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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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Julie's Story


edriscoll

By Julie Tremp
April 2002 

My name is Julie Tremp and I have been diagnosed with POTS.  I was diagnosed by Dr. Blair Grubb from the Medical College of Ohio in Toledo, Ohio.  I think the worst of it started in December 2000, although I believe I had symptoms in a milder form for several years prior to that.  

I know I was exposed to some chemical fumes at my place of employment in 1990.  I developed tachycardia, which was very difficult to deal with. 

I also had symptoms before in 1982, six months after my son was born. I was then diagnosed with mitral valve prolapse.  Since then, three other cardiologists have said I do not have mitral valve prolapse.  The tachycardia was brief in 1982.  Beta Blockers proved to be too strong for me at that time.

In 1990 however, beta blockers (inderal) were needed to control the rapid heart rates.  I also had a milder form of fatigue in addition to a balance problem.  The only thing that continued was the tachycardia---but the beta blockers worked for that and eventually I was able to lower the dose from 60mgs to 30 mgs a day.  I lived a pretty normal life until December of 2000; then the Bomb hit.  



It all started on December 5th after a dental appointment.  I had been having digestive problems for many years, but as I got closer to December they got much more severe. 

A week before my appointment, I was more anxious then I have ever been.  I've never been afraid to go to the dentist.  I was getting an impacted tooth pulled though. But I had had this done with my wisdom teeth without problems.  I felt like the anxiety was not in my control.  Still, I hung in there and had the impacted tooth pulled.  That is when everything started---the worst of it anyway. 

I developed tachycardia that night and went to the ER.  They sent me home with a diagnosis of sinus tachycardia.  Big deal, I knew I had that.  For four days I experienced severe panic attack like symptoms.  I had tremors constantly.  It became more and more difficult to eat.  I guess for about the first month or so I felt like the adrenaline was in constant flow.  I went to the emergency room several times.  One of the ER doctors gave me Ativan for anxiety.  I heard this drug was addictive, so I was careful to take it only when I was extremely bad.  As time went on, I lost around 25 pounds and became very weak.  The anxiety seemed to calm a little and the tachycardia was controlled by an increase of the Inderal.


However, the fatigue became severe and I developed low grade fevers which lasted about four months.  I was bedridden for about 4 weeks and lost my job as an office manager because of it.  My management duties had been impossible to keep up with.  I tried to go back to work in April but was replaced by someone else.  They offered me another position, but I knew I was too weak to continue.  They laid me off so I could receive unemployment. 

Everything was so crazy with my body.  I couldn't go to a store without losing my balance.  The floor felt as if it were moving under me.  I became sensitive to chemicals----especially cleaning fluids. I had been continuously exposed to fumes where I was employed.  They consisted of fumes from ink towel toxins and other junk, like fuel and oil.  I'm sure all of this aggravated things further.  

I slowly improved from April on.  I did not get diagnosed by Dr. Grubb until June of 2001 .  I had previously gone to many doctors ( Gastro, Neuro, Psyc, Internal, Cardio ) and was told many times that I needed psychological help.  Ironically,  the only one that believed I was ill was the psychologist.  None of my friends believed me and I lost many of them, but my family stuck by me and realized that something was really wrong.  Now, I have made many new friends.  It is now April 26, 2002 and I have a somewhat normal life on Wellbutrin, Inderal and Synthroid.  

I have had neck problems since a car accident in 1977, after hitting my head on the windshield.  I have noticed numbness and tingling in my arms and more difficulty in swallowing in recent months.  I have also developed some numbness in my lower legs.  An MRI has shown a bulging disk on C5 and C6. My MRIs are in the process of being sent to a neurosurgeon, DR. Heffez, in Chicago.  So off I go to another adventure.

December 2002 update: 

On May 14 and 15th of 2002 I went to Chicago to see Dr. Dan Heffez for testing. After all the testing, Dr. Heffez gave me the results. I remember one thing very clearly - he said, "you have a very bad neck - very bad". I really did not expect that at all.  Really - I was shocked! 

I'll tell you why. When I got into a car wreck in 1977 I never got the proper treatment. I think I must have brought up my neck pain to probably 5 different doctors over the years.  ALL THOUGHT IT WAS TENSION--You know--ANXIETY! (I must have had some HORRIBLE medical file following me for years - could have dated back to my childhood). So, through all these years I learned to live with it, and I became used to it. I thought maybe I was overreacting and was imagining the pain. I'd never connected it to the autonomic nervous system problems I was having. But as I looked back, it all started to make more sense. 

Dr. Heffez diagnosed me with two herniated disks on C5, C6 and C7. In addition, he diagnosed cervical stenosis, which I was born with. He also diagnosed a mild chiari malformation. I failed most all of the neurological testing. My cervical spine had severe pressure on it and was now also causing increasing numbness in my legs and arms. 

A normal space for the spine is 16mm to 20mm. I HAD LESS THAN 5MM – VERY SEVERE. Dr Heffez told me I needed surgery very soon. He said a mild fender bender causing any kind of whiplash could paralyze me from the neck down. He said it was a tragedy that I’d gone so long with such a bad neck. 

I believe that with such pressure on my spine, my body was not able to metabolize the chemicals I was exposed to at my old employer. My theory is that spinal stenosis plus chemical exposure could equal POTS.

I had surgery June 27, 2002.  The surgery took 4 1/2 hours. Dr. Heffez replaced the herniated disks with donor bone, fused 5,6, and 7 together, and added a titanium plate. It was quite rough coming out of the anesthesia, but after 18 hours or so, I was through the worst of it.  

Right after the surgery I was already showing improvement.  My hands and feet were warm. Most of the numbness was gone 2 weeks after surgery. I started to show improvement in some of my POTS symptoms - especially the poor balance.

My POTS symptoms are definitely milder now, and hopefully that will continue as time moves on.  My 3-month x-rays came back good. I do have considerable pain in my neck area, which I think is due to the bones fusing. It is so difficult to tell because my perception of pain is off due to going so long with it because the doctors would not take me seriously. Still, as of 12-02-02, I am healing and doing a world better than in December, two years ago.

 

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