Search This Blog

Tuesday, February 15, 2011

I was diagnosed with narcolepsy and it's horrible.I've been on concerta but it doesn't work. I'm still always sleepy and I fall asleep all the time. I just wanted to ask.Will I ever have a normal life again where I can stay awake and alert the whole day?

I'm sorry, I don't know when you asked this question (my alert emails seem to get lost in the shuffle sometimes), so I don't know if anything has changed since you posted it.

I will try to do this as gently and honestly as possible...

No. It is not likely you will ever have a "normal" life again. Even if you find a medication regimen that works amazingly well and keeps you awake all day, it would be extremely unusual to not have lasting effects from past sleep deprivation (after even a short period of time, the body stops bothering to try to catch up on a sleep deficit. So years of sub-par sleep are practically impossible to reverse), and not only do the medications we require have pretty crazy side effects (weight loss, seizures, dental problems, irritability, insomnia), but they are of a type that typically lead to tolerance in every patient at some point...whether within weeks or years.

On the other hand, the positives are this: with proper management, you CAN live a happy, fulfilling life, and you can certainly do everything a "normal" person can just have fewer hours in the day to do it and often have to make some changes to how you do it. For instance, 9-5 jobs tend to be very difficult, but a split shift, second shift, or something you can work from home is usually feasible. Lunch hours tend to be nap hours. Coffee is literally a necessity, not an option, even though others pretend they NEED it. And we have to learn to accept that we can't always go out on Friday night if we want to enjoy our weekend...but with understanding of our symptoms and what makes them worse, we can plan for them.

Also, there is a LOT more research being done on Narcolepsy and treatments. For many people, Xyrem has been a miracle drug. And there are so many combinations of other stimulants out there, you could mix it up for years before finding the right one. I know that doesn't sound reassuring, but allow me to explain a little:

The first time I had medication, it was AMAZING. It was like "OMG, so THIS is what awake feels like?" I realized I never had experienced it. Within a few days, I settled into something slightly less amazing, and within weeks felt worse than I had before. Then I realized that not only was I more aware of my body and my levels of fatigue because of the research and learning I was doing, but there was now a bigger gap between what a "good" day felt like and what a "bad" day felt like. So I wasn't actually feel worse, I just SEEMED worse because of that new "high" I had to compare it to.

I tried several medications, and many people do. There are different brands, different formulas, different strengths. You may need to mix a short acting pill with a long-acting pill for maximum benefit. You may need a sleeping pill on top of a stimulant during the day. You may need to experiment with when to take each dose. Often times, we require a much higher dosage of stimulants than is recommended for other conditions, and doctors will be very cautious about getting to that point. One option (talk to your doctor) is an occasional drug holiday. Don't take your pills for a weekend (with doc's permission) and see if you feel a little better when you finally take them on Monday.

Be sure that you trust your doctor and feel that he or she listens to you. It can be a real wear on you emotionally and physically to feel like he or she is not "getting it" or trying to help.

Also, don't try to compare yourself to "normal" people. You were a unique individual before you found out you had N, and you are a unique individual now. You have to strive toward your own goals and your own happiness, not someone else's.

If you ever need to vent, you know where to find me!
I hope you begin to feel much better soon.

Ask me anything

I am also suffering from narcolepsy. My main prob is not to be able to wake up and to be unconcious about for one or two hours after waking up. So I am being late everywhere and oftenly I fall a sleep after waking up. Do you have any advice

Well, as you can probably tell, you're not the only who is late! (I really have to find out what is happening with my formspring e-mails!)

It is quite common for first thing to be one of the most difficult times for us narcoleptics. I personally find it VERY difficult to get myself into anything resembling "awake" and stay there.

I can offer some tips, but unfortunately, they usually tend to be hit or miss depending on the person and their individual symptoms.

First off, and I ALWAYS say this...stick to a routine. To bed at the same time every night (even if you don't feel ready), and up at the same time every day, even weekends. Your body will get used to the routine and eventually it definitely begins to wake at the right time, even if it is still difficult.

Secondly, practice other good sleep eating within a few hours of bed, no computer within two hours before bed (messes with melatonin production), no eating, tv watching, or other "non-sleep" activities in bed. That's probably the hardest.

Third, try setting a few alarms. They have loud ones, vibrating ones, singing ones, talking ones, bright ones...hopefully one out there will be enough to wake you. Set one every half hour (or set a snooze time if it allows) starting BEFORE you have to be up.

You can also try leaving your shades open or ask someone to come open them in the morning. The sun actually DOES help you wake up, and it will affect you even if you are awake yet to see it.

Sometimes, for me, it is a matter of forcing myself out of bed and away from it, even if I don't feel ready. It's much harder (though not impossible) to fall asleep when walking around the house or doing simple chores (no one will be hurt if the dishes end up put away in the freezer, but the action may help you get going).

If you take medication, set an alarm for about an hour before you get up. Take your medication, then go back to sleep for a bit. It will give the medication time to get into your system.

Sometimes, taking a shorter acting med in the morning, like Ritalin, can give you enough of a boost to get started, and then you can take an extended release formula when you get up to help you through the day.

Also, try scheduling appointments during what is usually your most awake portion of the day. For me, this is usually between about 11 and 3. I still have a tendency to lose time and be a little late, but not nearly as late as if I schedule outside of those times.

Try explaining this condition to doctors and other places you may need to be. Let them know you are not trying to be disrespectful, that you understand their time is valuable and you do not expect them to be happy about it, but you try your best. Call as soon as you know you will be late. At a doctor's office, this may mean they can take the next patient before you get there, so you can still be seen. If you have the time, ask them if they may be able to squeeze you in if you are willing to wait, and don't be difficult about rescheduling if necessary. Even if the reason you are late is not something you can control, being late is still YOU, and you can't act like it was someone else and you haven't affected other people's schedules.

If you have school, go for later, shorter classes.

As for someone to call you to make sure you are up.


Patience and acceptance: you can get things manageable with patience and research. Talk to other PWN like me who know what you are going through. It takes a long time, but accept your limitations and work within may find it actually expands your ability to do other things sometimes. Try to learn to say no and not feel guilty. We, as human beings, can't do and participate in everythiing, and we definitely can't with a disease like narcolepsy. True friends will make an effort to understand.

I wish you luck, and if you think of other tips on your own, please be sure to let me know so I can share them with others!

Ask me anything

40 Tops Blogs for Insomniacs

Just a short note to let you know Ms. Paula Dierkins has listed us in her Top 40 Blogs for Insomniacs! Check it out for yourself by clicking on the title above.