Dysautonomia

Dysautonomia is a term used to define a dysfunction of the Autonmic Nervous System. Basically, the autonmic nervous system controls the automatic type functions of the body - especially the organs and glands.

There are many types of Dysautonomia and some have been given names such as Shy Drager Syndrome, Parkinsons Disease or Chagas' Disease. (I don't have any of these) There are also many different causes and the researchers and specialists agree that there are probably more causes that they have not yet identified.

When the autonomic system is dysfunctional it can affect many body functions and cause a large variety of symptoms. It can affect heart rate, blood pressure, digestion, respiration, urinary function, body temperature, metabolic and endocrine systems.

One area of dysautonomia is known as Orthostatic Intolerance syndrome. One of the main catagories of OI is known as POTS - Postural Orthostatic Tachycardia Syndrome. When a patient with POTS stands up, their heart rate suddenly rises and they may experience weakness, dizziness and sometimes syncope (fainting). Here is why this happens. The body is basically a large fluid column. When a person stands up, all the fluid should be pulled down by gravity - the feet would get all the blood and oxygen and the brain would be emptied. But God created humans with some amazing ways to cope with this problem. As soon as we stand, the brain releases chemicals and hormones that do several things. Most importantly, they cause the veins in the lower part of the body to constrict, squeezing the fluid upwards. Then we have valves in the veins that keep the fluid from flowing back down and the hormones also tell the heart to pump a little harder to keep the fluid moving upwards.

For those with POTS, the veins, for one reason or another, are not doing their job. The heart is told to pump faster but it doesn't help. Often, this is because a person with dysautonomia has another complicating factor. They tend to have low blood volume. A normal person looses about 9% of blood and oxygen to the brain upon standing. A POTS patient looses about 30% of blood and oxygen to the brain.

The typical treatments for POTS is 1) to help the veins in the lower body work through constriction (wearing very heavy compression hose) and through medications 2) increase blood volume through increased fluid intake in connection with high salt intake and with medications 3) reduce the speed of the heart rate when standing with medication. Sounds easy enough, but these are actually quite difficult to do and the medication choices are varied and work differently for each patient.

Some people only experience POTS, while others experience a variety of other systems that malfunction. At this point, I have been diagnosed with primary POTS and partial dysautonomia.

For most people with my type of dysautonmia, every day can be different. For some reason the symptoms are worse at times and better at other times. Some people have one system affected and then that gets better and another system stops working. For others, the problmes just continue to pile up. Some people with POTS find their symptoms slowly getting better and even get to a point where they are hardly bothered by them any more. Other people continue to decline and end up bedridden.

My symptoms have increased throughout the past year. Along with my POTS, the dysfunction of my autonmic system (partial dysautonomia) has caused my stomach to empty very slowly. You may remember that I had several stays in the hospital this past year and that Bill and I traveled to the Mayo Clinic in November. This was all because my autonomic system was not correctly directing my disgestive track.

Cognitively, I often feel very fuzzy in my thinking - kinda like it is the middle of the night. It also feels like I don't think as logically as I used to, though my family tells me that this is not noticeable to them. I have a hard time if there are lots of conversations going on at once or if I have to concentrate very long on one thing. It isn't like dementia or even age related memory loss, it's just like I am trying to function in the middle of the night. Acutally, I'm having to function with less oxygen to my brain so I guess it makes sense.

I have other systems that are affected as well and continue to see specialists in various areas to help deal with these problems. Some of these may improve over time, but I may also experience problems in new areas in the future.

There is no cure for dysautonomia unsless there is a clear cause to treat such as a tumor on the pituitary gland or adrenal gland. But for most people, the cause is not clear and therefore not treateable. Instead of curing POTs and dysautomia, I deal with and treat each symptom as it comes. This is why we have seen so many specialists - each one deals with his/her specific area and helps me with medications and other coping techniques.

There are a couple of things that might be helpful for you to understand.

1) I can not stand very long. Standing or even sitting with my feet down always causes dizziness, nausea and other symptoms. I have different amounts of endurance depending on the day. When I am having a better day, I can wear my compression hose and make it to church. However, you may notice that I don't stand and talk in the lobby and it may even look like I rush through the lobby with only a quick "Hi" as a greeting. That's not because I don't want to see people, I just can't stand up!. This is also why I sit during worship. If you see me walking in with my cane, it tells you that I am feeling particularly dizzy that day. I use the cane for stability.

2) Even at home where I can sit in my recliner with my feet up, I have a limited amount of energy and cognitive focus. (I spend most of this energy on my two kids who are schooling at home this year.) However, I do really miss seeing people at church and do love to have visitors. But I need vistors to come for only 15-20 minutes at a time and to call before stopping by.

3) My biggest challenge as a mother and wife is providing meals for my family. We are learning to do things a bit differently and I use my crock pot a lot. I have an agreement with Kathy - our church meal coordinator that I will let her know when I am having a really bad week and she will provide a few meals until I come back out of the valley. If you want to help us in this you can contact the church office and Jackie will give you Kathy's number so that you can be on her list of meal providers.

4) Email is a great way to connect with me. When I am not doing well, I can still get your message and when my brain is functioning and I'm doing OK, I can answer you with a short reply, or when I'm doing really well, with a long reply!

5) We bought a wheelchair to help expand my options for outings. I find it really helpful to get out shopping or go on other outings with the family. It was also very helpful in our travels to see doctors across the country. It has special legs that can raise up so I can have my feet up and is lightweight and foldable so we can load it in the car. I tell you this because you may see us at target or Fred Meyer and wonder if I am unable to walk. I can walk, but the wheelchair allows us to go places that I would not have the stamina for otherwise.

6) My heart still loves God and I still have a passion for serving Him. A lot of things have been difficult and emotional, but my faith is not shaken. I hope the rest of this website will not only show you that, but will encourage you in your journey of living with him.