4Th Cardiologist Post-Appt. Hangover

[Anoj]

Well, yesterday I was kind of excited, and I slept on it, woke up this morning feeling kinda mad, tbh.

The new guy has a clue. Goes by American Autonomic Society guidelines, studied at an autonomic center, etc. I showed him the results of my last tilt, and he pretty much dismissed them and wants to do his own, even though the last tilt I had seemed to go by the same protocol (blood testing of catecholamines). He also gave me Dr. Levine's protocol, which I know is a bit controversial.

I'm frustrated because this is the 4th guy I've seen who has basically given me the same or similar protocol, and I haven't really gotten better past the progress I made the first couple of years. And each doc acts like I haven't done enough, or haven't done things the "right" way, and if I just do it their way, I will get better.

I have signed up for prescription exercise in the past at a facility (renewed 3 times for a total of 9 months) and had a personal trainer, and that wasn't enough for one doc. The next doc wanted me to swim. (I don't have a pool.) Another doc wanted me to see HIS trainer specifically, who didn't give me exercises that were much different than what I had been doing before. Now, we have the Levine protocol.

It just seems that every doc wants me to do exercise as a primary treatment. Don't get me wrong - I don't think exercise is BAD. And, I would very much like to do it because at this point I am very out of shape. But, I'm frustrated that whatever efforts I make just doesn't seem to be good enough for these docs. And, what they want me to do is so demanding that I'm not sure how I'll even be able to complete it. I also suspect that I could legit have chronic fatigue, and I'm worried that if I do something too strenuous it will set me back.

I am working 32 hours a week and struggling to get out of bed in the mornings. I don't get home until 7 p.m. most nights. The kind of commitment it would take for me to do exercise of this nature would pretty much kill any other time I have in life. I don't know how I could even maintain a job while doing all this, much less care for my household and family, from the standpoint of time and stamina. If I didn't have a job and taking care of myself were a full-time job, sure. Would be nice to get disability and just spend the rest of my life taking care of myself, but then I wouldn't be disabled, would I?

I'm also a bit ticked that he wants to do the tests all over again. When I asked him what tests he wanted to do, the answer was "autonomic." I asked his nurse practitioner the same question and to give me more specifics - she said she would write it down for me, left the room and came back, and on the piece of paper was written "autonomic testing." LOL Come on!!!! Earlier, she had even said something to the effect of, "you're a smart, young woman, I'm sure you can do good research." And she couldn't even tell me what tests they would be using, as if I wouldn't be asking her! haha.

On one hand, I do think this guy is better than the last guy who saw me. This guy seems like he's willing to "own" me and my situation, which is something I need in my state, since there aren't many options here at all. I'm just struggling with wanting to comply. I don't want to go through another tilt, and I guess that's my biggest hesitation. (NOT FUN, as you all know!) When I asked him why I had to redo the tests if the treatment would be the same, he kind of said it would help with more specific medications.

Meanwhile, he told me to add 3 tsp of salt to my food throughout the day, elevate the bed, wear Spanks for abdominal compression (he said they don't have to be full-length compression), and tbh, I have never done any of these things.

I asked why I would have to add salt when my tilt showed hypertension, and he said it would make me thirsty and want to drink more. I found this statement to be suspicious. I'm also concerned about adverse long-term health effects of eating so much salt. I already eat as much of it as I want, I can't imagine adding more.

I almost feel like, if I'm going to do these tests again I might as well go to a place like Vandy or something?

Most of my symptoms are in my head, they have never been with my heart, so I don't think I have classic POTS. I have a lot of trouble switching medications. It takes a loooong time for my brain to adjust/readjust, and it's one of my chief complaints. I feel "weird" in the head when I change anything. When I try explaining that to doctors, they don't get it, but I don't know what other terminology to use.

He also prescribed Losartan, which I think I might go ahead and try.

What do you guys think?

[Guest ANCY]

Sounds like you have a lot going on right now! Switching Drs can prove difficult with the varying oppinions about POTS and tests and treatments. I have run into it a few times but not to the point your describing. I hope you are able to decide with your dr what is best for you and they can come up with an appropriate treatment.

I agree that exercise is crucial but don't think it is necessarily a cure all for Dysautonomia. I have tried the Levine protocol and at the time failed miserably at it.(Spent half the exercise time passed out because of my low bp) I hope to try again in the near future as my blood pressure has improved quite a bit over the last several months. I know I will have to work up to it though and not just start with the full program. If your interested in the research behind the program here is a medical journal article about the study.

http://onlinelibrary.wiley.com/doi/10.1113/jphysiol.2012.233858/abstract

Don't give up! I pray things will improve for you soon. God bless.

[sue1234]

I get what you say about the "weird in the head". That is one of my most debilitating issues. Sometimes I feel like my brain is swollen or in a vice, but I have no headache or anything else with it. It makes me feel "floaty", no drive, less cognition and more. When being upright, I do get the peripheral pooling and the increase in heart rate and blood pressure, but the head thing is with me almost all the day, every day. In fact, it was really the first problem I had when POTS hit 9 years ago.

[Anoj]

I'm just wondering when or how enough exercise will be enough for them. I'm trying to determine whether their expectations are off or whether I'm just being a grump. I keep starting over at Square One with all of these dudes.

[Anoj]

I've also read that you're not supposed to do the salt/water thing with hyper.

[sue1234]

I personally don't take in extra salt. I do eat salty foods everyday, though. But I don't over salt by any means. I've read a few studies that really, really salty diets can contribute to stomach cancer, so I'm not going to force it.