New member, seven year road to dx

[PANs]

Hello,

My name is Amy, I am twenty three.  I have been diagnosed with POTs and epileptic seizures. I have been an incredibly active person my entire life, but have slowly felt it become harder and harder to do almost anything without feeling total exhaustion. I would run, swim, mountain bike, play sports, and even took martial arts for many many years. POTs has changed my life in a lot of ways, though it didn't just show up for me. I have had symptoms of POTs since I was a small child, at least six. While being diagnosed with ADHD, the EEG showed I was having severe migraines, but I never complained of them. I would complain of vision problems (blurry vision, trailing images/palinopsia, vision blacking out), stomach cramps and ulcers, swelling and cramping in my legs, feeling tired and achy, etc. All of the usual symptoms of POTs. I was basically shrugged off as wanting to get out of chores, school, etc or told it was my imagination.

However, when I was fifteen I came down with mono, and from then on the symptoms became intolerable. I began passing out almost daily. I felt sick and weak. I went to several doctors and they all said I was fine, gave me IV fluids (which I find ironic now) and sent me home. I've had doctors straight up call me a liar, attempt to send me to psychiatric hospitals for "conversion disorder" and "psychogenic seizures." I've had a doctor let go of me when I could barely stand in an attempt to see if I was faking it (banged my head on the floor and seized because of it). I'm sure everyone has had their bad times with doctors, but it still frustrates me. I was tired of hearing it, and refused to believe it was in my head. I stopped looking and just dealt with it. The passing out later started triggering my seizures and I was beginning to have them on a daily basis.

It wasn't until I was 20 that my doctors actually started looking into it more. I was in phsyical therapy after being in the hospital for two weeks from status epileptics (back to back seizures). The right side of my body wasn't working and I had lost a lot of my right peripheral vision and had severe speech issues. He noted that my feet were turning blue purple and sent me to get it checked out. I was tested for everything AGAIN and sent back. I was really just ready to give up.

I had just moved and I was seeing a new neurologist and was eventually referred to a clinic in Bartlett, TN. It took ONE appointment to have my answer. A twenty minute test. That's it. I was diagnosed with POTs at 22 after seven years of suffering from passing out, seizures, pain, and just feeling like trash. I have been on medications since April of this year, and I am already feeling a significant difference in my health. I'm down to one seizure and month! 

I wanted to meet people who were in a similar situation as me. It's hard to talk about the frustrations of POTs with people who think it's no big deal. I get "you don't look sick" and "but you get to stay home all day and do whatever you want." I hope to find that here as well as some better ways to improve my health.

[EGorman]

so glad you finally have your answer! I went through a lot of the same things: seizures, speech problems, passing out, etc. Unfortunately , I didn't have a good support system until I met my husband. Even my parents thought I was faking and told my siblings so. It was so embarrassing!

I am just glad that even though I have no treatment plan because there are no doctors in my area, I at least have a name for all the trouble! Dysautonomia (specifically Paradoxical Parasympathetic Syndrome). All it took was going to a chiropractor for one of my many many headaches, who asked me about all my other symptoms (which I was loath to divulge, not wanting to seem like a hypochondriac). He actually took me seriously, sent me to a neurologist for an ANSAR test, and that was it! I had my answer! 

Just out of curiosity, was that the test you had done as well?

Well, I'm glad you are doing better! Or at least at the beginning of it!

[PANs]

Glad that you also received an answer!

And yes! ANSAR was the test I had taken. Seems so simple for the amount of trouble it took to get this far. But yes, it is embarrassing looking back. I'll be honest I'm a bit bitter with some people, but I'm moving forward as I feel better.

[DizzyGirls]

Great to have you here!  Think you will find that there is an immense amount of knowledge within this group!  They are like family!  You never have to wonder if they are believing you or not.  They been there, done that, and back!  So glad you found some answers.  It does take an inordinate amount of time to be diagnosed, doesn't it?  My daughters are always telling me that I expect too much from the doctors.  Well, I figured that if they went to school that long, shouldn't they know some of this stuff??  I mean, I would imagine some of their mothers would be awfully disappointed if they knew 5hey went to school for that long and were missing all of this!  Well, anyway, welcome!

[PANs]

That was my thought initially, and it still frustrates me. However, I have to remind myself that there are so many things to learn in medicine even in one person's specialization. No one can learn everything. The body is very complex, and in truth POTs shows so many symptoms that cover so many different organs that I suppose it would be hard to pin point it at first. Also consider it was recognized in 1993, and in my opinion that's fairly new. It's hard to stay updated with everything as medicine advances so quickly these days. I try to understand, but I agree it's hard some times.

[dancer65]

Just wanted to say hi and welcome ! Glad you starting to see improvements after being diagnoised.