Posted 28 September 2008 - 01:31 PM
I believe my younger sister may have some form of narcolepsy, but am concerned with how to approach her about it. Perhaps some of you can offer me some clues. How did you get diagnosed? What information or supportive gestures helped you through the long and often difficult diagnosis? What do you wish people around you had done when getting diagnosed or dealing with the treatments?
Here's a little about what has lead to my concern.
About a year ago, I saw the program, "I woke up in a Morgue" on the Discovery channel, and found some startling similarities between some of the patient's experiences to what my little sister has been struggling with since childhood.
As a child, she had terrible nightmares, would not fully wake up from them, and would often talk or move in her sleep. Back then, it often seemed to be triggered by changes in routine or environment like going to camp or sleeping at a friends house. They were classified as "night terrors", but she could often remember them...images and feelings that recur and haunt her to this day. She would often climb into bed with me in states of great distress.
As a young adolescent, she struggled with an unrelated, external trauma resulting in PTSD, and her sleep symptoms were often attributed to that. Long periods of sleep (days on end), trouble paying attention in school, and depression. She thought it was something she just had to deal with, that it was something just weird and wrong with her.
She has now reached her late 20's, and the PTSD and depression have been successfully treated for many years now, but she is still suffering from the same sleep problems that she did when a child. She still has bouts of terrible nightmares, and periods of time up to a week or more where she sleeps all day. She still talks in her sleep, now even more aggressively (swearing, yelling, tossing and turning), and has a very difficult time waking up or maintaining any kind of schedule. She has tried to go back to school for many years, only to start a semester, and eventually have to drop out due to missing so many classes from her daytime sleeping fits. Her speech and communication skills have also really suffered, and she tends to eat junk food in binges and then fall asleep. She has been tested and does not have diabetes.
I am afraid that these years of a possibly undiagnosed sleep disorder and the affect it has had on her social and academic life have caused so much damage to her self-esteem, and alienated her from others.
She is currently seeing a psychiatrist who specializes in neurology, and has successfully worked with her to treat her depression and PTSD. Now I am concerned about adding another layer to the mix by wanting her to be tested for a sleep disorder, and struggling with how to approach her about it, or what I can do to help her through it. The rest of my family also wants to help, but it has gone on so long, and it is such an underrated issue in society that they are stumped as to how to approach it.
She is a wonderful person...very bright, creative, and funny. After feeling helpless for so many years, I want to do what I can to help her. Your comments and recommendations are greatly appreciated. thanks!
Posted 28 September 2008 - 02:46 PM
I am guessing that others will also post thoughts and comments. While your sister's symptoms do sound like they might be narcolepsy, the only way to find out is for her to see a sleep specialist and to have a sleep study. A Polysomnogram (PSG) will give the doctor a baseline on your sister's sleep. It is an all-night test. She would then stay the next day for a Multiple Sleep Latency Test (MSLT). During that test, she will be asked to lay down in a dark room every 1.5 hours to see if she naps, how fast she naps, and if she has REM in those naps. After doing all of that, the sleep specialist will review the results and decide on a course of action. Only a PSG and MSLT can "show" narcolepsy. There is a "test" for a hormone that many people with narcolepsy are missing, but the hormone (orexin or hypocretin) is only found in the spinal fluid (meaning a spinal tap). And, none of the tests are completely reliable. Having said all of that, though, I would encourage you to recommend a sleep study to her. Even if it is not narcolepsy, the study can help discover what is happening.
You asked how others found out and what they might have wanted people to do for them. Obviously, I can only speak for myself. I had six years of constant doctor trips and tests, trying to uncover what might be wrong with me. While I had signs of narcolepsy earlier in my life, things became problematic in the Fall of 2001. I did have an inconclusive sleep study in the summer of 2004. As a result, I started taking stimulants, but the problems persisted. Sadly, it took me suggesting another sleep study 3 years later to finally get a diagnosis. The nature of this disease is that it is hard to diagnosis. Doctors don't know much about it, and the symptoms are difficult to identify. Seriously, if you want to drive a doctor crazy, tell her or him that your primary symptom is fatigue. The best thing you can do, in my opinion, is just what you are doing. You are not doubting that something is wrong with your sister. Instead, you are looking to help her. Is she resistant to the idea of narcolepsy? If so, you could try to discuss why she is. If not, talk to her and help her find a good sleep specialist (hopefully a neurologist). I would also encourage you to have her read some of the posting on this site. Likely, she will see some similarities to her own conditions.
Good luck! Please continue to post, and let us know what happens.
Posted 28 September 2008 - 06:40 PM
I am referring her to this site, and recommending that she read up on it before she sees her neurologist so she has a sense of what symptoms are important to tell the dr. about, and hopefully she will get to do a sleep study to confirm any possible diagnosis.
Any other responses about what people with sleep disorders found helpful or comforting through this process is still greatly appreciated!
Posted 28 September 2008 - 06:41 PM
Does she loose control of her muscle strength when laughing, or while experiencing strong emotions?
Has she ever told you about waking up and not being able to move?
What part of "I woke up in a morgue" sounded familiar?
Be sure to educate yourself. MANY of us here were mis-diagnosed with a mental problem before properly diagnosed. I won't speak for all of us, but I know I personally wanted to smack every person that had started a sentence off with, "You know your problem is possibly..."
While it's never meant as a personal attack, it can sure seem that way.
Just some thoughts from someone who knows the other side.
Posted 29 September 2008 - 01:48 AM
I am not a physician and do not even play one on TV so nothing here should be taken as medical diagnosis, treatment or advice.
Your sister may not have Narcolepsy. There are more than 80 recognized Sleep Disorders. Many of them are far more common than Narcolesy and some are even more rare. Many of them have similar symptom so that it takes a physician who is specially trained, experienced and Board Certified in Sleep Medicine. It is very possible that she has two or more of these issues.
The Sleep Issues your sister suffered from as a child sounds like Parasomnias. These are a collection of disorders that includes Sleep Walking, Sleep Talking, Nightmares, Sleep Eating, Night Terrors, Bed Wetting, etc. They exist in a sort of Limbo between sleep and wake. These are so common in childhood that they are often considered part of normal development. Episodes can often be triggered by stress such as a change in sleep routine. The person can be so Sleepy from the partial arrousals that they are unable to function properly the day after. They usually taper off and disappear around puberty. That the symptoms are still so strong during her third decade of life is unusual and can be serious. She should talk to her doctors about this and request a referal to a Sleep Specialist for evaluation and possible treatment.
The screaming and cursing could be due to her being cranky from lack of restful sleep. These could also be due to another cause such as neurological problems. Tossing and turning in bed could relate to her Parasomnia or another Sleep Disorder such as Sleep Apnea, Restless Leg Syndrome, Periodic Limb Movement Disorder, etc.
If you are accurate in your description of her sleeping most of the day and night for days to week at a time (getting up only to use the toilet and to eat and drink) then sleeping fairly normal for weeks to months at a time, she could have a Recurrent Hypersomnia such as Kleine-Levin Syndrome. Pesonality changes during episodes is not uncommon. Onset is typically in adolescence and the person often outgrows the disorder but it can persist throughout life. It is more commonly reported in males than females but an exact gender ratio is not known.
She is being treated for PTSD and Depression. One of the symptoms of these problems, and also a side effect of treatment, can be Sleep Disturbances. A Sleep Disorder from another cause can mimic Depression and PTSD. Your sister needs to accuratley report her problems to the treating physicians so that any necessary adjustment to diagnosis, treatment and prescription medicines can be made.
To help her keep track of her symptoms she could keep a Sleep Diary in which she records all of the aspects of her sleep. This includes bed times, wake times, how she felt before and after sleep, quality of sleep, symptoms observed by others while she is asleep, onset of symptoms and their severity, medications and their effects, etc. After several weeks of keeping the diary she may see patterns emerge. Her doctors should be interested in this kind of documentation.
I do not know your sister, or you, or about her relationship with you or other members of the family or friends. I am not in a position to tell you how to approach her to deal with this delicate matter. I believe that you will eventually discuss your findings with her out of love and compassion. You must remember to respect her pride and self respect, it is all that some of us have.
Good luck to you and your sister.