In February of 2009 I started to feel ill. My heart was racing with chest pain and palpitations and I constantly felt like I was going to pass out. I initially thought I was having episodes of low blood sugar which was causing these symptoms and tried to manage them without relief.
For months we did not know what was going on with me. My doctor automatically thought it was anxiety, despite my explanations to her that the tachycardia, shortness of breath, nausea, lightheaded, tremors and disorientation, were occurring on movement.
I was sent to numerous specialists including Cardiologists, Gastroenterologist, Neurologists, Pulmonologist and Endocrinologists, along with countless procedures and tests.
Privately I was going through many more repercussions from this unknown disorder. My supervisor had visited me earlier in the month and stated that I couldn’t use anymore sick time until the following year. In other words my job was potentially in danger because I was sick. In March 2009 I stopped working all together. I felt alone, worthless and with no income.
My doctors were stumped. They didn’t know how to stop my symptoms; I was called names like “Zebra” and was told that it must be anxiety or depression, among other things.
After a year and a half the Cardiologist and Neurologist both agreed that I probably had some form of Dysautonomia and Autonomic Dysfunction, however they didn’t know how to treat it. So they sent me to the University of Washington Neurology Clinic. I had to wait 4 to 5 months before I could see my new doctor. My appointment was in October 2010 and it was at that time that I was finally diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.
I am so grateful for my Neurologist and the Neurology Clinic at the University of Washington. Without them I probably would have lost all hope. Trials of medications are still on the horizon as we have yet to find the right combination to manage the multitude of symptoms. However, I feel very fortunate to have found my doctor and that he knows how to treat this condition.
The Autonomic nervous system controls everything that is on automatic; heart rate, respiration, digestion, blood pressure, urination, and even your pupils! It is comprised of the parasympathetic and sympathetic nervous systems. The second is responsible for the fight-or-flight response. Lately that has been one of the symptoms that they have not been able to control. I feel like I have a tornado and a hurricane raging inside my body.
Just standing for a few minutes will cause these symptoms to exacerbate. The heart rate increases, I get out of breath, lightheaded, palpitations, and nauseated just after the first few minutes I stand up. The brain fog, lack of focus and memory loss has been a challenge. After 30 years of nursing I no longer can remember basic things. Words just do not come as quickly as I would like them to!
Having to depend on people to take me places has been a humbling experience. I used to take for granted all the freedoms I used to have, which are gone for now.
I will not lose hope or give up. Now I enjoy each day the best I can. We make the best of it. My granddaughter now knows that she has to ask Grandpa to run with her or play hide and go seek. Maybe I can no longer pick them up and spin them around or dance, but I can have them on my lap and we can read or watch movies together.
At times I do get frustrated with people who do not understand and have the mindset, “if you don’t look sick then you must not be sick” mentality. Having to explain to people over and over why I can’t do something is frustrating. Even going to my primary doctor’s office has been exasperating. I think I may scream if I hear the nurse say one more time, “oh your heart rate is really high”!
The sensations inside my body are at times indescribable. Trying to cope with changes that you can’t control can be difficult at times. Sometimes I don’t think I handle it very well.
My husband has been my rock during all of this. I am not sure how I would be able to deal with day to day activities if I didn’t have him with me.
On most days you can find me at home on either my bed or my couch with my laptop by my side. I have started to make wonderful friends through Social Media. I may not be able to get in my car and go out for a cup of coffee but I have been able to establish great friendships online. I have also met other P.O.T.S sufferers on the The Dysautonomia Connection Group on Facebook.
Through that group I have found that I am not alone. Others have had to go through years of investigations, doctors, misdiagnosis and tests before they were finally diagnosed correctly. This condition is not well known in the medical community. I would like to thank Becky Jane from Rise Above Your Limits for allowing me to spread the word about P.O.T.S.