Assistance Needed

Hello All,

Any assistance to the following situation would be very much appreciated:

My new girlfriend has severe Narcolepsy, she has been on what I believe is heavy medication (medicated speed) for over a year now which helps her get through the days.

Her main problem is that she can never get out of bed, she has had a verbal warning from work and I am worried she may lose her job. She gets very defensive about the situation "no one understands" etc and doesn't seem to want to do anything about it, using it as an excuse. I am also concerned she is happy to use this for the rest of her life.

Can anyone advise of anything you can do, take, routines etc to make getting up more manageable??

And also anyway of speaking to her to see that there is a way of beating/dealing with an illness.

Big thanks in advance.

What we do in our family is give the wake-up medicine about 45min to an hour BEFORE actual get-up needs to happen. Just get the pill down and go back to sleep. Get up after the pill kicks in. And I really doubt your girlfriend is just using this as an "excuse". It a DISABILITY. And yeah - you and others probably don't understand.... understand that every day she does get up and works is probably due to more STRENGTH of character and will-power than most people can fathom.

Agreed...

This is not something that you can "beat" or cure... fact is if she has Narcolepsy she will have it for life. All that can be done is the management of symptoms.

It seems that you don't understand that she is not making excuses, how can her boss? I would suggest she speaks to HR about her DISABILITY and sees if there is something that can be done about the warning. For example, following the advice of the 45 min pill taking before wake up.

You should be encouraging her right now. I know it's difficult to understand, but please trust me, we have NO control where we fall asleep/when. I have 11 alarms! YES 11

As a longtime sufferer of Narcolepsy myself, I can attest to the slumber state in the morning due to taking amphetamines to stay away during the day. The amphetamines create a vicious cycle (and actually ruined my marriage). Since they are like a speed type drug, they run you so hard during the day that when you finally do go to sleep, you sleep so very heavily. It is very difficult to awake in the morning - you feel like you've been drugged! I went through the horrible cycle of this for five years while taking amphetamines and the week my marriage ended, I went cold turkey off those drugs. The best thing I ever did! Most people have to take two drugs to make life work - the one that keeps you awake and an antidepressant. Many sleep doctors prescribe these two type drugs. I was on Cymbalta for the antidepressant (and still am) but what I realized when I got off the amphetamines is that Cymbalta works wonders for my narcolepsy all by itself - much better than it did with other drugs at the same time. The Cymbalta by itself now actually does great in controlling my narcolepsy and sleep attacks. I'm still a heavy sleeper and always will be (understand the 11 alarms very well .. lol) but I can get up easier, and without feeling like I'm drugged.

Honestly, I would suggest highly she get off the amphetamines and give something else a try for awhile, like what I'm doing. Not all people can take Cymbalta but if she can, it might be worth a try. I'm trying to get my sleep doctor to try this idea out on other patients b/c it has been life changing for me - after YEARS of nothing working well. I also highly suggest a lightbox - another life saver for me. I have a small one and it's great. I hardly ever have to use it anymore though b/c the Cymbalta works great by itself. I don't know why it works - it just does. I am in no way cured and probably never will be, as anyone will tell you, but I'm much easier to get up. If you care about your girlfriend, you will try to support her b/c for all she knows, she may well believe this is the only option she has. I thought that - and suffered for years thinking that. You are welcome to email me for any other information that I can provide to help.

Btw, I have ALWAYS had the hardest time keeping a job b/c of my narcolepsy - that has been the hardest shame and guilt to deal with. And, it's not only about getting up - it's about getting there on time as well. No one close to me ever has understood my Narcolepsy, and half of my family thinks this is all in my head! So please remember that it's very hard for her to deal with the shame too - the defensiveness comes from the fact that we don't want to have to depend on someone but sometimes we have to - and that's hard. It also comes from the fact that we can't make anyone understand that they cannot fix us (and so many think they can). My email is **edited** if I can help in any other way. I was in her exact place three years ago - and I'm in a much better place now. I hope she can get where I am now.