of the support I can get!! Thanks for all of your support!
  12. I was diagnosed with AN in February 2009 after suffering 14 years with Chronic Fatigue Syndrome and five years with moderate gastroparesis. My GP sent me for AN testing when I developed obstipated constipation and a colon prep did not produce a bowel movement. Shortly after my diagonsis, I developed severe shortness of breath and went through a battery of heart and lung tests which, luckily, were all normal. The cardiologist referred me to the electrophysiologist who said that my AN was causing exercise intolerance in which my heartrate, regardless of the level of exercise, was remaining at the level of rest. Unfortunately, he told me there was nothing he could do to medically manage this problem. Though I do experience mild orthostatic intolerance, he did not feel that I should undergo a Tilt Table Test, though he felt in 2-3 years I would develop POTS. By June 2009, the exercise intolerance had increased in severity to the point where on some days I could no longer walk through stores, do chores around the house, or climb stairs. I have gotten so out breath that I've almost passed out 3 times. By October, I qualified for a handicapped parking sticker and I was riding the motorized scooters in stores. The severity of my breathlessness can vary from one day to another and even within the day. Between the fatigue, nausea, fibromyalgia, migraines, and the breathlessness, I rarely have a day that I feel half-way decent. I've been on disability for the past 5 years because my severe GERD has caused my voice to be extremely hoarse and as a speech pathologist, whose specialty was voice disorders, my job became impossible. Somehow, through all of this, I have maintained a relatively good outlook of life. I realize that this disorder is life altering, but at least, it's not life-threatening. I've been lurking on this board for a while and I've noticed that most members tend to have POTS as their most disabling symptom. I was wondering if anyone else experiences the severe shortness of breath that I do. I feel so isolated. Nobody, my doctors or my family/friends, seems to understand what I'm going through. Heck, I don't understand it myself. The chronic fatigue syndrome and gastroparesis changed my life, but. now when I'm well, this shortness of breath has isolated me even more. Any suggestions?
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