Daughter can't stay awake

Sue,

Thank you for responding to my posting. 

I have a concern that the SSRI my daughter is on for anxiety may be, in part, exacerbating her sleepiness, although I am not sure.  But, her anxiety is severe enough that we can't discontinue the medication, although I would love to get her off all medications.  We have tried giving it to her at night instead of in the morning, but it had no effect on her sleepiness at all. 

It is my understanding that, if she does indeed have narcolepsy, as I believe she does, then the only treatment presently available is Provigil.  Well, we tried that and it made her heart go crazy and we had to stop it.  I am so scared that her life is going to fall apart and that she won't be able to go to college and have a full future if all she can do is sleep her days away.  Yesterday, she slept almost the entire day away.  She woke up briefly and ate something and then went back to bed for the night.  Now, this morning, she asked if she can go into school late because she is so tired. 

I am thinking of requesting an MRI of her brain with contrast just to be sure she doesn't have a tumor. 

Do you know of any trials going on with orexin?  I read something about the brains of narcoleptics being deficient in it.  I thought maybe she could become involved in a clinical trial if there is one going on somewhere. 

Please, please help us.  She is a junior in high school and will, no doubt, fail all her classes if this goes on much longer.  She wants so badly to go to college and I just don't know how she can in her present state. 

Thank you so much.

Hello-- I just wanted to respond, because I very much relate to your daughter's situation.  My narcolepsy onset was at the age of about 14 and a half, right as my first year in high school was ending.  I had no idea what it was at the time-- I just knew I had to fight those exact same overpowering waves of sleepiness, and I knew I was always fighting a losing battle.  The sleep always won, but I couldn't make anyone else understand that.

Please know, however, that with no medication for the narcolepsy during my teenage years, I was able to get into the selective university of my choice and I graduate with a degree in political science in 4 years.  I completed a graduate program as well, and now have an M.A.  I have held jobs successfully, and and I currenty am in a job that I love-- even though I do have to take naps in the afternoons, in particular if I have spent a lot of time in a passive situation (sitting, staring at the computer, not talking to anyone, etc).  I did sleep a lot in classes in undergrad and grad school.  But, I made it through.  Certain folks most likely questioned my committment to school when I slept in class, but the work I turned in always showed that I was taking my studies seriously.  Your daughter's situation sounds a bit different than mine, so I don't mean to draw a direct equivalence, but I am hopeful for her!  I was (and am) always sleepy, but I've done OK as an adult.

I was recently diagnosed with narcolepsy, after a combination polysomnography and multiple sleep latency test, which revealed my average time to REM sleep onset pathologically short at 2 minutes.  I was given Provigil, and I had a series of bizarre but debilitating reactions to it: 12-hour migraine hedaches that blurred my vision, chills, fever, strong aches in my back, and an incredibly vivid sense of itching along the bottoms of my feet.

I stopped taking Provigil, and I am about to start a prescription for Ritalin.  If your doctors have not already suggested this, please discuss with them the option of Ritalin or Adderall in treatment for your daughter's condition.  These are also indicated for the treatment of narcolepsy, and I am hopeful I can take either of these without the concert of bizarre sypmtoms brought on by Provigil.  If there is no negative interaction between the anxiety medication and the Ritalin or Adderall, that could be something to explore.  Ritalin and Adderall are amphetimines, however, and so the dosage should be monitored and controlled.

Narcolepsy is caused by dysregulation of Hypocretin (also called Orexin), which is the substance that regulates sleep cycles and energy expenditure.  I have read differing theories about the cause of the dysregulation-- the National Institute of Health describes it as potentially an autoimmune deficiency in which the neurons that produce Orexin are attacked by the body, leaving the narcoleptic brain with fewer neurons to produce the signals necessary to regulate sleep and wakefulness.  If it helps, you can read more here: http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

Thank you so much for your insights.  It makes me feel strangely better to hear about other people who have gone though what my daughter is going through.  It is especially encouraging to hear that you made it through school to a successful career. 

Unfortunately, at this point, our daughter is really falling behind academically because she can't be awake for her morning classes (before noon).  We are exploring alternative educational modalities because traditional school just isn't working.  We don't have the definative diagnosis of narcolepsy (or anything else for that matter), to give to the school district to work with, so our options are limited -- unless I unenroll her from school and put together some type of home school program combined with night classes at the community college. 

Given all that I've read, I feel fairly sure she is narcoleptic.  The other thing that sounds possible is adrenal fatigue.  This carries with it some of the same hallmarks as narcolepsy.  We are waiting to schedule another sleep study, but first have to slowly titrate down her anti-anxiety medication (Paxil) because Paxil suppresses REM sleep and can skew the study results. 

My concern with introducing drugs like Adderall or Ritalin is that I think stimulants can cause anxiety.  Molly already suffers from terrible panic attacks and generalized anxiety.  All we need is her having more attacks from the Ritalin.  I'm not sure about those as possibilities. 

Molly also tried the Provigil prophylactically, but it gave her palpitations, so we stopped it. 

I also read about orexin and wish they were a little closer to finding a way to administer it to narcoleptics.  I hear they're about 10 years out from ever using it on humans.  The damn FDA makes it impossible to do anything. 

Tell me...if you slept through your classes, how did you pass?  Did you just study a lot when you were awake?  Did you take night classes for grad school?  Also, now that you are working, how do you manage during the day?  Nobody cares if you sleep at your desk?  What do you do?  My daughter wants to be a therapist and has a long road ahead of her in terms of schooling.  I am really worried about her future, but I feel happy to hear that you did well. 

Thanks again for your words and recommendations.  I really appreciate it very much.

Lisa

This is very interesting and the first I've ever heard of something like this.

A couple of questions, though....

1.  What type of doctor discovered this problem with the piece of tissue?

2.  Was your sister tired from birth all the time or did this develop and worsen over the years?  I ask because my daughter used to be very lively and awake until about the age of 13 or so.  I wasn't sure if the problem your sister had showed itself right away.

Thank you so much for your comment.  I really appreciate it.  This is a new avenue to possibly explore in a vast wilderness of unclarity. 

Lisa H.

Thanks for the info, but I don't think my daughter can take Adderall or other stimulants because in addition to her sleepiness, she has really bad panic attacks and generalized anxiety.  Stimulants can cause panic attacks and anxiety. 

My daughter also just went through 16 hours of testing with a neuropsych, who tested her brain function and says there is nothing wrong with her brain that could explain the sleepiness, so so much for that.

Molly has had a sleep study, which was inconclusive for narcolepsy.  At this point, we still have no answers and we are feeling desperate. 

Our next step is to go outside the allopathic traditional medical community and see a homeopathic physician. We are also going to try hypnosis.  I have no idea if any of this will help, but it can't hurt.

I will let you know if it works.

Be well and good luck in your search for your answer.

Lisa