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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. 

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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