I can't believe I've been so stupid
I realised over the last couple of days that a lot of things I've made various 'excuses' about over time have been directly related to my narcolepsy. I feel so dumb that it's taken me this long to figure it out.
I missed a lot of my last year or so of high school, because I would just go there and sleep during class. I put that down to stress and stuff going on in the family and it made sense at the time that it was just 'stress'. My grades reflected it and I went from an A student to pretty shitty marks.
I fell asleep frequently during a week long Microsoft course a few years ago. I put that down to boredom. :p
I've fallen asleep in meetings. I put that down to disinterest.
The last few months, (well always, actually) I've frequently zoned out or had short sleep attacks at work. I put that down to lack of enthusiasm, because they were (to me) menial temp jobs.
Add weight gain, short term memory issues, inability to concentrate/focus, hypnagogic hallucinations, weird body temperature fluctuations....I have NO idea why I couldn't see it was my narcolepsy. I told myself I was tired, depressed, stressed, getting old, you name it.
I went off my medication a couple of years ago (my doctor knew), because I felt I didn't need it. Only now I'm realising how badly I do need it and always have. I found a support board on f@ceb00k this week and everything makes sense now. All of it.
How stubborn and cocky have I been to think that I could have just got over a brain chemical imbalance that has no cure? I am pissed off with myself. The last 12-24 months has been really hard, for a lot of reasons, but it didn't have to be so hard. That thought makes me frustrated, but also relieved.
I sent my specialist an email yesterday asking for a new appointment asap, so I can go back on the medication again. I don't care anymore about the stigma of taking a narcotic. I want my quality of life back. I'll probably have to go back to hospital for a polysomnograph and MSLT, but it will be worth being hooked up to computers for a night if I can get back to 'normal'. Whatever that is.
Lori, I just read your latest post and wanted to show you this re parasomnias and somnambulism. From this website.
Although, strictly speaking, this heading includes all events accompanying sleep, generally only such conditions as sleep-walking, sleep-talking, sleep-automatisms, sleep-terrors, confusional arousals, nightmares, head-banging, teeth-grinding, periodic movements of sleep and also the phenomena of REM sleep behaviour are subsumed under this heading......
Sometimes complications, such as falls or stumbles, pose a danger for the walker, and outside help can help the walker to avoid these. Recollection of such nocturnal events on the following morning is fragmentary and undetailed.....
Narcolepsy, or a predisposition to it, is usually an inherited condition, but has occurred after head injury or brain damage caused by severe infection. The prevalence of narcolepsy is estimated to be 1-2 per 2000. .....
It's interesting that they've recommended you see a cardiologist, too (interesting to me coz that's one of my issues as well). Did you do the MSLT after the polysomnograph/sleep study? Could it be possible that your faints are actually sleep attacks? Just something extra you might wanna ask the docs if that hasn't already been ruled out.
I missed a lot of my last year or so of high school, because I would just go there and sleep during class. I put that down to stress and stuff going on in the family and it made sense at the time that it was just 'stress'. My grades reflected it and I went from an A student to pretty shitty marks.
I fell asleep frequently during a week long Microsoft course a few years ago. I put that down to boredom. :p
I've fallen asleep in meetings. I put that down to disinterest.
The last few months, (well always, actually) I've frequently zoned out or had short sleep attacks at work. I put that down to lack of enthusiasm, because they were (to me) menial temp jobs.
Add weight gain, short term memory issues, inability to concentrate/focus, hypnagogic hallucinations, weird body temperature fluctuations....I have NO idea why I couldn't see it was my narcolepsy. I told myself I was tired, depressed, stressed, getting old, you name it.
I went off my medication a couple of years ago (my doctor knew), because I felt I didn't need it. Only now I'm realising how badly I do need it and always have. I found a support board on f@ceb00k this week and everything makes sense now. All of it.
How stubborn and cocky have I been to think that I could have just got over a brain chemical imbalance that has no cure? I am pissed off with myself. The last 12-24 months has been really hard, for a lot of reasons, but it didn't have to be so hard. That thought makes me frustrated, but also relieved.
I sent my specialist an email yesterday asking for a new appointment asap, so I can go back on the medication again. I don't care anymore about the stigma of taking a narcotic. I want my quality of life back. I'll probably have to go back to hospital for a polysomnograph and MSLT, but it will be worth being hooked up to computers for a night if I can get back to 'normal'. Whatever that is.
Lori, I just read your latest post and wanted to show you this re parasomnias and somnambulism. From this website.
Although, strictly speaking, this heading includes all events accompanying sleep, generally only such conditions as sleep-walking, sleep-talking, sleep-automatisms, sleep-terrors, confusional arousals, nightmares, head-banging, teeth-grinding, periodic movements of sleep and also the phenomena of REM sleep behaviour are subsumed under this heading......
Sometimes complications, such as falls or stumbles, pose a danger for the walker, and outside help can help the walker to avoid these. Recollection of such nocturnal events on the following morning is fragmentary and undetailed.....
Narcolepsy, or a predisposition to it, is usually an inherited condition, but has occurred after head injury or brain damage caused by severe infection. The prevalence of narcolepsy is estimated to be 1-2 per 2000. .....
It's interesting that they've recommended you see a cardiologist, too (interesting to me coz that's one of my issues as well). Did you do the MSLT after the polysomnograph/sleep study? Could it be possible that your faints are actually sleep attacks? Just something extra you might wanna ask the docs if that hasn't already been ruled out.
posted by E in Oz at 8:05 pm
these thoughts escaped my brain at 8:05 pm
8 Comments:
That is so amazing! I am so glad you posted this. I only know of one person with this condition, and I have been worried about Lori for so long.
Thanks for taking the time to write this and for the link.
Good luck in everything.
~a
Sounds like you are back on the right track. Hope you feel better soon. I used to sleep walk. Last time I recall was about 14 yrs ago. It can be pretty scary when you live alone.
When I had my sleep study (and did the following day study) they ruled out narcolepsy. Yup, I do have the other nocturnal stuff going on.
I'll read the stuff behind the link. Thanks for thinking of me! :)
Annie, I worry about her, too. Thanks for posting. :-)
Thanks Michele.
Hey Lori, yeah I didn't think you had narcolepsy, but some of those symptoms sounded so much like what you're going through (and not what I am) that it got me thinking. Well, more than I over-think usually lol.
Eve
I can definitely see why you might have written it off to other things... I fall asleep in meetings too and I'm sure it's not unusual to fall asleep in those Microsoft classes - they can get so boring after lunch! lol
It makes sense too to think that you can "heal yourself" from things - you want to believe you can anyhow (most people do) so going off the drugs probably made sense at the time too.
If your quality of life is better with the narcotics... well... it's not an ideal situation but it might be the only solution....
Take care of yourself, it sounds like you are doing just that!
Hugs,
Anne
Hmmm. Interesting.
I don't think I would've put it together if I were in your shoes. Don't beat yourself up over it.
Take care! ;)
Is narcolepsy like leprosy, except your drugs fall off?
Thinking about you, E.
I hope that you and all your loved ones are safe.
xoxo
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