mostlyelbows

Thank you for the info @Sarah Tee ! That is a good point about checking reviews about the POTS specialist – I'll definitely do that. Thanks for the kind words @bizbiz! You really hit the nail on the head of how it feels. I also really like the Vitassium stuff. I hope you can find some improvement in your brain fog as well! I just had the appointment with my GP and she was much more empathetic and completely understanding, which is a big relief. I honestly didn't know what I was going to do if she had also brushed me off. She's going to start me on a low dose of Adderall with a tiny dose of Zoloft as well. I've heard good things about these for POTS and brain fog so we'll see how it goes.

Thank you for the kind words, @Pistol! It's always nice to hear that I'm not totally crazy haha. I will definitely check out those links! The mechanism one in particular is super interesting. Thankfully I was able to get in with my GP next week and hopefully she will be more helpful in the meantime!

I was diagnosed with POTS about six months ago, but looking back I've likely had some form of dysautonomia since I was a teenager that went unnoticed/misdiagnosed for 10+ years. I've never had it "bad" enough to pass out, and I think my heart rate is relatively tame compared to a lot of POTS patients, but my worst symptoms are low energy and a persistent, ever-present mental fogginess that never goes away, to the point where I sometimes feel depersonalized and disconnected from reality. I almost never feel present and my brain often feels like soup - it's like being slightly drunk, all of the time (but sadly without the fun part of being drunk). The cardiologist who diagnosed me put me on Fludrocortisone / salt, because my BP tends to be on the low side, which has helped a little with my energy levels but didn't do much for the brain fog, and I still find it hard to stand for 15+ minutes without vasodilation / blood pooling in my feet, which results in dizziness and a horrible weak feeling, even though I don't actually pass out. I also wear compression, drink 2+ liters of water a day, and try to exercise which helps, but the brain soup persists. Today I had a follow-up with the cardiologist, and after explaining that the Fludro isn't doing that much and that I would like to try something else, he proceeded to tell me that POTS doesn't actually cause brain fog (?!) and that actually I seemed like a "functional young woman." I tried to explain that even though I can technically work and am not actively unconscious, my brain fog makes it difficult to do tasks that require any novel thinking or problem-solving, and I asked about trying something like Midodrine that would be more constricting. He told me that Midrodrine does exactly the same thing as Fludro so it wouldn't make any difference, and basically told me since I wasn't as bad as his worst POTS patients that there was nothing else he could do. The good news is that the cardiology office is adding a POTS specialist which he referred me to for a second opinion, but I couldn't get in until November, which feels like an eternity away after spending 2 years just trying to get to this point. I've had relatively good luck with doctors up to now, but having someone dismiss my brain fog as something trivial and unrelated to my quality of life felt really soul-crushing. And it's hard to sit and listen to doctors confidently explain things that you know from your own research/experience to be incorrect. (I'm no pharmacist but Midodrine and Fludro seem like vastly different drugs to me!) I guess I'm just wondering if anyone else has experienced this kind of disassociating brain fog from POTS/dysautonomia and if there was anything you did that helped with it, even a little. I'm lucky to have a relatively "easy" job right now, but I'm worried that if my job or life becomes more demanding at some point that I will not be able to keep up. I know that there is no easy cure, but I want to believe there is something else that might help my brain soup, even a bit. Any thoughts would be appreciated!