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Everything posted by janiedelite

  1. http://www.mc.vanderbilt.edu/reporter/index.html?ID=12580 Enjoy!
  2. Oh Corina, I'm saying a prayer that it will work out for you to stay on the octreotide. I know it's been such a life-changing medication for you. Sorry you have to go through the anxiety of wondering what your prescription coverage will look like.
  3. He is looking for a doctor that he could provide suggestions to for treating you, who would be local and easy for you to see regularly, and who would be willing to collaborate with him for your treatment. Often specialists will do this because the treatments they prescribe have side effects, so you'd need a local doctor to help manage you with the day-to-day details.
  4. http://forums.dinet.org/index.php?/topic/19231-pots-pregnancy/page__hl__pregnant__fromsearch__1 http://forums.dinet.org/index.php?/topic/18909-im-pregnant-with-potshelp/page__hl__pregnant__fromsearch__1 http://forums.dinet.org/index.php?/topic/18605-pregnancy-and-pots/page__hl__pregnant__fromsearch__1 Here are a few of the recent threads on this topic. If you type "pregnant" or "pregnancy" into the search bar, you'll come up with quite a few prior discussions. Best wishes for a healthy pregnancy!
  5. Whenever I increased my dose or frequency, I checked it every hour or two. Maybe your doc will have more specific suggestions. Best wishes!
  6. As long as your doctor agrees with this plan, this is something that I've done myself (after talking about it with my cardiologist). I had to make sure to check my BP regularly, especially if I wanted to lie down after taking the midodrine as your BP can go too high while lying down if it's in effect. This drug is supposed to last just a few hours, so it's easy to titrate if your doc agrees that it's safe for you to do so.
  7. If your migraines are due to lack of blood flow to your brain, the florinef may actually help you by boosting your blood volume. It did cause headaches and hypertension for me unfortunately. Some here have found it to be a great drug, though. Best wishes in getting to the source of your headaches.
  8. Jpjd has a great idea to check your BP and heartrate after resting lying down for a few minutes, then stand and check BP and HR every minute for 5 or 10 minutes. I'm glad your doctor is taking your symptoms seriously, but if you have a type of dysautonomia, your BP and HR may not compensate normally when you stand. That will be concrete data that your doctor could use when determining what's wrong with you. Best wishes and welcome!
  9. I had my TTT at Mayo in MN and my arms were at my sides from what I can remember.
  10. I'm so glad you had a good time with your friends. That sounds like good medicine to me!
  11. Here are a few threads about cooling vests. Hope it helps! http://forums.dinet.org/index.php?/topic/17947-controlling-body-temperature-cooling-vests/page__p__163828__hl__+cooling%20+vest__fromsearch__1#entry163828 http://forums.dinet.org/index.php?/topic/17640-cooling-vests-with-medical-discounts-info/page__hl__%2Bcooling+%2Bvest__fromsearch__1 http://forums.dinet.org/index.php?/topic/17516-cooling-vest/page__hl__%2Bcooling+%2Bvest__fromsearch__1 http://forums.dinet.org/index.php?/topic/17172-cooling-vest/page__hl__%2Bcooling+%2Bvest__fromsearch__1
  12. Sometimes you can rent wheelchairs at places like the zoo. Also, a seat cane may be useful, especially if you want to walk but can't stand still to watch the exhibits.
  13. I'm sorry that I don't have any advice or comments. But I wanted to say welcome to our forum! I hope you find the support you need!
  14. When I first came down with POTS, my goal was to find out if there was anything causing it. I don't know if he investigates for the common underlying causes of autonomic dysfunction, but it may be worthwhile to ask. Have a great appointment!
  15. After hearing back from another moderator, here's their suggestions: - at times it takes a few days for a photo to load, - it might depend on the browser you use whether you can see the photo or not. there can be a difference in using google chrome and internet explorer. The other moderator was also able to see your avatar as a color picture.
  16. When I view your posts, I see your picture as the avatar. Maybe something finally worked?
  17. compression hose and/or abdominal compression can be helpful.
  18. Good for you that you are getting some medical validation for how you've been feeling. I hope you get more answers soon.
  19. I had to find an outlet to talk about my disease that wasn't my family or friends. I started seeing a therapist once a week. I could say anything I wanted and didn't have to worry about hurting her feelings or wearing her out. Also, this forum is the perfect place to "complain." We're always here for you!
  20. I tried just one pill because it was $8 a pill and insurance didn't cover it for me. It made me feel jittery, gave me more chest pain and then I crashed hard 8 hours after taking it.
  21. Carvedilol in low doses helps my chest pain quite a bit. I take 6.25mg as needed. I have problems with pooling, but also vasoconstriction (raynaud's/pernio, elevated norepi on standing). I think the beta blocking and alpha blocking properties of carvedilol both help me.
  22. I'm so sorry, Jenn. Having a chronic illness is so trying because it seems like I suffer loss after loss sometimes. I guess what helped me to get through it was the support of others who understand those feelings of losing their job because of illness, and telling myself that it's okay to grieve. You've been through so much lately. You said that you were expecting this, but I understand how when it happens it just really hits home.
  23. "It Stays" works great for me. My thigh high hose with silicone band stay up all day after just one morning application, unless I get sweaty or am extremely active.
  24. I keep having this problem too. I passed this info on to the site Administrators. Thanks Sue1234!
  25. Is it possible for you to buy an automated blood pressure cuff and do a Poor Man's Tilt Test? You would check your BP/Pulse after resting lying down for a few minutes. Then stand up and check your BP/pulse every minute for 10 minutes or so. Those results can be used to give a POTS or Orthostatic Hypotension diagnosis. Doctors can do it in their office as well, if they want to take the time, and it shouldn't cost you more than the doctor's appointment. If you do have POTS or OH, there are medications or non-med treatments that can be tried. Best wishes! Oops, I see that someone just replie
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