Patience Isn't Always a Virtue! (Narcolepsy)

Member Name: QuinnElaine

Product:	Narcolepsy
Date:	03/12/01 (194 review reads)
Rating:

Advantages: There are no advantages to narcolepsy.

Disadvantages: The greatest disadvantage is the ignorance, so make yourself aware.

I'm not sure where to start with this and I must admit that I am feeling very self-conscious as I begin. You see, this is all still new to me in many ways, and it's rather like having a huge open sore upon your soul and then inviting someone to have a look at it in a casual conversation. So why ask you to take a look? Well, because in the end I wouldn't want anyone to end up where I am now and it was so easy to get here.

Alright, a little background first. My husband and I met 15 years ago. While we were never formally married and have no documents proclaiming such, we have been married now for 14 years, and have three children. 'Love' always feels like such a small word for this emotion that wells up from somewhere inside. In my case, it was love at first sight and I love him still, even though he is no longer the person he was when we met.

Our son, now 13, was recently diagnosed with a form of narcolepsy. For those of you who have no idea what narcolepsy is, it is a neurological sleep disorder. It can begin at any age, although it usually manifests in the teen years, and is believed to be hereditary. About 1 out of every 1000 people (men and women, all races) suffer from narcolepsy. It is a lifelong condition which requires treatment, and is considered to be legal disability. The four primary symptoms of narcolepsy are:

1. Excessive Daytime Sleepiness - (EDS) this includes persistent drowsiness, and falling asleep at inappropriate times like during a conversation or while driving a car. It is probably most noticeable in others as an excessive tendency to nap.

2. Cataplexy - is "a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear, stress, or anger". It might be only a slight feeling of weakness or limpness, but it may be as extreme as a complete collapse where the narcoleptic appears unconscious but is actually awake and alert.

3. Hypn
agogic Hallucinations - As I understand it, these are vivid, realistic and often frightening dreams which can occur while going to sleep or waking up. I have read several accounts from other narcoleptics and can just barely imagine what this must be like, wondering whether you are asleep or awake or just going insane.

4. Sleep Paralysis - We all experience a normal state of paralysis during our sleep cycles, but this usually occurs while the brain is either partially awake or partially asleep. It is simply a temporary inability to move, yet imagine trying to get up in the morning and not being able to move!

Now, all things considered, my son is rather lucky. We caught it early, so he is beginning medication much early than most. Nor does he suffer from many of the more severe symptoms of narcolepsy. It is commonly, and perhaps ironically, misdiagnosed as ADHD, and later on as depression. My son was misdiagnosed at about eight as ADHD. It seems fortunate to me, in hindsight, since Ritalin was then, and sometimes still is one of several medications that is used to treat narcolepsy. It was only since the end of the last school year that we began to see signs that we took for depression.

He lost interest in just about everything except sleeping, and video/computer games. He went from your average, somewhat introverted kid to complete self-loathing. Granted, depression and narcolepsy seem to go hand in hand, but at the time we had no idea that he was a narcoleptic. We got him back into counseling and by late September of this year, we were pulling our hair out with sheer frustration.

Nothing seemed to help. Despite the fact that he is quite honestly an intelligent young man, his grades were deplorable and his attitude was even worse. I felt helpless watching my only son spiral rapidly into a very dark place indeed.

It was pure serendipity that my son was correctly diagnosed with narcolepsy. He happened to agree to particip
ate in a study being done on depression in adolescents, that's all. They certainly did not expect to find anything while conducting their study, and made sure to mention this several times throughout the preliminary appointment, as well as at the beginning of the three day sleep study. I am more grateful than words can express that we finally know what has really been wrong all of these years.

It has only been a little over two weeks since my son started medication. Physically, I can see the improvements already, yet there is still such a long way to go. You see, he has been battling not only the physical aspects of narcolepsy, but the depression, the feelings of worthlessness, and failure for quite some time. It has become habit now, and I still have no clue how to help him break it.

To make matters worse, it seems quite likely that my husband also has narcolepsy. He most definitely suffers from Obstructive Sleep Apnea, a condition where the muscles in the walls of your throat relax while you sleep so that the walls collapse on themselves and obstruct the flow of air, i.e. extremely loud, choking snores while he sleeps. I have tried for years to get him to seek help for this, but it is only since our son was diagnosed that my husband set an appointment.

Unfortunately, we will have to wait until the beginning of January for the Sleep Apnea to be officially diagnosed and it is only afterwards that they will look into the possibility of narcolepsy. Actually, either way is fine by me! The apnea is more life-threatening, of course, and I will be ecstatic to be able to sleep next to him without the snoring that currently keeps away even large animals whenever we camp.

The real problem for me is that my husband's decline into depression has been even more dramatic than our son's. At the same time, with both of them, it has all seemed so gradual that it is hard to really say when it all started. I feel like a nervous herd
animal that can't see the lion that has been stalking me.

I look at my husband now and can barely see any trace of the man I met 15 years ago. Once, he was even-tempered, mellow, open-minded, communicative, personable, optimistic, and enthusiastic about anything he undertook. Now, he is extremely moody, depressed, stressed out, narrow-minded, paranoid, anti-social, pessimistic, and has slept a total of approximately 38 out of the last 48 out hours simply because "there is nothing for him to stay awake for"!

For me, this is just the tip of the iceberg. Not only am I trying to help both of them, but I have two other children who need me. Our financial situation has spiraled out of control as my husband's ailments went untreated, so I am also trying to figure out how to dig our way out of the hole we are in, while virtually carrying their emotional needs on my back.

Everything from the car to our eyeglasses is falling apart around me. I haven't had a working oven in two years, although the stovetop is still functional. We are currently bringing in just enough to feed everyone and barely pay the most necessary bills. Of course, the school's basic response to my son's condition is "Nah, that's not it." Little did I know that public gym teachers and guidance couselors have medical degrees.

Is this giving you a good idea of the chaos I am facing? Our best friend and her two kids moved in with us at the end of August, and they need me too. Thank God she did move in with us too, or else I would be trying to deal with all of this... alone.

I honestly can't tell you how I am staying sane, but I'm here. It is far from easy to refrain from angry outbursts, or to ignore the stress, fear, hurt, and sadness that seem to be my only constant companions now. Every day, I want to give up. Honestly, I have imagined myself just getting up, walking out the door, and not coming back. I wan
t to rail against the world, and beat my fists against the walls of the life that so often feels as if it is closing in around me.

Yet, I look at them all, my loved ones, and the well of Love inside me seems bottomless, overflowing. Then, I find myself transfixed with awe that one simple person can hold so much love. Yes, ‘love’ is such a small word for this overwhelming emotion. Thus, I do what I can and forget the rest, hold on tight, remind myself to breathe, and remember that at the bottom of Pandora’s box… there is always Hope.

If you snore, don’t brush it aside as something minor. Not only can it shorten your life, it can rob your life of the very qualities that make it worth living. If you have found yourself nodding in agreement with any of the symptoms that I have mentioned here, my advice is most emphatic. Do Not Be Patient, Do Not Wait, Seek Medical Help!

For more information on narcolepsy go check out cataplexic dot com. You will find plenty of great links included in this site, as well as personal accounts from those who live with this little known condition.

I do apologize for the length of this article, but I simply didn't know how to make any sense out of this with fewer words than I have chosen. Thank you for your time.

UPDATE: February 1st 2002
~~~~~~~~~~~~~~~~~~~~~~~~~

Instead of showing any signs of improvement, our son has gradually gotten worse in some ways. His agression and depression have only increased and he has done all he could to cause havoc at school. The psychiatrist was unable to see him until March, despite having an Urgent request from another doctor for an immediate evaluation, thus we went to our Pediatrician for a general perscription to treat the depression until he could be see properly. Unfortunately, the Paxil that he was prescribed takes anywhere from 2 weeks to a month to achieve any results.

Therefore, as of last Tues
day, we decided to take extreme measures. Under the advice of a certain doctor, we took him to the Western Psychiatric Hospital for a 201 (a voluntary sign in for a 72 hour evaluation). This has been quite an eye opener for our son, and in some respects has really gone a long way towards making him see reality, good and bad. He has certainly come to appreciate how good he had it here at home! This was Not the spa vacation he thought it would be.

However, we also had ulterior motives. By admitting him this way, he will now receive priority for a Partial program where he will spend the majority of his day either in academic classes where he can work at his own pace and out patient therapy. As a short term benefit, our son has been jolted enough by his experiences and the reality that his own choices led him to where he is that he has been making ever effort to take on a positive attitude in hopes that this will get him released sooner. Little does he realize that this is the first step to making a positive outlook a habit in his life, but we have been well pleased thus far both with the results we can see beginning in our son and the care he has received.

This was by no means an easy decision for my husband and I to make, nor an easy one to actually carry out and live with. Feeling overwhelmed with guilt, remorse, depression, and anxiety are all normal reactions to enforcing such a decision and we have, indeed, gone through them all. Only time will really tell in the end if we made the right choice, but I know in my heart that we have made the best choice out of the options we had at the time. We love our son, and feel his absense with almost physical pain, but hope for the best and continue to give him all the love and support we can. To any readers going through a similar situation with a loved one, I can only say that my best wishes go out to you, and I hope you will remember in your darkest moments that you are not alone and love is the greates
t of healing balms.

Wishing You All Laughter...

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