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My Life and Orthostatic Intolerance
My life was successful until it was unexpectedly interrupted by a chronic illness. This is the story of how a g-suit saved my life.
I was 15 in August of 1994. My life seemed to be on the right track. I was at the top of my class and had been invited to be on the academic decathlon team. I had a summer job and I was keeping in shape to participate in varsity sports. I also had a freshly renewed vision for my life because I had just visited the college of my dreams and seen my future education and career. At the same time, I was preparing for the hardest years of high school; I had no idea how hard they would become!
Then I got the "flu." (It was a stomachache that went away and a headache that did not go away for almost a year!)
The first day of class (junior year) was my last full day of high school. I could not put it into words at the time, but my brain was gone already and I knew it. After this, I was not able to keep up with school.
Three months later (at Thanksgiving), I had a particularly memorable OI experience. (I would not know anything about OI - Orthostatic Intolerance - and how it affected me for another 6 years.) It felt like a force pushing me down to the ground. So I could at least be near my family, I spent a lot of time lying on the floor. Around this time, my family and I were starting to realize that even if the daily headaches went away, I was still very sick.
Just before Christmas, I had my first "crash" (probably another OI experience of circulatory shock). It was a "stop the world and let me get off" feeling. It made me desperate to cut everything out of my life just so I would survive. Until then I was at least trying to keep my life together by doing the minimum, but it was falling apart, and the pieces were slipping through my fingers.
A week later, the day after Christmas of 1994, the doctor told me the problem could be Chronic Fatigue Syndrome (CFS). I did not see that coming! (Since my mom had had CFS for 6 1/2 years at that point, I thought I knew a lot about it, but there was so much I did not know or understand until I had a personal experience with CFS.) Stunned, I went home and looked at a pamphlet with symptom and diagnosis criteria. I had a classic case. By the time the diagnosis was official at 6 months (February 1995), I had 30 symptoms and had not found a medication to treat any of them. They basically broke down into several categories - pain, sleep problems, thinking problems, and energy problems, which left me bedbound.
In the following years, I dropped out of high school and got a GED (a high school equivalency diploma) so I could start college through home-study courses. By then, the free fall of my health had finally stopped and I began to level off. I had no idea how many levels I would have to go up to be well again. I learned to drive, but could not continue because of the energy required and thinking difficulties. As soon as I could read again (at 2 years), I applied to college and took SAT's (college entrance exams). I was accepted to my dream college, but I have since delayed starting school because college requires so much more than just being able to read. My family and I moved, which eventually caused a relapse. Despite setbacks, I have tried to remember that I am the same person inside with the same values, interests, and goals even if I am not able to pursue them. I have been able to use this time to get closer to God and heal other situations that had happened in my life.
In early 2000, I decided to take advantage of any opportunities I got to "have a life," no matter what the payback (symptoms and extra time in bed) would be. That decision led to four wonderful events that year and a chance to make even greater progress in my life.
By the summer of 2000, although I had learned a lot about CFS from experience and reading, there was still something about it that was indescribable and elusive. Then I began to learn about the relationship between Chronic Fatigue Syndrome (CFS) and something called Orthostatic Intolerance (OI).
I learned that Orthostatic Intolerance (OI) is a condition where blood pools in the feet and legs when sitting or standing rather than returning to the heart and brain. Orthostatic Intolerance (OI) can be a single illness or problem or it can be a part of many illnesses. Some of these include Chronic Fatigue Syndrome (CFS), Shy-Drager Syndrome, Addison's disease, Parkinson's disease, mitral valve prolapse syndrome, and 10% of diabetics, in addition to affecting people who live in a wheelchair. Symptoms of Orthostatic Intolerance can include fatigue, inability to concentrate, inability to think clearly, dizziness, headaches, and lack of energy. Often these sick people say they feel "almost well" while lying down. There is a simple test for Orthostatic Intolerance.
Without the test, OI is a hidden symptom because it is only identified by all of the other symptoms it causes.
For me, OI explained a lot of things happening in my life, and I learned that my body had not betrayed me but was doing everything it could to support me.
I began to realize that I had unknowingly been treating OI symptoms by lying down as often as necessary. I would often get to the point of feeling almost well while lying down and then I would get up again. (That was the wrong thing to do!) The symptoms would sometimes return instantaneously. Sometimes it would be several hours before they became overwhelming again and I would have to lie down until the next day.
I had an OI experience once while shopping. I had been walking around the store and then I stopped to rest for a few minutes. Suddenly I felt faint. I quickly found a wall to safely slide myself down to the floor. It took awhile for my body to recover. It had been a scary experience for me to have that feeling in public, but I really scared the lady that worked at the store and watched the event happen.
OI may also explain problems I had when I was well, before I got CFS, that are abnormal for a healthy person. I would faint, get dizzy, have blurry, fuzzy, or gray vision, or get a headache when standing up from lying down or while running long distances or when stopping between tennis points. I also got sick and nauseated when overheated. My mom had similar problems, too, long before she got CFS.
In 2001, I had the unexpected opportunity to be the first in this country to try a treatment for Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI) and it worked for me.
In reading Dr. David S. Bell's book, Faces of CFS, one of the stories told how he and Dr. David Streeten (now deceased) watched a Chronic Fatigue Syndrome (CFS) patient "disintegrate" due to OI after only 20 minutes of standing. Then they inflated a pair of MAST trousers (Military Anti-Shock Trousers) the CFS patient was wearing and that brought her "back to life." It was an exciting demonstration of how easy it is to replicate some Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI) symptoms and how they can be instantly relieved. Unfortunately, MAST trousers are not practical for everyday living because when they are inflated, they are like a whole-body blood pressure cuff. When thinking and talking about this, God dropped a quiet question into my heart: "What about a g-suit?"
I found out that a g-suit is an anti-gravity garment worn by fighter pilots. When they are pulling positive G's, the suit inflates and prevents blood from pooling in their feet and legs which would cause them to lose consciousness. NASA astronauts also wear g-suits when they experience Orthostatic Intolerance (OI). A standard g-suit is like a pair of chaps, with an air bladder that inflates over 5 areas of the body - at the abdomen, the front of each thigh, and the side of each calf - and cut-outs that allow for mobility at the knees and groin. When manually inflated, a g-suit provides comfortable, gentle, and even air pressure. The compression, which is easily adjustable, aids in blood circulation and diminishes the symptoms of Orthostatic Intolerance (OI). They are MAST trousers that can be lived in. (G-suit - Pictures and Basics)
I was surprised to find that research studies have already been done in which they successfully used a g-suit as a way to alleviate symptoms of Orthostatic Intolerance (OI). They found that a relatively small amount of pressure (40-50 mm Hg) made a big difference. Despite the g-suit's success, it seems that no one has followed through with this information for mainstream everyday use. I also did not find any information that said the g-suit would not work.
So, in order to see if a g-suit would work for me, it was necessary to find (Sizes, Buy) and try (Fitting, Wearing, FAQ) one on an everyday basis. I have worn a g-suit since August 2001 with extremely good results. I am no longer bedbound. I am now up to homebound, and I am continuing to improve. Before this, I had been mostly bedbound with Chronic Fatigue Syndrome (CFS) for 7 years. My mom has been homebound (sometimes bedbound) with Chronic Fatigue Syndrome since 1988 and has worn a g-suit with good results also. She has been able to see what problems are OI and what problems are not OI and seek further medical treatment for the other problems. We are amazed by what blood circulating to our heart and brain can do, like being able to stand up and think at the same time! The improvement in the quality of our lives has been tremendous.
I have gotten to do a lot of things that I did not think I would ever get to do again. The first year with a g-suit was about stretching my life from 2-hour days to 8-hour days. The second year, I increased my self-care. The third year, I started driving again. It is much easier with a brain now! I tried fun classes and activities outside of home. I took ice skating and horseback riding lessons and some computer classes. I also started a new hobby in genealogy. The fourth year, my family got a puppy. I have learned to train her. I have also tried to work steadily on this website.
While I am sure that each person's results with a g-suit will vary because of differences in illness, symptoms, level of disability, expectations, and fit, these have been some of my experiences with wearing a g-suit.
Not many g-suits are available for all the people with Orthostatic Intolerance (OI) to use. Wearing a g-suit for everyday living will require some design changes. There is especially a need for sizing for all body types including children. Color, zipper locations, being washable and affordable are also important considerations. A designer and manufacturer are needed to redesign and make g-suits for everyday use.
There is also a need for further research about Orthostatic Intolerance and its potential causes and treatments.
As I was gathering information for this website, I was told about an exciting new development for Orthostatic Intolerance (OI) called an Impedance Threshold Device (ITD) (a small, simple breathing device).
I will try to make the information available through this website. I would like to give other people the opportunity to have the improved quality of life that I have experienced. I would not have wanted to miss out on all of the fun things I have gotten to do these last few years.
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