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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. 

Living with a Nightmare, POTS


By Karen Brank, Toledo, Ohio
July 2007

Hello! I am a 37-year-old African American female who was diagnosed with POTS in July of 2005.

In 1997 I began having health problems. I was also under a tremendous amount of stress in my job at a mental health agency, a single mother, and in graduate school. My job was so demanding. I had to work 12-16 hour days to get everything done. Soon after my health problems began, my supervisor moved to a different department. I got a new supervisor, and she was not supportive.  She allowed a new co-worker to be verbally abusive and rude to me and never did anything about it, even though I tried to do things to help resolve the matter. I began to have heart palpitations, chest pain, muscle pain, low energy, dental problems (swollen gums, constant bleeding, and pain), headaches, urinary tract infections (blood in urine), as well as insomnia. I did try to exercise 3-5 times per week but noticed that I could not do it due to lack of energy and neck pain. I felt as if I had pulled a muscle in my neck.

In 1999, I transferred to a different department at work, but I still experienced stress from management. From my experience in the mental health profession, most of my supervisors were culturally insensitive and held a superior attitude. My migraines became worse; I also suffered dizziness, very low energy and fatigue. My doctor informed me that I had tested positive for Epstein - Barr virus. I was placed on lorazepam to help with sleep. I had previously felt wired but extremely tired because I could not sleep.  I had some nausea almost daily. I was a size six, and I began gaining weight; by the end of the year I wore a size 14. I was taken off work for 30 days. In that time I was able to find another job.

The new job was in a faith-based organization. Unfortunately, I had to take a $5,000 pay cut. During my time at this organization I was very ill.  However, I did not have to work long hours and the work was very light and not stressful. I still was fatigued, had low energy and continued to have problems with my gums and teeth.  (I was diagnosed by my dentist as having the early stages of gum disease.)  I also had headaches, muscle aches and chronic urinary tract infections that led to some kidney infections.  I finally just stopped going to the doctor because I felt he was not helping me and not returning calls when I needed appointments.

I graduated and received my master’s degree two months after I began working at this organization, but my pay rate did not increase. I was very disappointed. I began looking for another job due to financial reasons.

I found a job at another mental health agency. I got a $7,000 pay increase, but the stress, verbal abuse, and discrimination began again.  Once more I began working long hours to get all my work done. I started to suffer different symptoms this time. I was fatigued and lightheaded with dizziness, almost to the verge of collapse.  I had high blood pressure (i.e. 140/100), back pain, and swollen feet (with pain).  I was unable to eat due to nausea, vomiting, heartburn, gas, bloating, and loose stools. This caused my weight to fluctuate. I felt thirsty and had a dry mouth. I was also unable to sleep (along with feeling wired).

I was able to transfer to another job within the same agency. This time I got an excellent supervisor, but I still had to work long hours to get everything done. With this job I had to go into clients’ homes. I noticed that I developed a persistent cough (when going into certain homes), eye allergies, and chronic sinus infections. In 2004 I lost weight, maybe ten pounds at first, and experienced persistent vomiting. I started to lose weight very rapidly. I went from a size 14 to a size 8.

In 2004 I got a new doctor due to insurance changes. It was a blessing in disguise. I was diagnosed with fibromyalgia. I was given an MRI that found degenerative disc disease. I also began losing my balance and falling, but it was not happening very often. I just thought I had tripped over something.

In 2005 I got married. My new husband took me to Baton Rouge, Louisiana to meet his mother. Unfortunately, during the trip I developed food poisoning after eating at a restaurant. I felt nauseated for almost two days, had some loose stool (lost control of my bowels one time), felt very weak, fatigued, and had trouble walking (along with balance).

When we returned from Louisiana I knew something was wrong with me. I could barely walk; I kept falling down.  I had pain everywhere and extreme weakness all over my body. One night, I came home from work and I fell down three times. My husband took me to the hospital and I was admitted.

After I was released, I was falling down five or six times per day. I needed assistance walking and needed to use a wheelchair. A few days later my doctor diagnosed me with POTS. He sent me to a cardiologist, Dr. Blair Grubb, to confirm the diagnosis. Dr. Grubb said that I was suffering from muscle wasting, orthostatic hypotension, and dysfunction of the autonomic nervous system.  I had a positive tilt table test. He believed my case of POTS was due to another underlying medical condition because POTS is extremely rare in African Americans. He thought that I had a metabolic disorder called mitochondrial cytopathy, but I tested negative at the Cleveland Clinic.

I was seen by several specialists at Cleveland Clinic. I have been diagnosed with IBS, migraines, sleep apnea, asthma, and allergies. I also have peripheral neuropathy. My face, hands, and feet feel as if they are burning and throbbing.  I get temporary paralysis. I also get stabbing, shooting, and aching pain. This is very debilitating. I have trouble walking, climbing stairs, or lifting anything more than 5 pounds. I also feel disconnected from my family and friends because I feel like a prisoner in my own body.

I also had to have a hysterectomy because I had two fibroids as big as grapefruits and one large cyst. I was in constant pain for months until a Cleveland Clinic OB/GYN took away the misery and pain. I did end up in intensive care after my surgery because I went into respiratory distress. I had asthma and did not know it at the time.

My husband and I divorced a year ago. He was never supportive of my illness. He was also angry all the time as well as physically and verbally abusive.

I have not worked in almost two years. I suffer from severe dizziness that makes it impossible to stand up, and nerve pain along with IBS. I have constant vomiting, and I could have gallbladder disease. I may have to have another surgery. I am currently working with a vocational rehabilitation counselor to return to work.

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