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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. 

Debbie's Life in a Not so Nutshell


edriscoll

By Debbie Henrie
May 2004

I have had medical problems most of my life.  I can remember as a child missing a great deal of school due to stomach aches, sore throats, and other various aliments. In third grade I broke my arm, had a large juvenile abdominal polyp removed, and got scarlet fever.  This happened all in the space of about two months.  I got car sick every time we went anywhere and was very small and underweight for my age.  In third grade, I wore a size six dress.  At age two, while a sitter wasn't paying attention, I got into two bottles of baby aspirin and ate them all.  I was on a ventilator for three days, and the doctors said I wasn't going to live.  When I did live, they said I was going to have irreversible brain damage.  I kid with people now that that's my problem.  However, sometimes I wonder.....

In the 4th grade, I had severe stomach problems.  I vomited at least two to three times a week and always had heartburn or an upset stomach.  When my mom finally took me to a doctor, he told her I was an attention seeker, and it was working.  That was the first time I heard that, but it certainly wasn’t the last.  Therefore, my mother decided the only way to stop me from this bad behavior was to force feed me laxatives every time I complained or threw up.  I couldn't do anything about the vomiting but, believe me, I stopped complaining.  I would have diarrhea for months, and I'm sure I was dehydrated most of the time.  I suffered from vertigo even back then. My sister fainted quite often, and she was provided more attention.  She seems to have grown out of it, and has had no problems in her adult life except for autoimmune disease, but she has no symptoms of POTS.




       
As a teen, I could not keep up in P.E. or any sports.  I never had any stamina.  I couldn't believe the energy that kids my age had.  I was always plagued with fatigue.  No matter how much I slept, I was always tired.  However, I went to school and worked a fulltime job starting at 14.  I married right out of high school and went to college to study nursing.  I went to school five days a week, eight hours a day, and then worked two ten hour shifts as a waitress on the weekends.  I can remember being at my parents’ house and falling asleep during dinner and my face landing in my plate! 
       
We moved after graduation to a small town in Idaho.  I got a job at the little 15-bed hospital there.  I was so exhausted I could barely get to work.  They would call to see if I would work, and I would beg my husband not to answer the phone.  He was not an understanding person.  He said if I wasn't so lazy and worked more I would feel better.  So, I worked more and felt worse.
       
I became pregnant at 21, and that's really when I noticed a lot of weird symptoms.  The fatigue was unbearable, all my joints hurt, I was so anemic, and I was always lightheaded.  I noticed that often my heart beat too fast, but I attributed it to the anemia.
       
After a very stressful and painful divorce, I got down to 75 pounds because of my stomach bothering me so much.  I hurt everywhere, was always dizzy, and everyday I thought I wouldn't make it through work.  But, I got up every day and forced myself to go. 
       
After I married my second husband, I did well for a while until we moved to Spokane.  I believe the stress of the move, plus my husband’s inability to get a job, flared up everything I'd ever had in my life.  I was working at a large hospital on a cardiac floor, and it was very stressful.  I went to four or five different doctors, but they said I had too many symptoms to have anything but psychiatric problems, and was offered antidepressants.  I politely refused and realized I really was crazy. One day at work, I was talking to another nurse, and she said she had all the same symptoms.  I was shocked.  She recommended a new doctor just starting his practice.  I was skeptical and very nervous.  He was beautiful and wonderful, and he is still my doctor after 19 years!  He diagnosed fibromyalgia, but he ran a number of tests to rule out other things.  He said I was not crazy, but I had a disorder that can drive you crazy.  Finally, I had a diagnosis. 

He put me on a TCA to help with my frequently interrupted sleep patterns, but after a few weeks, I noticed that my heart was always pounding.  I went in to see him, and he immediately weaned me off it.  My rate slowed, but we discovered after that experience that there were a lot of meds out there that caused me to have tachycardia.  We steered clear of them.
       
In the early 90's, I was diagnosed with possible
Meniere's Disease and placed on a diuretic.  It is the first line of treatment for this disorder.  I asked the neurologist if I needed a potassium supplement.  He said the dose was so small, and it would be impossible for it to affect it. Well, after two doses my potassium was less than two, and I was headed for a cardiac arrest.  I couldn't even take a k+ sparing one without needing IV replacements.  So I just lived with Meniere's Disease too and dealt with the attacks when they happened.  We were discovering I had very little tolerance for most drugs.  My doctor started giving me ½ to ¼ the usual dose of meds.
       
In 1996, while on a blood mobile run, I was doing a history and suddenly my heart started pounding, I got hot and sweaty, and I thought I was going to either pass out or throw up.  Someone took me back to the blood center, and my BP was 180/100 with a pulse of 180.  I have never felt so terrible.  I went to the doctor, and he thought it might be a fluky thing, but he tested me for pheochromocytoma. It was normal, of course.  I started having these episodes all the time.  Always the same, pressure in my throat and head, BP skyrocketing, nausea, and then after about 1/2 to one hour, everything calming down but leaving me completely exhausted.  I got an event monitor, and it just showed sinus tachycardia and pac's.  The doctor put me on three different meds I didn't tolerate, and then he tried atenolol 12.5.  I felt much better except I was even more fatigued and found myself waking up at night feeling like I hadn't taken a breath in five minutes.  But it did curb those awful attacks, so I just dealt with it.
       
In the fall of 2001, I started becoming very short of breath with the slightest exertion, and was having a lot of breakthrough tachycardia. I really felt awful; I had to cut back on my hours. I decided I was just fat and out of condition, so I bought an elliptical machine to lose weight and get in shape.  That was in November.  In March 2002, I was still only doing three minutes a day on that darn machine.  I got so short of breath and tachycardic, I just couldn't breathe.  I went to see my doc, and he started what became every test known to man on me.  I had a thallium treadmill which showed ischemia. This led to a heart cath that showed normal vessels.  My ejection fraction was 80, which is on the high side.  I did a cardiopulmonary treadmill, and it was discovered that my heart rate at rest was 120, but one minute after starting the treadmill, it was 190.  The doctor said stop.  He told my doctor there was something wrong with my sinus node.  That I was not conditioned, but it would be impossible for me to get conditioned.  They decided I had Inappropriate Sinus Tachycardia.  Then on to an electro physiologist, who actually was the first to really discuss in depth autonomic dysfunction.  I had never heard of it, and my internist wasn't very familiar with it. 

I had a stress and non-stress echo which showed hypertrophy from having so much tachycardia and HTN, and a mild mitral regurge.  I had a tilt table in February 2003.  Although it was negative, my heart rate shot sky high, as did my blood pressure.  So, I've never fainted.  This drove the cardiologist crazy, because he said everything pointed to POTS, but I was never syncopal or even pre-syncopal.  They decided I should have an ablation, because my heart was already starting to suffer from the prolonged tachycardia.  I did not want to do this at all, and I had a very bad feeling about it.  But the cardiologist, my doctor, my hubby, and my gastro all said it was the way to go.
       
I worked a 14-hour day on March 17, 2003.  I had a 6-hour EPS and ablation on March 18, 2003, and I have never worked again.  The ablation only lasted 10 days.  I have constant arrhythmias now including PVC's, which I didn't have before the ablation.  I got disability on my first try.  My blood pressure is now considered malignant hypertension, and they can't get it under control.  I have severe emotional swings, and there are days where it takes all I've got to get up just so I can go lay on the couch.  I started looking up everything I could on dysautonomia.  However, it is difficult to find a lot of information for people who don't pass out and have very high BP's all the time.  I called NDRF and they sent a ton of information.  My doctor, bless him, poured over it.  He sent me to a nephrologist. All four or five of my docs agreed that I was way too complex for anyone in the region I live in.  The literature, unfortunately, said ablation is almost always contraindicated in people with my symptoms.  Oops, it's the only way my body can compensate.  So, they all contacted Mayo and requested I be seen.

Mayo rejected me because I have chronic fatigue.  Dr. Robertson at Vanderbilt is looking at my records now and believes I have baroreflex failure.  We are hoping to get me into a research program there.  I am following his protocol for now.  I have been diagnosed with orthostatic tachycardic intolerance, severe reflux and poor motility.  I have Barrett’s esophagus from all those years of "make believe" stomach aches.  I have lost over 30 pounds since November because my esophagus no longer contracts like it's supposed to,  IBS, colitis,
Meniere's, vascular collagen disease, FMS, malignant HTN, arthritis, and hypertrophy of the left ventricle.  At this point, I know my time is limited, but I would really like to get into Vanderbilt because baroreflex failure is very rare.  My doctor believes I have many overlapping features of dysautonomia among other health problems.  It would be nice to know that my suffering, if researched, could help someone else, as it is probably too late for me.  That would give me the faith to believe there is a reason it has happened.  Gosh, and that's it in a nutshell....



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