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Everything posted by Hummingbird

  1. Fascinating topic! I just got my 23andme results back about a week ago and was doing a Google search about POTS/NET when I came across your posts. I tested for very high standing norepinephrine, so was interested in this. Would be interested in finding out more!
  2. Hello I saw the documentary "Fat, Sick and Nearly Dead" and was so inspired by it that I decided to start juicing. I have been juicing (1-2 drinks/day) for about three weeks now. I have been unable to work for over a year now. I am hoping that juicing will help turn things around. Has anyone had DRASTIC results from juicing?
  3. Kayla, I live in Raleigh, NC. Who do you see at Duke? Do you like your doctor? I see a Cardiologist in Raleigh. He wants to refer me to Grubb or Vanderbilt. I have also applied for SSDI. I was denied, then appealed and denied. Awaiting another appeal.
  4. Sounds like I am in a similar boat as several of you. I am 41 and was working an as RN up until March 2011 when my POTS symptoms worsened dramatically and I became unable to work. I am currently on LTD. My initial SSDI claim was denied, as was my appeal. I am waiting to appeal again. It has been one of the most difficult years of my life. Besides my faith, one of the best things that has helped me is being able to talk to others with POTS that understand my symptoms and can relate.
  5. My cardiologist says he is out of options to treat my case and is going to be referring me to either Dr Grubb or Vanderbilt Outpatient Clinic. Can you share your experiences? I am currently on long-term disability, trying to get SSDI. It has been a very frustrating road. I'm hoping a good referral will help and offer answers. Any info appreciated!
  6. Lieze, I can relate SO much to your post. I am also an RN and just lost my job due to exhausting my medical leave from POTS. I am currently on long-term disability and about to apply for SSDI. It has been a very trying time. I would love to talk further with you!!! -Lauren
  7. Lieze, I can relate SO much to your post. I am also an RN and just lost my job due to exhausting my medical leave from POTS. I am currently on long-term disability and about to apply for SSDI. It has been a very trying time. I would love to talk further with you!!! -Lauren
  8. Hello, Lately I have been having what I call "adrenaline surges" where I will feel very stressed out for NO reason. I will have tachycardia, sweating and feel very "fight or flight." These are not panic attacks, but almost an exaggerated stress response. I'm sure this is part of my POTS but it has gotten worse lately. I take a beta blocker, Florinef and Klonopin. This combo helps, but not enough. I'm going to schedule an appt with my Cardiologist. Does anyone else have this issue? What seems to help you the most?
  9. I was diagnosed with shingles and prescribed anti-virals, but am still having a difficult time recovering. I am continuing to get breakouts. Has anyone struggled with shingles? Please tell me what helped you heal. Does POTS interfere with the immune system? I normally recover from illnesses ok, but the doctors are baffled by my continuing breakouts. Advice/opinions appreciated!!!
  10. Cardiologist wants me to try Verapamil. My BP runs low and HR high. Has anyone had any luck with this? Any info appreciated!!!
  11. Thanks for the replies! I had to go off Bystolic. Couldn't tolerate the side effects and it wasn't controlling my heart rate. Cardiologist wants me to try Verapamil next.
  12. My BP always runs on the lower side, while my heart rate is high a good majority of the time. A little over a year ago my cardiologist put me on Zebeta (bisoprolol) and Florinef. The combo did wonders for me. Recently the Zebeta stopped controlling my tachycardia and anxiety ("adrenaline surges"). He has switched me to Bystolic. Anyone have any luck with this?
  13. Did you ever find a physician in NC? If so, who did you see? I am in Raleigh, NC and am looking for a knowledgeable physician.
  14. Just wondering if anyone takes Valtrex for cold sores? If so, does it worsen your POTS?
  15. Has anyone ever tried Provigil for fatigue/tiredness? My doctor prescribed Ritalin and Vyvanse in the past and I find these can be helpful, but increase my fatigue when they wear off. Experiences/opinions appreciated!
  16. My doctor says that she has ONE patient that needs B-12 injections daily, so it is not unheard of. She monitors labs frequently.
  17. I was diagnosed with pernicious anemia and do B-12 injections weekly. I have found if I do the injection before bed I will toss and turn, so I do them in the morning now. I do have more energy and the numbness and tingling in my feet is gone. I read the book one of the previous posters mentioned and learned SO much about the importance of B-12. Definitely a book worth reading! Good luck!
  18. Rene, thinking of you and praying for you. Please update us when time/health permits!!! *HUGS*
  19. My Gastroenterologist has recommended Miralax daily. Please list your experiences, side effects and benefits! Thanks in advance!!!
  20. Anyone see a doc in or near Raleigh? Thanks in advance!
  21. Thanks everyone for the great suggestions! Rene: I was actually taking a magnesium/calcium powder from Kal that you mix with water... tastes like raspberry lemonade, but wow... causes abdominal distention. I ordered a bottle of Oxy Powder to try next. If it causes unpleasant symptoms, I will switch to magnesium citrate as you have suggested. Thank you! Broken_Shell: No, I haven't tried Miralax. Is it something that can be taken long-term? Any side effects? Shadesofgrey49: I was taking ALIGN at my Gastroenterologist's suggestion. It is expensive. It is supposed to work well with IBS symptoms. I
  22. Sue, I do not have any suggestions, but wanted to tell you that abdominal distention/swelling is definitely one of my top symptoms too! I also have abdominal pain and constipation. Ugh! I have an appt to see my gastroenterologist this week. I am sorry we are having to deal with this. Please let me know if you come up with something that helps you, and I will do the same! Take care.
  23. I am sensitive to medications, so I started out taking 1/4 tab daily. I did that for 2 days, then bumped up to 1/2 tab daily. Florinef did WONDERS for my symptoms, but I have not been able to tolerate any more than 3/4 tab daily without terrible headaches. I continue to take 1/2 tab daily and have been on this dose for about 8 months. I do not have any side effects at this dose. Good luck to you!
  24. Chrissy, I have been having abdominal pain as well. My first thought was ovarian cysts or a fibroid. The ultrasound was negative for that. Then, had a CT scan done to rule out appendix issues and that was negative. My pain is on the right side and is intermittent. I went to the GI doctor and he put me on a probiotic, which has not helped my pain. I hope you can find an answer soon. This is frustrating! Do you have any other symptoms besides pain?
  25. Hello Everyone, Wondering what GI issues you have with POTS and how you remedy them. I seem to have a slow bowel that has gradually worsened, along with abdominal swelling and pain, especially after work in the evenings. Fiber seems to actually INCREASE my symptoms of constipation and swelling, so that's out. I have started a probiotic which helps a little. I have tried magnesium tablets, which bloat me even more. I don't want to resort to harsh laxatives. I am mindful about drinking enough water. I am about at my wit's end. Very frustrated! Any suggestions welcome.
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