” To Sleep perchance to dream“- William Shakespeare, Hamlet
Equipment not working…..wondering from room to room ..finally getting started at close to 2 a.m.
Have to repeat!!!what?!
Fortunately, second time around a whole lot better…but not happy had to redo….
Sleep study! Wow what an ordeal?
I have ordered over a hundred sleep studies in my career as a professional and I had an EEG done as resident as part of my training ( so I KNOW how messy and sticky your hair can get especially if you have as much hair as I do!).
But, I never had to undergo a sleep study myself… of course I was aware of what it entailed….
One thing is to have KNOWLEDGE of something another is to EXPERIENCE it yourself….it was not until the time I volunteered for a research study in Parkinson’s whose primary objective is understanding sleep disorders in said disease- Parkinson’s.
but I was ready so, I thought…
As I was preparing, I remembered that you must avoid all sleeping aids including antiaxiolytic medications known as benzodiazepines which include meds like Klonopin ( clonazepam), Valium ( diazepam ), Xanax ( alprazolam ) etc. for at least 3 days prior to study better if its a week. Because the effect of these meds can change the findings of the brain recording (EEG). Also, avoid caffeinated drinks and alcohol for at least 24 hours prior to study. These too can alter the brain waves…
The doctors and techs will usually give you a very comprehensive list of DO’s & Don’ts!
Take it seriously to obtain best results!
If you can, avoid taking a nap the day of the sleep test so you can sleep …because remember you will have wires everywhere on your face, head, arms, legs, breathing monitor, oxygen tube, heart monitor and these compounded with fact you are in strange place being recorded can be very anxious provoking! Just simply go about your night time routine! Bring a book to read or watch T.V. until they tell you is time to turn off lights -usually around 9 p.m.
Make sure you bring your favorite comfortable sleep ware and pillow if you like and a loved for moral support if you must!. He or she can accompany you and sleep in next room over.
If you are one that has to frequent the bathroom during night time avoid any beverages after 5 p.m. and also ask for a room with own private bathroom so if you DO have to Go it will be less disruptive to you and others..since each time you have to go you MUSt be disconnected and recording stopped!
This, unfortunately, is what happened to me the first go around….
After spending an hour getting hooked up…finally allowed to return to room but since I had been at doctor all day with study I had been off meds most of the day so by time I took before bed I had severe nausea and could not lay down without feeling like I was about to throw up – I had forgotten my nausea pill! ( Make sure YOU BRING ALL your meds with you even if you don’t usually take in the evening just in case!
Finally, stomach settling already past my bed time per their protocol. I went to bathroom before bed got set up which took at least 30 minutes. Then, lo and behold not even a couple of hours later, I had to go again…I held as long as I could because I knew I would have to be unplugged…but difficult to sleep when you have an urge…so, I gave in…well, little did I know that this action set a whole wreck ball in motion!
Once, I returned to my bed the switching back on was no longer a simple matter….the sleep techs began the process of connecting me but there seem to be a malfunction in the equipment! Oh, NO!
They stripped me of all belts etc. and put NEW oNEs in the dark with a small flash light trying to not arouse me! But connections were determined to cause problems- no input…of course with each attempt I kept getting more and more awake …initially they tried to do in the dark as to not wake or rid of my sleepiness but that only caused more fumbling and frustration on the part of techs. With each failed attempt, I could only chuckle inside knowing full well this was the Karma of being a neurologist! But secretly prayed they could make things work for the sake of their own jobs! Knowing their frustration was mounting, I gave permission for them to turn lights on to try to expedite process and lessen irritation hoping to sleep soon and NOT HAVE TO RETURN – alas it was not to be…they then switched EEG board still no input!
Next, I was moved to another suite with different bed…still interference!
2 a.m. nearly on to third room ( felt something like ‘ Goldie Locks) finally Eureka things were working …I dared not move a muscle to avoid irritating the forces that be and Prayed earnestly that I would NOT HAVE To POTTY AGAIN!
I was up by 5am when recording is scheduled to stop but obviously I spent more than half the night playing musical beds…so I would have inconclusive data and therefore had to repeat the blessed ordeal!….
Thus, You can imagine my great trepidation of having to repeat the whole ordeal.
I was very reluctant to repeat because what if they actually found something…I MIGHT have to COME BACK a THIRD time!
But, then I laughed and thought about Karma, AGAIN!.. They say that doctors make the worst patients and have the most complications …well this seemed to be holding true to dogma. Could not argue with it!
But, before you get all panicked by my story and refuse to ever have one done…REMEMBER, I am a rare case..
and I am used to having things happen …as I said Doctor’s Karma so I am used to it…
this rarely occurs but you should nevertheless be prepared for possible delays and mild inconveniences as to avoid increase of blood pressure, anxiety or getting overly upset! take deep breaths and laugh it off if similar things should ever happen to you….
The second (sleep study) go around…
guess the techs knew I might be ‘ difficult’ so I was given a suite with my own bathroom and this time the EEG leads ( head wires) were mounted on track that could be easily disconnected as a whole and carry with me without having to manually switch each individual lead to another track.
I was pleased to see that they had learned from situation.
Life was so much sweeter! Thank goodness because try as I might to not have to go to bathroom in middle of night, I still had to be unplugged at least once…..
My advice:
Take your other medications as you would normally ..
Maintain a sleep diary before you come to study and fill out questionnaire of activities, sleepiness, medications, medical issues and night time problems like cramps in legs, frequent urination, trouble staying awake or asleep…etc.
Do Not schedule other activities or doctors appointments same day…may get you off your game being overly tired or stressed!
Also bring warm clothes or blanket if you are cold natured because they don’t want leads falling so they keep rooms very cold or fans blowing!
Tell them if you need assistance with dressing, bathing, going to restroom, or difficulty turning in bed or have increase risk for falling…to avoid any mishaps especially since you will be covered in wires…
Also if you are allergic to adhesive let them know…although I believe most centers use baby adhesive so not to cause irritation.
Also, most centers will give you baby shampoo to wash your hair off from all the goo placed for brain wave recording…but just incase bring some BABY Shampoo ( it is the best thing to get that jell out of your hair even when you have bunches of hair like me!)
If someone does not go with you, consider having someone drop you off and pick you up next morning in case you do not sleep well and are sleep deprived …would not want you getting into an accident!
I, also, highly recommend that every Parkinson’s patients talks to their doctor about getting a sleep study because so many of us suffer from sleep disorders caused by Parkinson’s disease. This can be an intrinsic part just like tremors or stiffness but is a non-motor abnormality. Treating sleep disorders is vital because they can lead to increase memory loss, fatigue, pain, increase dizziness, headaches, high blood pressure and falls if not diagnosed properly or in a timely matter. Hence, need for sleep monitoring!
After all sleep disorders is one of the most common non motor symptoms in Parkinson which can cause severe disruptions in a persons life but fortunately can also be treated with good success most of the time if problem is adequately and promptly diagnosed.
Sleep is even more crucial than we thought since according to a recent new study published in Science …it appears that sleeps helps the brain eliminate waste which is a critical function in maintaining metabolic homeostasis ( equilibrium by getting rid of trash like beta amyloid proteins that accumulate during wakeful hours and are believed to be the cause for many NEURODEGANERATIVE diseases like Parkinson’s and Alzheimer’s ).
Good luck and happy dreams!
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To learn more about the function of sleep in eliminating waste from brain go to-
Xie L, et al. ” Sleep drives metabolite clearance from the adult brain.” Science 2013; 342:373-377.
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com
defeatparkinsons 