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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Nightmare, Will I Ever Wake Up?


By Lori
June 2004

It was the best year of my life.  I was a new homeowner who was married to the man of my dreams with a step-son that called me "Mom".  On top of that, I had a wonderful job working as an Ophthalmic Assistant for an Ophthalmologist, and I was enjoying playing volleyball, sky-diving, hiking, riding a bike, plus I had great friends and a wonderful family.

One month after we got married, I started getting dizzy and having rapid heartbeats. It felt like my heart was stopping and starting back up again.  I saw a physician who gave me a couple of test and said that there was nothing wrong with me.  He said it was all in my head, and it was just anxiety.  They tried to make me believe that with a little paxil and a good counselor I would be fine.

Things were getting worse, the multitudes of symptoms were becoming debilitating and making me very sick:

Inappropriate Sinus Tachycardia
Non-sustained Ventricular Tachycardia
High blood pressure
Dimming vision
Blurred vision
Body tingling, numbness, pins and needles
Muscle twitches
Muscle stiffness
Extreme stabbing head and body pains
Feeling of no oxygen in the air

These symptoms have been a part of my nightmare for almost two years now.  Some days are better than others.

I have been diagnosed and misdiagnosed, poked, prodded, invaded, questioned, opinionated, and told.   Sometimes I am believed, and sometimes I am not believed.  Friends have been lost and gained.  Every day I am tormented by this condition that they are now calling Primary Dysautonomia and told more will be revealed in time.  I am told that treatment is given only as the symptoms occur, and then I am told that I will be sent to another specialist that specializes in this condition in hopes some relief can be given.  I have also been told that this condition can either be a mild to moderate inconvenience in life or progressive and fatal.  “No one really knows,” is what I am told.

Accept it, take it one day at a time, and live the best you can is the advice I get.  I do my best with this, but some days are so depressing because the pain is so bad that all I can do is focus on getting out of it.

Every day I ask why?  What am I doing wrong?  What have I done wrong?  What is causing it?  Some days when I feel better I think I am cured and life will be getting back to normal, and then BAM another slap in the face, symptoms are back, and I feel like crap.

I struggle with this every day and only hope that it will eventually subside.  At this time, I really don't know what is going to happen; however, I know that everything in this world happens for a reason.  I am just grateful for this day that I have.

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