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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. 

Learning Patience and Resourcefulness: My Slow Steady Recovery From POTS


By Janis Bell
October 2004

The following story discusses many alternative treatments. The Dysautonomia Information Network is in no way endorsing or promoting these treatments.

Since 1994, I had mild orthostatic intolerance. My primary diagnosis was chronic fatigue syndrome, and I only failed the tilt table test after being given an injection. Then in January 2000, I went to Arizona on a retreat and was advised by the MD there to undertake a one week fast of fruit and vegetable juices. Although I felt great during the fast, three days afterwards I began to develop a bad case of orthostatic intolerance (POTS). By the end of seven weeks I was depressed, tired, anxious, irritable unable to think and unable to walk or work. I tried to avoid sitting and standing as much as possible. It was so bad that I had to hire a home health company to help me make dinner. Other times I would sit in my desk chair and wheel around the kitchen.

I already had a strong yoga practice and had begun teaching at this time. I discovered that, although I could not even sit for meditation without getting dizzy and having my heart start pounding in my chest, I could still do yoga. The upside-down poses like headstands and shoulder stands really helped me to regain a sense of balance as they brought blood to my head and reduced or eliminated my pounding heart. I also spent more time relaxing then I ever had in my life.


This is what I would do when my POTS symptoms started acting up:

First, I would lie down flat on my back and start breathing deeply. I would concentrate on expanding the lower ribs out to the sides and filling the back with breath. Then I would move into the "legs up the wall" pose (Viparita Karani) with a folded blanket or bolster under my pelvis. This pose raised my legs above my pelvis, draining the pooling blood from my painful legs. I'd stay in this pose at least until any increased pressure in my head had disappeared.

Afterwards, I would move into a supported shoulder stand, often starting on a sofa or a chair. I would gradually lower my head and back until I was resting on my shoulders. Shoulder stands are supposed to be done with the cervical curve in the neck, but I found that by extending the neck and pressing against the back of the occiput (where the skull and neck meet), I would begin to relax and my breath would naturally deepen. Most of the time I left my legs leaning against a chair. Sometimes, as I felt refreshed and energized, I would take my legs fully into a vertical position, using the muscles in my upper arms to press down against the floor and help lift my torso. I also found that a headstand worked miracles when my POTS symptoms would start flaring up. I let go of my fear of being judged by others, and I would go into a headstand while waiting in airports and other public places. The pressure on my head seemed to help a great deal. I don't know why, but I know that it worked for me.

As I used yoga to restore myself to balance as needed, I also explored nutritional approaches. I tested positive for milk and gluten sensitivities. I then eliminated them from my diet, having believed that my body reacted to milk and gluten by developing insomnia and feeling stressed out. I felt healthier by eating fewer sugars and starches and more healthy fats. I believe I eventually made good progress by following an alternative medicine program designed to detoxify the nervous system and eliminate neurotoxins. I suspect that neurotoxins are a principal cause of POTS, but I have no proof.

I also worked with an alternative medicine program to balance my endocrine system. Through it, I was taught that my cortisol levels were defunct. When light was shined in my pupils they couldn't hold the contraction for even a second. So I began to support my adrenals with a diet I believed would help, and with glandulars and hormone precursors that I believe enabled my body to make adequate amounts of cortisol at the right time, as well as making healthy amounts of estrogen, testosterone and progesterone. I was getting closer to recovery, but I still could not stand on my feet for more than 30-45 minutes without getting tired.

I had visited numerous MD's and received special stockings. I had refused to take SSRI's because I did not like the way they made me feel. So I began to study natural medicine.

I got my NMD degree and had a test on my neurotransmitter levels. I found that I was low in serotonin  and epinephrine, while high in norepinephrine. I started taking natural supplements to raise serotonin and gaba. I also worked to help my norepinephrine and epinephrine levels through diet and supplements.

I'd greatly improved by the first neurotransmitter retest. I haven't done a second retest yet, but my moods are great, I'm sleeping better, and I rarely feel the fatigue in my legs that used to be my constant companion. I'll send an update when and if I get my norepinephrine and epinephrine levels balanced properly.

This past spring, a few months after working to balance my neurotransmitters, I decided to try something novel since I had exhausted nutritional approaches and was still unable to exercise. The beautiful warm weather had me longing to be outside again, taking walks in the country and riding my bike as I'd done before the fast in 2000. So, I took a chance and drove to Southern Ohio to explore an alternative treatment, sound healing. What a great blessing this was to me!

The people there spent more time with me than any doctor ever had--about 8 hours at my first appointment. They tested my voice, analyzed it on their computers, discussed my symptoms and treatments, etc. They finally put together a program of tones and had me listen to them a few times in the evening before sleeping, and the next morning as well. They retested me in the morning to see if I was improving, and sent me home with a box that generated my "personal healing tones".

The first day home I felt myself detoxing (slightly achy, flu like) but the symptoms would go away if I didn't listen to the tones. So I was able to control how rapidly I detoxed. The next evening I walked into the kitchen at 10 p.m. with the intention of making gluten-free cornbread! I had that much energy in the evening and, fortunately, had the good sense to restrain myself and go to bed instead.

Two days later, I was visiting my parents in West Virginia, and I went on two hikes. I had to rest often, but I still hiked up a mountain for over an hour, across a ridge for 30 minutes, and then down again. I was not a basket case when I got home. Since that time, I have been continually working with new sound tones as my body shifts. I resumed biking and I had my first active vacation in years this August when my husband and I went kayaking and hiking in the Catskills.

I still find that I get a little more fatigued than I'd like, and that I get an ominous pre-POTS feeling in my legs if I stand when I'm tired and hungry at night. But I've measured my blood pressure and pulse, and I'm no longer getting the shifts that led to my POTS diagnosis. Now I can lead a somewhat closer to normal life, and I'm happier than ever! I hope everyone reading this can heal fully. Never give up. Trust your instincts. And empower yourself with knowledge about your body and mind.

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