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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. 

Katherine’s story


By Katherine
January 2004

I have had mild POTS symptoms since the early 1990’s when I was in my early 20’s.  The symptoms started while I was a Peace Corps volunteer in Africa.  They were mild, came and went and I didn’t think anything of them.

In 1999 I had episodes of prolonged tachycardia, chest pain, fatigue, tremor, and anxiety.  My general practitioner diagnosed me with anxiety, and found that I had an under active thyroid due to Hashimoto’s – autoimmune thyroid disease.  I started treatment for Hashimoto’s and my POTS symptoms gradually disappeared.

Then I got pregnant in 2002.  This is when everything changed, and it was clear something else was wrong.  I remember one day at work—I was about 4 1/2 months pregnant -- I was trying to lift a sheet of paper from a printer, and I felt so weak I had to sit down.  The next day I was in a conference phone call, and I suddenly felt so dizzy and weak and my heart was beating so fast I had to hang up.  I laid on the floor at work for an hour, and then my husband came to get me and we went to my ob/gyn. 

She was concerned I had an undetected cardiac problem and sent me straight to a cardiologist.  He ran some tests and concluded that I wasn’t exercising enough and was anxious.  Over the next weeks my condition deteriorated further, until I was nearly constantly dizzy.

I talked to my endocrinologist, who suggested I try to add more salt to my diet.  This did the trick!  Within several days I felt almost normal again.  By the 7th month of my pregnancy, though, I was too exhausted to work anymore and was having dizzy episodes.  I stopped working and was at home, sleeping a lot.  My ob/gyn just said it was normal to be tired in late pregnancy and that I was too demanding of myself.  I didn’t know anyone who had been this tired though.

My daughter was born at term, 10 lbs, 2 oz, 22 inches long, by C-section due to placental abruption that nearly killed both of us.  My blood pressure went sky high during labor.  I lost so much blood I had to have a blood transfusion.  I was sick in bed post-partum for months.  I managed to nurse my baby for four months, but did very little else.  Every doctor I saw told me I had severe post-partum depression and needed treatment.  I finally agreed to see a psychiatrist who determined I had no depression, but an undiagnosed medical condition. 

Eventually, I became so weak I was unable to walk and at times unable to sit up.  My husband carried me to the ER, literally, on three occasions.  On the third occasion, I was admitted to the hospital and finally diagnosed with POTS.  My doctor (a partner of the cardiologist who diagnosed me with lack of exercise and anxiety) started me on 20 mg of Prozac and 10 mg of Pindolol.  By August 2003 I was stronger and back at work part time. 

I have relapses of the symptoms that scare me, and I am not as well as I was prior to pregnancy.  I have limited exercise tolerance and get tired easily.  I do yoga every day and walk several days a week with my daughter in a stroller, but anything more aerobic still seems a strain.  I find that eating too much sugar, not getting adequate sleep, too much stress, a minor medical procedure—any of these things--can set me back.

Overall, I feel optimistic about my long-term recovery, although I have also accepted that I have to make some lifestyle changes.  I have also learned that illness can be a blessing.  I have discovered that it is possible to take one day at a time, sometimes just one breath at a time, although this is not always easy.  I have found how important my family is to me and what special people they are.  The world around me seems more alive and intense than ever, and I take pleasure in the small details of life that I might have otherwise taken for granted.  Life seems so precious, and the ability to enjoy it is a blessing.

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