Fiercely Independent Pam

Tag: POTs

  • POTS and Dysautonomia: My Daily Buddies and How I Stay Upright!

    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…

    a back view of my power wheelchair- is decorated with various stickers of places I've traveled, characters I love, and more

  • Health Update: A Setback or Reboot? My Latest Adventure

    A setback is just another word for reboot. I could say it is something negative, as it seems like everything is against me at times, but I am choosing to see it as an opportunity to reboot. That is, my cardiac rehab plan was going so well, but something unseen must have been wrong.

    Last Tuesday night, when I was getting ready to go to bed, I stood up from my wheelchair to place an insulin needle in my sharps container. I remember that I didn’t “feel well” aka, my blood pressure was dropping, and next thing I know, I was waking up on the floor. I was fairly confident that nothing super emergent was going on, but I had incredible pain in my hip, neck and back. I knew this meant that I needed to go to the ER and get checked out. So, I called the ambulance to help me get up and bring me to the ER.

    The ER ran scans of my head and neck, as well as X-rays of my pelvis. Nothing was out of the normal range for me, so they sent me home. I knew this fall would be a setback for my progress, but resolved to continue to trust the process. I got home around 1:30am and had a very uncomfortable night.

    The next morning, I planned on having a quiet day to recover. I made up my mind that I wanted to follow up with my orthopedic doctor about my hip. I was excited to get an appointment for the next day. Not a setback, but progress… My appointment was with a PA that works with my hip orthopedic doctor. He was wonderful but had unfortunate news- he was fairly certain that I fractured my hip and need to be completely non-weight bearing until I could get an MRI and figure out next steps. Another setback for sure, as if there is a fracture, I will require surgery!

    So, I am mastering transferring from my wheelchair without putting weight on my left hip/leg. This “setback” has reminded me of how grateful I am for my wonderful power wheelchair that gives me freedom, even in unknown times. I am also in a holding pattern, waiting for an appointment for my MRI, with several implanted medical devices, clearance for a MRI takes some time!

  • My Meeting with the Wizard: An Adventure in Dysautonomia

    I did it! I met the wizard- he came in the form of a Dysautonomia specialist at MUSC. (see here for more details)He met with me for almost a full hour. He explained how picky he is being choosing patients so he can do the most good. I felt lucky to be pat of the “unlucky’- sick enough to see him.

    We talked about my symptoms- I was glad to have organized all of them ahead of time. We also discussed previous diagnoses as well as previous testing, like my tilt table test in 2014. He seemed to know what I was going to say before I said it, especially in regard to symptoms.

    Then came the next steps: a skin biopsy for small fiber neuropathy, medication review and management, as well as a focused exercise plan to build up standing tolerance. All of this seemed to “click” with me as the wizard said it, especially the idea of small fiber neuropathy vs. dysautonomia.

    I have never heard of small fiber neuropathy before but it, not dysautonomia may be my culprit. It causes several issues with touch, temperature, pain, and even some bladder issues. All of this made sense.

    Regardless, he plans to do a full round of dysautonomia testing once he finishes building his “lab.” In the meantime, I’m to focus on my blood pressure, keeping a log as well as raising the threshold for medications(keeping my blood pressure a little higher than normal so that when I stand up, it doesn’t bottom out). Reintroducing some salt into my diet to keep me from bottoming out and beginning a focused cardio exercise plan that gradually introduces standing exercises.

    It’s a lot of work on my end, but I’ve never stayed away from hard work, and believe I’ve had the power all along, like Dorothy. Now I have learned that the Wizard isn’t just a guy making smoke behind a curtain, but a real human that has done his “homework” of sorts on the puzzling condition of Dysautonomia.

    Oh! and the best part is that the Wizard is willing to do virtual visits as much as possible, which is very exciting for me. As much as I love traveling in Cinderella’s Coach, I like not spending the money or the time to travel to Charleston.

    “You’ve always had the power, my dear, you just had to learn it for yourself.” — Glinda