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.