Struggling with POTS

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One of the conditions that I’ve been dealing with—that I don’t often talk about—is known as Postural Orthostatic Tachycardia Syndrome, and it frequently co-occurs with the type of connective tissue disorder that I have. What this “syndrome” means is that, though I usually have a healthy resting pulse, when I stand it increases, often dramatically so. The effects that this can have and the list of symptoms that it causes seems near endless—and while my POTS isn’t as debilitating as it is for others, it does make an already difficult disorder sometimes seem an even more monumental task to cope with.

As an example, here is an incomplete overview from Wikipedia on just some of the most common symptoms:
• palpitations
• light-headedness
• chest discomfort
• shortness of breath
• weakness or “heaviness” in the lower legs
• blurred vision
• headache
• decreased concentration
• mental clouding
• extreme fatigue
• nausea
• near-syncope
• difficulty sleeping
• fluctuations in weight, memory
• pallor, or sweating

I experience every single one of those effects—most of them on a daily, continuous basis. And, this is despite the fact that I’m on a high dose of another difficult medication to control it. The medication itself also causes it’s own problems. While it does lessen the amount that my heart rate rises upon standing, it also causes my already low-normal blood pressure to fall quickly—and dramatically—along with it. This, ironically, also causes many of the same symptoms I’m on the medication to treat in the first place. Despite this, the medication seems necessary for the time being because, while it doesn’t prevent a large increase in my heart rate entirely, it does keep it from going as high as it often did without—and prolonged tachycardia (of any kind) can be hard on the heart, particularly with my disorder.

POTS is also a difficult disorder to navigate, as symptoms may be exacerbated with things like: “prolonged sitting, prolonged standing, alcohol, heat, exercise, or eating a large meal“. I seem to have to tip toe around it in order to help keep it controlled, but frustratingly, the path that I need to take to do so often conflicts with the things I’m supposed to do to minimize the effects of some of my other health issues. For instance, nearly every recommendation for helping someone with POTS (like increased salt and fluid intake), is the opposite of what I’m supposed to do to help stabilize my intracranial pressure.

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This was my pulse and blood pressure while sitting down.

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And this was my pulse and blood pressure shortly after, while standing up. My heart rate increased greatly, while my blood pressure fell just as much.

This can be a frightening thing to live with—the possibility of it’s effects worsening, hanging always over your head. That’s something that can be hard to ignore when you’re dealing with such prominent (and at times all-consuming) symptoms. I know that on the whole I’m lucky. I can still walk around normally without a wheelchair and haven’t begun to lose consciousness whenever I stand. That’s something that I absolutely know to appreciate with this syndrome. But—at the same time—dealing with all of the other ways it’s effecting my quality of life on top of a debilitating disorder can be difficult, and exhausting.

5 thoughts on “Struggling with POTS

  1. Hello Katie,
    just found your blog and i already love it.
    i was actually looking for cheap ring splints (80$ are crazy!) and i found your post from 2013 when you made your own ring splints, that’s such a great idea! can you remember how you bendt them apart?
    they keep moving back to the regular (key ring) shape…
    thank you so much, congrats to this helpful blog!

    Like

    • Hi! Thank you for the comment.

      I just used a pair of pliers, but I have found that over time the edge of the key rings started to push on the nerves of my fingers and became too uncomfortable to wear very often (which kind of defeats the purpose). I don’t know if maybe they aren’t bent to quite the right shape or if it’s just unavoidable with the key rings.

      I’ve been thinking of trying it again, but with actual round wire instead, as my fingers have continually worsened the past few years.

      It’s frustrating because I think they could really make a difference for my but I can’t afford them. But, many (or all) of the expensive ones that I’ve found are hand made so I figure it has to be doable.

      Like

      • Wow, thank you for your fast reply :)
        i think i’ll try using pliers, too,
        i already thougt about using those, but i don’t have any at home so i tried everything i have in my flat… unfortunately nothing worked really, i think i’ll take the rings with me to work and try to bend them during lunch break :D
        so you dont wear any (ring) splints at the moment? it definitely is frustrating, that they are so expensive… i’m only a poor student ;)
        the nerve thing sounds pretty annoying, but i’ll give it a try, maybe it will work for me.
        i think wire is either to bendable or too hard to bend… but give it a try and tell me if it works, good luck!
        or you might test the oval8 ones, the silver/metal ones are definitely more “pretty”, but if they reduce your pain (or the damage to your joints) it’s worth it, i’d say…

        all the best to you,
        Jess

        P.S.: i think i have POTS, too… blood pressure eg 87/48 pulse 104… definitely not normal (and i have many of the typical symptoms), but i don’t want to go to even more doctors…

        Like

  2. I’m sorry to hear that you’re struggling with POTS. :( Mine used to be a lot worse and its scary to have to worry about things like fainting in the shower.

    Do you know if its just from having to spend a lot of time laying down and resting? I had a lot of trouble with POTS symptoms after spending two years mostly laying in bed and taking a muscle relaxant. My cardiologist told me this was because my heart was deconditioned, and we discovered that aquatic physical therapy helped my joints enough that I could get out of bed more and quit taking the muscle relaxant. My heart still has a little trouble sometimes, but not nearly as bad. I did have to use Powerade to get through the aquatic therapy, though.

    I also discovered that my acid reflux medication was depleting my magnesium, so I started taking a magnesium supplement and that helped my heart a lot too.

    And last spring I accidentally gave myself really bad POTS for a few days by taking an allergy medication that lowered my blood pressure on top of two other medications that lower blood pressure as a side effect.

    Liked by 1 person

    • Hi! Thank you so much for taking the time to comment and for all of the suggestions!

      Unfortunately, POTS in relation to the disorder that I have occurs under the umbrella of dysautonomia as a whole, and is caused by the malfunctioning of the autonomic nervous system, not the heart itself. For reasons not well understood yet, in my disorder often the nerves that carry information from the brain and spinal cord to things like the heart and blood vessels just don’t function properly. I was still in school and participating heavily in sports when I first started dealing with it.

      The medication that I’m on for my intracranial pressure could absolutely be causing it’s worsening effects, but unfortunately for now I have no choice but to deal with it as I can’t not take the med.

      Liked by 1 person

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