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Ideas and opinions expressed in Personal Stories belong to each individual author and are not necessarily those of the Dysautonomia Information Network. Personal Stories are in no way a substitute for professional medical advice, diagnosis or treatment. Readers should not try any treatments discussed in Personal Stories without first obtaining a physician's approval.

Barb's Story 

By Barb
March 2002

I am a 55 year old female who led a pretty normal healthy childhood. Two incidents in my late teens preceded the onset of mild to moderate symptoms which have lasted through much of adulthood. Around age 17+, I fell off my horse and was unconscious for a few minutes....since I fell backwards when the horse lunged forward, there may have been a mild whiplash injury to the neck. At age 19, I became ill with mononucleosis and missed several weeks of college. It was after that that I began to notice significant symptoms. Those symptoms included (but are not limited to) lightheadedness/unsteadiness, focus and concentration difficulties, memory difficulties, intermittent nausea and IBS, and environmental sensitivities.

I noticed over the years that symptoms were worse in Malls, when I had to stand still in lines, in church (esp. when I stood to sing), during or towards the end of meals, etc. I developed coping skills that included fidgeting, leaning on walls or other available stationary objects, sitting down rapidly if I felt dizzy, elevating my feet, breathing deeply, keeping cool, etc. I generally felt fine if I was totally supine and could never understand why I felt so bad when I was in a standing position.

There were a few times when I felt noticeably better and all seem related to hormonal issues. I felt better while on the birth control pill when I was first married and between the births of my two children. I also felt much better during my two pregnancies. With regard to the pregnancies, it is possible that I felt better due to increased blood volume (I believe that there is an increased blood volume of about 33% during pregnancy).

With regard to blood volume, over the years medical personnel always had a very hard time drawing blood from me or finding a vein to set up an IV. Either they couldn’t find a decent vein to begin with or if they did, it would either collapse or they might only get a partial vial of blood out of the vein. So, I do believe that low blood volume has been a factor in my problems. In the Fall of 2000, I had a blood draw done and was amazed that the technician had no trouble finding a vein, but did have some trouble stopping the blood flow afterwards! In fact, when I took the band aid off on my way home from the doctor’s, the band aid was quite bloody. This would have been inconceivable before. I am not sure what has increased the blood volume, but it could have been a number of factors (Midodrine, elevated head of bed, cervical collar that I wear, etc.) but at least the increased blood volume has been a factor in my improvement over the last year.

In spite of the mild to moderate symptoms of much of my adulthood, I managed a mostly full life without medications until several years ago. About 5-6 years ago, I started to notice additional symptoms such as numbness in my lower legs and left foot, increased instability, increased lethargy and almost a narcolepsy-like symptom in the afternoon, and increased fatigue and concentration problems.

Almost 2 years ago, I noticed a dramatic decrease in my ability to eat much food in a sitting. I would feel hungry but would feel full after a few bites of food. After that began, I experienced more and more frequent spells of severe dizziness and near syncope. In Feb. 2000, I experienced some episodes of passing out which included slurred speech, so I ended up in the ER a few times. I also experienced severely dry mouth and increased thirst. Workups showed a normal heart, no regular diabetes or diabetes insipidus, no thyroid problems, etc. etc.

My PCP sent me to a facility where they could do more testing, which included a tilt-table test. It showed a heart rate increase of about 50 BPM upon HUT (head upright tilt) and a couple of minutes later, my BP crashed to about 50/30 and heart rate to about 40. Other autonomic testing was done as well. I was diagnosed with Postural Tachycardia Syndrome and Neurocardiogenic Syncope. It was a relief to at least have a label for this weird disorder! I was started on a beta blocker (Propanolol 40 mg. BID) and that seemed to help substantially for about two weeks. A little over two weeks into treatment, I awoke one morning very dizzy and unable to get upright. My SUPINE BP was about 75/50 and I was unable to get upright to get a BP without passing out. My heart rate was also low (in the 30’s and 40’s). I called my doctor at that time and he said to discontinue the beta blocker which I had already decided to do! Since then we have tried beta blockers on two other occasions at much lower doses and they help for a short time and then build up in my system and crash my BP and HR, so they are not a good choice for me for long term therapy.

I have had a number of MRI’s of both the head and the neck over the past year and a half. The only abnormality on those MRI’s is some cervical stenosis (compression) between C5-C7 in my cervical spine and some brainstem compression as well. I will be having surgery to decompress the areas of stenosis in the cervical spine in November of 2001. I believe that at least a part of my problem lies in this area for the following reasons: (1) I had long used a coping method of supporting my neck with my hand if I was standing or with the headrest and a pillow when driving or in other ways (supporting my neck seemed to reduce my symptoms); (2) Moving my head increased symptoms; (3) wearing a cervical collar significantly reduces symptoms; (4) I know a number of other people with symptoms and diagnoses similar to mine who have benefited significantly from these surgeries; (5) I know a well-respected neurosurgeon who reports on the significant improvement of his colleague’s daughter through this procedure and he is impressed with the work of these doctors. (6) From what I have read, I have a congenitally small canal and foramen magnum to begin with and the further narrowing due to degenerative bone spurs occurred at the same time as I experienced a worsening of symptoms. (7) Most of my symptoms occur when I am vertical, so I think that gravity may play a role (i.e. I already have a smaller then normal foramen magnum, and some tonsillar herniation indicated when I am lying down during an MRI scan. I believe that when I stand up, the effects of gravity cause increased tonsillar herniation and therefore much greater brainstem compression, which leads to significant symptoms).

Additionally, I believe that immune system dysfunction may contribute to the problem in the neck and brainstem area due to an inflammatory process. (i.e. when I am exposed to something that I am sensitive to there is an inflammatory reaction that may cause some brainstem swelling which could further narrow the space and cause further nerve compression).

Prior to August, 2000, I spent a lot of time in the hospital due to dehydration and passing out. I have not been hospitalized since then due to some measures that I have taken. The two most important measures , I believe, are the wearing of a soft cervical collar and some dietary changes. The collar stabilizes my neck thus reducing the degree of nerve compression. Dietary changes include the elimination of all dairy products, all gluten containing products (wheat, rye, oats, barley), and beef. Additionally, I limit simple carbohydrates, high fat foods, and artificial additives and colorings. There is some scientific evidence especially for the elimination of the dairy products as the protein in dairy (casein) has been shown to increase symptoms in a significant number of people with these conditions.

I also take an antihistamine to help reduce histamine levels as I have learned via Johns Hopkins that histamine dilates blood vessels (something that will lower blood pressure and is, therefore, not a good idea for me)! Johns Hopkins recommends aggressive treatment of allergies in people with these syndromes.

Other measures that I have taken that seem to have helped are the supplement ginger to reduce nausea (that is pretty well eliminated at this time) and digestive enzymes with larger meals or meals that are higher in fats and proteins.

I am much better then last year, but remain pretty disabled. I am hopeful that the surgery will further reduce symptoms for me and can add to this story after I go through that process.

Feb. 2002

To update the above.......I had surgery on 11/29/01 with Dr. Heffez in Chicago. He did a partial Laminectomy from C5-C7, removed bone spurs and fused the vertebrae with titanium rods and screws. He said that both vertebrae were “extremely mobile.” Post surgical pain meds caused me a lot of problems primarily related to lowering my BP too much, so I discontinued them as soon as possible (after consultation with my docs).

Symptom improvement since surgery includes reduction in shortness of breath problem, significant reduction in nighttime dry eyes, more able to walk but only very short distances, more able to stand for short periods, reduction in blurred vision problem, and less fatigue. I can now take a bath unassisted and have reduced my Midodrine dosage. (Midodrine is designed to constrict peripheral blood vessels and help keep BP elevated). I also no longer need my surgical grade compression pantyhose but still wear low grade compression socks or knee high hose.

March, 2002

The shortness of breath symptom that was gone after surgery seems to have returned but to a lesser degree. Also, the dry eyes seem to be back (also to a lesser degree then prior to surgery). So, while there have been improvements from surgery that are very important to me (it is nice to take a real bath unassisted), I remain pretty disabled. Prior to surgery, I mostly managed with sponge baths and an occasional regular bath assisted by my husband or daughter (but those baths were shear torture as I was extremely dizzy and nauseous).

I remain unable to drive a car, walk unassisted, or hold a job. Prior to becoming severely disabled by this, I worked full-time in a professional position. I believe that further treatment will get me back to a more functional status, but it is a long and costly road!!

One of the most frustrating parts of this disorder is the lack of knowledge, in general, by the medical profession. Also, because many of the symptoms mimic some anxiety disorders, patients are frequently misdiagnosed with an anxiety disorder such as panic disorder. And even in those doctors that are knowledgeable, there is still much to be learned as most of the topnotch doctors find these disorders challenging to treat, at best. We desperately need funding to increase significantly research on these disorders as well as to educate current physicians and med students as to the basics of what is currently known about these disorders.

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Julie's Story

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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So That's Why I Used To See Stars ... 

By Kate
May 2002

I am a 30 something fit female who is a nonsmoker. My father had low blood pressure but no symptoms. When I was in my early 20s, I worked and exercised but sometimes (about once a year) would have strange symptoms of getting dizzy, feeling faint and seeing stars. It was just always hanging over my head, plus I have always been shaky in the morning upon rising... I thought it was iron deficiency and took a multi-vitamin with iron and was always surprised that my blood work showed up fine. Doctors have always been impressed with my rather low blood pressure, convincing me it was a good thing. I thought so too...

In November 2001, I came down with a nasty flu virus which left me with asthma. For 3 1/2 months I had to stay at home while recovering (believe me, not breathing well is a very scary thing) and had to use inhaled corticosteroids. Sometimes the corticosteroids made my heart rate fast, so you can imagine how surprised I was when, after getting and staying off the medicine once I was cured, the occasional fast heart rate continued. 

I did not take my heart rate very often prior to that, except while resting. It has always been between 60 and 65 bpm at rest. However, now it is especially bad in the morning when I stand up - unless I have a tall glass of water before rising, it goes to 120 bpm just from standing! And to think that I am an otherwise healthy and thin martial artist! 

I contacted a cardiologist via the internet (yes, I know it's not the ideal situation, but I had so many doctor visits while suffering from asthma that I really needed a reprieve from those doctor's appointments!) To make a long story short, the online cardiologist informed me that, if my heart was ok, it sounded like I was experiencing low blood pressure symptoms. 

I did more research on the Internet and came across this POTS website, which has been a blessing to me because I have all of the symptoms of POTS!!! Bending over makes me dizzy, raising my arms over my head might make my heart rate fast, and standing up in the morning or standing up from a chair too fast are very bad news!!! At the moment, I am trying to get off coffee and seem to have things under better control as I have been drinking lots of water and consuming salt. The tall glass of water does seem to be an immediate solution whenever I forget to stand up slowly. Of course, the day does get better as you progress, but from now on, I will be sure to carry a very large bottled water with me wherever I go...

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Chiari Malformation (A Mother’s Story)

By Jim and Chrys Hochstetler
November 2001

Jeff was totally disabled, wheelchair-bound and unable to attend high school due to an undiagnosed condition. We had been to 40 different doctors, driven many miles to such places as The Cleveland Clinic, Columbus Children’s Hospital, Medical College of Ohio and The Mayo Clinic. One group of cardiologists decided a pericardiectomy was the solution, but the stress of that surgery only worsened his condition. Labels such as Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and dysautonomia, became diagnoses of exclusion as doctors gave up looking for a treatable cause. Some were convinced that the problem was “all in his head."

Brain/spine MRIs had revealed the presence of a Chiari Malformation, the herniation of the cerebellar tonsils down into the spinal canal. This anomaly had been detected in 1996, six months into Jeff’s illness, and was obvious on two subsequent MRIs, but doctors saw it as an insignificant finding and chose not to tell us it was there.

After reading about the possible link between this deformity and Jeff’s condition, we finally asked a local neurologist if Jeff might have this malformation. When he confirmed the presence of a Chiari Malformation, he was quick to add that it was not responsible for his illness, and called it a “red herring.” But parental love leaves no stone unturned in the search for a child’s wellness. After nearly four years of complete debilitation, we prayerfully sought the opinion of Dr. Jon Weingart. We had found his name on the Internet, as one who surgically corrects the condition with some pretty remarkable outcomes.

Taking our very sick 17-year-old son, along with MRI films, on a nine-hour van trip to Baltimore was more than a little intimidating. We had no idea how this top-notch neurosurgeon would react to our speculation that perhaps the Chiari Malformation was the culprit in our son’s "mystery" illness.

Dr. Weingart was the first doctor to ever show us the abnormality on the MRIs. After meeting with us for barely thirty minutes, he concluded that Jeff might indeed benefit from the decompression surgery. “As sick as he is, and as obvious as the Chiari is, I believe the surgery could definitely improve the quality of his life. I never try to persuade anyone to have this surgery, but in your son’s case it would be wrong not to do it. He at least deserves the chance to get well.”

On Oct. 15, 1999, Jeff underwent a suboccipital craniectomy, C-1 laminectomy with bovine dural patch. The post-op pain was very intense, but the pain management team at JHH was superb in giving him the much needed relief. Dr Weingart told us that improvements would be extremely slow, and in fact there may not be any for at least two to three months. But even while still in the hospital, we began to see slight improvements in Jeff’s condition. Hands and feet were warm for the first time in four years, and his eyes, which had been very drooped, began to open wider.

Four months after the surgery, Jeff began to take a few steps during his physical therapy session. The therapist's comments indicated that Jeff’s muscles were beginning to show signs of improved tone and increased strength. His weak, frail voice grew stronger, and lights and noise were once again tolerable. Heart rates and blood pressures normalized. He began spending more time out of bed, as his energy level increased. He progressed from wheelchair to walker to forearm crutches to unassisted walking to treadmill exercise. There were tears among the therapists, who having once assisted with passive range-of-motion pool therapy, were now witnessing restored health to his lifeless body.

It has now been two years since the surgery, and Jeff once again has a life. He drives, takes walks, rides his bike, and has friends. Having missed all four years of his high school brought about the tremendous task of somehow making up those credits. Since he no longer fit in the age group of those students at school, he elected to make up those years through post- secondary options at the local Ohio State University Academy. Amazing as it may seem, Jeff is now ranked number “one” in the senior class due to his academic achievement at the college level. His greatest desire it to have the opportunity to attend a reputable college, and get an education that will allow him to be of service to others.

Words are inadequate to express our heartfelt gratitude for Dr. Weingart’s skill and compassion. He saw what other doctors did not see, did what others would not do, and gave hope when others gave up. By having the courage to perform a surgery that was somewhat controversial, because he felt in his heart it was the right thing to do, a young man now has restored health and hope for a future.

Thank you, Dr. Weingart for being God’s hands in fulfilling Jeff’s scripture of hope: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

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