Tuesday, November 3, 2009


I was diagnosed with dysautonomia in June, 2009. I was shown where my "acquired chiari" (cerebellar tonsils/herniation) is pressing against my brainstem. It was explained that if I do much activity or get too excited about things, it causes my blood pressure to rise, and that causes even more pressure inside of my head including the cerebral spinal fluid (CSF) and blood. That rise of fluid pressure inside my head causes tissue compression.

Here are some links regarding dysautonomia:


Here is an excerpt from another website:

The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.

When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.

There is also something called Autonomic Dysreflexia.

So, what is Autonomic Dysreflexia?

Most patients who are paraplegics and quadraplegics suffer AD. Here is some information on it...

Mild Dysreflexia:

Sweating. The first sign is usually profuse sweating on the face and neck - that is, above the level of the injury.

Mild Increase in Blood Pressure (Up to 140/90). Since the typical resting blood pressure (BP) for a quadriplegic is 90/60 (which is low normal), even a BP of 120/80 could suggest dysreflexia. Until the blood pressure reaches higher levels, the situation is not urgent, but it is important to try to identify and eliminate the cause before this happens.

Severe Dysreflexia - A Medical Emergency!

Hypertension. When the BP reaches 200/100 or higher, it should be considered an emergency because the sudden change from very low to very high blood pressure can lead to convulsions, stroke, hemorrhage or even death. The BP can rise quickly during an episode of dysreflexia, so it is important to check the BP frequently, at least every 5-10 minutes until the cause has been found and eliminated.

Pounding Headache. The headache is due to the sudden elevation of blood pressure; however, the severity of the headache is not necessarily related to the severity of the hypertension. Therefore, headache is not a reliable indicator of when the BP is dangerously high. A headache associated with normal blood pressure is not due to dysreflexia.

Heart Rate Changes. The heart rate can either be very slow (bradycardia) or very fast (tachycardia) during an episode, so heart rate alone does not help to make the diagnosis.

Flushing (Reddening) of the Face and Neck (above the level of SCI) associated with pale, cold skin on the trunk and extremities (below the SCI).

Less common symptoms include nasal congestion, anxiety, nausea, blurred vision, difficulty breathing, increased spasticity, chest pain and "goose bumps." However, these symptoms alone do not suggest dysreflexia.

I would be somewhere between mild and severe. My symptoms from this list are: sweating, mild to high increase in blood pressure; heart rate changes; flushing; nasal congestion; anxiety; nausea; blurred vision; difficulty breathing; goose bumps.

Another site mentions "pilo-erection," the painful feeling on the scalp as the hair follicles go erect. If I brush against my hair at those times, it is quite painful.

What's the difference between the two, Dysautonomia and Autonomic Dysreflexia?

Well, I'm not sure. What I've read describes the former as being an out of balance autonomic system. Certain connective tissue diseases, like Marfans, Ehlers Danlos Syndrome and POTS are included as causes for Dysautonomia. Along with brain injury.

The AD, the causes are more trauma-related, and information explains that it is an interruption in the signals that are flowing up and down the spinal cord.

So, I think the two are at times related and have things in common...but at other times, you cannot simply substitute one for the other. I haven't seen anyone who seems to care enough to listen to figure this out for me. Oh, the nice neurologist who told me I have dysautonomia seemed to listen, and he did show me how the cerebellar tonsils are compressing the brainstem on my MRIs, BUT...I wasn't exactly sure that he understood what the AD was...and how that might relate to me.

Most of the time, I would say that it is AD that I suffer from.

My next post will explain why I was researching this out today...

but certainly, the episode I experienced today would fall right into line with the increased brainstem compression symptoms I've been having lately...

and perhaps...it really doesn't matter.

Again...I don't know. Someone knows out there. Some brilliant neurosurgeon who cares enough to listen to me and dig deeper and listen longer and care enough...

I haven't met him yet, though.


Brandon M. said...

I hear your slight sarcasm in your post and "feel your pain" at least in that genre! I have had 4-5 years of really just absolute Hell. I hate to say that since I know that many "out there" are suffering something well past any notion of Hell and would not ever wish to diminish their absolute suffering. Yet, I am aware enough to know that "your" own situation is always worse than the other person since you are the one going through whatever trials you have been subjected. I have a diagnosis of Pandsyautonomia and CRPS/RD whichever you prefer. Sounds much like what you documenting here. Even though I am (was, prior to being diagnosed and subsequently unable to work) in the outline of the medical field and worked as a Psychologist in a State Mental Hospital, worked with college students, and a myriad of folks in private practice- even with all that education, experience, and not to mention the years of searching online and in the medical colleges libraries for answers, solutions, something!! here I am finding myself, yet again, back online and still looking for something to be hopeful about so that I may awake tomorrow with some sense of encouragement that I am not just sitting here in damned pain suffering just to see how much I may endure before I simply die. I am not someone that relishes in emotional turmoil, or that gets some inner emotional need met by having this sort of drama constantly in my life. I hope that this is not the case. Even the very, very few people that DO understand my situation ask me daily, "Are you having a good or bad day today?" They seem to fail to grasp the fact that plans made in one state may very well be quite different when the time rolls around. Do I make plans at all then? Planning a life around this alone is hellish. PLanning a life with someone that you love more than life itself is almost cruel. Seeing yourself endure is rough at times, but I think that most of us some how manage to get into a groove and at least survive, but when you see the love of your universe suffering from your situation and sticking by you at every step, at every mis-step is almost worse for me. It is like double punishment and although I am grateful beyond words, and humbled at her strength and sense of hope and ability to love in boundless measures, I think the real sting is knowing in your heart how little you can give at times, how few plans can be made and kept, how little attention and time their problems get in the long run, how much you can love someone and watch them suffer because the would scale mountains for an ounce of cure, they would take on every bit of suffering themselves, they will continue to love and give until there is none left- and we must watch this repeatedly and even though we give and try harder than many would imagine, we know that it is never, ever enough. They will always seemingly carry the heavier load and no amount of wishing for this to be different can change that.

This sounds terribly sad and depressing but I am, as ever in bewildered awe of my spouse's strength and ability to love even when I am railing in pain and all I can do is say the words "I love you" and show it in much smaller ways than I would wish. I am amazed and encouraged by her inner beauty to seemingly never keep score, never ask for more than I can give, and always seem to make me feel that I am still that man that once she saw as strong, providing, caring, loving, and someone that would always put her at the apex of my universe. In that, I find more hope and days turn to weeks, and weeks to months and I find myself the luckiest to have her as a spouse, friend, and teacher. So, even in the marsh of illness we can find that "something" that keeps us moving. We all must find that "something" if we intend to continue living with all that these damned diseases bring us. May you find that in your life....Metta to you! -b

By His Grace said...

Brandon, thanks so much for your heartfelt and articulate message! If you blog, I'd love to read your blog! Your writing really touches the heart.

I had to look up "pandysautonomia" as I'd never heard of that before, but it does sound like another version of dysautonomia (at first blush).

Your wife is so blessed to have someone in her life who is so thoughtful and caring. Someone can have a healthy spouse who is able to scale mountains and run relays, but who is difficult to live with or who is possessive or ...

Much rather, I'm sure, all women would want to have someone who is a soul mate.

I have found that being disabled as I am has allowed me finally to slow down, to spend time reading in bed with my husband and listening to radio each night, visiting together, and just having that connection that continues to unfold.

Though the pain is insufferable, there can be found benefits or positives. The pain and suffering makes us someone we'd not be without going through it all. Since you are a psychologist, you know of these things more than I...and yes, we have those days when things look bleak, but I try to remember that "joy cometh in the morning."

What a subject to research and write about, with your abilities, the subject of how our pain, the "chronicity" of it all, affects our emotions, our personalities, our psyches, our hopes and fears. You could do well at this, I can tell.

I'd love to read more of your writing. I pray you find the doctor that I'm also looking for...the one who listens, who looks deeper, who cares more. You deserve it.

I'm also interested in how you ended up with this disease or syndrome.

Thanks for reading here and for posting.

take care

By His Grace said...

hI fOLKS, I don't know if anyone will be reading this blog, this entry is more than 3 years old. I was drawn back here and noticed I ended my post with a prayer to find "some brilliant neurosurgeon." Well, I did find one, at OHSU (Oregon Health and Sciences Univ in Portland), and he stabilized my head and neck in Feb. of 2012. He found where my C1 was not only "non union" ie still broken, in one place, as was found back in NY at The Chiari Institute back in 2007, but Dr. Ragel found that my C1 had TWO OTHER non union sites as well. So, my C1 was still broken in THREE places for over 8 years until Dr. Ragel performed his miracle and stabilized my C1 and skull wonderfully. I do not seem to experience dysautonomia anymore. I told him about this symptom occurring, and he told me that he thinks that when I would bend over, I had enough movement in my C1 pre surgery because of the 3 breaks that they were probably moving slightly and impinging upon my vertebral artery enough to raise my blood pressure and make me dizzy and nauseated and blood cut off to my scalp made it painfully crawl, etc. Certainly makes sense to me, and now that I am "stabilized," I don't have these brainstem issues anymore. However, I am still left with severe, chronic pain, termed "Central Pain Syndrome" which is linked to my spinal cord and head injury. Nothing touches the pain really....it's a rough road, but I AM glad I no longer have to wear my Aspen Collar or Aspen CTO jacket. God bless you. Virginia--By His Grace