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Monday, August 15, 2011

Do men with narcolepsy have major intimacy issues?

That is an excellent question...and a difficult one to answer. Not knowing what perspective you are coming from (the man, a girlfriend) or what you mean specifically by "intimacy issues," I will answer as best as I can.

To be fair, men with narcolepsy do not have any more problems with intimacy than women with narcolepsy do. Narcolepsy itself does not affect the ability to connect with another person mentally or physically.

On the other hand, certain aspects of living with narcolepsy can absolutely affect the way we handle relationships and deal with a partner.

For one, having narcolepsy means not getting the sleep you need. Anyone who has ever been overtired and in need if sleep knows it makes you cranky, irritable, and pretty much like you just want to be alone with a blankie and your pillow. For people who don't have a sleep disorder, that moodiness generally goes away once you get the sleep you need. With narcolepsy, that never happens. It is often hard for us to be relaxed and truly enjoy company when we are always so tired.

Secondly, we know we are acting nuts! We feel guilty when we can't control our snippy outbursts, and we feel guilty we can't be the peppy, awake, happy, spontaneous people our friends deserve to hang out with.

For men, this can be especially difficult ultimate, because we still live in a society that raises boys to believe they are ultimately supposed to be the caretakers in the relationship. Many get very down when they feel like they can't provide for their significant other, whether financially or otherwise.

Also, being chronically ill means many of us have been burned badly by people we trusted to support and love us unconditionally. It is extremely hard to trust another person and allow yourself to get close to someone when you have been called lazy and useless by family members and friends, or had doctors brush you off when they thought you were exaggerating.

So there is a lot of plain emotional baggage that comes with narcolepsy, aside from any separate personal issues someone might bring to a relationship.

As for physical relations, men especially may be hesitant for a couple of reasons. One, cataplexy (loss of muscle control) is generally triggered by strong emotion, and what is stronger than love? Many men have their first experience with cataplexy during an orgasm. It's an awful lot of pressure to want to please your partner, enjoy yourself, and hope you don't/ try not to collapse on top of her!

Finally,although I have not read anything scientific or anecdotal about this, there is a slight possibility the condition or medications can cause, asked from lack of libido, Ed. I mention it as a possibility merely because the part of the brain that is destroyed in narcolepsy also has a role in blood pressure, not to mention the stimulants prescribed for narcolepsy can also mess with blood pressure, so that could be an issue.

The best thing to do in a relationship is always to talk to your partner, be direct and honest, and don't be afraid to seek professional help for any of the problems I've mentioned. Counseling is a good way to help open up and learn communication, and knowing you cafree enough to try is always a good signal to someone who is hesitant.

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Sunday, March 27, 2011

I was diagnosed with narcolepsy when I was 17, about 8-9 years ago.My question's about lucid dreaming. While I experience sleep paralysis (as well as cataplexy), I can't seem to get an answer on whether lucid dreaming and sleep paralysis are related.

Technically, they are related by their mere nature, although I believe the answer to what you are really asking is - they can be.

Sleep paralysis occurs immediately before sleep or immediately upon "waking." It is the same thing as cataplexy, but at a different time under slightly different circumstances. Both are incidents of the body using the mechanism that paralyzes us so we don't act out our dreams at the wrong time. It sounds like you know this.

Most people without narcolepsy associate "lucid dreaming" with dreams in which the setting and actions are just like day to day life, they know they are dreaming, and they can often dictate the direction of the dream. "Inception" is entirely about lucid dreaming.

By extension, the hallucinations we people with narcolepsy often experience are also lucid dreaming. It is also known as "waking dreams" or "daymares," and most often occurs in conjunction with sleep paralysis.

We know we are "awake" and aware of our environment, when we see or hear things, we know they aren't real, but we can still interact with them. Thus, by definition, a lucid dream.

Now, especially when it comes to people with narcolepsy, one does not have to be experiencing a lucid dream to have sleep paralysis, nor does one have to have sleep paralysis to experience a lucid dream. Many of us have stories of seeing people and things that aren't there during the "normal" course of our day.

I suppose some people might argue the difference between hallucinations and dreaming, but in our case, the hallucinations are the intrusion of REM, dream, sleep during waking hours, thus making them the same.

I hope that made sense and answered your question. If not, feel free to ask again, and happy napping!

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Tuesday, March 22, 2011

hi im paul from cannock england im 45 and have been diagnosed with the curse that is narcalepsy . at the moment im on modafinal and dex amphetamine. the modafinal dont seem to do anything for me but the dex do . trouble is im having to eat about 70 a day

Hi, Paul! I have heard a lot of people complain that the modafinil (Provigil, for anyone reading this who doesn't know) either doesn't work at all or stops working after a very brief period of time. For me, it was great...for about two days. Then it did almost nothing without long "drug holidays" in between. It also gave me severe headaches, so eventually I stopped that.

I personally have never tried dex. All of the stimulants I have tried give me migraines. Once side effects from the migraine medication I took became too much, I stopped taking both and now try to manage my narcolepsy medicine free. It is difficult, but I am fortunate enough to be on the milder side of the spectrum and also in a position to be able to sleep when I need to and work when I can. When I tried to fit into a normal 9-5 job, the results were pretty disastrous.

I'm not sure what your question might be, but if you are looking for treatment suggestions, I can tell you there are still more options. Nuvigil (armodafinil) is supposed to be a longer-acting form of Provigil, and some people who have had no luck with the latter due report some help from Nuvigil. Mixed with a shorter-acting drug like the dex or Ritalin, that may be one option. Unfortunately, as with those who use these drugs recreationally, it is common for a point to come when higher and higher doses are needed. It is not unusual for people with narcolepsy to go far beyond "normal" dosing over a fairly short period. One thing that may help is talking to your doctor about "drug holidays," days or weeks you can stop taking your medicine (make sure you are able to sleep all day and don't have to be anywhere) so that when you take it again, it seems to work.

There is also Xyrem, which I understand is difficult to be approved for in England, but it can be done. Although it is not a stimulant, it is the only thing that has been proven so far to improve nighttime sleep, which leads to much better days for some people. Xyrem, however, has a lot of side effects and is certainly not for everyone.

Make sure to talk to your doctor about how you feel your treatment is going, and I suggest joining online or in person support groups where you can talk to more people who understand exactly what you are going through. I am on Facebook ( and we have an independent site, I also highly recommend the Narcolepsy group at That is where I first talked to other people with narcolepsy and consider them all family.

If there is anything else you'd like to know, please write again, and I wish you luck in your struggle with this awful condition.


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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.

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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!

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