DYSAUTONOMIA... STORY OF MY ILLNESS

Image via Wikipedia

(FYI - As you may have noticed, this was written in July 2009. Not all information written here is still the same but it does give a good description of my illness.)

A lot of people either don't know I've been sick or don't know very much about my illness. So I thought I'd take this opportunity to write about it and try to explain it.

I have been diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians in our area have never even heard of it. I was very blessed that the cardiologist I was referred to knew what it was and recognized the symptoms right away.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case it causes very frequent syncopal episodes (fainting/unconsciousness). I have had over 175 syncopal episodes since August '07! In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously unaware of like blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc.

Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for changes in posture which causes extreme dizziness and syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds. When you stand, your body is supposed to adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood pooling in my legs and abdomen. Thus my heart beats way too fast to make up for the reduced blood volume transferred by each beat. This usually results in my blood pressure dropping incredibly low and then I pass out due to lack of oxygen to my brain. Once I am laying on the ground, I eventually regain consciousness because the oxygen is then adequate again. A lot of the time while I am unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. I have had several tests and have been told it is not seizures, it is just something my body does due to lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include (this is the short list!) :

* Dehydration (this is significant for me and makes my b/p lower)
* Major fatigue and weakness
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat or cold
* Major gastrointestinal issues
* Sleep disorders
* Small fiber neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever
* Noise/light sensitivity
* Visual disturbance
* Tremors
* Pain

It is thought that I have probably had this since childhood but it became active in 2007 after I had a host of medical issues in late 2006 and early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socked but opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden most of the time as I can't walk very far without the fear of passing out.

In September of last year (2008) I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was an answer to prayer because I have really poor veins. However, in April, I developed acute sepsis and spent 5 days in the hospital. I eventually had to have it taken out and another one put in at the end of May. You can read more about that in my post, MY MOST RECENT HOSPITAL STAY.

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. I would also appreciate your prayers. Even though there is no known cure, I know our God is a BIG, BIG God and He can do anything!

Thanks for stopping by. I'd love to know you've been here so please leave a comment if you have a minute! See ya soon!