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I am coming to this discussion group hoping for some clarity. I am a 22 year old female who has had her life turned upside down for almost 2 years. I’ve spent every day since my first attack sobbing and begging for answers and for someone to believe me.
Here is my story.
December of 2016 I woke up believing I was having a heart attack. My heart rate spiked and I couldn’t breathe right. I started throwing up and got extremely dizzy. I went to the ER and they concluded it was anxiety.
Many episodes later, I have been into the ER seven times, seen a neurologist, cardiologist, and my GP numerous times.
The amount of tests I have had done is insane. I’ve tried wholistic medicine, had a spinal tap, tilt table test, multiple heart monitors, head MRI and CT, countless blood tests, and an ecocrdiogram of my heart.
They didn’t find anything.
Basically every doctor has yelled at me saying it is anxiety and to accept it. But how to do accept an answer that you honestly feel is wrong? I know my body, and I know that this isn’t anxiety...
Here is a list of my symptoms:
1. Fast heart rate suddenly (but not always when I am standing, sometimes sitting)
2. GI problems
7. Brain fog
8. Headache/head pressure
9. Joint/muscle pain
10. Extreme fatigue (especially when my heart rate goes very low...I will explain that in a second)
11. Random bruises
And the list goes on.
It all started with a fast heart rate that woke me in the middle of the night, and those were the episodes that happened for a long time. However, recently it isn’t a fast heart rate, but rather a slow one. Even when I’m awake it drops to like 48...
The lowest it has dropped to was 44 when I was sleeping. I went to see my cardiologist who didn’t seem concerned at all, but another doctor was. This is when I first heard about the condition know was PoTs. When reading into it, I was SO SUPRISED with how similar not only my symptoms were but the stories I have read about those who have it. The only thing that doesn’t line up is my now slow heart rate. However, I have read a couple of places that this can happen with PoTs, but I am not sure if it is true.
This is the interesting part though. I read that a lot of women notice that their symptoms worsen on their period. And I noticed that every time I have been to the ER, I was on my period.
I talked to a doctor about my pervious tilt table to double check to see if there was anything noted, and there was but it was very small.
Now I am wondering if this could be the answer I have been searching for. The light in all the darkness. I am wondering if anyone has had something similar, or has any input! The only thing that doesn’t make sense is my low heart rate now rather than high which causes me to be extremely tired and disconnected. My legs and feet feel so heavy all of the time and all I want to do is lay in bed because I feel like my heart can’t take it anymore.
I am begging for an answer, some hope, and soon a diagnosis so I can stop living in fear of dying at the age of 22. I have tried to be as positive and hopeful but when going through something this awful with no help or answers, how do you have hope...
My life changed in a matter of a single night and has taken away some of the best things from me. I’ve lost some friends, family, part of my schooling, work, and hope.
Can someone enlighten me on this?
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