POTS, Not Pans

~ KJ

Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.

As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.

It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.

What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.

I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.

So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.

But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.

The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.

But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.

Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.

I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.

I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.

POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.

So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.

There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.

Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.

What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.

It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.

I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.

It’s another diagnosis I didn’t need.

14 thoughts on “POTS, Not Pans”

  1. My daughter was diagnosed with POTS 3 years ago at 17 years old by a cardiologist. They wanted to have more confirmation and did a tilt table test at the mayo clinic and it was also positive for POTS.
    Getting an answer means no more searching but sometimes getting an answer just doesnt make you feel any better.
    If I may suggest e-lyte. You mix a cap full in 8 oz water and drink that. It will keep your blood pressure more stable. My daughter is on a betablocker to keep her heart rate from going to 180. It still gets elevated. But she has had vitamin deficiencies and many vagus nerve issues.
    I’m here if you want to bounce any ideas around. Not many people know about POTS I have found and it can be comforting to talk to someone who has experienced it. I’m really sorry you are having the bp and hr issues. Staying very well hydrated also really helps

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    1. I’m sorry about your daughter.
      I’ve been reading a lot and looking over support groups online, and almost everyone is on some kind of beta blocker, but my cardiologist is adamant against it. I’m not entirely sure why, other than his reason that I’m young.

      I agree about many people not knowing about POTS. I’ve read some disheartening stories from people who aren’t even understood by doctors. I’m not looking forward to that if it happens. It’s already frustrating when I tell people I have low blood pressure — they look at me and automatically assume the opposite.

      I drink Gatorade. I use the powder so I can dilute it more, because I’m not a fan of the taste of any of them. And the medication I’m on seems to make me drink more, so hopefully that won’t be an issue — I know I haven’t been the best in the past about drinking enough fluids.

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      1. I honestly don’t know how i feel about the betablocker. It does lower bp even more so she has to up her salt intake. And i am not convinced it works that well. It is supposed to help with anxiety too and it may be slightly calming. But she is only 20 so I don’t know how I feel about it. If you are comfortable with your cardiologist and the suggestions then that is just fantastic. I hope you keep getting the support you need from the doctor.

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  2. Hi, chiming in on POTS too, well not that specifically, but your intuition that it may be related to your trauma.

    It is already accepted scientific knowledge that early life trauma is linked to epigenetic changes (meaning that the gene itself is intact but the way it works has been semi-permanently altered by an external factor) which result in an inflammatory state. This is thought to be the basis of the increased rates of autoimmune disease and other conditions linked to inflammation (which also includes depression and some forms of heart disease) in those with a trauma history. It can be difficult to separate out exact causes because lifestyle factors such as smoking can also contribute to epigenetic changes.

    One recent piece of research shows that some (not necessarily all) POTS is due to switching off of the manufacture of a particular protein due to epigenetic changes. None of this says that there is a direct link between trauma and POTS, but it seems a reasonable possibility. Unfortunately the current level of scientific understanding on this doesn’t translate to actual treatment yet, but at least you know that there are valid reasons why the things that have happened in your life might relate in a very concrete way to your current medical problems.

    You might find this link useful as a starting point for more info on dysautonomia and POTS, especially the patient info page:
    http://www.dysautonomiainternational.org/index.php

    Hope that is helpful.

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    2. Thank you for your input, and I agree.

      There’s a lot of things in play that could have led to my health issues. Trauma, smoking, substance abuse, eating disorder. It all has an effect.

      Interesting research, though. As I read more about it in time, I’d like to learn more about the “science” aspect of it all.

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      1. I’ve just started to dip my toe into the water of depression-inflammation-epigenetics myself. Even with a medical background a lot of it is above my head. Would you like me to send you a link if I come across anything that I think might interest you, or would you rather not at the moment?

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  5. Oh KJ, I’m sorry.
    A few years ago I started getting similar symptoms. Passing out – I passed out in the student commons, passed out in my weight lifting class (before I had lifted any weights – I was just standing listening to the instructor), etc. My heart “fluttered” all the time. Fatigue, nausea were constant. I was very dizzy. No one could figure out what was wrong. My symptoms don’t sound nearly as bad as yours, but they were still making it difficult to do school, orchestra, etc.
    I ended up at the Mayo clinic doing a tilt table test. I was right on the edge of a diagnosis – they ended up saying that I had (have) a mild-ish form of POTS. I’m supposed to drink tons of fluids and eat lots of salts and electrolytes. That’s helped to some degree – I know that if I don’t, the symptoms definitely worsen. That, combined with fibromyalgia (what do you know? another nervous system condition! you can’t tell me there’s not a link to trauma!!) ended up being my problem.
    Yours sounds worse than mine, for sure, but I have a friend whose sister has really bad POTS (can’t do much of anything it’s so bad) and she went to a POTS clinic also at Mayo. She learned tons of strategies to deal with POTS, spent a lot of time with other people with severe POTS who could relate, talked about how to live an “outside life” with POTS, etc. Overall it was extremely helpful for her. I’m not sure if you could do something like that, but it could be a resource to look into.
    Thinking of you. xx

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    1. Thank you. And I’m sorry about your diagnosis as well!

      I’ve heard of POTS clinics, but there aren’t any in my area. I found a few online support groups, but nothing more than that.

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