This is my first post, and I am a 43 yr old Mother of one, a 15 yr old son that is my life, and I'm now a stay at home wife/mother, after I was forced to resign from my wonderful nursing career in 1997, due to this health problem. I was an RN, an ICU nurse. My story unfolds at age 29, when I started fainting or feeling as if I were going to faint and also having severe headaches. Unknown then, but I was symptomatic of a Central Nervous System (CNS) disorder, called Dysautonomia OR Autonomic dysreflexia that was/is widely mis-diagnosed most of the time, b/c Dysautonomia is not known by most Doctors. I was very fortunate to find a doctor who sent me to be tested in Birmingham, AL at THE Dysautonomia Clinic, where dysautonomia was being researched. I was given the appropiate tests & I had this disorder, but to make things worse, this disorder of the CNS, breaks down to smaller parts of the Central Nervous System. First in my case, is the Autonomic part of the CNS, but then the Autonomic CNS is differentiated by being either controlled by the sympathetic or parasympathetic parts of the Autonomic CNS. Sorry about the medical wording, but all you really need to understand is that it is much easier to treat if it is one kind or the other, sympathetic, or parasympathetic. However, my particular case breaks down to be a MIXED Autonomic response which is rare, and so much more difficult to treat. There was NO question this was what was causing me to pass out, b/c my blood pressure was getting too low and it couldn't carry enough oxygen to my brain, so I would pass out, along with many other symptoms I had, but the fainting was certainly the most dangerous symptom I was having. At 31 I was diagnosed with the CNS disorder DYSAUTONOMIA & now I'm 43, & even though I've had to stop working, I have been extremely fortunate to finally find a drug regimen that works for me. Ahh, but recently, there is a new symptom that is worrisome and it is explained below.
Each case of Dysautonomia is unique, except, of course, all have the classic symptoms. To better understand this disorder, the Autonomic part of the CNS is the part that reacts AUTOMATICALLY to anything, such as the heart rate (HR) rising and also a rise in blood pressure (BP) with any true surprises that occur ... my body doesn't have an automatic response ... it doesn't automatically cause my BP & HR to rise as it should normally ... it doesn't cause me to take deep breaths when I'm startled, to compensate, IF, in fact, I were truly surprised about something. My body doesn't understand how to react to cold or hot weather, as your body shivers in the cold to keep you warm, and perspires in the heat to keep you cool, but that doesn't happen with me. All of that is bad enough, but, then there is still having the MIXED dysautonomia ... neither, the sympathetic or the parasympathetic part of the autonomic nervous system is in control, but instead, they are both working against each other. One of them would cause my BP AND HR to RISE at the same time, and the other would cause both those to LOWER at the same time, but I had a mixed response, meaning that my BP stays low while my heart rate stays high. This is a problem b/c any medication that is given to RAISE my BP also raises my already high HR, and any medication given to LOWER my HR is also going to LOWER my already low BP.
I have made the paragraph below bold b/c it contains the true search I need an answer to.
So the problem I have been trying to find an answer to is something that began happening to me about a year ago, and at first it began with just some tingling at the tip of the sternum which is also the breat bone. The tingling would begin there and then move down my arms and legs to the tips of my fingers and toes with a very strong tingling as it left me. Since then, I have had some arthritic changes in my knees and lower back and when I have been sleeping, and I wake, I cannot get up suddenly, b/c of the problem with my BP. I have to do things slowly so my body will respond the way it should so when I wake I lie there awake for a few minutes. As you do when you have first aroused from sleep, I take a very deep breath. When I take this very deep breath and then begin to exhale there is a pain now, not tingling, but pain that goes down my spinal cord and into my knees and back, and when it gets to my knees it is absolute pain that seems to explode at the very end and it may happen 3 or 4 times as I take deep breaths after I first arouse .. in fact, I have yelled out in pain before from this, but I can't seem to find an answer as to what is happening.
If you have read this far, I thank you for taking an interest in my case, and I hope I have made clear the problems I face. Since I have had this disorder, I worked 3 years with it, I have been fortunate to work with doctors that knew my background in the medical field, and trusted me enough to allow me to change my medications to find the right dosage and the right medications. Without having had a medical background, I'm not sure where I would be today. It wasn't working for the doctors to see me in 2 weeks and we will try a new dose if this isn't helping ... but to rely on my knowledge as an RN, and experimenting with the medications, diet and behavior modifications, I was able to attain a life that allows me to have good days and bad days, but I know how to manage each, and I try to live life to the fullest and keep a positive attitude. I have been told to NEVER fly and NEVER scuba dive, b/c these things bring a change in pressure, changing the pressure in us when we react to the rise in cabin pressure or the pressure the body is exposed to when deep sea diving. Flying is my passion. I love to be in the highest spot I can get, hence my ability to climb trees that were gigantic when I was younger ... seriously putting me 150 feet or more in the top of a tree. I would take a book to read and sit in that tree all day. Now I sit on the edge of a cliff dangling my feet off the edge and look out onto the horizon until the earth disappears from under me and suddenly I'm flying. I can sit there for hours. I had a friend once that had a small plane and he took me up in it, flying me over familiar places, and ultimately over my Mom's and Dad's house, with the plan unknown to me, but my parent's did know that I was going up in the cesna that day so they heard the small plane flying low over their home and came out to wave at me ... it was a truly remarkable experience. I have gone repelling before and had to talk the guys into it by being the first one down. I was sitting on a cliff top one day as a hang-glider came by so silently that he was upon me before I knew he was anywhere around, and he spoke saying something like goodday and I commented on how much fun that looked and he responded before he was silently gone from hearing distance, and he was only about 10 feet away from me when he passed by and after that, I had hang glider fever. I HAD TO DO THIS!! ... So I went to one instructor's "jump day" where he helped his students to do their first jump on a hang-glider. They were frightened of the jump itself, and so they would run up to the edge of the cliff and stop about 4 or 5 times, but when they finally jumped, they screamed in ecstasy and laughed all the way down. I was going to go back and sign up to take lessons, but oddly enough, the instructor was killed in a hang-glider crash before I could ... sign up that is. I thought God might be trying to tell me something so I waited and then I had a child, and being a working mother was so difficult to find 5 minutes for yourself, much less time to take hang-gliding lessons. When the doctor told me that I couldn't fly, etc., it hurt, but it didn't crush me, b/c I believe in God and I think if I'm going to die it should at least be doing something that I am passionate about ... I believe we have a pre-determined day to die ... if not, there would be no miracles, and I, of all people, KNOW that miracles still happen b/c I have seen them in my nursing career ... absolute-no-other-way-honest-to-God-Miracles!! ... YES!! ... with my very eyes ... so I will not allow this disorder to stop me from doing ANYTHING if I have a chance to do something I have always wanted to do, in particular, but even if it is something I've never thought about but it seems like fun at the moment, and I'm given the chance, I'll be there .. doing it .. and enjoying it to the fullest ... as I told my doctor when he informed me of these things that I could "no longer do" ... I replied, "Hide and watch me" ...
If anyone could help me with my research question, if you have perhaps experienced the same thing, anything you could offer would be appreciated and helpful. I have yet to find one person that has ever experienced anything like this so it seems to be most likely something that is related to one of my problems that is associated with Dysautonomia, which are, migraine headaches, fibromyalgia, mitral valve prolapse, signifigant narcolepsy, mild sleep apnea, and GERD or Gastro- Esphogeal-Reflux-Disease. I thank you for taking the time to read this.
Sincerely, Deb |
