Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Stace915

  • Rank
    Advanced Member
  • Birthday September 15

Profile Information

  • Gender
  • Location
    Columbus OH (by way of NJ and NY)

Recent Profile Visitors

5,620 profile views
  1. Thanks Carol @potsmama I am vegetarian and have eaten clean for a for years (most of the time). I don't seem to get any reaction to gluten, as I've tried a gluten free diet in the past. I do take 300 mg a day of Zantac but for reflux, if it will help with the allergies great! I am in the process of going through some tests for my digestive system and I'm very limited with what I can eat, but once that is finished I will look into some more of these options. I would love to be on less allergy meds!
  2. No @katybug I haven't heard of that. I'm not a huge fan of prednisone but if it would knock whatever it is out of my system, it might be worth it. I'll mention it to my doctor. Thanks!
  3. I know this thread is from years ago, but I'm wondering if @POTSMama ever found any relief from the itching. I have had POTS (which my cardio told me recently that since all of my autonomic functions are getting worse, I really should call it Dysautonomia), I also have EDS, and fibromyalgia, severe allergies. I currently take 360mg of Allegra, Singulair, Atarax, Zyzal and get weekly allergy shots. My skin is still itchy all the time. My allergist is baffled bc the meds I'm on should control the itching and hives. He sent me to the dermatologist. Nothing is visible on my skin so he was also b
  4. Hi Katybug, I was covered by FMLA but it only protects your job for 12 weeks and I have already been out longer than that, so I am no longer covered. A family member who is an attorney is going to be working on the appeal with me. My local cardiologist is writing a letter for me, I am compiling articles from research journals/publications and I have an appointment coming up at Cleveland Clinic and with Dr. Grubb. I am hoping that the doc from Cleveland Clinic and Grubb will also be willing to write letters for me. I am fighting this appeal with guns blazing!
  5. Checking in again. I spoke to a family member who is an attorney and he is going to help me put my appeal together. I have been reading articles and abstracts, does anyone have any specific info regarding what they put in their appeal for LTD (only if it was accepted of course ), or have any articles specifically talking about how symptoms can sometimes be under control/ "manageable" for years and then be exasperated?
  6. Hi all, I am 34 and have been dealing with POTS for 8 years. I was doing pretty well for years but health started declining in October. I was on Short Term Disability for 3 weeks and expected to be back to work but that ran out and my doctor still couldn't get things under control. I was waiting on an appointment with Dr. Grubb but it was canceled due to his wife's illness and passing. Since I did not see Grubb my local cardiologist was the one that submitted records for my Long Term Disability, the problem is since October I have only been seen by him once. The day I saw him my BP and HR were
  7. I took the prescription gelcaps for a few months, it was a once a week pill...after that my levels were tested and went up to a normal level so the doctor told me I was fine. A year later I went back and my level were even lower than the first time, I was prescribed the gelcaps again and along with that told to make over the counter vitamin D and K. I take the viactive chews, after a few days of taking them I got used to them and now I think they actually taste like chocolate. I am not sure what is caltrate is a pill or a chew but if you can tolerate them I recommend viactive.
  8. Feeling like Alice in Wonderland is a great way to explain it. I guess I am one of the lucky ones...at this point I am able to work full time and drive, I still have a lot of days that I am not up to driving, or working and still have episodes almost everyday. A little while ago I tried to walk the dog with my boyfriend. We didn't walk very far but I kept complaining of the heat, he insisted as usual it wasn't that hot, it was my body. It took about 25 minutes for me to make it back to my house, and we didn't even walk a full block. I made it back and collapsed on the couch, drank a gallon of
  9. For a small female back in my college days I had quite a tolerance, at one point I could keep up with all of my male friends drink for drink...of course I stopped drinking like a fish after college and only drank occasionally. Once I was diagnosed with POTS I was told to stay away from alcohol so I didn't drink anything for 10 months...then one night I decided to try and sip and glass of wine and see what happened and I was ok and just felt like my usual POTSY self. I have been struggling with POTS for about 5 years now and at this point it is very rare that I have a drink. My tolerance is gon
  10. Hi Caterpilly, Unfortunately Dr. Pecker didn't offer any treatment solutions that I hadn't either tried or read about before but he took the time to try everything with me, and kept a very close eye on me and my case. In the beginning he did blood draws once a week and when I would see him would not just do the usual taking my bp and hr while I was upright and supine, we would actually go and walk up and down a few stairs and do other things so he could monitor exactly what my body was doing etc. He was much more hands on than my other doctors were and I felt like he was doing everything he co
  11. Dr. Mark Pecker at Wells Cornell (which I always confused and I am not sure if it is part of Columbia Presbyterian). I found him after my electrophysioligist at LIJ hospital told me that he felt like he had run out of options to try with me and recommended I find a doctor with more experience. He was my specialist until I moved out of state and he was wonderful! I know for a while he was not taking new patients but that if you called and explained your case and that you have already been diagnosed with POTS/Dysautonomia that he would take you on as a patient. http://www.weillcornell.org/mspec
  12. The latest edition of our newsletter "Dysautonomia News" is new available at: http://dinet.org/newsletter.htm or you can also find it by going to our main DINET page and clicking on the "newsletters" tab on the left. Please make sure everyone takes the time to read this one, there is an important letter in there from DINET President, Michelle Sawicki. Enjoy!
  13. I take a medication called Cerefolin NAC for brain fog, it was prescribed to me by Dr. Grubb. It is a prescription strength of some combination of vitamins and it is a actually a drug used for Alzheimers patients. Unfortunately most insurance companies do not cover it, I did ask why but I can't remember and it is $60 a month, but I will say that I cannot function without it. It is a huge help! I do still get brain fog but not nearly as bad as I used to. In fact, my bf can tell if I haven't taken it because I am searching for words, screwing up words, just not really making sense when I speak w
  14. Flying is pretty rough for me, I have learned that hydration is the most important thing! I drink as much water as humanly possible for a few days before I fly, and I continue throughout my entire trip. It is a bit annoying because I have to go to the bathroom constantly (to the point that it is always a joke when we travel), but I have found that if I hydrate, hydrate, hydrate, I feel a lot better than if I don't. That being said, even with all of that water, I still do not feel anywhere near good when I fly. I always drink a ton before we get to the airport, and then once we go through secu
  15. Hi there, I am so sorry to hear about your friend. That is terrible. I don't know anything regarding the tumor but I do know a bit about POTS and anesthesia. I had surgery about a year and 1/2 ago, it was elective cosmetic surgery but due to anesthesia and my health it almost did not happen and needed a lot of special sign-offs etc. What my electrophysiologist and later Dr. Grubb told me is that there is no reason that a POTS patient cannot have anesthesia however you need to take special precautions. In my case, the doctors some how contact the anesthesiologist way before my surgery and let t
  • Create New...