My daughter is now 16 years old, a junior in high school, and has been suffering with intense daytime sleepiness for the past 3 three years or so. She can not stay awake in her classes and says that she feels like a giant wave of sleep comes over her and she is powerless against it. It has been getting worse over time and now her teachers are getting annoyed at her because she is not paying attention in their classes. About a year and a half ago, she underwent a sleep study (both overnight and daytime) and it was inconclusive for narcolepsy which is what the doctor suspected it was. Although we did not get a definitive diagnosis, I believe she is a narcoleptic because she has all the other symptoms of narcolepsy, such as the intense, almost hallucinatory dreams and the temporary paralysis when falling asleep.
It has gotten to the point where she can no longer learn in a traditional school setting and we all so upset and frustrated by this because this is an important year for her in terms of getting into a decent college.
It is noteworthy that she is on an SSRI which I believe suppresses REM sleep. Could this be contributing to her sleepiness? If so, what can we do because she also has generalized anxiety and severe anxiety attacks and we are not sure how she would do off her medication for this. We tried Provigil prophylactically, but it gave her palpitations and had to be discontinued. She also suffers from orthostatic hypotension and takes Pindolol 5 mg qd.
If you can offer any insight into what can be done for our daughter, we would be so grateful. She is in despair over her inability to stay awake. Her friends understand when she has to sleep when they come over on the weekends, but she hates it.
Thank you.
Lisa H.
Dear Lisa H,
Thanks so very much for posting to our community. It sounds like your daughter is really facing some difficult health issues. And to have no diagnosis must be so very frustrating. There has go to be a way for you to find a definitive answer to what is happening to her.
The first thing I would suggest is that you go back to the doctors - all of them. Maybe they need to talk to each other about what is happening with your daughter. Between the SSRI for anxiety and hypertension meds, as well as the sleep issues, there may be some kind of connection, separately, the doctors are not seeing.
The second thing is that you may need to find more ( or new) doctors to consult. By contacting some of the national associations that focus on narcolepsy, insomnia, even sleep apnea, you may find more targeted specialists as well as specialized information that could help you on this journey.
In the meatime, though it may be repetitive, we have a good deal of material on our site that reading might prove helpful. I will also forward your post to our producer to see if one of our experts can follow up on this topic.
Hope this helps and all the best, sue (moderator)
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
I hope this helps, and I will be thinking of you and your daughter and wishing you the best.
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