On February 8th, I finally started care with a new cardiologist who was highly recommended to me by a spoonie friend with POTS: Nichole from Undiagnosed Warrior. Unfortunately, he’ll be moving to Kaiser in about 3-6 months… the one place I can’t possibly follow him to!
(If you aren’t familiar with the healthcare of America, we have private insurance companies that let you see almost any doctor. You usually aren’t tied to a specific hospital or network of doctors. Kaiser is different. If you have Kaiser insurance, you can only see the doctors in a Kaiser hospital/network; if you don’t have Kaiser, you cannot see Kaiser doctors or use their hospital. I do not have Kaiser.)
Why did I say “finally started” with a new cardio? Well, I’ve been having a lot of problems with my old cardiologist. I’ve been seeing him since my POTS diagnosis (he’s the one that gave me the Dx), and have always left each appointment with a “I don’t know about this” attitude. Dan also didn’t have much confidence in my old doctor, and we were struggling with my POTS a lot. Every time I went in, I felt like my concerns weren’t listened to. I would tell him I was still extremely dizzy and he would just reiterate that my “numbers are fine” and not come up with anything. A few times, he suggested that I get evaluated for ear problems. My ear specialist is almost positive that my ears are fine, and I’d tell my cardio that, and his responses always felt very similar to “it’s in your head.” The final straw was when I tried to mention my freezing toes.
My toes are so cold that I have ended up in tears because they hurt from being so cold! It’s extremely problematic, and I can’t stand it at all. It’s been pretty obvious to both Dan and me that there is something wrong with my circulation (my toes will turn white when the rest of my feet are red, or Dan will be helping me put on socks and can feel a significant difference in temperature from my upper calf to my foot). When Dr J (old cardio) asked me how I was doing, I said I was doing “alright” except my circulation. He cut me off and said, “You don’t have a circulation problem, your pulses are fine.” Um, what? Then when I started saying that my toes are always cold, he cut me off again and said, “You’re a woman.” WOH!!! Did he just say that?! Dan and I were both in a bit of shock. He then proceeded to tell me that women always have cold toes. I tried mentioning that my toes are significantly colder in the summer than my mom’s toes or my sister’s toes are in the winter, he wouldn’t listen. Honestly, that was the last straw. I had spent two years feeling like I wasn’t being fully listened to, brushed off, and not having my quality of life taken into consideration at all. I should have, honestly, left way earlier, but it’s stressful to find a new doctor. I was sick of trying to figure out my own dysautonomia treatments. So, I finally made the leap to a new cardiologist.
Dr F, my new cardio, was definitely a breath of fresh air. He actually listened to what I was saying, and when I mentioned the cold toes he asked if I had Raynaud’s. I haven’t been diagnosed yet, but I told him I’m pretty sure that’s what it is based on what my symptoms are. He didn’t pursue it that appointment, but it was nice not to have it brushed off. He honestly wanted to know all of my symptoms, and even wanted to know about some of my other diagnoses. When I mentioned my concern about the dizziness, and that my current beta blocker (Bystolic) had “may cause dizziness” on the label, he listened. He told me that all the beta blockers can cause dizziness, and it may not be the best medication for my problem anyway. Therefore, I have been taken off the Bystolic completely. It also sounded like he wasn’t too sure about my diagnoses (postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia). He actually was saying that I obviously had orthostatic intolerance, but he wasn’t sure why. My blood pressures, even the high ones I was getting pre-diagnosis, shouldn’t be enough to be causing such severe symptoms. When I explained how I ended up with the POTS and IST diagnoses, he seemed a little confused. (I essentially diagnosed myself, then they did testing to back it up, but they didn’t really test for anything else.) He seemed just as annoyed at the process as I had been.
He asked if I’d ever been checked for renal artery stenosis. I have not been, but it wasn’t the first time I’d heard of it. Before I saw Dr J the first time, I ended up in an urgent care because I felt horrendous. The urgent care doctor said that my symptoms could be caused by renal artery stenosis, and when I mentioned it to Dr J, he just brushed it off. I didn’t know much at that time, so I assumed that meant I didn’t actually fit the symptoms as well as I thought I did. But, now that it has been mentioned again, and I’ve realized that Dr J wasn’t the best doctor for my case, I am thinking I should have probably pushed that idea a lot harder and gotten testing. At least that is a relatively easy fix, usually (they can just place a stent in the narrowed artery to open it back up). Even if it isn’t a super easy fix, it is possible to get it fixed!
For now, Dr F has taken me off my Bystolic, has ordered a 24 hour Holter monitor (which will be placed on Friday the 24th), and has ordered an echocardiogram (which will be on March 3rd). After those results come back, we will hopefully be able to figure out a little more. He was surprised that this will be my first Holter monitor for this problem (I did have another one in 2009, but I can’t even remember why). With my joint hypermobility syndrome (likely Ehler-Danlos syndrome), I should really be getting regular echoes anyway, so I’m glad I’ll be getting another one.
Being off the Bystolic has been interesting. I am, actually, significantly less dizzy! However, my fatigue is back out of control because I’m having mild tachycardia and hypertension again (that is most definitely postural). Luckily, I’ve noticed the compressions socks definitely help, but they’re difficult for me to get on with my hypermobile fingers.
I’m very hopeful that this new cardiologist, and whichever one I have to move to in the practice once he moves to Kaiser, can really help me figure out my health. I’ve been struggling with some form of dysautonomia for so long, and getting a diagnosis and treatments that can help me with my quality of life would be amazing!