Jump to content

nunibenuni

Members
  • Posts

    53
  • Joined

  • Last visited

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Country

  • Interests
    I love to sew and bake. When I was well (actually before I got worse, I was never well) I figure skated and played the cello. I am working on getting back to those. I love to read, listen to music, and hang out with my friends. I am also active in my church. I love my youth group and go even when the only thing I can do is lie on the couch.

Recent Profile Visitors

1,313 profile views

nunibenuni's Achievements

Newbie

Newbie (1/14)

0

Reputation

  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!
×
×
  • Create New...