More on Idiopathic Hypersomnia

I know I have mentioned Idiopathic Hypersomnia in previous posts, but I wanted to expand more on it in a single post and provide more details. In my opinion, even medical personnel are unfamiliar with this concept because it is so new. I thought putting the information in one location might help others the way it helped me.

When I scheduled my appointment with the sleep clinic physician, the receptionist seemed confused about my use of the term “idiopathic hypersomnia”. I was surprised to find that even the sleep clinic didn’t seem to have any idea what I meant by it. “Idiopathic” is a fancy medical term for “unknown cause”. “Hypersomnia” is oversleeping or sleeping excessively.

“Idiopathic hypersomnia is an uncommon sleep disorder that causes you to be excessively sleepy during the day even after a good night’s sleep. It also often causes difficulty waking up after you’ve been asleep at night or for a nap. Naps generally aren’t refreshing.”

_{^{https://www.mayoclinic.org/diseases-conditions/hypersomnia/symptoms-causes/syc-20362332#:~:text=Idiopathic%20hypersomnia%20is%20an%20uncommon,Naps%20generally%20aren’t%20refreshing.}}

To put it simply, Idiopathic Hypersomnia (IH) is in the same family as narcolepsy. The difference between the two is narcolepsy causes you to somewhat instantly fall asleep after a trigger (anger, increase in heart rate or blood pressure, etc). Whereas, IH, is just when you are sleepy when you wake up and throughout the day no matter how good of sleep you got or how much you sleep.

The doctors are currently convinced I have sleep apnea which is causing a lack of sleep. Sleep apnea is usually when a person has trouble breathing at night causing snoring and gasping for air causing the person to wake up (even if they don’t recall it). It can cause extreme fatigue because the person doesn’t cycle through sleep like normal and it causes constantly interrupted sleep. Sleep apnea is usually found in those who are overweight or have other contributing illnesses. Sleep apnea is extremely common, but if left untreated can cause severe heart problems later in life. It can be treated with a sleep mask machine called a CPAP or BiPap.
_{^{More information on sleep apnea: https://www.sleepfoundation.org/sleep-apnea}}

The problem for me is knowing quite a bit about Sleep Apnea, to the point where I have told my roommate, my partner, and a few friends that they should get tested, so I know I don’t have it. It is still something I have to rule out before doctors will likely explore further.

There sadly isn’t a lot of information on the cause of IH because it is so new. They just only started seeing signs of it in 2012. From the information that I have found, hypersomnia in general could be caused by anything from alcohol to a head injury. Anyone can experience hypersomnia, but if you experience excessive sleepiness for 3+ months then it may be considered Idiopathic Hypersomnia, especially if there are no other causes found.

Medicine is studying the chemicals in the brain that may help explain why people like me have extreme sleepiness. A couple of sources that I found states that they think it might be related to a chemical they named GABA (gamma-aminobutyric acid). This chemical is the equivalent to taking a sleep aid, except your brain doesn’t know how or when to stop making it.

Treatments for it are not very effective because it is so new and they seemed to only just come up with the diagnostic criteria for it. The standard thing that physicians do is try to prescribe stimulants like Adderall – as they did with me – which have been shown to not really work. In my opinion, it’s like drinking coffee when you are drunk. It might wake you up for a short time, but in the end, you are still drunk and just want to go to bed.

They have 3 or so non-FDA approved medications for IH. Because IH is so new and they are still figuring it out, they can’t officially list it as a way to treat it, so they go “off-brand”. I bet my insurance will have fun with that if/when the time comes. Typically if stimulants don’t work, physicians will try to prescribe medication that is used for narcolepsy. Because IH and narcolepsy are in the same general family of medicine, sometimes it helps according to the articles.

My experience with this so far has been rough. I will be in the middle of eating dinner at home with my spouse and my eyes will get too heavy to open. We are struggling to connect because of my fatigue. I store all of my energy for the end of the day when he is done with work just so I can talk to him, and even then I have difficulty forming basic words due to my fatigue and have to go lay down by 8 pm because I simply do not have the energy. Two days ago, I fell asleep at 11 pm, woke up at 9 am, moved to the couch, and fell immediately sleep until 1 pm. Even with doing this same process nearly every day, I am still falling asleep while typing this, or while watching TV, and worse yet, I even close my eyes when walking the dog because I don’t have the energy to keep them open.

I hope to speak with my psychiatrist and see if he can’t prescribe me some meds specifically for IH, or at least encourage him to look into the possibility of me having it. Meanwhile, I still have to wait a week or two to meet with the sleep clinic specialist and hopefully, they can try to rule out sleep apnea so my other doctors can dismiss the idea. Or, they can verify if I have IH or if it is something else. I may be updating this post with other articles or information I find related to IH as time goes on.

In the next post, I will likely be discussing the possibility of my digestive discomfort being a possible reason for my fatigue. I will include some articles that I found that might help those that feel nauseous when they eat nearly anything (like me!). Don’t worry, I am going to leave out all of the gross stuff and just speak about my findings and what symptoms I experience.

Think you have Idiopathic Hypersomnia? Check this out: _{^{https://www.hypersomniafoundation.org/wp-content/uploads/IH-Characteristics-and-Diagnostic-Criteria.pdf}}
Want to read a medical journal article about IH? Check this out: _{^{https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2266276/#__sec7title}}

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