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  • The Member Stories section of our site is a place where members can submit their own 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. 

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Dave's Story


edriscoll

By Dave
August 2001

POTS became my reality while I was finishing my last degree in college.  I would categorize the onset as sudden and slow. My first symptom was the inability to engage in normal fitness training.  I was heavily involved in triathlon sports and weight lifting.  Running became the first activity I was unable to perform.  Later, as the syndrome progressed, I developed several unusual symptoms:  numbness, increased and decreased sweating, inability to concentrate, fatigue, flushing after large meals/heat and difficulty with standing/walking.

Months later my doctor diagnosed me with an active mono infection.  This was a relief to me because it was a diagnosis I understood and felt I would recover from.  I rested  and assumed symptoms would abate.  Unfortunately they did not and things got worse.  My method of coping was to pretend I wasn't experiencing it.  I did not share what I was going through with my family or friends.

It quickly became something I could no longer ignore, and I began to get scared.  The doctor put me through a number of tests and procedures to check for a multitude of ailments.  He soon exhausted his knowledge base and began the typical suggestions that maybe it was all anxiety/depression.  I think this is when POTS became my biggest mental challenge.  I began to doubt my gut instincts that told me it was not just chronic fatigue or anxiety/depression. 





Anxiety was difficult to dispute because I was constantly anxious about what was happening to me and loosing my job.  Depression was also a reality, as I was mourning the life I once had and feeling mighty sorry for myself.  At this point, I knew I was going to have to find the diagnosis on my own.  A month or so after researching at the library I finally came across POTS and knew it was a perfect fit.

I learned to avoid the "crazy" diagnosis by leaving out some of the more unusual symptoms and reporting only major symptoms.  I brought in self-documented tachycardia responses to both sitting and standing  to a cardiologist.  I also brought in various research articles I found on POTS and pleaded for him to do a tilt table test.  He agreed with some arm-twisting and the diagnosis became official about a year or so after symptom onset.

I did not respond well to medications.  Side effects were too much for me at that point.  I researched and tried every herb I thought might be useful.  I eventually used only salt supplementation, exercise, and a majorly modified lifestyle.  I had to completely adjust at work by using a rolling stool and sitting for most of the time just to be able to get through the day.  At the end of each day, I felt like I had run a marathon.

I find exercise and salt supplementation to be most beneficial.  The muscular development of my body has given me back more orthostatic tolerance and energy than any drug has.  Exercise intolerance is very real for me, but I have learned how to adjust so I could workout, bike and swim again.  Discovering where the fatigue wall is with exercise has also been important.  There have been times, when I was bedridden, that I really needed to push beyond that wall to get back some orthostatic tolerance

Diet also seems to be very effective for me.  I have stopped eating sugar, yeasts, wheat, and dairy, which has maximized my energy and decreased bowel problems.  Grazing throughout the day instead of eating large meals has also helped.  My philosophy has always been to give my body the best environment to heal itself... be that with meditation, exercise, or diet.

I have learned many lessons the hard way, as there was not a lot of research on POTS at that time.  I also did not have a doctor who knew enough to instruct me on what to do or how to do things.  Finding the NDRF was one of the most helpful things for me.  It had others who were going through the same challenges, and I found good advice on how to manage the illness.  Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder.  I think a competent doctor who specializes in autonomic disorders is probably a better asset.  However, I have never had access to one of those doctors.

I don't think I will ever know what caused  my POTS onset.  In addition to mono, I also had a neck injury and was under a great deal of stress both personally and professionally.  I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle.  The pushing of my body mentally and physically, I believe, brought a return of POTS.  So, I have learned to surrender to my new life and look for the warning signs that I am overdoing.   

Today I am about to return to work after another neck injury and huge exacerbation of POTS.  I know great improvement is possible, as I have had it in the past and know others who are greatly improved.  Although I don't think there are any magic answers,  I know I have learned so many lessons from having POTS and it has made me a stronger individual.  In the words of MLK:  "The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy."

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