I explained in my first post that I have Hypersomnia and that it is a huge part of who I am as a person.
Most people have probably never heard of Hypersomnia before, as it only affects around 5% of the United State’s population. It is so rare that even though we have so many organizations spreading knowledge and awareness of seemingly every cancer and disease that we are starting to run out of colors for ribbons, there is no organization for Hypersomnia.
I went online to try to find such an organization in order to post a more professional description of what exactly Hypersomnia is, but was unable to find one. I did however find that Hypersomnia research is being conducted by the National Institute of Neurological Disorders and Stroke (NINDS), which is a government run medical research institute.
NINDS has an information page on Hypersomnia that I will now post some of the information from:
What is Hypersomnia?
Hypersomnia is characterized by: recurrent episodes of excessive daytime sleepiness or prolonged nighttime sleep. Different from feeling tired due to lack of or interrupted sleep at night, persons with hypersomnia are compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. These daytime naps usually provide no relief from symptoms. Patients often have difficulty waking from a long sleep, and may feel disoriented. Other symptoms may include anxiety, increased irritation, decreased energy, restlessness, slow thinking, slow speech, loss of appetite, hallucinations, and memory difficulty. Some patients lose the ability to function in family, social, occupational, or other settings. Hypersomnia may be caused from a physical problem, such as a tumor, head trauma, or injury to the central nervous system. Certain medications, or medicine withdrawal, may also cause hypersomnia. Medical conditions including multiple sclerosis, depression, encephalitis, epilepsy, or obesity may contribute to the disorder. Some people appear to have a genetic predisposition to hypersomnia; in others, there is no known cause. Typically, hypersomnia is first recognized in adolescence or young adulthood.
Is there any treatment?
Treatment is symptomatic in nature. Stimulants, such as amphetamines may be prescribed. Changes in behavior (for example avoiding night work and social activities that delay bed time) and diet may offer some relief. Patients should avoid alcohol and caffeine.
What is the prognosis?
The prognosis for persons with hypersomnia depends on the cause of the disorder. While the disorder itself is not life threatening, it can have serious consequences, such as automobile accidents caused by falling asleep while driving. The attacks usually continue indefinitely.
What research is being done?
The NINDS supports and conducts research on sleep disorders such as hypersomnia. The goal of this research is to increase scientific understanding of the condition, find improved methods of diagnosing and treating it, and discover ways to prevent it.
My Story:
For my own personal experience with Hypersomnia, it started when I was about 10 years old. Before then, I was a huge tom-boy and was constantly outside running around or riding my bike. I could never sit still and dabbled in all sorts of different sports including soccer, gymnastics, and basketball.
Then during one summer, I was standing too close to a boy as he was batting during a neighborhood game of baseball. I was hit in the face by the bat and flattened by nose. I blacked out completely. I don’t remember much after that, I remember being on one side of the yard, getting hit, hearing screaming and people yelling my name but seeing nothing but black and “stars” and then being on the othe
r side of the yard. Witnesses said that I ran/stumbled as soon as I were hit and was holding my nose. I had two black eyes and had to ice my face. However, there isn’t much a doctor can do for a broken nose so I was left to heal by myself.
That same year my dad’s company was bought by another larger company. He was considering leaving to go to a completely different company but the new bosses gave him a large bonus in order to stay. As a result, my brother and I got our own little 10” TVs in our rooms and we choose between either a PlayStation (the first one) or a N64. I chose a N64 and I started to become even more of a gamer than I was before on o
ur SNES. After that summer when I got hit in the face with the bat, I stopped playing outside so much. I preferred to do things indoors that were more sedentary. Not too long after, I started needing more sleep than I had ever needed before.
I used to be the early bird and would wake up at 6 am even on weekends. I always was first up and claimed the TV long before anyone else. Shortly, after that terrible head injury I started sleeping in. At first on weekends it was just till 8 am, then 9, eventually I was sleeping until 10 am if I could. It got to the point that I needed to take naps after school. By the time I entered high school I had gained a ton of weight, was no longer in shape, never played outside, and took naps whenever I could.
My parents called me “lazy.” I tried to explain that I couldn’t help it, I was just tired all the time. They took me to doctors and the doctors would say things like “she’s being a normal teenager” or “don’t stay up so late at night, and don’t drink caffeine.” They never did any tests except for a blood test to check for low iron, which I did indeed have, but not enough to cause the extreme tiredness I was experiencing.
By the time I graduated high school and entered collage, I was sleeping an average of 16 hours a day. I arrange for my classes to never start before 10 am, would go to class and then come home and take a nap before doing any homework. On weekends, I was lucky to be awake by noon.
I was constantly getting into shouting arguments with my parents over the amount of sleep I was doing. It caused lots of stress and anxiety. I hated them for calling my fat and lazy when I felt I couldn’t help it. I was always depressed; sometimes more than others because I was never able to do things like normal people and I was overweight and never able to loose the excess no matter how hard I tried.
I was constantly hungry, craving carbs and sugary snacks. I was only able to function at all because I was a frequent coffee drinker. Once I started college, especially with the hours and hours I had to be in class and then studying for the classes, I became a coffee addict. I didn’t like regular coffee so I would drink Mochas, specifically Starbucks Mocha Frapachinnos as I don’t like hot drinks normally. I would order on my way to classes a Venti (extra large) Mocha Frap with an extra shot of espresso blended in. I would also get bottles of Coke or Mt. Dew at school when the coffee was gone. Then if I had so much homework or studying to do that I couldn’t take a nap after my classes were over, I would again hit the Starbucks for yet another Venti Mocha Frap extra shot. That didn’t help my weight problem one iota.
Finally, in February of this year (2011), I started feeling as if I had a nasty head cold that just wouldn’t go away. I fell asleep in my office at school where usually I was able to stay conscious while I was out. We had just changed insurance to Kaiser Permanente and I had a completely new doctor earlier in the fall. I went to see my doctor about the cold and found out that I had Mono. I tried to explain that I was always tired, and after a long discussion where I relayed all the symptoms that had been plaguing me for years and what my previous doctors had said she referred me to a Neurologist. She said she thought I might have a disorder called Hypersomnia and that only a Neurologist would be able to know for sure. I had to wait until I was over the Mono and then I was sent to the specialist.
The Neurologist thought that I may have it as well and scheduled a sleep study to test for it. I had to go to a special floor at a near by hotel where they had video surveillance in the rooms, and nurses/technicians running the studies. I had to not nap for an entire day, which was extremely difficult and painful. If I didn’t sleep or take a nap, my body would start to ache and give me pain as if I had be pushed from a moving car. I then had to report to the study and they hooked up dozens of wires to my head, chest, legs, and arms. I was then told to go to sleep “normally” so that the sensors could detect what cycle of sleep I was in, how much my limbs twitch or move, my breathing, and dozens of other things about my sleeping habit. In the morning, they woke me up and I had to say the entire day still hooked up to the sensors! They would come in periodically (usually every 2 hours) to let me “take a nap.” I then would be woken up after 15 minutes of “napping.” Normal people would be unable to fall asleep after a full nights rest in less than 10 minutes or at all. I fell asleep every single time they said I could. In fact, I tried to fall asleep when I wasn’t suppose to and they had to come in and keep me awake until it was time to nap again!
I then had another appointment with my Neurologist a few weeks later. He said that I did in fact, have Hypersomnia. He explained to my parents and me that it is a very rare disorder caused by brain damage. He told us, that the brain damage is caused by either a blow to the head (the baseball episode) or a virus. It damages the receptors in the brain that tell your body that you have had enough sleep and that it is time to be awake and alert. If you have Hypersomnia, those receptors are damaged and your body believes you are suffering from Sleep Deprivation. That then causes your body to crave carbs and sugary foods in order to get “needed energy” that you don’t actually need. He believes that my weight was caused to do the Hypersomnia and the affects of it. The Neurologist went on to explain that all my coffee drinks and pop was my body’s way of “self-medicating.” That the only reason I was able to function as well as I could was because of that self-medication. He believes that with treatment, I could get better grades, loose the weight, and be able have a better life in general. He also said I was lucky to find out when I did, that the people he usually sees getting diagnosed for the first time are often older in their 50s or 60s!
I was prescribed stimulants, which trick my brain into thinking that those receptors are in fact intact and working, normally. I now have tons of energy and am able to attend classes, work, and have a social life no problem. A side effect of the drugs is loss of appetite so I no longer feel hungry. Ever. Not even a little tiny bit. I have to force myself to eat and when I first started, I forgot to eat some meals. I have to set alarms and be very careful what I do eat, so that I am getting the necessary nutrition my body needs. I eat lots of fruit and vegetables and some protein and try and stay away from sugary foods or breads. I have lost in two months 50 lbs. The doctor says that it is okay to loose that much weight in a short timeframe, since I was Extremely Obese. It also helps that now I am active every day and can’t sit still and do nothing anymore, so now I am getting more exercise.
It has completely changed my life! I can’t even begin to explain the huge impact it has. Before, I was sleeping all the time, didn’t want to go out with friends, and was barely awake. If it was awake, I had to be doing homework or studying because the rest of the time during the day/night I was asleep. Grocery shopping was enough to make me want to take a nap. I spent all my money I earned babysitting on coffee. Now I have lots of money that I don’t know what to spend on since I don’t need coffee, I am up and moving by 8 am, have lots of time and am able to focus and concentrate so much better than ever before!
I can no longer drink coffee or caffeine to the excess any more. I can still have an occasional pop or coffee drink if I so desire but I have to be careful or I will get very shaky and jittery. Another side affect is acne, which I had before, but now it is extremely bad because the drugs make my skin oily. I try to wash and shower twice a day to keep it under control but the drugs have made such a huge difference I would rather have gross acne and be able to LIVE than have clear skin and be sleeping all the time. If I never get a boyfriend because I have acne on my body (not just my face) then so be it. Now I can go out and do and live my life and I am willing to take acne than still suffer from the Hypersomnia.
I also now can be extremely talkative and not realize that I am going on and on about things unless someone tells me. I essentially am taking legalized “speed” although; it is different from what you would buy illegally on the street, as it is safer and regulated by the FDA. So that is why my skin looks like I am a meth addict, I can be jittery, and too talkative, as those are symptoms that people who do “speed” experience. The reason I am not “high” all the time is because of my brain damage. If I didn’t have Hypersomnia the medication would affect me completely differently than it does now.
However, many parts of my personality have changed since I began treatment. I am pleased with the changes and so is my family as well as seemingly my friends. If you think you may be suffering from Hypersomnia, I suggest talking to your doctor and ask to see a Neurologist about it. Most likely, your primary doctor will have never heard of Hypersomnia. Be aggressive and don’t give up! However, remember, that only 5% of the population has it. However, that 5% is only those that are diagnosed. I believe that it is a bigger problem than doctors think and that it just goes undiagnosed so often.
Again, it is hard to understand exactly how bad it was before I was under treatment for Hypersomnia. It is also hard to explain the vast difference between before treatment and after. I don’t think anyone can really understand unless they have suffered or someone in their family that they live with and see every day has suffered. You really cant’ over-exaggerate the affect.
So that’s Hypersomnia…so when people say “what the heck is wrong with you?” I can now say with supporting documentation that I am brain damaged. I have Hypersomnia and that is what is wrong with me. Hypersomnia is not something that can be cured. I will be on medication for the rest of my life. I will probably be unable to have any children as the medication will 99% change of causing a birth defect or mental/developmental defect in the child. Luckily, I always wanted to adopt a child, and there are more laws protecting the rights of parents who use surrogate mothers.
Hypersomnia has made me who I am today; the good and the bad.
And that’s it…that’s all she wrote….
1 comments:
Thanks for your sharing. My friend have same trouble with Hypersomnia. Waiting new your articles.
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