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#1 Xvicki-woodX

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Posted 05 October 2008 - 11:54 AM

hi ive been recently been diagnosed with cataplexy on its own. apparently its really rare. im goin to fox lane sleep clinic in londons St Thomas. what do they do at a sleep clinic? i havent been told anything and would like to no what they are goin to do. has any one been 2 the same clinic that im going to? i would be greatfull of any advice thanks x0x

#2 elh648

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Posted 06 October 2008 - 01:03 AM

I am not sure if the tests are different for just cataplexy, but the sleep clinics I have been to, they attach a bunch of electrodes to your head which monitor your brain functions while you sleep. It gives them how long it takes you to go to sleep, go into REM sleep, how long you slept, and I am not sure what else. At the place I was at they also video you while you sleep. I would say it sounds worst than it is but I can fall asleep during just about anything, so I am probably not the most objective person.
I hope this helps. If you have other questions please ask and I will do my best to answer them. Good luck.

#3 Mike M

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Posted 09 October 2008 - 10:20 PM

QUOTE (Xvicki-woodX @ Oct 5 2008, 11:54 AM) <{POST_SNAPBACK}>
hi ive been recently been diagnosed with cataplexy on its own. apparently its really rare.


I actually know one other person who has had a similar diagnosis. She actually experiences sleepiness quite a bit, but her PSG (polysomnogram) and MSLT (multiple sleep latency test) did not show it. I too have read that it is extremely rare.

QUOTE (Xvicki-woodX @ Oct 5 2008, 11:54 AM) <{POST_SNAPBACK}>
what do they do at a sleep clinic?


elh648 did a good job of describing the PSG. That is the "overnight" sleep study. Likely, you will then stay for the "nap study" during the next day. That is the MSLT. During that test, you will be asked to lay down in a dark room every hour and a half. You will keep the head electrodes on. The sleep tech will record how quickly you sleep and if you enter REM during any of the naps. Basically, you will take 4 or 5 naps. The "average" of how quickly you fall asleep and the number of times you experience REM during any of the naps will help your doctor determine if you "have" narcolepsy. Interestingly, the diagnostics for narcolepsy (in the U.S.) explain that regardless of the PSG and MSLT, if you have cataplexy, you are a person with narcolepsy.

Good luck. I hope the tests go well. Please consider updating us once you have the tests and get your diagnosis. Please know that you are in our thoughts.

#4 Marcianna

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Posted 09 October 2008 - 10:41 PM

I am about to go to my second sleep study uh.... soon.... hmmm better look it up!

Anyway my first one not only did they attach electrodes to my head but to my chest and arms and legs as well. They were checking out all sorts of thing, like Restless leg syndrome (which I have) and sleep apnea (dont have? this is the reason for the second study)

I highly recommend that if you are on any kind of meds you dont take them. they can and will effect the outcome of your study. Check with your doctors about this.

I was lucky enough (if you can call it that) to have hallucinated during my study also... they were very pleased about it. although I did not have any cataplectic attacks at the time. This next time around, I plan on taking a friend of mine who almost always accidently says something that gets me on the floor. In 8 years I have only had 3 medical professionals see me do it and they were all off duty and didn't want to record the event for me officially. how annoying.

Since you are going to be there awhile be sure to bring books DVD's and other things to do while your there. The place I went was incredibly boring.

When it is all over, the findings can be very difficult to understand. Dont be afraid to ask questions. I literally said:
"well that is all well and great, but could you dumb it down for me now? I have no idea what you just said!"

good luck with your sleep study! I would really like to hear how it went when it is over. If you have questions, let us know we can try to help if things need more explaining. But don't be afraid of your doctors, ASK ASK ASK!!!! It's what they get paid for!!!!

#5 Andrea Egan

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Posted 10 October 2008 - 04:21 AM

Here is the low-down on all of that mysterious polysomnographic equipment.

6 electrodes on scalp--2 in back of head, 2 above ears, 2 in hairline above temples (for EEG activity, seizure diagnosis, and sleep staging)
2 electrodes behind ears (reference electrodes for EEG to reduce unwanted brain activity artifact)
2 electrodes on forehead (ground and reference for all non-EEG electrodes)
2 electrodes on outside of eyes for eye movement (to determine when you go into REM sleep)
2 electrodes on chin or cheeks (to determine muscle tension--teeth grinding--and also when you go into REM)
2 belts that go across your chest and abdomen (for respiratory effort in diagnosing sleep apnea)
2 EKG leads on both shoulders under collarbone or sometimes one on shoulder and one on opposite side level with sternum (for heart rate and rhythm problems during sleep)
4 leg leads--2 on front of both shins (for leg movement like restless legs syndrome or periodic limb movement disorder)
1 microphone on neck (for snore)
1 nasal cannula like an oxygen cannula that goes under nose, behind both ears, and under chin (to measure airflow in diagnosing sleep apnea)
1 temperature sensor (sometimes included with the nasal cannula for respiratory efforts for mouth-breathing)
1 pulse oximeter (for pulse rate and oxygen saturation to help diagnose sleep apnea)

All of these wires are attached to a "jackbox" that goes around your neck, making it easy to move around and use the restroom when you're not in bed. When you go to bed, a cord is plugged into the jackbox that sends the information to the computers where the data is observed by the technologist (who is responsible for making the patient comfortable and also for setting up and maintaining the integrity of the sleep study). Often, there is a camera and microphone in the room that helps the technologist record body positions during sleep and also make note of any snoring, seizure-like activity, or abnormal behavior during sleep (acting out dreams, sleep talking, sleep walking). The microphone also allows you to maintain communication with the technologist during the night should you need to get up to use the bathroom at night--remember, you are "connected" to the computer, so the technologist will need to "unhook" you before you can get up at night. All the data is saved for future viewing by a specialist that comes in during the day to "score" it--determine sleep stages in every 30-second epoch, marking any respiratory events like apneas (total lack of breathing) or hypopneas (shallow breathing that causes your oxygen saturation to drop), arousals (disturbances in EEG activity) or awakenings, leg movement, EKG abnormalities, etc. so the doctor can make a diagnosis.

#6 Mike M

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Posted 10 October 2008 - 09:29 PM

I LOVE that I know sleep techs with narcolepsy. That is so cool. Andrea, I had hoped you would see this thread. Thank you for the awesome info!

#7 m00se

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Posted 11 October 2008 - 11:07 AM

QUOTE (Xvicki-woodX @ Oct 5 2008, 05:54 PM) <{POST_SNAPBACK}>
hi ive been recently been diagnosed with cataplexy on its own. apparently its really rare. im goin to fox lane sleep clinic in londons St Thomas. what do they do at a sleep clinic? i havent been told anything and would like to no what they are goin to do. has any one been 2 the same clinic that im going to? i would be greatfull of any advice thanks x0x


hahahah! yea - been there a few times! biggrin.gif
Last time I was told off for making a nusience of myself with another volunteer: All wired up, pulling faces at the passers by, nipping off to the ward nextdoor and the canteen where you will get many questions from other patients but the staff are kind of used to it by now. They're very friendly in there. You'll love it, honest.

#8 Xvicki-woodX

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Posted 12 October 2008 - 07:26 AM

Thanks 4 all that info its helped me understand things much better and am not as scared now! will let u know how it all goes when i have been! thanks again x0x