Diagnosis = a rare, incurable disease (Zzzzzzzz)

"Nearly everybody has experienced those days where you didn't get hardly any sleep the night before (or maybe even a few nights in a row). You're groggy all day, have trouble focusing, your mind drifts as you try to perform mundane tasks, and you may even feel a little more irritable than normal. However, with just one night of good rest, you're back to your normal, focused, alert self in no time.

Now try and imagine what it must be like to live in a state of perpetual drowsiness, chronically plagued with sleepiness. To make matters worse, imagine that you actually sleep just as much, if not more, than the necessary amount, and take frequent naps on top of that. Imagine living a life where you sleep as much as you can, but never get that rested, recharged feeling that sleep is supposed to give you. This is what it's like for those suffering from the rare disorder known as idiopathic hypersomnia."

Two cups of coffee are always better than one.

Today, I had my sleep study consultation.

Wait, let me rewind. About a thousand posts ago (sometime last year) - I mentioned that my doctor recommended I get a sleep study done due to my excessive sleepiness.

This has been an ongoing problem for as long as I can remember. In high school, my mom had a hell of a time waking me up in the mornings. At that point, she and I assumed that it was just... laziness. I was a teenager, and I liked to sleep in. And as funny as it sounds, I'm serious when I say: she would need to use a blow horn (yes, you read that correctly) or pour water on me to just wake me up.

As I got older, nothing improved. Sometimes I'd sleep 18+ hours a day and wake up feeling exhausted. I always ran late - or often times - just skipped classes to sleep.

As time went by, we thought it was depression or anxiety - but even after being medicated for both, I'd still be just as tired.

At some point last year, I sat down and spoke with my doctor. She asked a few questions (what time do you go to sleep, how much caffeine do you drink, how many hours do you sleep on average, do you take naps, etc.) She referred me to Wisconsin Sleep Institute to get a sleep study and suggested that I could just possibly be one of those few people who needed around ten hours of sleep each night. Time went on: I forgot to schedule a sleep study.

Every morning, Matt would try to wake me up multiple times (over an hour and a half time span) -  and would eventually and understandably get frustrated. After yelling, "we have to leave for work in five minutes!"- I'd finally roll out of bed, brush my teeth, brush my hair, get in the car, and go.

On an average night, I will fall asleep on the couch around 9pm. By the time Matt is ready to go to sleep (11pm), he will gently shake my shoulder and say, "Jaclyn, it's time to go to bed," and I will carry on a full fledged conversation with him promising that I'm on my way.

But what really happens (from my point of view) is: I lay down while watching TV at night then wake up the following morning to Matt screaming that we have to leave for work.

9pm-7:15am ------- At least ten hours of sleep each night. I'd wake up feeling exhausted, groggy, confused, frustrated, and terrible for leaving all the morning responsibilities on Matt. On weekends, I'll doze off during the day, sleep for five hours - and wake up feeling just as exhausted.

This ongoing issue gradually caused issues in our marriage. Matt would become frustrated from always running late (which, anyone would), and I felt misunderstood, unproductive, useless, and just defeated.

In the beginning of the summer, I had a routine check up with my doctor. In tears, I explained to her that my sleep was seriously interfering with my personal and work life. I had zero control of waking up in the mornings and I was always, always, always tired. I didn't want my husband, parents, friends, or work to think I was just lazy or making excuses, and I had no idea what it felt like to be energized after a night's sleep.

She referred me (again) to the sleep institute and the first opening they had was three months out (today). In the meantime, Dr Quinn prescribed me Ritalin. A medicine which is usually used to treat people with ADHD. It is a stimulant and helps people stay awake and alert. Because of this, it is also prescribed to people with narcolepsy.

For the first month or so that we experimented with it, I started from 10mg a day and ended at 40mg a day. In a nutshell, it didn't help. I could take one dose at 4pm and still be asleep by 6pm.

As time progressed, my symptoms got progressively worse. I'd wake up feeling dizzy, with blurry vision. disorientations, hallucinations, and even suffered from sleep paralysis: "a phenomenon in which a person, either during falling asleep or awakening , temporarily experiences an inability to move, speak, or react. It is a transitional state between wakefulness and sleep, characterized by muscle atonia (muscle weakness). It is often accompanied by terrifying hallucinations (such as an intruder in the room) to which one is unable to react due to paralysis, and physical experiences (such as strong current running through the upper body)."

As my first month of ritalin came to end, I spoke with Dr. Quinn and told her it wasn't helping me. At one point I said, "I don't think I'll ever feel normal." She tried prescribing me Provigil (which is a narcoleptic medicine), but - of course - my insurance company wouldn't cover it because I hadn't officially been diagnosed with a sleeping disorder. 

After receiving the "no" from my health insurance, Dr. Quinn switched me from Ritalin to Adderall - a similar drug to ritalin, but with a higher dose and extended release (which will last 24 hours). The medicine has done a marvelous job keeping me awake, so much that a handful of nights-- I haven't slept at all. At one point, I went on a 40 hour stretch of no sleep.

YOU SHOULD SEE THE DARK CIRCLES UNDER MY EYES!

Today was my sleep consultation:

I shared all of the above with the sleep doctor and went through a million other details. He told me that he DIDN'T think I had narcolepsy, but it's "cousin": Idiopathic Hypersomnia

To help you all understand better, I've used the main points from wonderful Wikipedia

• Idiopathic hypersomnia is a disease, thought to be a neurological disorder, which is characterized primarily by severe excessive daytime sleepiness^. It has historically been rarely diagnosed and is often very difficult to diagnose at an early stage; it is usually a lifelong chronic disease, which is often debilitating.  
• Currently, there is no cure, there are no FDA-approved treatments, and research funding for its study is scarce.
• Those who suffer have recurring episodes of excessive daytime sleepiness. These occur in spite of "adequate, or more typically, extraordinary sleep amounts. Sleep is usually quite deep, with significant difficulty arousing from sleep, even with use of several alarm clocks. In fact, patients with IH often must develop elaborate rituals to wake, as alarm clocks and even physical attempts by friends/family to wake them may fail. 
• Despite getting more hours of sleep than typically required by the human body, patients awake unrefreshed and may also suffer sleep inertia, known more descriptively in its severe form as sleep drunkenness (significant disorientation upon awakening). 
• Daytime naps are generally very long (up to several hours) and are also unrefreshing, as opposed to the short refreshing naps associated with narcolepsy. . 
• Although there are several FDA-approved medications for use in narcolepsy, there are no FDA-approved medicines for idiopathic hypersomnia. Therefore, the wake-promoting medications used in narcolepsy are also commonly used off-label to help manage idiopathic hypersomnia. These treatments have not been studied to nearly the same extent, and some patients do not achieve adequate control of symptoms with these medications.
• Many patients are chronically tardy to work, school or social engagements and, over time, may lose the ability to function in family, social, occupational or other settings altogether.
• Idiopathic hypersomnia is a lifelong disorder whose symptoms typically begin in adolescence or young adulthood. It is initially progressive, but may stabilize, and its main consequences are professional and social.
• Idiopathic hypersomnia profoundly affects work, education, and quality of life. Patients are often too sleepy to work or attend school regularly, and they are predisposed "to develop serious performance decrements in multiple areas of function as well as to potentially life-threatening domestic, work-related and driving accidents. Furthermore, these risks are higher for idiopathic hypersomnia patients than for those with sleep apnea or severe insomnia. In fact, "the most severe cases of daytime somnolence are found in patients affected by narcolepsy or idiopathic hypersomnia. And idiopathic hypersomnia is often as, if not more, disabling than narcolepsy.
• Idiopathic hypersomnia has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. 
• Although the true prevalence of idiopathic hypersomnia is unknown, it is estimated at 1 in 25,000 people 
• Because idiopathic hypersomnia has been considered a rare disease, it has not received enough attention from authorities and researchers. Patients are rare, researchers and scientists involved in the field are few and research findings are therefore scarce.
• Because of this low awareness, patients with idiopathic hypersomnia "often need significant support because they are at risk of being misunderstood as being incompetent or slothful. Therefore, education of relatives, friends, and colleagues helps the patient to function much better with this incurable disease.
• Furthermore, because idiopathic hypersomnia may lead to marriage breakdown, extensive counseling for the patient's partners, educating them about the symptomatology and treatment options, must be part of a comprehensive management plan... Education of relatives, friends, and colleagues helps the patient to function much better with this incurable disease."
• Unlike narcepsy, which has a known cause, the cause of idiopathic hypersomnia has been largely unknown, hence its name.   

LUCKY ME! On October 21st, I get to have a sleep over at Wisconsin Sleep Institute so they can monitor my sleeping while I'm connected to a million different sensor thingys. Then, even better! I get to stay the WHOLE day after (on October 22) so they can monitor how many times I doze off in a quiet, dark room.

Doesn't that sound like so much fun????

Following all that FUN-NESS, they will be able prescribe me on meds for narcolepsy which HOPEFULLY my health insurance will approve. These include stronger stimulants and meds that will help with wakefulness in the mornings, so poor Matt won't have to set off the fire alarm in order to get me out of bed (and really, I'd probably sleep through the fire alarm #NOJOKE).

For now, we are still "mixing the perfect cocktail" with Adderall - figuring out the perfect dose and the right time to take it, so I'm awake and alert throughout the day - but not throughout the entire night as well.

Oh, and crossing our fingers for vitamins to help wakefulness in the morning - But I was warned: the chances are slim.

I don't know if I'm dreading October 21 because of the boring two-day long sleep study - or excited because we'll finally have an official diagnosis and plan for treatment.

I slept all day after my appointment. 

Also, aren't the dogs are SO SWEET for allowing me an entire cushion and a half to stretch out??