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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

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I have just read the message from "Deb" concerning your latest problem with dysautonomia. My husband was diagnosed in 2001 with this disorder and although he has not experienced this particular problem, the many other symptoms you mentioned are present and becoming more difficult to treat. He is having a very difficult time with the fainting, blood pressure and erratic heart rate. Generalized weakness and now bouts of pneumonia are becoming a more frequent problem.
I would appreciate your replying so that we might be able to share knowledge on this disorder and it's symptoms. I am especially interested i n the clinic you mentioned in B'ham. Any help would be welcomed.
sincerely,
billye
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I am a 27yr old female who has suffered from this debilitating disease since I was 16 and it has definately made my life well crummy to be exact. I have the doubts of what ifs and the why mes and the prayers to stop it to take it away, but I have realized I just have to live with it. If you want a good Dr. go to Dr. Blair P. Grubb at the university of Toledo in ohio he is a researcher on the syndrome.
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Long QT syndrome, inappropriate sinus tachycardia, and now Postural Tachycardia Syndrome. I am awaiting an appt with a specialist at Beth Israel Hospital in Boston which is next week. I too am a nurse and now at 34 I am finding myself bed ridden more often than not. My heart beats anywhere from 100 - 220 at rest and with activity. My extremities are freezing most of the time and my feet, now my lower legs and my hands are intermittently turning purple and blue. I feel like I am going to pass out everyday and have passed out randomly since the age of 16. My heart at times is not only racing, and palpitating but feels like it's doing an abundance of crazy things. When I rev into an increased bout of tachycardia I now lose my breath. My vision is disturbed intermittently and at times I feel like I am going to faint. Many of the drugs on the Long QT and Torsades de Points list make me more tachycardic and have caused me to faint in the past. I am exhausted all day, every day and my body is weak and shaky. I could go on, I am sure as there are peculiar things that continue to happen such as the ICU nurses description of the tingling which starts at the sternum and radiates, this happens when I swallow. I was a gymnast, a soccer, basketball, softball player, a runner, walker and yoga nut until this last year. As of current I all I can do is use the everything I have in me to work and sometimes I cannot do that. I literally am bed ridden. I am not a frigged up neurotic girl that complains and is helpless as I have seen on other dysautonmia sites and complains of my left toe nail or how the world has failed me. I am a fighter by nature, a woman brought up to take care of herself and others, a pull myself up by the boot straps kind of girl, find a cause I believe in and give back to it human, get knocked down by life and get back up again, ready to take anything on kind of woman. This POTS, dysautonomia to be further dx'd next week has taken the life out of me and I physically have no fight to rally. It's got me beat and the medications have got me pinned down even further. I wish all good luck with this medically abstract diagnosis. There seems to be no passion amongst the medical field to research further for answers concerning the dx, nor a desire to bring awareness into the medical communities. Perhaps I'm mistaken.
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Hi Deb, I read your post and I have to say it was if I was reading about myself! I am a 46 year old (divorced) woman with 2 daughters (20 & 14). My story is a long one and it has become something of a "medical mystery" to some doctors I have encountered!!! I too was a gymnast in my young years as well as a bodybuilder and that's when strange symptoms started to become noticeable. I would feel sore after work outs, but, more sore than normal. I was more stiff than usual and started to develop serious headaches. I started on a Tylenol regime and it stopped working as soon as I began taking them. Ignoring all of the pain, I kept on going. Little did I know that these symptoms at age 11 were going to change my whole life style for the next 35 years!!  I started a Law Enforcement career after my youngest was born and while in the Police Academy, I noticed that my heart rate would soar after 3-5 minuted of any type of exercise. After I caught up with myself, my heart rate would stabilize. This continued as I became certified, graduated and on the beat in my new career. I was in my 30's then, by the way. As a cop, I HAD to stay in shape for defensive tactics and for myself personally. I decided to join Martial Arts at age 40 and found that the stretching and concentration subsided a lot of my symptoms. It wasn't until I went to the firing range all day for re qualification for weapons training, that I really knew something was terribly worn. I remember waking up extremely stiff that morning with a sharp pain in my lower back and right hip. As I got out of bed, and stepped onto the floor, the pain was so sharp it took my breath away and I felt like I was going to pass out. My heart raced, I went into a sweat and tried moving my legs. I couldn't even feel my feet, they were numb and burning. My legs started burning and I felt spasms running through my thighs. Holding onto the wall, I took baby steps until my legs stopped burning. I managed to get through showering and suiting up, putting my gun belt on, etc..After getting the kids off for school, I noticed a new symptom as I approached my police car. As I was opening the door, my eyesight became blurry and my head began to spin. I quickly got in the car and put my head on the steering wheel. The pressure in my brain was so intense, I thought it was going to explode! After the symptoms passed I drove to the firing range. It was extremely hot and humid and I felt like I was full of lead as I prepared to fire my weapon. Extreme sweating occurred and my eyes blurred over. A sudden and painful throbbing began at the base of my skull and it felt like I was electrocuted! I put down my gun and re holstered it. Took a drink and began to try again. The headache now ran down my neck and exploded through out my spine. I don't know what hit me, but, I was on the ground in agony.  My extremities were burning and I tried to talk, but, the words wouldn't come out. I was rushed to the hospital and treated for heat exhaustion. I tried to explain my symptoms, but, it seemed that the ER Dr's weren't interested. Frustrated I went to my own Dr the next day. She ordered a bundle of tests, labs, urine, x-ray, ct scan and an MRI of the brain. After 4 days of waiting she called and demanded I see a neurologist. I went to the neuro 2 days after  and he looked at the MRI. He saw a 3mm lesion on the frontal lobe and dismissed it as a migraine problem, put me on Maxalt and set me free. I started taking Maxalt and felt worse. My symptoms grew more intolerant and I was unable to perform my duties on my shift. In fact, when I was on scene at a traffic crash, the flashing lights triggered the worst feeling I ever felt!! I ended up again, in the hospital hooked up to everything imaginable! A Neuro on staff set me up with an EEG, thinking I had an epileptic seizure. After 24 hours, it was normal. My Lt. read the report from my Sgt. the next day and called me into his office before shift. He advised me to resign due to liability issues. I felt awful! I invested 10 years of everything I had into my career and it was over in a flash. I turned in my uniform and gear the next day and decided to move back to my home state. Once settled, the symptoms continued and got worse over the next 3 years. In 2008, I was bed ridden!! I could not move my legs and the pain and nausea took everything out of me. I spent that summer running back and forth to doctors who did nothing but scratch their heads and tell me I am fine!! Feeling like I was dying, I kept taking Aleve to relieve the pain, but, it stopped working. My girls were worried that their mother was dying and I couldn't participate fully in their activities at that time. It wasn't until the end of that summer that everything was about to change. I met the man of my dreams and relocated to his state with my kids. We settled in a small town and it seemed my symptoms were under control. The winter of 2009, I called him in a panic. I had the worst exploding pain in my left eye and was vomiting. I was rushed to the Er and released with "headache syndrome" as a diagnosis. They put me on vicodin!!!  After taking one, my symptoms seemed to spread throughout my body and I was bed ridden again! I decided to keep a journal for the next 3 months and after reading the symptoms, treatment, and trips to the hospital, it was time I did something and fast! I went to my PCP and demanded I see a Neurologist who specializes in MS, Migraines, Epilepsy, etc...I started seeing the Neurologist I have today. For 2 years we have gone through numerous tests and labs, scans, etc..FINALLY the day before Thanksgiving, I had a chest infection with inflammation. back to the ER, same symptoms, but, now an infection, tests, scans, x-ray, no answer!! I was told to follow up with my PCP after the holiday. back to my PCP.. explained the situation, blah, blah, blah...she took vitals and was shocked at how low my BP was! She told me to lie down on the exam table and took it again. My BP soared! My heart rate sped and my head began to fill up with pressure and the exploding eye ache returned. She told me to keep my appointment wit my Neuro the next week and see what he thought. Off to the Neuro! He performed the same BP test and saw the same results, immediately he set me up with a cardiologist. Before Christmas I had my cardio visit. I performed a stress test and within 2-3 minutes of slow walking, my heart rate shot to 124 beats!! I could not continue with the test after 7 minutes, I felt nauseous and faint. Burning was so bad in my chest, I couldn't breath normally. The results went to the cardiologist and she asked me every question I wanted to hear. I explained all of the symptoms and problems I have had since I became an athlete. She told me about Dysautonomia and agreed that I have it. I am scheduled for the tilt table test this month to see if I have POTS. So...as you can see, I too am a MEDICAL MYSTERY to quite a few doctors!! I am not on any medication protocol as of yet. We shall see what the test results are and go from there!! I hope everything works out for you and thank you again for posting!!
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You sound like you might have Ehlers Danlos syndrome. You might Google that and see if you score on the Beighton scale or meet the Brighton criteria. Good luck.
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