Some of you may have wondered about the title of this blog- falling through pain. The truth is that it is one of the best ways that I can describe living with Neurocardiogenic Syncope and New Daily Persistent Headache and how they impact my every day life.
New Daily Persitent Headache
I got my first migraine at the age of 12, but they did not become chronic until age 17. New Daily Persistent Headache occurs when a headache develops spontaneously and is unremitting. One of the key indicators is that most people remember where they were and what they were doing when the headache began. It is also extremely refractory, in that it does not respond to many forms of medication used to treat other headaches. NDPH can resolve in a few months or can last for years. In my case, the headache began at age 17 and is still there 13 years later. I am now thirty. I have seen numerous doctors and specialists-some helped, some did not. I do have an occipital nerve stimulator implanted and this greatly increases my quality of life. It works by sending a false message to the nerve, thereby intercepting the pain signal. It does not take all of the pain away, but it does allow medications to work. I have had two periods of remission, each lasting about 9 months.
If you want to know more about NDPH- here are some good articles:
http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html
http://www.headaches.org/education/Headache_Topic_Sheets/New_Daily_Persistent_Headache
NeuroCardiogenic Syncope/ Postural Orthostatic Tachycardia Syndrome
In addition to New daily Peristent Headache, I also have Neurocardiogenic Syncope, a form of dysautonomia. This began about 3 years ago after a bad bout with the flu. I recovered from the flu, but began to faint constantly- at first, only a few times a week, then once or twice a day, and finally multiple times a day- anywhere from 1-12 times on a given day,
NeuroCardiogenic Syncope occurs due to a "disconnect" in the brain. In a normal individual, blood pressure rises upon standing. In patients with Neurocardiogenic Syncope, the heart does not get the message to raise the blood pressure when needed, as a result, the heart rate increases and blood pressure drops. In order to protect the brain, you faint in order to re-establish blood flow to the brain. The symptoms resolve quickly. There is not a great deal known about this disease, but advances are being made all the time. again, I have seen numerous doctors- cardiologists, neurologists etc. The one thing that has helped most has been C-PAP at night.
Here are some good articles on NCS
http://www.ndrf.org/ParoxymalAutonomicSyncope.htm
http://www.dinet.org/NCS/ncs.htm
About Me, and my life with these disorders
I am 3O years old and live in a medium sized city in the Southeastern United states. Despite these disorders, I was able to finish high school on time, go to the college of my choice (with a disability qualification}, and begin work on a Masters in Education. My studies were rudely interrupted by NeuroCardiogenic Syncope in 2OO8. These disorders have taken a great deal from me- my chosen career, some of my independence, and a good portion of life in general. Despite this, I am determined to live well. I have incredible friends, a supportive family (for the most part}, and several hobbies. I enjoy talking to friends, reading, spending too much time on the Internet, writing, going to the beach, and volunteer work.
Through all of this, I have learned never to give up, and to keep fighting, even when I don't want to fight anymore.
The title comes from the combination of falling and the constant pain of Headaches.
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