Mmmm.....sleeeep
With all that's gone on with me medically lately, the doc (specialist) seems to think that putting me back on my original meds is not the wise thing to do until I do another sleep study overnight at the hospital. As much as I can see his point (narcotics aren't something docs like to hand out like sweets), it's frustrating. I want to feel normal...and awake...and energetic.
I'm booked into to the sleep unit for 11 July. C reckons he wants to come along coz he won't be able to sleep with out me hehe, which I think is cute in a dorky way. I'd love for him to be able to be with me there, but someone has to stay home and tape Desperate Housewives for me.
If he knew just what it involved, I don't think he'd be so keen to come along. I was going to explain the process, but I found an article that gives a pretty good example of what goes on...
NARCOLEPSY
The most serious of the sleep disorders, narcolepsy is a rarity, affecting about 0.05 per cent of adults worldwide. ... Sufferers are treated with amphetamines (which is what I used to take) and Ritalin to keep them alert. A new medication, Modafilil, that promotes wakefulness without the stimulant effect, may provide some relief. (The lovely Modafinil is the drug that caused me to have serious nausea for over a week and throw up....an apparently undocumented side affect.)
The waking hours
Drinking a few glasses of wine before bed doesn't help you sleep. Instead, it's more likely to interfere with normal sleep patterns, as I discovered when I spent a night in a private inner-city clinic that tests for sleep disorders.
After I arrived at 9pm, two technicians spent 90 minutes preparing me - they put glue in my hair, stuck electrodes to my scalp, suckered them to my forehead and inserted tubes up my nose. Wires across my fingers, legs, feet, chest and waist attached to a machine that pulsated and hummed through the night felt like a tight leash.
Trained on my bed was an infra-red camera and microphone, monitored by a technologist in the next room, who could hear the beating of my heart and watch as I struggled with a heavy quilt. Jagged brain wave readings recorded the hours spent without sleep.
At 3.30am, uncomfortable, anxious and still awake, I rolled over and pulled out the cords attached to the machine. The technologist ran in and reconnected me.
At 6am breakfast was served. I had slept a measly 103 minutes, in which time the machines picked up a mild case of sleep apnoea.
Expect to pay up to $495 a night for a bed in a private clinic. Medicare and private health funds only cover the pre- and post-sleep consultations.
Stays at St Vincent Hospital's sleep centre are covered by Medicare or private health funds but there is about a four-week wait for a bed. Patients are referred to the clinic by their doctor.
Ok, so last time it cost me $50, so if it's $495 I'm gonna have a fit. And my 24 hours of fun didn't end at 6am. They woke us at 6am, we had breakfast, cleaned up, and went back to bed. Three times they sent us back to sleep for half an hour at a time. The theory was that you had a full night's sleep, so each time they sent you back for more sleep, it should take longer to get back to sleep again. I went back to sleep faster each time. Yay to me for being different!
Right now, I'm not taking any drugs at all, which is a nice change, but I feel like I'm waiting till my next fix. I know my appointment is not for a number of weeks, and I'm holding out till my follow up where the doc can say, "yes, you're right, you're still tired all the time and you still have a problem, so I'll give you the drugs now".
Just wish he could have sent his letter off to the government yesterday so he could get me a prescription. Within a week I'd be oh so happy, wheeee energetic and so switched on I could win on all the tv quiz shows.
Can you tell I really want those drugs?!
I'm booked into to the sleep unit for 11 July. C reckons he wants to come along coz he won't be able to sleep with out me hehe, which I think is cute in a dorky way. I'd love for him to be able to be with me there, but someone has to stay home and tape Desperate Housewives for me.
If he knew just what it involved, I don't think he'd be so keen to come along. I was going to explain the process, but I found an article that gives a pretty good example of what goes on...
NARCOLEPSY
The most serious of the sleep disorders, narcolepsy is a rarity, affecting about 0.05 per cent of adults worldwide. ... Sufferers are treated with amphetamines (which is what I used to take) and Ritalin to keep them alert. A new medication, Modafilil, that promotes wakefulness without the stimulant effect, may provide some relief. (The lovely Modafinil is the drug that caused me to have serious nausea for over a week and throw up....an apparently undocumented side affect.)
The waking hours
Drinking a few glasses of wine before bed doesn't help you sleep. Instead, it's more likely to interfere with normal sleep patterns, as I discovered when I spent a night in a private inner-city clinic that tests for sleep disorders.
After I arrived at 9pm, two technicians spent 90 minutes preparing me - they put glue in my hair, stuck electrodes to my scalp, suckered them to my forehead and inserted tubes up my nose. Wires across my fingers, legs, feet, chest and waist attached to a machine that pulsated and hummed through the night felt like a tight leash.
Trained on my bed was an infra-red camera and microphone, monitored by a technologist in the next room, who could hear the beating of my heart and watch as I struggled with a heavy quilt. Jagged brain wave readings recorded the hours spent without sleep.
At 3.30am, uncomfortable, anxious and still awake, I rolled over and pulled out the cords attached to the machine. The technologist ran in and reconnected me.
At 6am breakfast was served. I had slept a measly 103 minutes, in which time the machines picked up a mild case of sleep apnoea.
Expect to pay up to $495 a night for a bed in a private clinic. Medicare and private health funds only cover the pre- and post-sleep consultations.
Stays at St Vincent Hospital's sleep centre are covered by Medicare or private health funds but there is about a four-week wait for a bed. Patients are referred to the clinic by their doctor.
Ok, so last time it cost me $50, so if it's $495 I'm gonna have a fit. And my 24 hours of fun didn't end at 6am. They woke us at 6am, we had breakfast, cleaned up, and went back to bed. Three times they sent us back to sleep for half an hour at a time. The theory was that you had a full night's sleep, so each time they sent you back for more sleep, it should take longer to get back to sleep again. I went back to sleep faster each time. Yay to me for being different!
Right now, I'm not taking any drugs at all, which is a nice change, but I feel like I'm waiting till my next fix. I know my appointment is not for a number of weeks, and I'm holding out till my follow up where the doc can say, "yes, you're right, you're still tired all the time and you still have a problem, so I'll give you the drugs now".
Just wish he could have sent his letter off to the government yesterday so he could get me a prescription. Within a week I'd be oh so happy, wheeee energetic and so switched on I could win on all the tv quiz shows.
Can you tell I really want those drugs?!
posted by E in Oz at 12:26 pm
these thoughts escaped my brain at 12:26 pm
4 Comments:
I'm not letting B read this, lol, or he'll never reschedule his night at the sleep clinic, and I'd really like him to deal with his sleep apnea. (you know S's hubby has sleep apnea, too? she mentioned it on the blog when she was blogging there. And me with my chronic insomnia for the past 6 years. Weird that we all have something) (altho frankly I'd rather have my insomnia than your narcolepsy. Poor E!)
Here's hoping that they say "oh, wow, you need drugs! lots of drugs, tons of drugs, here's all the drugs you want!" lol, because you know with my 24 hour morphine I ain't gonna look down on you for amphetamines, lol. We can blog on legal and necessary drugs together, woo hoo!
;)
(hey, I saw your response before... thanks. you know I loves ya, I just am a bit of a worrywart sometimes lol)
I have semi-insomnia but have never been to a sleep unit. I think the fact that it was costing me $495 would keep me awake nights in itself : )
my D did a sleep study several years ago. he, TOO, has sleep apnea - but only during the times that he's alseep on his back. that leaves me with the responsibility of giving him a shove when i find him asleep on his back.
good luck with this, E. i know how much better you would feel, if only you could get this problem solved. in the meantime, bring on the drugs!
xoxo
~Anonymous G
Ugh! Fingers crossed that you get the drugs soon but even better that your docs figure out a way without drugs.
A side note: M saw your blog up and the little black and white photo you have and said 'Oooh, she's cute! Who's that?' I guess you have another fan. ;)
a
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