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nunibenuni

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Everything posted by nunibenuni

  1. Before I was diagnosed with POTS, I saw a nutritionist who suspected something with yeast. I went on a very strict diet for about a month. It did not really help me. I just wasn't allowed to eat any sugar in the month between Thanksgiving and Christmas.
  2. I just recently (like this past week) started having trouble focusing my eyes. It usually comes when I'm the most tired (about 2 in the afternoon). I also get it when I stand up to quickly. I will start to see spots. My vision clears from that fairly quickly, but I just get this weird feeling like my eyes are almost focused, but not totally. It's hard to explain. I am assuming that it is just my POTS.
  3. I was on Allergy shots and anti-histamines for four years. Towards the end of my time on allergy shots, I was able to go off some of my anti-histamines. About the reactions, I don't know if your doctor said this, but at my allergists office, you aren't supposed to take anti-histamines for the 24 hours before the shot. That is so they can see your body's full reaction to the shot. I also have one question. Are you on a beta-blocker? If you are you should discuss that with your doctor, because beta-blockers can make it very hard to treat a severe allergic reaction because they do the opposite of epinephrine. The main reason why I stopped shots was that I was diagnosed with POTS and put on a beta-blocker.
  4. I had a chronic cough for a couple of years and it was always worse in the cold. My allergist tried a bunch of inhalers but they didn't do much. I also used to be a figure skater and I remember that if I started skating to fast in the cold rink, it would be hard for me to breath and the cold air would hurt my throat and my chest. I never was able to do anything but wait for it to go away. I hope you find some relief.
  5. I still have POTS. I haven't noticed any change in symptoms since the surgery. ASDs can cause strokes and other yucky things later in life, which is why I had the repair. I'm hoping that it helps my fatigue a bit, but there isn't much more that should change.
  6. An ASD is an Atrial Septal Defect. It is a whole in the wall between the top two chambers of the heart.
  7. I've had a busy fall and haven't been on the forums much. I thought that I should update everyone. I am feeling better than I was last year and over the summer. I spent most of the fall busy with school and college apps. I saw a POTS doctor in Chicago in September and it is nice to have a doctor close by. The doctor diagnosed my brother with POTS as well. At the same appointment, my brother and I had echos. Both of us had ASDs!!! We got TEEs (trans esophageal echo) and our doctors decided that we should have them repaired. On December 19th, my brother and I both had our ASDs repaired. The same doctor one after another. It was a family affair! We had to spend the night in the hospital, but, luckily, we were placed in the same room. I had never spent a night in the hospital before (except when I was born). Hospitals are not made for sleeping! We were discharged the next day. The repair is amazing. I was walking the next day and even went to a concert at church the night I got home. The repair and Christmas tied up the beginning of my winter break. I tried to relax over break and finished my last college app. I also had a lot of homework to do. I had exams this past week. I think I did well on most of them. One good thing about being sick is that I feel amazing whenever I do well in school, despite not being there or not being able to concentrate.
  8. I took bentyl a couple years ago, before I was diagnosed with POTS. I took it because I was getting horrible stomach aches. It did help me. I took it three times a day as a preventative. I can't say if it made my POTS worse because I did not know about POTS then, but it did help my stomach. I don't remember it making me feel any worse.
  9. I've had the same problems in high school. I'm applying to college now and am trying to find out about school's disability offices. It is nice to read other's experiences. Do you have any suggestions of things to ask colleges before I go? I hope that everything is going well!
  10. A positive ANA can mean that you have an autoimmune disorder. But it can also be a fluke or a sign that you could be developing an autoimmune disorder. My ANA was a little bit positive this fall, but I got more testing and I don't currently have any autoimmune disorder. Have you seen a rheumotologist? I learned a lot when I saw one. The rheumotologist can also order the next set of testing which gives more information. Also, were your complements checked when your ANA was tested? Usually, they are checked together. If some of your complements were off too, then it is important to get the next round of testing. Also, Lupus and RA are not the only autoimmune disorders. Some disorders have less symptoms. And those symptoms could be similar to your dysaut symptoms, so it is hard to tell. I hope I was helpful.
  11. I have stomach pain all the time. My health problems started when I was 8 with a stomach ache that never went away. I've had 2 endoscopies that showed nothing. I used to take nexium every day, but it is bad to be on that for too long (has been shown to cause osteoporosis). Right now, I'm just trying to manage my stomach aches. I don't think my stomach is all related to POTS (I do have some food sensitivities), but my stomach is at its worst during POTS episodes.
  12. I can black out or see spots when I stand. It doesn't happen that often, but it always happens when my POTS is really bad. That would make me think that it is related to POTS. Testing her hr and bp when she stands up shouldn't do any harm, so I would try it.
  13. I exercise for 30 minutes 5 days a week and I think that is pretty good. An hour every day might be a goal, but you can start out small.
  14. My pediatrician is great. She is always the first person to admit it when she feels like there is nothing more that she can do, but she can always say which specialist I should go to. Many times, she calls the specialist while I'm in her office to discuss what she can do. She also wrote to the mayo clinic so that they would see me. When I was diagnosed with POTS, she admitted that she had never heard of it, but she asked more about it and researched it. I've been lucky with all my doctors. I have not had any horrible experiences. So there is hope out there!
  15. I'm glad that you are happy (at least somewhat) with your endoscopy. I've had two and it isn't always fun. The first time, it took 3 tries for a nurse to get the IV in my hand. I was eight, but I can laugh about it now. I hope that you get some good and easy results from the biopsy. Good luck!
  16. I think that I got mine at Whole Foods. I don't remember the name, but they were with all the dietary supplements, I think.
  17. I get what your saying. My friends get mad when I stop hanging out with them, because my POTS is bad. The worst is when I get suddenly sick and just won't to go home and lie in bed. My friends try to get me to suggest things that I can do. I know they are trying to be helpful, but when I'm having a POTS episode, my brain turns off! I have so much trouble when someone gives me a hard time about not doing stuff. I'm horrible at pacing, because I'm sick of the grief people give me about taking a break. I'm going to try to take some people's advice here and do what's best for my health and let my friends live with that.
  18. Thanks so much for sharing. I forwarded it to my best friend because she had asked me about POTS.
  19. I think that your therapist was being extreme. Pacing is really important. I'm doing a pain clinic currently and we learned a bit about it in our psych class and in OT. The psychologist used the metaphor of the stove and said that the pain (or POTS) should be put on the back burner. That means that you have to pay attention too it so that you don't make it worse, but it shouldn't always have your complete attention. I think that is what you were thinking too. I think that as long as you are happy with how you are handling your POTS, you should keep on doing what you are doing.
  20. I have been working on the elliptical for awhile. I started with 8 minutes at physical therapy. I did that for months. The goal here is really to exercise for 30 minutes, so I do what I can on the elliptical, then finish on the bike. mkoven-- I'm glad to hear that it helped you. I feel like I'm getting stuff out of it. I don't really do much for my ANS, except that the chronic pain stuff works for that too. The doctors have heard of POTS, but the PTs and OTs don't know too much about it, but they can help pacing and standing tolerance. It is a really great place.
  21. I started a pain clinic at the Rehab Institute of Chicago (RIC) last Monday. The main reason I went was my chronic chest pain, but some of the stuff helps with POTS too. I have had a really hard week. The clinic is from 8am-4pm every day. I get home and can barely do anything. I have conditioning 3 days this week. For conditioning, we go to a gym that is close by and do cardio stuff and can work on our exercises for PT. Yesterday I did 20 minutes on the recumbent bike and 10 minutes on the elliptical. It was hard and I was really sore today. Now the amazing part: I want to increase the time on the elliptical, so I only went 18 minutes on the bike today. I was planning on going on the elliptical for 12. I ended up staying on the elliptical for 20 minutes!!! and then I went and did pool therapy. I think that I might have pushed my limits a little bit, but I'm not in bed from it. I thought that everyone here would appreciate my improvement. I'm really hoping that I get some help.
  22. I never heard that poem before. It is great! Thanks for posting it.
  23. I've never heard that. That seams like it would be the resting hr of a very fit person. Today, I was at a pain clinic at RIC (rehab. institute of Chi.) and the PT was telling my whole group that a normal hr is 60-100 bpm. Was that the only reason the doc wanted you on that med?
  24. Wow! That is a stressful event. And it is probably at least 10 times more stressful than I am imagining. I'm glad that you were so quick to act. I hope that your husband continues to recover.
  25. Heat and humidity makes me so sick! I don't have central air in my house so I spend most of the hot days in my room with the window unit on. I try to drink a whole lot more water and not stand as much. It helps a bit.
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