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Living with Narcolepsy: A Patient’s Story

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          GH_narcoleptic_052814_2194.JPG

During the fall of 2004, Patrick O’Neill began having episodes where he would get weak and dizzy, and his vision would blur.

At the time, he was a college student, getting straight A’s in classes like honors organic chemistry.

At first, doctors thought his problems were stress related, but the incidents became more frequent and his episodes became cataplexy, where his muscles would weaken and he would collapse.

It wasn’t until the sixth or seventh doctor he saw that he got his diagnosis: narcolepsy.

He has been living with narcolepsy ever since. Now 29 and an AP Chemistry and Integrated Chemistry-Physics teacher at Munster High School, narcolepsy dominates O’Neill’s daily life.

He can’t drive, and even walking around town can be dangerous, which makes him highly dependent on others.

“Without medication, I would have as many as 300 cataplexy attacks in a day, and couldn’t even walk around on my own,” he says. “With medication, I tend to have them only at night, and usually only when there’s some sort of added stress, like I stayed up late working the night before.”

O’Neill is one of less than a fraction of one percent of the general public who suffer from the sleep disorder called narcolepsy, doctors say.

Narcolepsy is caused when the patients’ sleep cycle is fragmented, and they get REM sleep when they’re awake, says Dr. Baqhar Mohideen, medical director for the Porter Regional Hospital Center for Sleep Medicine and a diplomat of the American Board of Sleep Medicine.

Living with narcolepsy is not easy. In addition to the attacks of cataplexy, narcoleptics also have sudden attacks of excessive daytime sleepiness. They also might have sleep paralysis or have attacks of hallucinations upon wakening, says Dr. Andrea DeLeo, the medical director of the Stroke Program at St. Catherine’s Hospital, the medical director of rehab at St. Catherine’s Hospital and the co-director of the Deep Brain Stimulation Program at Munster Community Hospital.

The fragmented REM sleep seems to be caused by low levels of hypocretin, also called orexin, in the hypothalamus, although the cause for the low levels are still unclear.

Narcoleptics, including O’Neill, can experience cataplexy, where the REM sleep occurs while they’re awake and they fall to the ground.

The attacks are generally brought on by periods of extreme emotion, including extreme happiness or anger.

“A lot of people mistake cataplexy for passing out, but it’s not. Consciousness is maintained, but there is a sudden loss of muscle tone that can lead to falling down, or they might droop a head or drop a jaw, or their arms might suddenly drop,” says Dr. Kevin Fagen, diplomate of the American Academy of Sleep Medicine and director of the sleep lab at Ingall Health System. “It can happen in response to startling stimuli, anything from hearing about a death to a funny joke can bring on the attack.”

For O’Neill, cataplexy is terrifying, and occurs quite frequently.

“Living with narcolepsy is a terrible feeling. I feel dizzy, detached from my body and a bit queasy. My vision blurs and sound is slightly distorted. My muscles weaken and then I am filled with the dread of realizing I am about to collapse with no strength or ability to protect myself,” he says. “The total loss of control over your body is something you cannot adjust to. Or at the very least, I’ve failed to adjust to it even after thousands of episodes over about 10 years.”

Although O’Neill says he rarely loses his temper, for a period of his life he “lost laughter” because he feared the cataplexy attacks.

“Imagine this (cataplexy attack) is the feeling you have instead of laughter, every time something strikes you as funny. It doesn’t take long to lose all sense of joy and humor,” he says. “With medication, I’ve recovered the ability to feel emotions to some extent, though I still struggle to feel safe and free when it comes to laughing. One of the hardest aspects of narcolepsy is losing that sense of joy we have when we laugh. I’ve tried hard to find it again. On rare occasions I have, and I treasure every one.”

Doctors say the best way to be diagnosed with narcolepsy is to have spinal fluid tested for the hypocretin, or to go through a sleep study and a nap study in a sleep lab.

Dr. DeLeo says disease equally affects men and women, and the onset of the disease is gradual. Typically, patients are diagnosed between the ages of 20 and 40.

Treatments is generally done through prescribing stimulants. There is also some lifestyle modification involved, doctors say.

“Once you know you have it, you have to not put yourself in certain situations. You don’t want to be an air traffic controller, for example,” Dr. Fagen says. “You also want to schedule naps during the day at strategic intervals, and practice proper sleep hygiene.”

O’Neill says the side effects of the medication are strong, but is definitely preferable to the cataplexy attacks.

“Narcolepsy makes a lot of aspects of  my life hard, but it doesn’t make things impossible,” he says. “I push myself to be the best person I can be and try not to make any excuses for myself.”

Originally posted in nwi.com Get Healthy

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Comments (9)

  1. I appreciate reading your story. It took me about 30 minutes to read because I couldn’t stay awake. I’m getting ready for a sleep study next week, however my neurologist is pretty sure already that I have narcolepsy. On top of that its become apparent I too have fibromyealgia. I’m a single mom, three kids, and my mother is supporting me right now. My neurologist doesn’t want me working til she diagnoses me and gets me on medication. I can relate to feeling dependent on others. None of this is fun and I Google this stuff looking for stories of others that have this. If y’all can survive so can I, thank you.

    • Hi Kara,
      Looking at the date my guess is your a few years into this by now.
      It’s so difficult when your raising a family and living with the effects of narcolepsy. I don’t mind sharing that I was a young parent of two children like yourself and at times it was scared especially when they were young and falling asleep all the time. It’s good you had your mum for support.
      My girls were quite comical I remember my eldest daughter playing like some do as “mummy in the kitchen making tea” she must of been 5 or 6 at the time. I popped my head around the door to witness her pretending to collapse to the floor as I do with the cataplexy. It was an eye opener to see especially when my younger daughter 3 at the time pretending then to bring her round and sitting with her all concerned. Comical to see.
      You know they are now in their 20,s and turned out to be caring independant women. Don’t get me wrong there’s been so many embarrassing moments were they’ve had to wake me or I’ve had the cataplexy in a public place and both have just put an arm under either arm and sat me down or one has got up and discreetly held my head to prevent it from jerking.
      Hope you got the right support and are on your way to managing your condition whatever it may be.
      You are a survivor and most definitely can move forward positively.
      All the best.

  2. After 20 years of suffering, He was finally told she had narcolepsy – which … falling asleep all the time I was determined to not let it dominate my life. ……ya nothing is impossible.i read your full story.

    • I agree whole heartedly.
      Positive mental attitude.
      We will always get there adopting the ” nothing is impossible” attitude.
      Thanks for your positivity.

  3. Avoiding laughter must be so difficult but glad you cherish the little that you have experienced. Like so many who have some sort of disability you have to mold yourself into the environment knowing what you can do and what you can’t do.

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  5. I read your story and can empathise having lived with narcolepsy and cataplexy for 28 yrs. I received a diagnosis at age 16.
    I can relate to the cataplexy especially at the height of emotion which initially it was laughter for myself. Wow how life changes and such a difficult process especially when your daft as a brush like me!
    It’s good to hear you have continued on your career path; being a Family Support Manager within Social Care I know how hard it is simply getting up every day,lasting the day and performing when you have conditions like what we have.
    I don’t drive either,my fear would be putting myself and others at risk despite being medicated.
    It’s awful having to rely on others; and my experience is that took automatically think you drive and when you say you don’t you receive the usual ” we’ll have you never thought of driving” or ” you want to get yourself on the road”.
    Believe me I don’t know about you I would love nothing more.
    Do you or others find that stress can impact on your condition? because I do and it doestnt help in the line of work I am in.
    How are your employer’s are they supportive?
    I do believe though that in my case there is an element of that fighting spirit that comes out and spurs me on were I think not myself “no I won’t be beaten by narcolepsy,cataplexy,sleep paralysis or by the hallucinations experienced”.
    It’s hard though I don’t know about you? but some days I do just want to hibernate and on an odd occasion I do.
    But ultimately it’s about us managing our condition not it managing us in many ways.
    I don’t know anyone with the condition which is hard because unless you have it you can never understand the impact day in day out.
    To you and all the other unique individuals that have this condition I have the deepest respect for you in all that you do because it can or is a battle, it’s far from easy even when medicated and takes an amount of willpower and determination so credit were credit is deserved.
    We are remarkable each and every one of us .
    We all have achieved against the odds and continue to whether this be thate that we have accepted that we have a condition and are motivated to seeking the right help for it or that we have kept our chin up, are raising a family, studying, working and trying our best to hold down a job and that’s not counting having a social life, keeping friendships, having relationships and dealing with what life throws at us.
    Together we can continue to look ahead and achieve in all that we set out to do.
    Take care everyone and thank you for sharing your story Patrick.

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