POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME

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Personal Symptoms

Aside from the “more-known" symptoms of POTS (dizziness, tachycardia/brachycardia, varying blood pressure, fainting, extreme fatigue) I have – like many POTS patients – a number of other symptoms.

Some of these were pretty alarming until I either scoured the internet long enough to find someone else experiencing something similar or a doctor was able to explain what was going on.

Please note that these are my personal experiences, interpretations, and what I've found that helps me. I am NOT A DOCTOR, so please read my information as such and consult with someone who knows what they're talking about.

 

Vasoconstrictions: are the narrowing of veins and arteries which can be caused 'naturally' or as a side effect of some medications which are used to help raise blood pressure by tightening the blood vessels.

I take a medication that does just that, but rarely experience these. In fact, when I do, they always seem to be directly related to a POTS flare-up. Personally, vasoconstrictions happen in the underside of my arms, just below the wrists. They typically feel like a small popping sensation, or a very, very tiny electric shock – like someone dragged their feet on their carpet and touched the vein. Although they don't last, or come about very often, I usually roll my wrists and move my arms to encourage the blood to pump through the narrowing vessels

 

Variant Angina is, basically, a vasoconstriction that happens within the heart. I experience these on occasion, and they have lasted between 5 minutes to 5 hours. Vasospasms of these coronary arteries are uncomfortable, alarming, and painful. I, unfortunately, haven't found a way to ease them other than doing my best to rest and calm myself down -- which doesn't help when I'm no where near a place where I can lie down.

 

Inability to regulate body temperature: "Thermoregulation is the ability of an organism to keep its body temperature within certain boundaries, even when the surrounding temperature is very different." (from http://en.wikipedia.org/wiki/Thermoregulation). Thermoregulation is part of homeostasis, controlled by the autonomic nervous system -- and we all know how well the ANS functions in people with POTS.

There have been a number of times where I have gotten too hot/too cold and people can notice a huge shift in my demeanor. I have been told I get very quiet, pale, slow-moving, and I "check-out" mentally. This is because I have to, literally, focus all my energy on cooling down/warming up. My husband has found a succinct, and accurate, way of explaining what happens which, in so many words, is my body is going through a form of shock.

  • Cold: Unless it is the middle of summer, you can usually find me wearing a couple layers of sweatshirts while wrapped up in a blanket. Even during summer, though, I can be seen carrying a sweatshirt around because I often have trouble adjusting to air-conditioned buildings. (I've learned that no matter if it's 100 degrees out or 10, always have layers!

    A couple times I've gotten so cold that my body had to resort to about 20-25 minutes of constant shivering to try to warm up. They best way I've found to adjust to this is to sit next to a friend or a family member, or -- quite often -- I have my dogs lie on either side of me. Feeling the body-temperature of another being, in my mind, gives my body a "map" of what a comfortable temperature should be. Often, when I just try to use blankets, I get too hot or it takes me too long to warm up -- whereas sitting next to someone almost feels like my body absorbs their heat and adjusts more accurately.
  • Heat: I have an extremely difficult time adjusting to the heat and have not found a way to deal with it other than to, pretty much, stay inside from June through August. My body has such a hard time with it that I've been on the verge of hyperthermia after being outside for only a few minutes.

    (Please, PLEASE take the time to read through this article to recognize the symptoms of Heat Exhaustion and Heat Stroke and what to do. Heat stroke is an extremely serious medical condition so be proactive! Like my Mama always said, an ounce of prevention is worth a pound of cure!)

    However, if you're anything like me, you just have to get outside every now and again. So here are a few things I've found which make it bearable (in short increments):

1) Drink an obscene amount of water before, during, and after you are outside.

2) Avoid the heat of the day. I try to take my dog for a short walk in the early morning or after the sun has gone down.

3) If you can, carry around an umbrella (preferably one for UV rays) -- the ambient heat still is bothersome, but at least the sun is off your skin.

4) Try little fans connected to a spray bottle, or even just a spray bottle; the water helps slightly cool the skin.

5) I have heard cooling vests are very helpful, though I have not done  this personally. 

 

  (image from http://yogicameron.com/articles/2008/11/sweating-and-air-conditioning/)    


Indigestion/Nausea/Vomiting: Recently I've started having little bouts of dry-heaving and/or vomiting. For a while there, they were happening a few times a week for a couple weeks. However, after doing some research and changing a few of my routines, they have (thankfully!) decreased somewhat.

In addition to eating around the same time everyday (this helps your body find some semblance of a routine), eating small meals throughout the day has been the biggest help. Here's why: when you eat anything, blood moves toward the stomach to help digest the food. The more food, the more blood is needed to digest -- which means less blood that's pumping through out your body. I'm not sure of the mechanics, but I believe vomiting is some odd way of my body trying to cope with all the blood in my stomach and return to homeostasis.

I have also recently found a correspondence between my nausea/vomiting and my blood pressure. My BP is usually 100/60 or lower if I feel nauseous or vomit (which backs up the idea that blood is rushing to the stomach after a meal). However, on separate occasions I have found my blood pressure to be very low (80/50) when I haven't eaten a meal recently, and I still wind up getting ill.

As such, I've been doing my best to eat smaller meals frequently as well as upping my salt intake and keep hydrated. Hopefully these things help my digestion/low blood pressure and keep me from getting nauseous.

 

Fibromyalgia: is one of many conditions that can coincide with POTS, dysautonomia, Chronic Fatigue Syndrome, etc. Fibromyalgia, for lack of a better way of explaining, is constant pain in your muscles and joints. The only way I've been able to explain it to my husband is this: imagine the pain you get when you hit your funny bone really, really hard. Your arm is in so much pain is almost goes numb, right? Now, imagine this pain over your entire body. That, in my experience, is fibromyalgia.

Some days it hurts badly enough that a gentle hug from my husband is painful. There have been some nights where I am unable to sleep because of the dull pain. Often times, I tape up my fingers because the gentle pressure seems to help my hands. More often than not, I am in constant pain and just try to do what I can.

I was officially diagnosed with Fibromyalgia in January 2010 and refused the suggested medication. (This is my own personal interpretation of my pain level and pain management.) Instead, I take a prescribed amount of ibuprofen as needed. The most significant thing I've found that helps, is yoga. This, of course, can be difficult to do with chronic fatigue, so I have to be very careful in what I decide to do, and how often. But the stretching and low impact strengthening has done immeasurable help with my fibromyalgia -- so much that if I haven't been able to do yoga for a week or two, my symptoms get noticeably worse. (photo from http://www.freewebs.com/fibro23/)

 

Weight Loss/Gain: Because POTS can leave people immobile for such long periods of time, it is possible for patients to gain weight because of the illness. However, the majority of people with POTS are very thin, as it's hard to keep weight on when the heart is working so hard (POTS can also can cause a loss of appetite). Because of the nausea that comes with large meals, and the typical weight loss, it's even more important to eat small meals throughout the day.

Obviously, POTS patients don't often have the energy to make meals/snacks continuously. I keep "easy to get to" food around the house, often grabbing small packets of salted peanuts, boiled eggs and salt (which I boil when I have the energy and then keep in the fridge -- so I can just grab them when I'm too tired), granola bars, a handful of nuts, bananas, pretzels, etc. Trying to get a balanced diet can be difficult, but it is possible! I do my best to get a variety a food with bunches of sodium thrown in!

 

The Fun-House Effect: is a term I made up for an experience I have yet to find in the "medical world". I'm not entirely sure how to explain it other than it being a sudden (within seconds) combination of dizziness, vertigo, increase of gravity, and loss of balance.

I had this happen one night while I was driving on the interstate and it was just about one of the scariest things I have ever experienced; I, honestly, felt like I was driving through rotating, fun-house mirrors. My body began listing to one side and I could not correct it; I could not judge the how far or close the surrounding cars were; my vision began to 'morph' and melt' -- not fade like what happens with syncope -- but rotate and drop. Staying within the lanes was almost impossible but, thankfully, few other people were near-by, and I managed to pull off on the side of the interstate and waited until I felt OK to drive again.

Before, and since then, I get the Fun-House at very random points -- most of the time while I'm lying down and resting. Unlike the dizziness/the beginnings of syncope, which feel more prominent in my head, the Fun-House Effect affects my entire body, so much that I feel as if I am melting off the side of the world.

 


 

 

   (This page is also always under construction the more symptoms I get/recognize!)

 

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