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About Chillyhilly

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  1. Hi, Does anyone have information on the link between hypoperfusion and anxiety? I recently experienced a bad medication reaction which caused both severe POTS symptoms and anxiety. The scariest symptoms were not being able to speak clearly, and decrease in cognitive functioning. It resolved after several days, with rest and fluids. It’s hard to tease out what causes what, and even harder to explain to ER docs that this isn’t all psychological! Any info, especially scholarly articles, would be really helpful. Thank you!
  2. Thank you Scout and Pistol so much for your validation and support. I have hesitated to ask for help here because I didn’t feel I was as sick as some members but am realizing that I am actually pretty sick. I have made an appointment with university of Washington for two weeks (got in super fast, so lucky) and will start thinking about Mayo and Vanderbilt. I am in washington state so it would involve travel and considerable expense but I’m ready to make a change. Kept thinking things would get better but they’re not. If I’m doing everything I’m supposed to do, there must be something the docs are missing, right? The other doctors listed on the dinet list are out of my area so if I’m going to travel it may as well be a bigger specialist.
  3. Hi! This forum has been so helpful to read other people’s posts and now I need to ask for advice. I’ve had PTSD since I was a kid and mild POTS symptoms since high school. They worsened over time until a car accident in 2014; the records show I would stand, pass out, be given fluids, and BP would stabilize. Probably should have been diagnosed then. Managed to function pretty normally until a traumatic job in 2016. Then was diagnosed with POTS, no underlying cause, in 2017. Then became pregnant. Put On Pyridostigmine, which barely made a difference. Symptoms worsened with pregnancy then seemed to improve the first few months postpartum. Lack of sleep, being the primary caregiver, and PPD worsened the POTS significantly. Still kept working part time until last summer when I crashed. Couldn’t get off the floor, couldn’t speak clearly for 6 weeks. Started regular IV hydration therapy at that time. Added midodrine which helped. From last summer to now have increased pyridostigmine and midodrine doses, gotten pretty frequent infusions, physical therapy, used compression, 10 g sodium and gallons of water, walk consistently, had to quit my job and move in with family, and there are still days when I can barely care for my child. New doc added Bisoprolol and it helps a bit but tried to up the does and ended up in the ER tonight. Have seen 4 different docs due to insurance changes and other reasons. The last year has been a roller coaster where I’m ok for a little while then something like a birthday party or too much sun will knock me out for weeks or months. Always playing catch up and increasing meds without actually getting stable and better. My question is this: is it time for a more expert doctor? University of Washington is supposed to be good but would have to pay out of pocket. Should I try to get in to Mayo or Vanderbilt? We are poor so it would be hard. No one has found an underlying cause. I highly suspect genetic predisposition as other family members have some symptoms, then triggered by PTSD and the car accident. I wonder about thyroid issues- mom has Hashimoto’s, and my TSH is getting lower over the years. Also wonder about HyperPots since adrenaline is such an issue for me. Any advice would be greatly appreciated. I am at such a loss and feel that I am doing everything I can think of but not consistently improving. I don’t know where else to turn; doctors seem dismissive and my current doc thinks I’m making up the side effects. Thank you in advance for taking the time to read and reply.
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