A few years ago, I put myself through a summer of exercise, keeping an eye on my heartrate, and felt it was a big proponent in getting me from being bedbound to being able to hold a full-time job. As it always is with POTS, my health has fluctuated since, and—recently—my doctor suggested I try the POTS Exercise Program created by Dr. Levine.
For about four months now, I’ve been working with my doctor to get my medications balanced in order to try the program, but only recently have I thought of blogging about my experience. I know exercise is not a “cure-all” for POTS, and it may not work for me just as I have heard it has not worked for other people, so I can't promise what the content will be like. Especially since I would not be divulging specifics of the program per the request of Dr. Levine who “strongly [feels] that each patient undergoing an exercise program needs to be monitored by their health care provider regularly.” Which I found myself agreeing with more than I thought I would.
Now, if I were you, I'd be frustrated at a blog chronicling this and not giving details. When you have an illness like POTS, you want any specifics you can find. You want concrete steps in order to DO, to TRY anything to get better. I understand this completely. So I will do my best to give as much information as I can, without going into the details—I really don’t want anyone making an already complicated illness worse by utilizing this program on their own, especially with how extensive it appears to be., without guidance of a professional. Now, I also get the general wariness of doctors, too; I don’t have a lot of faith in doctors regarding POTS, but I do feel things are gradually changing over the years and more good doctors are stepping out. So I will provide a list I’ve put together of these doctors*, as well as provide information** for you and your doctor to get in touch with Dr. Levine so that you may look into the program together.
That said, I’m now at the “So why the hell would anybody read this crap then?” and, honestly, I don't know. But today came, the day after I went to the Center for the intake/stress test, and I’m already dsfjhksjer than I expected, and then the emotional and mental mind-fudgery started: Uh, I barely did anything yesterday and I feel like this? Are you %*#&ing kidding me? I’m totally screwed when I start Monday.
So, alas, here I am: writing a blog in Grinch pajamas (appropriate), completely exhausted after making myself a lunch, and—thanks to brainfog—unable to remember what frigging day of the week it is. (Thursday I think?) My friend told me that these experiences, thoughts, emotions, and frustrations might be beneficial for others to read. Whether that will be the case, or it will just be a place for me to vent, is yet to be seen. However, I *can* promise these series of blogs will probably be laden with f-bombs, various other bits of salty language, and stupid things I find funny to keep me from a breakdown. So, you have been forewarned, dear three readers of mine!
As I mentioned, I went to the intake yesterday and it was pretty straightforward. We went through the schpeal of how my symptoms present themselves, I told them what makes them worse (“Uh, pretty much everything we’re about to be doing.”), and they told me what to expect. They took my heart-rate, blood pressure, and pulse ox while sitting, standing, and standing after a few minutes and then I got on the recumbent bike. They had a paper with a scale for me to look at, something like 1 – 10, with 1-3 in blue (not much exertion required, could do this extensively), 4-5 in green (beginning to be challenged, but still able to continue, breathing normally, little to no symptoms), 6-7 yellow (audible breathing, still able to complete sentences, other symptoms occurring), 8-9 orange (can only speak one to two word responses, symptoms present, and 10 red (cannot continue want to curl into a ball now please thanks).
My PT would increase the resistance of the recumbent bike every couple minutes, instruct me to keep the RPMs at a certain number, and then ask me how I was feeling (using the scale if I needed to) while she took my blood pressure and heart-rate. This rinsed and repeated until I got to the orange when my wee little legs were basically just like “We revolt. We want back into our pajamas.”
The PT told me she would go over my vitals, and her observations from the recumbent bike, to come up with a good pace and heart-rate zone area that would allow me to strengthen and condition without going into the red exertion level.
Honestly, it wasn’t too horrible of an experience. Definitely fatiguing, of course, and daunting for sure, but it was nice to be able to take some concrete steps. Of actually talking to someone who was familiar with the condition. And to know that other people have gone through this in order to better themselves and their health. I didn’t realize I would feel this odd form of “camaraderie” with POTS warriors, and other people trying to improve their health (cardiac patients, CF, etc.) at the center, by just getting out and doing the intake. So while a lot of these blogs will probably be for me and my venting, I do hope it can be helpful to others—regardless of whether they complete the program or not.
**“Any healthcare provider around the world can contact Dr. Levine’s team in Dallas for this [program’s] information to use at their discretion with their own patients.”
Dr. Benjamin Levine and Team
Dianne Hendrickson, FNP-C
Tiffany Bivens, M.S.
Institue for Exercise and Environmental Medicine
7232 Greenville Avenue, Suite 435
Dallas, TX 75231