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Living with Narcolepsy

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#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


#2

How long have I had/experienced narcolepsy symptoms? The reality is since birth. My mom said I always slept more that other babies and would “just fall asleep.” (Note: my mom was an OB nurse for a time, thus had relevant experience to make such a judgement.) She told stories about my habit of falling asleep in my food, at which family and others would chuckle. In retrospect, I do not recall any time in my life during which I actually felt awake without some “help.” Help was in the form of self-medicating with stimulants. Nicotine was wonderful as a teenager as well as some other types of stimulant meds which were harder to obtain. I did learn these were not sustainable ways to stay awake for both legal and health reasons. I just switched to massive daily amounts of caffeine, which never really worked well. I just figured I was lazy and undisciplined because I was unable to stay awake like others and focus/complete tasks. This is actually quite funny because I ranked fourth in my university class, did very well in graduate school, and have worked for some very prestigious companies. By all external accounts, I am successful. I just could never shake the profound sleepiness especially at inappropriate times - studying, oral exams, operating manufacturing equipment, driving. Often I would have to excuse myself and go nap.

Eventually, I was tested and diagnosed ADD without the hyperactivity. Taking Ritalin for ADD was like turning a light on in my head! For the first time in my life, legally, I felt awake. Once we got the dosing right I was on the same dose for about 10 years. The trouble however was the wakefulness never lasted more than a few hours after taking the medication. It was just such a wonderful reprieve not to fight to stay awake for a few hours each day.

After those years I was growing frustrated with fighting to stay awake and we adjusted the dosage and types of medications to fix it. During this time I was experiencing very active dreams. My wife would ask why I drove my elbow into her side during the night - of course I was unaware of this behavior until I about broke my hand trying to put my fist through a wall. After that incident, I slept in a separate bed to avoid hurting my wife and talked with my doctor. He ordered a sleep study, which revealed sleep apnea. Another profound difference: the CPAP machine is amazing! Great sleep and no more hurting my wife or house demolitions in my sleep.

But still profound sleepiness. I think I just eventually gave up fighting the sleepiness and had a much broader discussion with my sleep doctor. My sleep doctor is an expert in a large metro area and after talking for 10 minutes he said I was experiencing narcolepsy without cataplexy. He could have ordered a sleep study, but he said that was expensive and would just tell him what he already knew. He said he sees lots of adults with narcolepsy who were misdiagnosed ADD/ADHD. He worked with my primary care doctor to increase my Vyvanse dosage instead of giving me any “new” diagnosis on my medical record.

The increased dosage actually gave me about 8-9 hours of wakefulness without having to fight sleepiness. After a couple months we increased the dosage to try to get me at least 12 hours of wakefulness.

This was a long journey to wake up. My challenge now, as I no longer have to fight to stay awake, is how do I shift my discipline to actually living instead of being in a constant state of readiness to fight to stay awake? I have said that to myself, even aloud, and as I write it out I chuckle - I never considered the mental energy and discipline it took to remain prepared for the sleepiness fight!

How long does it take to adjust to being awake?

How long does it take to let go of being in a state of readiness to fight sleepiness?

What are some approaches to learning how to plan and complete tasks and projects without ruminating on the possibility of becoming sleepy?

What are some approaches, for lack of a better phrase, to grow up and really engage with life and people?


#3

Hi my name is Ronald, and this is my story. I’m in my 50’s and believe that I’ve had narcolepsy for most of my life. I can’t even begin to tell of all the incidents in my life. So I’ll start at the end which is now. May 23, 2018 is a day has for ever changed my life. That day I told my doctor what was going on with me. He was extremely concerned for my safety as well as the safety of my family and people around me. Two months prior to May 23, I was having extreme sleep attacks at work. I’m a warehouse manager and have been working extreme hours for over 10 years. I would work from 3:30am until 5:30pm weekly. I consumed massive amounts of caffeine and sugar. Staying awake has always been a challenge in my life. I would fall asleep at anytime doing anything. It was a joke among my family and coworkers cause I’d fall asleep in mid conversation. But my sleep attacks severely increased to the point where I was having 15-20 attacks per day. Sometimes it would be 8-12 attacks per hour. I would be completely out but still functioning and that resulted in many accidents on the forklift. Nothing serious like me or other people getting hurt, but I was doing damage to the building and product around me. I covered up my accidents, yet I knew something was not right with me. While driving home or anywhere for that matter I started having sleep attacks. Most were at red lights or stop signs. On May 22, 2018 the day before my doctors visit, I was coming home from work and had to stop at the train tracks cause a train was coming. There are no crossbars at the tracks just signal lights. I was the first vehicle closest to the tracks. Nothing but space between me and the tracks. I could see the train coming and I don’t know why but I put my truck in park. I wake up to people honking their horns. The train was long gone. I don’t remember any of it! I was out! If I hadn’t put my truck in park, I believe I wouldn’t be alive today. When my doctor evaluated my symptoms and heard my story he banned me from driving and work. I was referred to a sleep doctor. I haven’t worked since and I’ve been diagnosed with narcolepsy and cataplexy. There’s more to my story but I’ll stop here. I want to communicate with people who have what I have. To share what I’m going through and know that others are fighting the same fight. Thanks for reading my story and hope to here from fellow members. Ronald