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Potsie1990

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About Potsie1990

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  1. I have tremors as well also. I tested and was found to have adrenergic issues.
  2. Dr. chia has an almost 2 year waiting list and you must be referred with proper labs to be accepted. He’s near me and I tried, but try my docs first. UCLA has great docs
  3. I have a whole list of doctors. Dr. Eric Munro primary (he is a real life dr house) Dr. Hannah Homafar vascular neurology Dr. houman Khakpour UCLA electrophysiologist (he diagnosed my pots and all my other things) Dr. Amir rabbani ucla cardiologist ucla has an autonomic testing center inside the Ronald Reagan cardiac center in Westwood i did 2 tilt tables, Qatar, valsava and all my testing there!!! Got a full diagnosis and started treatment
  4. I can not have vaccines, flu shot, or Botox without a severe crash and relapse!!! The last vaccines I got before my trip to Africa (before I knew I had pots) I was soooooooooooooo sick. Took months to recover; and never did fully
  5. Thank you so much! It’s truly is my new found passion. Nothing makes me happier than being on the ice. To think a few months ago I was crying and depressed with life and couldn’t move, and to now be able to experience so much joy.... it’s the greatest gift. I don’t know how long this will last, but for now I am enjoying my life and I’m trying to make up for the year I lost.
  6. Well, I react to alitude changes so I can believe it. Lol we live on top of a large hill by the ocean in LA and when I’m at my worst, I can’t breathe about halfway down. You never know pots! I get joint aches too when it’s cold.
  7. Hi everyone, sending an update. Still doing the nicotine. I get a flare every 2.5 weeks, and still needs rest days after extremely active days. My cardiologist, neurologist and electrophysiologist all gave me the green light to continue the nicotine because they say that quality of life is more important than me suffering. I started figure skating!!!!!!!!!!!! I skate for a full 1.5 hours now and starting working with a private coach! And I mean REAL skating, nothing slow! I chose this as my physical activity because I have to be ina temperature controlled environment because of my heat intolerance and sweating issues but it works! I can actually breathe and it’s so awesome! Again, I know this is a controversial form of therapy but I just want everyone to know strange things help certain people. My life and symptoms 100% more manageable now and I can now enjoy my life! I still need to salt load and do my pots things but I am d*** near normal now! (Well, as normal as one can be with this. Lol) there is hope, and don’t worry about being judged by other people for doing what works for you. This is not a one size fits all disorder, and if there’s anything we have all learned, the treatments are the same way. I’m actually going to be cleared to fly soon
  8. Yes, I had a really bad experience. Just monitor yourself and hopefully everything will be fine for you! If at any point you feel off, start documenting your vitals.
  9. I would advise to try and find a form of birth control that works for you. I cannot live without it. I wasextremely ill, and was off of it for a whole 6 months and just kept declining rapidly. I could barely move my any limb and was on a walker, and I’m an otherwise healthy fit 27 year old. I just recently got back on with a few other things and I feel like a whole new person. I also have horrible cystic acne when I’m off it, and when I’m on bc I have perfect flawless skin. Maybe one tiny pimple a year! I will say i only tolerate Yaz. It’s monophasic I think and I actually lost weight and have no side effects from it. Its the only thing that helps me retain fluid and increases my blood volume. Without birth control, no amount of salt would help and IV saline worked only for a few hours. It might be the specific type you are on, but my POTS doctor mentioned that hormones such as estrogen can trigger autonomic flares when they naturally fluctuate. I still have not so great weeks the week before my white pills (which is when I’m supposed to have my period, but I skip them) but the first 2 1/2 weeks are amazing. My pots is greatly affected by my cycle. I have been on Yaz for over 10 years with no problems
  10. If you search through recent threads I have a post call Smoking Helps Pots? I will warn you, it’s long and unconventional but considering I was on a walker with severe POTS that left me immobile with terrifying symptoms and now I can live normally again within a year, it may be worth reading. I’ve tried most of the conventional treatments and all failed.
  11. Thanks so much. It’s been a year since I came down randomly with severe POTS (although I’ve had it my whole life undiagnosed) and it’s been a wild year of ups and downs, with more downs then ups. And I was only diagnosed officially in October, so it took 11 months and a stroke of luck to get a diagnosis. I am grateful for this time of health and will treasure it until my next flare.
  12. Omg, I’ve had all of this. The de realization is the worst! I couldn’t explain it to anyone. Im so sorry but mine only went away when my BP became more stabilized and nerves calmed down. Feel better
  13. I had this as well and still continue to have it from time to time. But for me, it’s aggravated by too much salt and what position I’m laying in. It might be nerve related. Be aware of what position you are laying in and see if changing it helps. It you noticed you had a high salt intake that day, try reducing it and see if it helps. They sell cooling socks on amazon, it doesn’t help the entire leg but definitely helps the feet. I also use mint essential oil and spray it on my legs to give a cooling sensation. Feel better
  14. I was left with severe muscle weakness at its peak and almost suffered a stroke later that night while in the hospital. I had temporary paralysis for over an hour as well. I tried 10mg. I’d be cautious. I heard it helps some people but left me worse. It took me 3 weeks to recover from the meds and gave me even worse chest pains and spasms. My neurologist and cardiologist took me off immediately after 1 dose
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