Sorry I was out for a little while, and when I came back, there were some administrative changes to the account that I had to get used to using. I think I had told the story right up to the point where I was diagnosed with IH. I will try to address the topic of medications today.
Some people with IH are able to lead productive lives if they find a medication that works for them. Others do not find a medication that works and the disease becomes disabling. This is hard for the friends and family members of IH sufferers to understand because they don't understand how strong the sleepiness is. They try to compare their own experiences with that of the person who is ill. If you have IH, the sleepiness is very strong. Medical professionals reference sleep drunkenness as a symptom of IH, and I suffer the most from this aspect of the illness. No amount of coffee (yes, I have an ulcer, too) or morning exercise is enough to pull myself out of this drunken feeling, and sleeping longer does not rid me of the confusion and stiff muscles. What makes it hard for others to understand is that there are times when you don't feel quite so bad. As a member of a sleep support group, I have heard many horror stories...I have to say, please, please don't interpret this as "the illness is not real." It is painful to have a good morning, for once, and have someone else ruin it by suggesting that you can choose to not have the disease. If the patient was diagnosed with an MSLT, they could not have "faked" their sleep patterns because you can't fake something when you are asleep.
On to the side effects....Some of the common problems with the stimulants that are prescribed for IH are that they are ineffective, they are too effective, they change your personality, they cause additional unhealthy sleep hygiene behaviors, they decrease concentration, and they promote anxiety. Currently, there are four medications that are most commonly prescribed for IH (although there may be other options, and this list should not at all be interpreted to exclude any possible options). These are Ritalin, Provigil, Adderall, and Dexedrine. I have used Dexedrine, Provigil and Adderall from this list, but before I was diagnosed, I was prescribed other stimulants as well.
I will relate my experience with these medications, but I would like to say that people experience these meds differently. Some people do very well with a medication, and others have a horrible experience with it. This may be a difference in body chemistry, it may be a difference in which type of IH the person has... No-one really knows. What I am trying to say is that my experiences are just that---my experiences. If you have IH, you should try everything you need to try until you find something that works.
Dexedrine was not effective for me until the dose was raised to a pretty high level. At that level I felt pretty good, but my blood pressure was too high to consider this a long term remedy. I had a horrible experience with Provigil as it started to become less effective for me over time. It worked well in the beginning, but it made me snappy and irritable (it also made my hair fall out, but not to the point that I experienced any baldness...just mass thinning). I tried to get used to this feeling so that I could acclimate to the medication, but it continued to be less and less effective as time went by. After six months, it provided little relief and a lot of irritability. It had really changed my personality in such a way that I did not enjoy my life, and I responded to others in a flat and disinterested manner. I lost the ability to multitask, and I became obsessive about the things that I chose to attend to. It was, however, the most effective medication in terms of addressing the sleep drunkenness, and I miss that feeling of being ready to start the day. I am currently taking Adderall, and I am much happier. I do still suffer from sleep drunkenness quite a bit, but once the medication does take effect, I begin to feel much better. I am experiencing some hair loss, but not as much as I did before. I worry that this medication is not strong enough to help me to get to work on time when I go back. I will likely request an increase in the morning dose, and a decrease in the afternoon dose when I see the doctor next time, so that I am ready to go back to work in the fall.
I have come to understand that I will find some relief with medication, some with lifestyle modifications, and some through my support group. There is no magic pill that will make me fell normal. I can only hope to feel better than I do without medication. Understanding this was a big step for me, and it required a sort of resignation (which is so very, very unlike me---Never say die). However, I have been a lot less frustrated with the medications as I accepted that it would not be magically better one day. It sounds sad as I am typing it out, but I really am finding that my life is pretty good in spite of the illness. It requires careful management, but it can get better----not normal, but better.
Monday, July 21, 2008
Monday, July 7, 2008
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.
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.
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