I read your story and I have been scouring the internet for any info I can find on Postural Orthostatic Tachycardia Syndrome (P.O.T.S.). I was diagnosed at Mayo clinic 3 weeks ago after 10 months of desperation and feeling so awful I just prayed to get through the day at hand. It is amazing how many doctors I went to in 10 months – 2 ent’s, 3 neurologists, 2 cardiologists, and then even a gall bladder surgery in the midst of it all.
The worst symptom that was intolerable was the head pressure and dizziness. My mom had to start traveling with me on road trips for work because I could not drive more than 20 minutes or so because my eyes became so strained. My carreer is in financial planning and I prayed just to get through each appointment, feeling that my head may explode or I may have a seizure.
The secondary also unpleasant symptoms were gastrointestinal issues, like fast heart rate when eating, pinching feeling in my stomach as if I lost my breath for a second, and acid reflux.
The scariest part is that doctor after doctor had no answer. I was told I had a seizure disorder; I had inner ear problems, etc. All doctors did was throw medications at me without finding the problem.
I made about 6 or more Emergency Room visits within 10 months and really, I started to question myself thinking maybe that I was crazy!
Then I went to the Mayo clinic, initially did not seem to go well. I was put through psychiatric tests and told all my labs were normal and that I may have anxiety-induced symptoms. Then the autonomic test came back. During the tilt table portion, my supine heart rate of 80 went up to 145 when tilted.
This was my second tilt test and was the only abnormal test out of all the MRI’s, blood work, Cat Scans, X-rays, EEG’s, EKG’s, EMG tests, etc. Two abnormal tilt tests. If my first physician did not order this test initially, I would still be lost in the round robin of doctors. I know this is a difficult diagnosis to come up with so my mom and I were on a crusade to find anything that may help. The Mayo neurologists called me after the visit and said I had P.O.T.S. The doctor who discovered P.O.T.S. asked me to join a research study and I am going to see him again in a month.
Now that I have a proper diagnosis, there is hope again. Finally, I can go out with friends and be an active, productive person again. I can finally get through a day at my job. I have been on 25mg of Zoloft, one Florinef pill, 40mg Protonix, and 1 Levbid a day. My head pressure has mostly resolved and my only problem now is gastrointestinal issues with acid and spasms, and eyestrain at night. I still have body temperature issues, and still get short of breath and have a fast pulse when active, but now that the head pressure is gone I can at least think and work! Mayo proved to be the best doctor visit I had made and I thank God they properly diagnosed me. I still think I have more work to do to really feel normal again, but resuming social and household activities has been great. I actually cleaned my house this weekend after 3 months of being sedentary.
The worst thing is your friends begin to doubt you and then you doubt yourself. If you really have debilitating symptoms, you MUST aggressively pursue your team of doctors until you get an answer. You cannot give up and live life praying to get through just the next hour. There are doctors out there who listen and will find the cause, find one and stick with them.
Don’t give up. And make sure to keep a close group of people who love you and who support you.
Reader’s Personal Health Experiences:
Below are two articles you may find interesting:
Postural Orthostatic Tachycardia Syndrome: Patient’s report on causes, symptoms, and treatment
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