Stories page 6

My New Son

By Melissa Zoepfl
October 2004 

This is a story about my son Mark. Mark is 11 years old and very bright. He started middle school this year and is in all honors classes and is taking 8th grade math as a 6th grader. He is also on a travel soccer team.

A few years ago, Mark's teachers suggested that he be evaluated for Attention Deficit Disorder--that he wasn't always well focused or organized. He was evaluated, diagnosed and put on medication. While he seemed a little better, he was still a kid who day-dreamed and needed a lot of reminding. A year or so later, a coach noticed that he was breathing hard when he ran and suggested he be evaluated for asthma. He was evaluated, diagnosed and put on medication. He seemed a little better, but he continued to be short of breath during activities. The doctors continued to adjust his medication, but he never had dramatic improvement. I watched him closely last spring at sporting events. It seemed to me that he really struggled to run. He had a pained look on his face and seemed to take a long time to get his breath back. He was clearly trying very hard, but he wasn't able to keep up with his peers on the soccer field. I asked our pediatrician if we should consult a cardiologist. I knew that somehow he wasn't getting enough oxygen, and if it wasn't his lungs failing him, maybe it was something to do with his heart. Our pediatrician didn't think it was time to do that, and he suggested we try adjusting the asthma medication yet again. We tried, but there was still no improvement.

Our insurance allowed us to go to specialists without a referral. I finally decided to follow my intuition and made an appointment with the pediatric cardiologist who was closest to our house and in our insurance plan. I wasn't sure what to expect--how would the doctor react to a mother who said that her son got winded when he ran, but had no other symptoms and no referral?

As it turned out, it was a wonderful experience. I was able to get an appointment quickly, and when we arrived, the nurse gave Mark an EKG, and then gave him a test for his heartbeat lying down and standing up. I assumed that was the standard workup for new patients. Then we saw the doctor. I explained Mark's problem running, and he said he already saw something that could be causing it. He showed me the numbers for Mark's heart rate--80 lying down and 130 standing up. He proceeded to do an echocardiogram and told me that Mark's heart was just fine. He explained that it looked like Mark had POTS and that it was a circulatory problem caused by his blood vessels not constricting and pushing the blood adequately to his heart. He asked questions to understand his ADD symptoms. He said it was possible that the POTS was causing his lack of focus as well. He said it was likely why Mark always paced when he thought, and took a deep breath just before he spoke. These were actions he instinctively took to maximize the oxygen to his brain. (We found out later that the nurse noticed this breathing pattern and suspected POTS, which is why she measured his heart rate lying down and standing up.) The doctor scheduled some lab work and a tilt table test to confirm the diagnosis.

Mark had the tilt table test, which completely confirmed the diagnosis. He just about passed out within 10 minutes, simply from not being able to move his feet. I was floored. How could my son's circulation be so poor that he can't stand for 10 minutes and I had no idea? The doctor had said that this condition is often caused by a virus. Mark had a serious virus when he was about 1 year’s old. If POTS was a result of this, he had poor circulation for almost all his life. I felt terrible.

The doctor prescribed florinef and proamatine. The effect of the medicine was remarkable. Almost immediately, we noticed a change in Mark's focus. He would remember things we asked him to do--even when we asked him to do something later in the day. He seemed much more in tune with the activities around him--in conversations, in watching sports, in whether it was time for him to get ready, whatever was happening. He had always been a bit oblivious to things around him, but I assumed it was just his "absent-minded professor" kind of personality.

He no longer takes a deep breath before he speaks. He still paces a bit, but I think that is habit and it seems to be diminishing. When he runs in sports, he no longer looks pained. He gets tired, but he is much more like a normal kid. He no longer runs moving his head from side to side (which may have been another action to get blood to his brain). His sleeping became much more normal. His whole life he has been a wiggly sleeper--ending up sleeping with his head by the foot of the bed or sprawled sideways in bed. I had always assumed it was just his sleeping pattern. Now he goes to sleep much more easily, wakes up with his head on the pillow, and is cheery and alert. He had always been a bit grumpy and hard to wake up.

Even his posture has improved. I'm not sure how it's related, but he definitely stands up straighter instead of slouching.

In short, it's like having a new son. I give him so much credit for being successful in school and sports for many years when it's obvious to me that he hadn't been getting adequate blood to his brain. Now I think life will be easier for him, and he'll be able to succeed even more.

I feel so incredibly grateful that we happened to walk into a cardiologist's office that specializes in POTS (that was completely luck or maybe a guardian angel). I have now read so many stories of people suffering much more severe symptoms and wandering from doctor to doctor for months or years. I am also so thankful we caught this now rather than years from now. I think that may be why the medication is working so well. The doctor feels that Mark will not need to be on the medication forever--maybe for several years at most. He will continue to monitor Mark and encouraged him to continue in sports. If he continues to stay so focused, we will talk to our pediatrician about coming off the ADD medication. I'm so glad this story has a happy ending--I just wanted my son to be able to run more easily, and I ended up with a treatment that is making every aspect of his life better. Hurray!!

 
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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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