Despite the COVID pandemic, summers are already a tough season for my physical health because of the heat and humidity. I usually have more flare-ups in the summer because I become overheated/dehydrated which causes an imbalance or dysfunction in my autonomic system(involuntary system). I prefer to use dysautonomia, the umbrella term for my actual diagnosis of Postural Orthostatic Tachycardia Syndrome or POTs.
I also acknowledge that I have not posted much on this blog about anything really. It has been a tough time for me to come to write about myself.
Throughout this summer my flare-ups have been pretty consistent—I have been experiencing quite a bit of dizziness, shortness of breath, palpitations, shakiness, falling, fainting, weakness, body pain, fatigue, and GI issues like nausea, vomiting, and diarrhea. Most of these symptoms happen on a daily basis but are mild. Flare-ups are when those symptoms are severe and disabling, like when I fall because of the weakness and dizziness or faint.
However, for about ten days I was doing pretty well with mild to moderate symptoms. Until last Saturday when I was driving home from the lake. I was feeling weak, shaky with shortness of breath. I had been out in the sun but had cooled off and was drinking my water. I was about halfway to my apartment when I felt very lightheaded with palpitations and increased symptoms. I started to have tunnel vision, saw stars and my head started bobbing. I had to slow down and pull over. I was so groggy and confused.
When I pulled over, I took some deep breathes, drank more water, and took one of my medications to see if that would help. It helped enough to get me home safely but I was so completely exhausted and fatigued from the symptoms, heat, and the drive home.
Sunday I was also feeling so lousy all day with dizziness, fatigue, weakness, shakiness, shortness of breath, body pain, and chest pain. I rested a lot of the day while drinking water and felt somewhat better.
I woke up at 2am on Monday morning feeling shaky, dizzy, groggy, exhausted, fatigued, nauseous, weak, in pain with an extremely upset stomach. I had the shits and intense vomiting with acid. It made my throat and mouth burned afterward. My throat was sore into the next day. I was dry heaving after I threw up and had a lot of trouble catching my breath during that time. I have never felt it that painful before. My heart rate obviously had increased but it went up to 150bmp.
After emptying my body of all fluids—I went to lay down and my heart rate did not want to go down, which made it difficult to sleep. I was also continuing to feel extremely weak, shaky, in pain, and dizzy continuing to today, as I write this.
I messaged my doctor. I heard back from his nurse saying he is out of the office for the next eight weeks and that I can see the other doctor. There are only two doctors at the U of MN that specializes in POTs and I have seen them both—I don’t like the other one. I doubt there is anything they can do to ease my symptoms in any way.
The nurse suggested an increase in meds and helped me get a refill on two of my meds. I’m hoping this will help. But have doubts that it will. I also have to increase water and salt in my daily routine as well.
The device nurse that watches my heart rhythm/rate on my implanted heart monitor called and left a message saying I have been having early beats/PVCs during these episodes when I recorded them on my remote. I am interested in what my doctor has to say about this but I have been having these for the past couple of years.
I’m planning on keeping a close eye on how I am feeling and writing down any big flare-ups and increased symptoms to talk about with my cardiologist at the next appointment when I get that scheduled. I have been feeling extremely overwhelmed, anxious, exhausted.
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