Diagnosis (part one) : "your labs are fine drink more water"

Let's start at the beginning.......

The last week of April in 2022 I was at a party with my friends and I felt very light headed and passed out. I woke up super confused surrounded by a bunch of people. After that episode, I felt pretty crappy but figured I must have been super dehydrated or something. Well, days and weeks started to go by and I had a lingering sense of dizziness and lightheadedness everyday and basically felt crappy all of the time.

My first step was my neurologist I had seen for years for my migraines. They told me I needed to drink more fluids and take medication for my headaches. After a few more weeks of feeling crappy, I went to my primary where again I was gaslit and told to hydrate more. I went back to the neurologist the following week where they told me that it was vertigo and to take start vestibular therapy. 

Weeks of vestibular therapy and testing went by and I wasn't feeling any better so I went to the neurologist a third time. This time I had a nurse that saw how awful I was feeling and could sense how frustrated I was. She decided to give me extra attention and took my blood pressure in a few different positions. She noticed that I had pretty significant fluctuations in my blood pressure and her and the doctor referred me to a cardiologist in June. Finally, I felt like I was getting closer to my answer. 

The cardiologist started me on blood pressure medication and ordered some scans and blood work. The unfortunate thing many POTS patients go through is having all labs come back normal and knowing that something is very wrong. All of my labs at the cardiologist came back fine and once again I was told "you need to hydrate more". After about a month of still feeling awful I messaged my cardiologist and told him I was still feeling no improvement. He ordered me a "tilt table test" which I would have the first week of July.

Come back for part 2!

 

P.S. I do not blame any of the doctors that missed my POTS diagnosis. In fact, according to Dysautonomia International, the average time of diagnosis is anywhere between 11months to 5 years. This illness is very often misdiagnosed as anxiety, vasovagal syncope, dehydration etc. That is why I am trying to spread awareness so that others may get answers and start treatment as soon as possible! 

https://www.dysautonomiainternational.org/page.php?ID=180