Author Topic: sleep  (Read 25350 times)

dianneh1

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sleep
« on: September 25, 2005, 09:07:59 pm »
Is any one else not sleeping at night?  Have not slept more than 3 to 4 hours at a time since my surgery on september 14, 2005.  just wondering

thanks
Dianne
Dr. Rossenwausser and Dr. Wilcox
Jefferson University Hospital
Philadelphia, PA
2.5cm AN

cookiesecond

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Re: sleep
« Reply #1 on: September 26, 2005, 01:06:57 am »
Dianne,
I can relate. I'm not sleeping either but I don't know why. I had surgery 8-2-05.
Lynn

becknell

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Re: sleep
« Reply #2 on: September 26, 2005, 07:28:59 am »
The steroids make it difficult to sleep, and they take a while to get our of your system, so the more recent your surgery, the greater the likelihood that they may be a factor. My husband had a horrible time sleeping the first few weeks after his surgery, although that has gotten better. Also, I recall reading something somewhere - and I can't remember where any longer - about the role of the brain or the brainstem in sleep patterns and that brain surgery may affect that. Maybe someone else here has more details on that. If it's really bothering you, you might want to ask your doctor if he/she can give you something to help you sleep. At my request, my doctor prescribed something for me to help me sleep during the whole trauma and emotional ordeal of my husband's surgery and it was a total lifesaver!!! Jennifer

Kathleen_Mc

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Re: sleep
« Reply #3 on: September 26, 2005, 05:09:52 pm »
Dianne: I too am having trouble sleeping, my surgery was Sept. 6th (or whatever that Tues. was). My doctor gave me some sleeping pills and they do certainly help but I don't want to take them all the time because they can be highly addicting. I find I could sleep for hours in an afternnon nap but not at night....even when I force myself to stay up all day I won't sleep more than 6 hours total in broken sleep at night. I had this problem too the first time I had surgery (yes this is the second time, tumor regrew!) but at that time I can remember I couldn't get to sleep because I was convinced I would die....my first surgery was very traumatic, I was only given 50% chance of surviving the surgery and I was awake and on life support for a couple of days.
Some suggestions: warm milk, warm bath, try sleeping somewhere other than your bed (couch, spare room), if you can't sleep get up briefly and then go back, lie quietly so at least your body rests.
I know how frustrating this is...it doesn't make sense that you're so tired you can't stay awake and then once in bed you can't sleep.
I can't remember how long this lasted for the first time...then again as soon as I return to work I have disrupted sleeping patterns anyways (shift worker).
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Rex

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Re: sleep
« Reply #4 on: September 28, 2005, 02:12:34 pm »
I had Translab surgery on 8/4/04 for a 3.1cm AN.  I had trouble sleeping for 4-6 weeks after surgery because of the steroids.  I was only sleeping 2-3 hrs per night.  After I started taking Ambien it went up to 4 hrs per night, but another benefit was that it cut out the tossing and turning and I would fall asleep within 10-15 minutes of taking it.   After I finished the steroids, it took a couple weeks, but my sleep pattern graduallly shifted back to normal.   My doctor told me ambien was not addictive and I had no problems stopping cold turkey.

One last note about the steroids, they made me hungry all the time and I was eating 6 meals a day when I was taking them.


dianneh1

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Re: sleep
« Reply #5 on: September 28, 2005, 05:54:50 pm »
hey all

thanks for responding, I thought I was crazy.  I can nap in the day but at night it is like that switch goes on "time to stay up".  I am also eating and eating and eating,  It is out of control.  I can not belive how much I am eating,  all this from some little old steroid. I had my surgery on 9-14 and I feel pretty good but I just wish I could do more to burn all the eztra food off and get tired enough to sleep at night.  I am just really happy that the surgery is over and went well.  I the dang this is out and now hopefully I can just move on to whatever normal can be.  I hope that everyone else is doing as well as I am and I will keep you all in my thoughts for a good recovery. 

Also please keep me updated on any changes you guys may have, it is interesting to me how our bodies can heal with a lot of the same outcomes

Thanks again

Dianne
Dr. Rossenwausser and Dr. Wilcox
Jefferson University Hospital
Philadelphia, PA
2.5cm AN

tryston

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Re: sleep
« Reply #6 on: September 28, 2006, 07:46:11 am »
Hi Dianne,

I am 2 weeks out and having sleeping issues too. I also think it's the steroids. I am experiencing little improvements though. Up until a few days ago, I was just NOT sleeping without medication. I have since had 3 short but glorious, natural naps. I had to experient with the medication too and while I'm not crazy about what I've ended up with - it is working.  I seem to sleep naturally for about 2 hours then wake up. I take a 5mg Ambien that seems to put me to sleep and an Ambien CR which will keep me asleep for exactly 4 hours for some reason.  The Ambien does not make groggy the day after, the Lunesta did. Strangely enough, even before this new little cycle I was getting REST somehow, I didn't feel particularly sleep deprived. My schedule is really weird. I am up and feeling great at 4am and get generally tired around Noon. I'm extremely fortunate not to have to be working right now, so the schedule really isn't bothersome. This whole experiencing is so fascinating...I hope you can get a little cycle going for yourself! Best wishes!
37 yrs old
8 - 10mm AN in left IAC removed 9/12/06
Middle Fossa
Drs. Brackmann & Hitselberger, HEC

Battyp

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Re: sleep
« Reply #7 on: October 01, 2006, 08:09:37 pm »
Oh boy...I'm not alone on this...we all sound very similar.  I can sleep hard during the afternoon, but at night I'm exhausted, lay down and my brain will not shut down it runs full force.  I've resulted to taking xanax at night as the ambien just wasnt' allowing more than 4 hours of sleep.  I just got some ambien cr and yes they say it's not addicting but you can develop a dependency on it.  Melatonin is a natural sleep aid that works, wine, I had my doctor tell me to get up at 6 am, walk and no more naps..I just laughed at him and said doc give me the cr  LOL  I have found that with tony's advice I'm getting better with the sleep thing some.  I watch how long I lay down during the day, instead of sleeping hard for 3 hours I try to limit myself to an hour nap to recharge and reset my vestibular.  I still wake up a lot during the night but am able to generally fall asleep without the aid of any meds.  I dont' do the wine trick due to the meds I'm on for depression.  I'm so tired of being tired!

Boppie

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Re: sleep
« Reply #8 on: October 01, 2006, 11:26:39 pm »
I think most of you are not retired, but I want to say not working or not having to go to work is really confusiing for your body and inner clock. 

So, you might be experiencing problems of sleeping after steriod use but also because you are not doing the work/eat/sleep pattern right now.  Your routine is all out of whack.

As for sleeping in a lounge chair in a quiet room, both my husband and I discovered that this is an effective way to handle temporary sleep problems.  Fighting the pillow and the mattress are not necessarily the best way to rest. 

I agree that naps should be short if you have any hope of sleeping the night.

Kathleen_Mc

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Re: sleep
« Reply #9 on: October 02, 2006, 07:03:43 am »
Battyprincess: Beware of using Melatonin! I actually had a sleep study done this summer and saw a sleep specialist.......I have a sleep disorder, likely caused by working nights for so many years. He mentioned that Melatonin is an option for this disorder but that this is contraindicated in people who have had brain surgery! (can't remember if you had "surgery" or radiation but the same may apply for the radiated population). Was this a treatment OK'd by your doctor?
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: sleep
« Reply #10 on: October 02, 2006, 10:26:40 am »
Thanks for the info..my doctor says to take benadryl which totally baffles me.  Yes, it will put you to sleep but it's like taking a medicine you don't need.  Haven't checked with surgeon. 

Gennysmom

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Re: sleep
« Reply #11 on: October 02, 2006, 12:16:22 pm »
I don't know if there's any counterindications for this, but Valerian is the herbal med for helping with sleep.  You can find it in Celestial Seasonings Sleepytime Extra tea...works pretty good, but for the most part I go to sleep and within a few minutes I'm out like a rock.  I'm lucky to not have any problems now that I'm off the steroids/pain meds. 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Jim Scott

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Re: sleep
« Reply #12 on: October 02, 2006, 03:42:08 pm »
dianneh1:

I'm now 4 months out from retrosigmoid AN surgery (6/7/06) and while I had one night where I woke up a few hours earlier than usual (while still on the steroids) my sleep has been fairly regular since then.  I'm retired but I always go to bed and get up at approximately the same times.  I'm fairly active and do not take naps, although I often doze while watching TV in the evening, something I did before the surgery, so I see no real connection.   We are all different of course and while I'm grateful that I do not have sleep problems I tend to think that yours may well be coming from the steroids....or stress.  I had terrible hiccups (that actually kept me awake) while in the hospital, still in the SICU, but they disappeared within a week of my coming home.  I asked my wife's gastroenterologist about this and he said the hiccups were probably related to stress over the finding of the AN and the resulting surgery.  Once the problem was resolved, the stress subsided and the hiccups disappeared.  He didn't even charge me a fee for the 'diagnosis'!   ;)
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kathleen_Mc

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Re: sleep
« Reply #13 on: October 02, 2006, 06:48:14 pm »
batty: Benadryl is often ordered by our doctor's at the hospital to help people sleep, especially if they are "small" in body size. I hope it works for you.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: sleep
« Reply #14 on: October 04, 2006, 07:21:35 pm »
Oh I'm def. not small in body size  LOL