Karyn's story

By Karyn
October 2004

I define myself as a mother of two, a wife, and a neurologist, in that order. POTS has affected all of these roles. I was diagnosed with severe POTS by Dr. Low at the Mayo clinic a few years ago, but significant symptoms started in 1996 during my first pregnancy. I was on bed rest for two months and could not stand up long enough to brush my teeth or shower. I saw two cardiologists who said it was "just pregnancy." Even though I am a neurologist, at that time I knew nothing about neurocardiogenic syncope or POTS. I was never taught a thing about them during my training. I received an epidural for delivery, and my blood pressure bottomed out. I needed a C-section due to failure to progress. Thank God I made it through delivery, and I had a healthy baby girl. After delivery, my symptoms eventually resolved after about 3 months.

When my husband and I were trying to decide whether or not to have another child, I saw a cardiologist (electrophysiologist). He diagnosed me with neurocardiogenic syncope. In retrospect, I really have POTS, but he was close enough. My husband and I felt better about a second pregnancy knowing that I finally had a diagnosis and knew how to treat it if necessary. The second pregnancy was a million times worse than the first. I was on bed rest for 2 1/2 months and required a maximized dose of a beta blocker, compression stockings, salt, and lots of water just to get out of bed to use the bathroom. I was told by my OB, anesthesiologist, and cardiologist that I would need another C-section because pushing during labor would cause syncope. I am sure they were correct. I have never even been able to blow up a balloon without near syncope. I found one anesthesiologist in the entire city who would try an epidural for the C-section instead of general anesthesia. My blood pressure could have bottomed out with general as well as an epidural. He loaded me with more than one liter of saline and albumin which allowed a safe epidural. I was blessed with a healthy baby boy.

I was not so lucky with POTS after the second delivery. The symptoms have never gone away. The false hope of having the symptoms vanish again was crushing during the first year. My symptoms are the usual for POTS: dizziness, fatigue, brain fog, shakiness. When I type the symptoms, they sound so lame, but they have impacted my life tremendously. I also have weekly migraines and, most recently, neuropathy (extremity numbness, tingling, burning). I take huge doses of a beta blocker, midodrine, mestinon, as well as salt tablets, lots of water, and compression stockings. My menses are suppressed too. Despite the above, I still have frequent daily symptoms and need to use a motorized scooter to avoid syncope triggered by prolonged standing or walking. At least I don't pass out, thanks to the above.

Besides the symptoms themselves, my career and family have been affected by the illness. At least two out of four of my neurology partners were cruel and mocking of my illness. One of them used to roll his eyes when I would lie down between seeing patients. I was no longer able to take call, which involves working for 36 hours or an entire weekend at a time. My pager would go off in the middle of the night, and I used to pray that I would not have to drive into the hospital. My partners really did not care WHY I could not take call. They just wanted to get rid of me. A lawyer told me that I could have filed a discrimination suit against them, but I did not want to waste my energy. I found another job as a neurologist and now work part time without call.

The hardest thing for me has been learning that I cannot cure myself by "willing it" with my mind. Before this illness, I thought I could do anything with hard work and determination. I can help the illness with positive attitude, but I cannot get rid of the illness. I also find it hard to limit myself. I have overextended myself on many occasions, usually around holidays, and paid the price. I look around at other kids and see parents who are involved in a lot of their activities. My husband has type I diabetes, so it is hard for both of us to be active.

When my daughter was younger, I told her I was sick one day. She said, "Mommy, you are NOT sick. You are not coughing or sneezing." She understands better now at age 9. Similarly, adults look at me and have no idea that I could have a health problem because I look young and healthy. I am 40 years old but have been told that I look like I am in my 20's. When I use a handicapped spot or a scooter at stores, people stare at me, trying to figure out what is wrong with me, or whether I am abusing these aides.

I have learned some life lessons as a result of the illness. I like to think that good things can come from bad things.

1) I am more patient and empathetic with my patients. I truly understand what it means to be ill. At times, I have felt more kinship with my patients than with my physician colleagues. When my partners at my previous job were being so cold, my patients were giving me hugs and kisses and crying for me!

2) I pick and choose what I will get upset about. Getting angry or crying flairs my POTS symptoms.

3) Not everyone cares or has capacity for compassion. I try not to take it personally. It is THEIR flaw. I try to forgive and go on. Anger towards them gives THEM my power.

4) There are some wonderful, wise people out there.

5) I count my blessings and am grateful for what I do have. I am most grateful for two healthy, delightful children, despite the pregnancy-triggered POTS.