Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
So, where to start.... I have been struggling with narcolepsy since I was about 11 or 12 but because of difficulties with doctors and insurance and all sorts of things have only been able to get my diagnosis recently (I am now 21). Now that I have been diagnosed, my mom and I have been reassessing how this condition is going to affect my future. I am excited to have this community to discuss with because I have had many negative experiences with people either thinking I'm lying about having narcolepsy or just taking it very lightly. Even the people I'm close to I don't think understand how much distress it causes me and how much it affects my life.
I'm a Junior in college, struggling to stay awake in lectures, and barely scraping by with my grades. I would like to go to grad school too, but my grades probably aren't good enough. I wanted to get a clinical job to start gaining experience for my future. The only one I could get though needed me to do overnight shifts. I don't think I could realistically do that. I would fall asleep for sure and it would affect my whole sleep pattern. I'm concerned about how this condition will affect my future and getting a job. Any advice or related experiences?
Another concern I have is that the medications my doctor put me (Concerta and Ritalin) on don't help at all and also make me feel awful. My doctor said that we would try these first and consider other options if they don't work. It seems time to consider other options, but my doctor is so hard to get ahold of. He is booked months ahead for appointments and if we try to call him we get crazy charges. The doctor is also just kind of difficult to speak to when we do get ahold of him.... At this point I think I might just need to find a new doctor? Do other people have experiences like this too?
Lastly, another major concern I have is driving. In my state, your doctor needs to write in their opinion on whether or not they think you can drive. My doctor said he didn't know me enough to be able to have an opinion, so he didn't write in. My driving privileges have now been cancelled. Even apart from whether I'm allowed to drive or not, I'm not sure myself whether or not I should be driving. I generally drive just fine, but there have been a few terrifying moments of dozing off at the wheel. I'm worried about what this might mean for my future. Where I live you kind of have to drive to get around and I don't want to have to rely on other people all the time. Any advice?
As well I had costly genetic testing done years prior, to find that I carry a specific enzyme which rapidly metabolizes the Ritalin. So, the normal 8-12 hours, I was only getting 45 minutes out of.
She assured me she’d help. So I’m on 3 types of Ritalin, 10mg immediate release, 20mg extended release, 250mg of Nuvigil (Provigil has the propensity to stop working), and a new drug called Waxik, Pitolisant is the drug name. It’s a H3, histamine antagonist so it helps your brain with the sleep wake cycle. That’s just my morning pills. Then 5 hours later I take another 20mg of Ritalin mg. Before Waxik I was taking a third dose of Ritalin ER 10mg in the afternoon just so I could stay awake long enough to make dinner. I’m now off that due to the Waxik.
If you’re unhappy with your dr, as the patient you have the right to see someone else. Heck even ask to see the Head of sleep disorders.
I understand completely where you are, I’ve almost crashed my car several time because I was in autopilot, my brain was asleep but I was physically awake. It’s terrifying at best. Kind of like the lights on but no ones home.
The Waxik was the missing piece to my narcolepsy management. I have energy again, I haven’t had chronic sinus infections or keep getting sick because my immune system is over taxed.
Sadly, there’s no one size fits all for a drug cocktail for our illness. But please, if you feel you’re not getting the treatment or being listened to by your dr, then that dr may just not be the one for you.
I work in medicine, pathology to be exact. I fully disclosed my Illness to my employer and they’ve been very supportive. If I need a nap because I had a bad night before sleeping. I clock out, go into an office and nap for 30min, then clock back in.
Our Illness is terribly frustrating. Over the years I was misdiagnosed over and over and I kept saying I think there’s something else going on. Finally, someone listened.
I went for my day and night sleep study and there it was Classic Narcolepsy.
The cataplexy attacks which I thought were anxiety attacks... I finally had an answer.
You are going to be okay and you will get through this to be able to lead a normal life. Take 20 min naps when you can, be aware of how you’re feeling. I have designated “sleep” areas if I’m out running errands and I need a nap. I’ll lock my door in a safe public area with my car running and close my eyes for 15 minutes.
Sadly, we have to always be cognizant of how we feel, at least that’s my opinion, I couldn’t live with myself if I got into an accident and hurt someone or was having a sleep attack reading patient slides and misdiagnosed them.
Empower yourself please with this information. You can have a somewhat normal life and surround yourself with those who will support and understand you. Yes, I’ve heard the comments of “wish I could nap at work”, or “ wow you’re on a lot of amphetamines!” Screw the comments and those who don’t understand. I simply reply with this statement when someone says something disparaging about my illness: “ what’s the longest you’ve stayed awake?” Normally they’d say two days. I say how did you feel? How did you function? Kind of poorly huh? Well imagine that everyday of your life, that’s how I feel”. Then they back down. Or I get the chuckling goober who says “ is it like in the movies where you just fall over and sleep?” “ I say no you idiot, it’s not and there’s nothing funny about this”. It’s difficult and frustrating so no it’s not like the movies.
Sorry this is so long, but I hope you don’t feel alone in this. There’s hope. There’s no cure, but there’s management and some really great doctors who want to help their patients. Waxik(Pitolisant) was they key for me. Xyrem wasn’t. You have the right to feel better, live a normal life and have great support.
I hope this has helped you some.