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Celebrating My POTS Diagnosis

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Having chronic health conditions is not easy. Sometimes the hardest part is trying to figure out what is going on with your body and how to fix it, more so sometimes than actually dealing with the illness. Going to doctor’s offices is quite common for somebody with chronic illness. Often you go the first time to figure out what is going on and they want you to come back for biweekly or monthly checkups to make sure you are doing well on the medication they gave you and/or to figure out another plan. If you weren’t exhausted before, you certainly would be after all the doctor visits. This cycle truly does get old, and if you are anything like me, you beg your spouse to just let you stay home instead.


Last month was one of those follow-up exams with an excellent physician I have been seeing who specifically treats ME/CFS, fibromyalgia and POTS. At my first visit he said clearly I was sick and I was a symptom away from meeting the criteria for all three of the conditions he treats. This was extremely confusing for me as they all seem to mesh into one big disease that doctors can’t figure out. What is truly wrong with my body? How can I fix it? That is all I want to know!

For the last three or so years I have been extremely light-headed while standing up. I have mentioned this symptom to my cardiologist as I have had yearly checkups for a heart arrhythmia I have. He repeated his advice of eating more salt, drinking more water and wearing compression tights or socks to help alleviate the symptoms. This is really good advice, even for POTS patients, but no matter how much water or salt I was taking in, I still experienced blackouts multiple times a day.

Just the other day I was reading a book on my bed while the kids were playing with their friends across the street. They all came rushing inside and so I slowly sat up, got off the bed and walked into the hallway, at which point I blacked out and couldn’t see the kids who were right in front of me, though I could hear them. It took me a minute to gain my normal vision and talk to them. This happens so often I have gotten used to the mechanisms I use to stop myself from truly passing out or falling down. It has become second nature for me to sit down often, usually in a reclined position, take a minute to walk after standing up, hold onto walls, furniture, etc. all for this purpose. Usually the blackouts end with a throbbing headache from lack of blood flow to my brain.

As I was lying on the exam table getting my blood pressure and pulse taken while lying down, I couldn’t help but imagine that the test to assess for orthostatic intolerance would come back normal. All my others tests have, I thought. Generally my blood pressure and heart rate, especially resting, are pretty low. The reading came back as 78 BPM for my pulse and my blood pressure read something like 117/78. I was then asked to get up and stand with my shoulders to the wall and my feet together about one foot from the wall.

Three minutes into standing against the wall my whole body was shaking and I felt like I would fall to the floor. I couldn’t use my normal mechanisms to cope with the orthostatic intolerance. The doctor told me my heart rate had climbed by 45 beats per minute and my blood pressure was now somewhere close to 140/98. The problem is my autonomic nervous system wasn’t regulating my body’s reaction to blood pooling, making it so blood wasn’t getting to my brain, causing the symptoms I explained. I don’t remember how long I stood on the wall, but I remember not feeling well and having to hold onto the doctor to get back to the exam table which was no more than a couple feet away from me. I collapsed onto the table and felt awful for the rest of the day.

When the doctor said there was no doubt about it that I had POTS (postural orthostatic tachycardia syndrome), my husband’s first response was, “We should go celebrate.” When you have chronic illness you understand that when you have a name for your health problems, it’s a step closer to victory. Our celebration ended up with him getting Chick-Fil-A for dinner because I needed to lie down for the rest of the night.

I have since been on a medication that helps retain the salt-water balance in my body called Fludrocortisone. The benefits have been amazing. I couldn’t remember if I took it one morning, so opted to not take it and I couldn’t believe how dizzy and lightheaded I felt. I couldn’t believe I had been living so long like that. I made sure to take the pill the next day as soon as I could. I still have a long way to regaining my health back and am making small steps forward, but I am grateful for doctors who listen, research and treat patients the way they should be. Maybe all the doctor visits aren’t so bad after all. Sometimes they even end up with a celebration!

I believe in you. I believe you can make miracles happen. And I believe that peace (true inner peace) is the answer.

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Thinkstock photo via kotoffei.

Originally published: July 27, 2017
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