I’ve been toying around with this topic for quite some time. POTS/dysautonomia is something I live with on a daily, almost minute to minute basis. It is probably my most debilitating chronic illness I have. The symptoms seem to always be shifting and changing. I have done a lot of research and was intrigued to find out that the symptoms I’ve had since early teenage years that were always blamed on Mitral Valve Prolapse Syndrome, turned out to be dysautonomia issues.
Looking back, it all started in middle school when I would have issues breathing and often felt faint and/or passed out. I was barely able to participate in gym classes and other exercise was not possible. I was told it was anxiety or all in my head. It was especially bad on hot, humid days. When I look back, I realize all of those symptoms are still with me, but even more pronounced.
One of my newest symptoms is the switch from always sweating to try to regulate my body temperature to not being able to sweat almost at all. This presents a whole new slew of needs and I find that I overheat more often than ever before, which was a lot to begin with. So, I use fans, cooling pads, and some great things like Dr. Chilly Rings and Chilly Cheeks.
I have found the best solution is to try to stay as active as possible. Regular exercise, even a short walk makes a difference and allows the symptoms to be much better. There are times that nothing but bed rest works and during these times I have to protect myself from passing out and getting injured.
Mobility aids are a huge part of my life as they keep me safe from passing out. I use a combination of mobility aids including a large rehab style power wheelchair, rollator, as well as my favorite right now-my Zeen. Often I get asked why I have so many devices, and my usual answer is that my needs change on a regular almost hourly basis. Additionally, not every device is right for the job or needs. I cannot take my large power wheelchair in a car or airplane and I usually need more support than just my rollator. My Zeen is slowly finding its way into rotation, even when I leave my community.
Other things that I do to help mitigate symptoms is to stay hydrated and add salt to almost everything. The salt keeps my blood pressure high enough that when I stand, it doesn’t bottom out causing me to pass out. I have tried a lot of different products, but my favorite is Buoy Drops. They can be added to almost any drinks; sometimes they change the taste, but they do work. I also take medications to keep my heart rate lower than it naturally runs (I have a rapid heart rate)and sometimes take other medications that raise my blood pressure as well.
In addition to medications, salt, and mobility devices, I depend on compression products to help prevent blood pooling. I have decided that if I have to wear compression socks, I’m going to make the most of it, so I wear great socks, mostly from Crazy Compression, but I wear others as well. It’s become a little bit of an obsession and I love finding fun pairs. I try to post pics of new socks as much as possible. I also wear Jelliebend compression sleeves for my abdomen, which has the added benefit of helping my hip pain. These are not your usual uncomfortable abdominal binders but a wonderful material that is friendly to people with sensitivities to seems and such.
There is nothing scarier than having a racing heart, passing out, or not knowing what is going to happen next. It is a constant battle of “Is this symptom new and needs to be addressed or is it something I just have to learn to deal with.” It has been said that POTS/Dysautonomia has the impact on your health in a very similar was congestive heart failure does. Meaning that it becomes a very large part of your world.
I have learned to make the best of my diagnosis and take the lessons it teaches me to heart. Sometimes that means slowing down, sometimes it means sucking it up and getting out there to exercise, and other times it means to simply Let God do his thing. I am not sure what will be next in this adventure, but I am ready and I know the next steps will include a wonderful four legged service dog to help.
For now… I will remain positive, but continue to take the time my body needs to keep going strong…
