Chillyhilly Posted June 30, 2019 Report Share Posted June 30, 2019 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. Quote Link to comment Share on other sites More sharing options...
Scout Posted June 30, 2019 Report Share Posted June 30, 2019 I am so sorry you are going through this. I just want you to know that I 110% believe what you are going through and I am so sorry that doctors are so dismissive. You deserve better! What you're experiencing is not easy, and I relate a lot to the POTS flares / crashes, and feeling at a loss. I definitely advise you to see someone who has a lot of expertise in dysautonomia. I hear many good things about the Mayo clinic. In order to improve, you definitely need a specialist who knows a lot about the autonomic nervous system, and relevant conditions. I really hope you're able to see a specialist who can help you improve! Sending love and well wishes. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 30, 2019 Report Share Posted June 30, 2019 Dear @Chillyhilly - I also am very sorry about your struggles. As I was reading your post half way through I thought: She needs to see a specialist! So - the answer to your question is - YES!!! Mayo clinic or Vanderbilt are both very good options but there are many Physicians listed on our physicians list that you could go to. Unfortunately for most of us travel is necessary to see a specialist - I drive 8 hours one way to see mine. You can also call University hospitals in your area and ask if they have someone who specializes in dysautonomia if travel is a burden to you. Your history sounds complex - I truly would see a real autonomic specialist. --- Many specialists have quite a long waiting list whereas clinics - such as Vanderbilt for example - have a whole group of doctors in that field and you could get in faster. They also offer research programs there. It sounds like you are doing all you could do to help yourself and it seems that your docs ARE trying. The good thing is that once you see a specialist trained in dysautonomia there will be answers and treatment options available to you that no one is aware of yet. Specialized testing could bring results that point to both cause and treatment for you - so be hopeful!!! If you have questions feel free to PM me anytime!!! Quote Link to comment Share on other sites More sharing options...
Chillyhilly Posted July 2, 2019 Author Report Share Posted July 2, 2019 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. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted July 5, 2019 Report Share Posted July 5, 2019 On 7/2/2019 at 10:34 PM, Chillyhilly said: If I’m doing everything I’m supposed to do, there must be something the docs are missing, right? Yes, I am still looking for my cause 5 years on and will never give up. A condition is only idiopathic when all known causes have been ruled out. B xxx Quote Link to comment Share on other sites More sharing options...
Chillyhilly Posted July 17, 2019 Author Report Share Posted July 17, 2019 On 7/5/2019 at 3:11 AM, bombsh3ll said: Yes, I am still looking for my cause 5 years on and will never give up. A condition is only idiopathic when all known causes have been ruled out. B xxx Thank you! Quote Link to comment Share on other sites More sharing options...
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