"You look like you have P.O.T.S." Dr. Karabin stated to me as she walked into the exam room. "The tilt table test also shows that you are positive for P.O.T.S as well." I glanced at my husband Shaun with relief. I had waited for this moment now for about a year. I finally had a diagnosis, but now what?
What is P.O.T.S? It stands for Postural Orthastatic Tachycardia Syndrome and is a form of dysautonomia. What the heck does that mean? Basically, I have a disorder of my autonomic nervous system. My body has trouble maintaining homeostasis when going from sitting to standing. My heart rate really speeds up, sometimes my blood pressure can drop, and my body has a hard time getting blood from my legs back to my heart and brain. Anything that your body should do automatically is affected by this disorder. The main symptom that I had was debilitating dizziness. It was a getting off of a tilt of whirl and having the flu everyday of your life bad. Among dizziness and nausea came a slew of other symptoms as well. I have digestive issues, overactive bladder, headaches, a pain in my side that lasted 1 month, vibrations in my legs, food sensitivities (have to limit gluten and dairy), black outs, exercise intolerance, sleep issues, brain fog, bad short-term memory, and blurry vision.
I had all these symptoms and none of them made sense. I looked like a healthy individual on the outside but why did I feel so bad on the inside? I knew something was wrong with me but no doctor could come up with an answer that would explain all of my symptoms. For the longest time my doctors kept saying that I had migraine induced vertigo. I could never accept that as my only and final diagnosis because although I had an increase in migraines, I was mostly dizzy without them. I was becoming very depressed because I felt so sick but didn't know what was wrong with me. After almost 11 months without any answers, I really saw the work of God in my situation. By chance I was reacquainted with a friend from my old church. I always knew that she struggled with her health but I did not know what her condition was. When we met for coffee , she started telling me that she had dysautonomia and her conditions seemed very similar to what I was going through except that she struggled with fainting a lot and I did not. Then my husband was talking to a lady that he carpools with about my condition and the woman responded that she knew exactly what my condition was. She said that she believed that I had P.O.T.S. That week I had a follow up with Dr. Weintrub from the Michigan Head Pain Neurological Institute for my migraines. I began to tell him that I was experiencing more and more blackouts, so we decided to test my blood pressure and heart rate sitting and standing. My standing heart rate was 30 beats higher than when I was sitting. From doing research, I knew that was a common sign of someone that has P.O.T.S. Dr. Weintrub then referred me to Dr. Blair Grubb in Toledo to have a tilt table test done to see if I would come back positive for the disorder. That week I talked with someone that I had known for a while but didn't realize that they also had dysautonomia. The funny thing is that she also at one time was a patient of Dr. Grubb too! After I talked with the third person that had dysautonomia that week, I knew for sure that is what I had before I even took the test. God often confirms things to me in threes and to have that many talk about dysautonomia to me in 2 weeks is astounding given that only 500,000 to 1,000,000 people have it in the entire United States of America. I was so lucky to have my test done at Dr. Grubb's office and to get in a month later because the normal wait to get in to see them is 1 year. Sure enough, I came back positive for P.O.T.S and since I was scheduled to go to the Cleveland Clinic in the same week, I decided to still see what they had to say. The Cleveland Clinic also confirmed the diagnosis of P.O.T.S and added neck induced dizziness and migraine to my list. Dr. Karabin believes that my P.O.T.S is caused by genetics specifically a connective tissue disorder that I have. I look back on my life and I see when my P.O.T.S was acting up; fainting for no reason, being tired all the time, having blurry vision and dizziness at our wedding. I see brief moments that were sprinkled with P.O.T.S, but my symptoms didn't come into full effect until I was involved in a car accident. The car accident itself was somewhat minor, but because I have a connective tissue disorder it really shifted vertebrae in my back and neck and sent my autonomic nervous system over the edge.
So what do I do to correct it? Well first of all, the most predictable thing about P.O.T.S is that it is unpredictable. I have to deal with the symptoms everyday, but some days are better than others. I can feel fine one moment and all of a sudden I can feel absolutely awful. One day I can go to the mall and meet with friends and the next I might not leave the couch for most of the day. I now take medicine which seems to help. I have to change my lifestyle as well. I have to exercise to keep up my endurance. According to Dr. Grubb it takes 3x the amount of energy for someone with P.O.T.S to function versus a healthy individual. I have to watch my stress level because high stress really exacerbates my symptoms by creating a fight or flight mode in my body. If I am stressed, I lose my vision and I get really dizzy. Hence, why I have to work part-time, take lots of naps and relax. I don't take showers in the morning because it is too hard on my body. I have to drink lots and lots of fluids and I can't eat too much at once because if I do, the blood flow goes to my stomach and not my brain. All these changes are minor if it means feeling better.
The reason I wanted to share my journey is the hope that I can help someone else. I never want someone else to go through what I went through. I want to bring light to this rare condition so when someone sees or has these symptoms they don't have to go through a year of agony before they get answers and treatment. Being dizzy 24/7 for a year put me in a very dark place where the thought of ending my life seemed better than enduring one more day of hell and I never want that to happen to anyone else. The sad thing is that doctors do not even study about dysautonomia in medical school but for some reason they cover it in veterinarian school. Well sorry, but that is not going to help me!
If a doctor has never heard of it, how can they possibly diagnose and treat it?
If you are dealing with a chronic illness and still do not have answers, keep searching until you get them. You will finally find the help you need if you don't give up. Seek out a support system and from the words of Journey, "Don't Stop,..... Believin'!"
For more information about dyautonomia/P.O.T.S, feel free to contact me or click on the link below:
http://www.dinet.org/index.htm
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