Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Postural Orthostatic Tachycardia Syndrome (POTS) as an installment in the “My Diagnosis” series.
Let’s start by talking about what POTS is. The diagnostic criteria is very simple: a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. The simplicity of the diagnostic criteria is very misleading. For me, this is the physical diagnosis that is the most limiting. My POTS symptoms have a greater impairing impact on my daily function than any of my other physical diagnoses.
I have secondary, neuropathic and hypovolemic POTS. This means that it is believed that my POTS is caused by another medical condition. In my case, my hEDS. It is believed that the flexible and lax blood vessels allow blood pooling in the lower parts of my body which cause or exacerbate the POTS. The neuropathic part means that I have neuropathy in my body that is believed to play a part in the autonomic dysfunction that contributes to the POTS symptoms that I experience. The hypovolemic part means that I experience low blood volume and low blood pressures as a result. This also contributes to the POTS symptoms that I experience. There are many types of POTS classifications that try to describe and explain the various symptoms and ways that patients are the same or different. There is no approved or universal classification system.
Having POTS means that I am frequently struggling with symptoms of dizziness and lightheadedness. These symptoms sometimes progress to actually fainting. That is a real challenge when I’m trying to work. Every time I stand up there is a chance that I will simply pass out because my autonomic nervous system isn’t regulating my heart rate properly. There are things that I can do to help reduce the chances of this from happening: I consume a high sodium diet, I drink a lot of fluids and I wear compression garments. These things help keep the blood flow going to my brain when I stand up.
POTS also causes me to have brain fog. There are times that I have impaired focus, memory and a difficult time processing information. This can make it impossible to safely function as a nurse. There are times that I have to call out because of this symptom. Most of my job is about being able to rapidly and reliably process information. People’s lives depend on my mind being clear. So, yeah, there are times that this symptom keeps me from working.
The fatigue is brutal. There is no pushing through it. There is no coping with it. There just is no energy to do anything and there is no compromising with that. This greatly limits the number of spoons that I get every day and it is very frustrating. It is the one symptom that I feel that I cannot bargain with or negotiate around. If there is no energy there is no energy and there is nothing that you can do about that. Sometimes this means that I am falling asleep while trying to complete tasks. Sometimes this means that I simply don’t have the physical energy to make my body move. But there is no way to work through or around it. Having energy is a requirement for getting things done. Without energy, nothing happens.
POTS causes pain. I get headaches because of the lack of consistent blood flow meaning poor oxygenation to my brain. I use oxygen therapy while I am resting to help with this and it does reduce the amount of head aches that I get. I also get palpitations which is the sensation of being able to feel your heart beating in your chest. Most of the time, it is just a sensation that is background noise in my life. It is like breathing. Something that is there, but nothing I really notice unless my attention is brought to it. But then there are times that it feels like my heart is going to burst from my chest. While I know that this is a harmless sensation it is anxiety provoking just the same. There are also times that the POTS causes me to have chest pain. This symptom is a problem because it can mask other cardiac problems. Getting it checked out every time is the wisest course, yet it is expensive and frustrating to have the people in the ED treat you like an idiot for having it checked.
These symptoms can make it hard to sleep which only makes the fatigue worse. Well, not sleeping well really just makes everything feel worse, but it is really hard to fall asleep when it feels like your heart is going to burst out of you like an alien chest burster. And the anxiety that accompanies these symptoms is also a factor in impairing the sleep. How do you not feel anxious when your chest hurts and your heart is trying to explode? Well, it feels that way anyway.
A common symptom of tachycardia is shortness of breath. That means when ever I am up walking around and my heart rate is up I am also huffing and puffing, struggling to catch my breath. I often feel like I am not getting enough air. What is really happening is that my brain is not getting enough oxygen because the blood is moving through at warp speed and nothing is being given the time it needs to hop off at the stations those supplies are required. This means that I don’t have a very good activity tolerance. I never have and I never will. It doesn’t matter how active I am, this will never improve because my brain will always struggle to get enough oxygen while I am active because my nervous system does not know how to properly regulate my heart rate.
Feeling hot, eating, strenuous exercise or having my period can make the symptoms worse. Just getting too emotionally excited can make things worse. Anything that triggers an adrenaline dump into my system can set off a cascade of symptoms because my body doesn’t know how to properly regulate the adrenaline response. This means that there are times that I wake up from a sound sleep with my symptoms flaring because I had an adrenaline response to something I was dreaming about.
Taking a shower has become a difficult task. It means standing and being in a heated place. That’s two things that will set off my symptoms. This means that in order for me to safely take a shower I need to use a shower chair and have a modified shower head so that I can constantly have access and control over the water. It also means that I need to take short showers. Then after my shower, I have to take a rest. Because even with all those modifications, I am going to feel like I had a complete work out.
I need to be mindful of my positioning because I experience blood pooling. This means that if I keep my hands or feet in a dependent position for very long they will fill up with blood. This means that they are not getting adequate blood flow. Once the old blood pools in it will limit how much new blood can flow into the area. Not to mention it will limit the amount of blood that is returning to the heart for use in the rest of the body. This is why my compression garments can be helpful.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!