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Stace915

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About Stace915

  • Birthday September 15

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    Columbus OH (by way of NJ and NY)

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  1. I started Octreotide this morning. Grubb prescribed it for me and I've been awaiting its arrival. In a way it's a last resort for me, as we have tried all other treatments and combos that my insurance will cover. I had high hopes- instead of increasing my BP like it was supposed to, my BP is fine but my heart rate is 53!! I got a bad headache immediately after the injection and started to get really hot and more lightheaded than I was before the injection so I checked my vitals. I never get bradycardia, only tachycardia. I can't believe how awful I feel!! Left a message for Grubbs office. I'm supposed to do the injections 3x a day. If I don't get a call back today (which I probably won't) I am not using it again until I speak to someone. Has anyone else had a similar experience?? I feel so terrible that my disappointment hasn't even settled in. Thanks
  2. 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!
  3. 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!
  4. 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 baffled. Suggested I switch using cerave lotion, and unscented Dial bar soap. I saw a bit of an improvement for a few weeks and then it got bad again. I cover myself in cortisone cream but it usually doesn't help much. I have scratches and bruises all over my legs from bc I'm so itchy, I have to scratch. Also, the skin under my bottom lip is the itchiest spot. It's been like that for over a year-but there are no products that I am using only in that spot and there are no visible hives!! We have done food allergy testing a few times and I have completely cut out of my diet the foods that I'm allergic to. Does anyone have a suggestion of what could be using the itching? Or what to use to help it aside from ALL the allergy meds I'm on and cortisone cream? Thank you!!!
  5. Thanks Sarah! I actually found something very similiar late last night. Based on how I'm already feeling today, and reading that... I'm going to skip it. I'll probably mention it the next time I see my cardio, but it sounds like it could be a recipe for disaster! Thanks again ?
  6. Hi has anyone tried cryogenics/cryotherapy, specifically the cold chamber that you are in for 3 minutes? I have read a lot about it and it sounds like it would be helpful for my Fibro and EDS pain but that it could also help with some of my POTS symptoms. I am little concerned about the extreme cold possibly causing me to have a POTS episode. If anyone has tried it, please let me know how your experience was. Thank you!
  7. 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!
  8. I googled it and I am still a little unclear. It looks like it is a tiny IV, do you do this yourself at home?
  9. 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?
  10. He was at NY Presbyterian uptown. I moved 7 years ago, not sure if he has moved.
  11. Dr. Marc Gordon on the list above is the first cardiologist that I saw, he did my tilt table test etc and diagnosed me. After seeing him, I went to a specialist, in NYC, Dr. Mark Pecker (yes funny name!). He was very helpful and I saw him until I moved out of state. I would highly recommend him. He is at NY Presbyterian.
  12. 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 both "normal", but I still felt terrible, was shaking, and could barely stand up. I do call his nurse every few days and check in with her, but I found out yesterday that my claim for Long Term Disability was denied. I am waiting for the letter with more details but the rep said my medical records did not show the need for me being out of work. I really wasn't surprised that my claim was denied, but I am still panicking! Luckily STD paid me 100% of my salary, but since that point I have missed 4 paychecks! I had money in savings to get by for the last 2 months but I was also, hoping that I would be approved and would be paid retroactively 60% of my salary. My job is no longer protected by FMLA and when I spoke to HR about whether I needed to be concerned about losing my job, I didn't get a real answer. I was told that once I have medical clearance to return to work, they will look at the needs of my team and determine if my position is needed. If it is not, they will work with me to try and find a similar position...it sounded like he was reading from a book of how to cover his butt legally, and did not seem too promising. So, I don't know if I will have a job when I am allowed to return to work. I am running out of money, and my LTD claim was denied. I have an appointment at Cleveland Clinic in a month, as well as an appointment with Dr. Grubb a few days after that. I am planning to appeal my LTD claim denial and was doing some research online regarding what I should include. Did anyone else appeal a LTD denial and have it approved? If so, do you have any suggestions or a version of the letter that you included with you supporting documents (doctors letters, articles, letters from family/friends etc). Thanks!
  13. Kelly, I don't know why but I just figured when my cardio said no, based on the explanation of why he said no, that it would be no across the board from all doctors. For some reason I didn't even consider that another doc would have a different view point. When I travel I drink as much as humanly possible and still need a day to recoup when I arrive and a day to recoup when I get home. What kind of doctor is it that you see for the iv infusions? Sounds like its worth it for me to do some research and push the issue! As far as stopping my period w birth control. I was on the pill that you only menstruate every 3 months and I saw an improvement but then I had issues with bleeding and clotting so they took me off birth control and no doctor will put me back on.
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