DickinsonsMeadow

Thanks, @MikeO. I think that's a great idea. @Sea otter, I do like word-of-mouth suggestions, and I will keep your idea in mind!

I'm thinking of getting a second opinion. I don't want to be obnoxious--e.g. "I spent a little time on Google, so I know more than a medical professional"--but my cardiologist keeps making basic untrue statements about POTS. You know, stuff that scientific papers have as part of their "About POTS" abstracts. I'm considering getting a second opinion, but I'm not sure if I should or how to go about it. I'm not self-diagnosed, though the person who originally said I had it was a neurologist. I'm willing to accept my cardiologist's idea--it's the fault of meds I've taken for many years without a problem--if I hear it from someone I trust. It's just that those meds are critical to my mood stability and took many years to find. Frankly, I'm terrified of rocking the boat and want to be sure before I do anything drastic. Any thoughts? If I do get someone else, how can I know they will be more knowledgeable about POTS?

Thank you so much, @bumpkin. Those are great suggestions, and I will definitely try them.

I've been having a lot of trouble getting to sleep. Part of it may be all the lying back I do during the day, but I wonder if anyone has suggestions outside of the usual sleep hygiene tips.

Thanks, Pistol. I starred on a very low dose--2.5 mg--so it may just be a coincidence. Migraines are always tricky, though.

Thank you so much! I'll let my nutritionist know.

Wow, it's quite a debate.

Hey, sorry I keep posting questions. I just got a diagnosis and my doctor is one of those specialists who's too busy to have long conversations. I've heard some foods are good or bad for POTS. Mine is related to low blood pressure, I think (again, my doctor wasn't too clear about the link) and I wondered if I could work with my nutritionist to ease symptoms. I often feel much worse after I eat. I know salt is good, but the possible changes I see online are so confusing. Does anyone have advice about how to start with all of this? As a side note, any tips for eating small meals when you have nausea (which I get a lot)?

Thanks, Pistol! I asked him, and he said we could try stopping it and starting it when the migraine cycle was over. I don't love the idea of starting another cycle, but it could be worth it. In any case, it feels good to have someone recognize my concerns.

Hey, thanks for your courage. You're right, it's a difficult subject. I have disordered eating related to OCD. I don't know what triggered my POTS, but I know the eating problems make management much more difficult, and it's deeply embarrassing/frustrating. I had a healthy (if overly regimented) diet until the nausea made it difficult to eat. Now I feel like I'm backsliding. People with POTS and similar disorders need to be open to discussing these comorbidities without blaming ourselves or each other. Even if your previous eating troubles contributed to your current illness, it wasn't your fault.

Glad it's helping you with sleep, at least! I put my bed up on bricks for a while, but I got horrible upper back pain. It didn't seem to make a difference for me. Thanks for mentioning the hot/cold flashes, btw. I was just diagnosed and never know what's POTS and what's... I don't know, something unrelated.

Hi, my doctor started me on midodrine a few days ago, and I started getting awful headaches. I've had cluster migraines since I was a kid, and I'm worried about triggering one with this or another med. Has anyone experienced this? Are there BP meds I should avoid?