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Narcolepsy anyone?

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Old 08-07-2014, 11:43 PM   #1
Mom_2_4
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Default Narcolepsy anyone?

So I'm a bit freaked out and relieved to know that my sleep doc believes I have narcolepsy. He interviewed me for 2 hours and without any knowledge by me, I described my symptoms to a "t" of narcolepsy. Without cataplexy, but the other 4 major symptoms are me perfectly.

I've suffered my whole life of not getting enough sleep no matter how much I get. And have struggled with staying awake during daytime hours. My best hours are late at night when my brain seems to think it's time to wake up. So basically my sleep/wake center in my brain is all screwed up.

Without any prior knowledge of the sleep study I had done 3 years ago, the sleep doc went on to explain that typically sleep studies of narcoleptics show that they have frequent "arousals" during their sleep and that they do not stay in the deep sleep phase for long enough. This is EXACTLY what my sleep study showed from 3 years ago. The doctor was aghast that no one diagnosed me then but it was my primary who ordered it and then treated me with some simple sleeping pills basically shrugging her shoulders saying I just get poor quality sleep. I didn't know any better so I went with it. Fast forward 3 years and the sleeping pills haven't been doing jack for me for a long time and I'm out of steam again. I can't sleep enough. Everything around me is falling apart and I feel literally sick because I'm so sleep deprived after 12 hours of sleep. Makes no sense, right? Of course all my blood work is normal. And I've been down the depression path so many times that I've just given into the fact that I just must be super depressed and no meds help. Then BAM! I find this sleep doc who is convinced he knows what is up.

Well, the next step is an overnight sleep study followed by a study where you stay awake for 2 hrs then nap for 20 mins off and on like 4 or 5 times. They are looking to see who quickly you fall asleep and if you enter REM sleep during those naps (you're not supposed to until about 90 mins into your sleep).

In the mean time doc has me on stimulants during the day and sleeping aids at night. But after the sleep studies are complete (even if they don't totally conclude narcolepsy) he says I have so many of the symptoms he recommends a drug called Xyrem. He swears by it.

Anyway, I'm just wondering if any of you have been down this path and what has worked for you. I'm very hopeful. But I'm scared too. My husband almost left me due to all of this. He has thought for years I'm just unmotivated and lazy, no matter how many times I've assured him that THERE IS SOMETHING WRONG!!!!

I pray this works!!!! Would love to hear your stories!
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Old 03-17-2015, 08:03 AM   #2
AndromedaJulie
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Mom,

I couldn't believe this when I read it. (I am new to these forums - here for my own PCS - but looking around and found your post.) You are describing exactly what my husband went through for six years. We have never found anyone else with this kind of sleep problem. He tried every kind of natural and pharmaceutical sleep aid, acupuncture, therapy, etc., actually had a first sleep study where the info was missed, then finally a second where they saw those results and was put on Xyrem. Same issues had happened for him: he was falling apart, there were days I had to drive him to work he was so sleep deprived and unsafe, he developed fibromyalgia, he literally barely slept for 6 years. Needed stimulants to function during the day (although he couldn't nap otherwise anyway). I am so sorry you went through this also and that this was so hard on your marriage. I understand completely. It is hell for the person suffering it. Sleep deprivation is literally a form of torture.

Xyrem works for sleep. It has had a lot of very difficult side effects that have been hell for my husband, but I don't know if that happens for everyone. Did you try it? How has it been for you? For him, the one really huge side effect, which is widely known for Xyrem, is the depression. And it was really bad. He tried and was unsuccessful with almost every type of antidepressant and mood stabilizer to combat it until finally Latuda worked somewhat (not great). It was still a big problem for a couple years. Just a couple months ago after a lot of difficulty with that (he wanted to stop the Xyrem, but I was really opposed to that), the doc has played with his dosage and timing of the Xyrem so that the depression is greatly improved and he is getting less sleep but still enough to be healthy and function.

I would love to hear from you. I hope you have had luck with this and not difficulties, but if you have, please share them. I know for us, this has been so frightening because no doctor has been able to help and it has felt hopeless. You are not alone.

Julie
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Old 06-08-2015, 04:55 PM   #3
waterwillow
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How did your sleep study go. How are your SATs.

Do you move about while you dream?

I have REM sleep disorder and am so fatigued every day of my life that work etc is totally out of the question. In fact I have recently had my driving licence revoked as I am a risk of falling asleep at the wheel.

I have been prescribed Clonazapam at night which lessens my ability to enter REM and that way I don't act out my dreams as much or injure myself or others. Still exhausted mind you.

Like you, lack of sleep has caused huge pressure on my relationship with my wife. We must sleep apart. See hit the wife again post.

I seem also to have apnea without any obstruction which compounds things.

I can only wish you well and pray that your depression lessens in time.

Good Luck
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