Welcome

Welcome to my blog about excessive sleepiness. My name is Amy, and I have been diagnosed with Idiopathic Hypersomnia (IH). It is my hope that this blog can become a form of advocacy for those of us with IH, and that by sharing both my personal experiences and what I learn about the disease, some may be able to better manage the illness.

IH is a disease of unknown origin that results in Excessive Daytime Sleepiness (EDS). Although the cause is not completely understood, there is research and data available regarding IH. The "idiopathic" part of the name is a little misleading because it sounds like nothing is known about the illness. However, that's not exactly true. IH does have established diagnostic guidelines and recommended treatment protocols. When EDS does result from a known origin or when it is determined to result from fatigue, Idiopathic Hypersomnia is ruled out. I have read about three documented catagories of IH, and there are plausible theories as to what might cause IH. I will attempt to gather as much of that information as possible and to put it into a useable form as I go and as I learn more.

I should start by introducing myself and describing my background. I am a 34-year-old woman, and I live in the Pacific Northwest. I am a professional educator, and I hold a Master of Science. I am married, and I have three wonderful children (although one is not my natural child, I love him just as much). I have been excessively sleepy since my childhood years. I struggled with it throughout high school, college, and most jobs I have had. I have been called lazy, incompetent, and forgetful as result of my disease. I was penalized for it in my grades in high school, and I was told to get to bed earlier when I tried to explain how tired I was. It has always been present in my life as far as I can remember, although it has been better and worse at different times.

When I got pregnant with my third child, I became sleepier than I had ever been. When I returned to work, on a half-time assignment, I struggled to get to work by 10:00 am. I felt groggy and forgetful, and I was not able to provide instruction very well. It was at that time that I began seriously trying to figure out why I felt so poorly. I went through many, many tests to determine the origin of my sleepiness, but time after time, the results indicated nothing. Nothing at all. It was then that people began to suggest that it was all in my head. In case I have caught the attention of any medical professionals, I want to state something quite clearly. This is painful. Please don't do that to your patients. You are the only people who might be able to understand what is going on. If you give up on your patients, they have no-one.

I have been tested/examined for Multiple Sclerosis, full arthritis panel, thyroid, parathyroid, hormone panel, HIV, Cushings/Adrenal Fatigue, blood sugar/pancreatic function, Fibromyalgia, nerve conduction analysis, heart conditions, Chronic Fatigue Syndrome, kidney/liver function, Sjogren's Syndrome, lupis and other autoimmune diseases, ....what else am I forgetting? Some of these tests have been done repeatedly to measure change over time.

Along with the testing, I tried the full spectrum of lifestyle changes and alternative medication treatments to remedy the sleepiness. Among the many things I have tried are going to bed earlier, daytime naps, yoga, herbal supplements, weight loss supplements (OTC and Rx), accupuncture, hypnosis, meditation, orange juice, jogging, swimming, biking, going off of coffee, drinking more coffee, energy drinks, vitamin supplements, no carb diet, mediteranean diet, diabetic diet, cabbage and tomato soup diet, anti-depressants (although I now know that I wasn't depressed, I was tired), sweat lodge sessions, ....what am I forgetting?

My point to listing all of this out, is to try to avoid the conversation that most naturally occurs when people learn that I have IH. Well-meaning folks often try to suggest some honey-vinegar remedy that their grandmother used. I have already tried it (I actually have tried that one). I think this happens because people who have healthy sleep and wakefullness patterns cannot wrap their minds around the thought of sleepiness as an illness. I have to stress this point. The sleepiness of IH is not like the sleepiness of healthy people. In healthy people it is transient, and it can be remedied by some of the things I mentioned above. Suggesting that green tea will help someone with IH is like suggesting orange juice to someone with cancer. It might help a little bit. It might. However, if it were a significant cure, those of us with this disease would not be suffering as we do.

Back to the story...Eventually, my mother told me to go in for a sleep study. My mother has Obstructive Sleep Apnea (OSA) and has been treated for it for over 14 years now. Since my mother had been severely obese, I had never considered that I might have OSA. In my ignorance, I thought that only obese people have apneas. Clearly, obesity can be a contributing or even a causal factor, however, I have since learned two things. It is not the only causal factor, and I do indeed have OSA. The Doc noted, though, that I was sleepier than most OSA patients, and he mentioned the possibility of the IH. I didn't know what that was, and I was trying to stay positive, so I mostly ignored that part.

Strangely, I was thrilled to be diagnosed with the OSA. For those of you who don't get that, it's not that I am a hypochondriac. I was happy because a diagnosis leads to a treatment. A treatment leads to feeling better. This is how I began the Continuous Positive Air Pressure (CPAP) treatment. Although I did feel better, I continued to not feel normal. I was never rested. I used the CPAP religiously, and I could sleep 10 hours or more and feel very tired. Doc recommended that I come in for a daytime study called a Multiple Sleep Latency Test (MSLT). The next day, he called me and told me that I do indeed have Idiopathic Hypersomnia.

Unfortunately, I am running out of time for right now. I will try to post more this evening to at least finish telling the story.