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virginiasydney
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| Joined: | Sat Apr 11th, 2009 |
| Location: | Sydney, Australia |
| Posts: | 37 |
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Posted: Tue Jun 23rd, 2009 04:56 |
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Dear All,
How have people managed insomnia ?
I have had a problem falling asleep for years now. I believe it's a neuro symptom. I've tried everything and I don't believe it's related to life events etc. When I first started taking Benicar it became worse, even though I was taking sleep medication.
Anyone have any ideas or something that's worked ?
Thanks in advance.
Virginia
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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cathys2007
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| Joined: | Tue Jun 17th, 2008 |
| Location: | Connecticut USA |
| Posts: | 24 |
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Posted: Wed Jun 24th, 2009 17:23 |
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Hi Virginia,
I have narcolepsy...well, I was diagnosed with narcolepsy. I've always had trouble sleeping. I could never tolerate sleep medication, so, the only medication that I would take to help with sleep was an occasional xanax. My insomnia continued for about the first 3 months of MP. Then it changed overnight! I was experiencing the best sleep I ever had in my life! Since then, I have had a little difficulty occasionally, but never as bad as prior to MP.
Cathy 
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08/PH2 Oct08
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alycia2
Member
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Posted: Wed Jun 24th, 2009 18:39 |
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hi virginia,
i too had insomnia for many years...at least the last 10 years...usually able to fall asleep but then wake soon after or the magic hour of 3 am...toss and turn the rest of the night...night after night after night...i know it's because of the th1..it correlates to the time when i had the first wave of heavy muscle fatigue, migraines, painful joints, depression and anxiety...over the years, i've taken ambien...tried other things as well...soon after the mp, i started to sleep..it was like a miracle...i just woke up one day and it was morning..i really couldn't believe it..when i started the mp, i stopped the ambien...i got off all the meds i was on except tramadol...
since that time, i have had a bout with it again but it resolved after a few nights...ocassionally, i have problems and when i do, i take a 2 mg. valium and a benicar..half or whole depending on what time it is and i am able to go right to sleep..besides not having all the awful pain...being able to sleep again is one of the greatest gifts i've received from doing the mp...it's luxurious!! i just bet that one of these nights...as your body settles down, and your hormones regulate, you will wake up one day and it will be morning and you can lay there and just smile..you've only been on the mp since april...give it a little time...
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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eClaire
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| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 377 |
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Posted: Thu Jun 25th, 2009 02:24 |
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Warning: Not for the faint of heart.
I've had insomnia since birth. I remember days within weeks where I got 6 to 8 hours sleep, but it was NEVER consistent my whole life. Also, sleep meds have never helped, as I tended to have the reverse reaction to meds. (For example, valium or benedryl would help me sleep, but then I couldn't take any meds that are supposed to make one sleepy for about two to three weeks or I'd end up not sleeping at all and feeling hyped up and strung out.) So I knew I was possibly in for it when I started the MP.
I went through months of barely sleeping with high anxiety levels. I kept sane by listening to calming talk radio on NPR (E.g., This American Life programs, which are archived). When I started sleeping again, it was typically in split shifts. I'd sleep for an hour or two or four and then be awake for 2 to 8 hours and sleep another two to four. And whatever pattern would form would shift until I had seen it clear around the clock. Mostly, I never slept at night and if I fell asleep before 2am that would be all the sleep I would get for the next 24 hours.
After about 8 months, I slept like a normal person for...3 weeks and then it was back to more of the same. Nothing had changed in my MP meds. Just fabulous sleep (sleep like I had never known in my lifetime...okay, I had one night like that once and I finally understood the phrase "refreshing sleep") and then back to no sleep.
After 21 months I was fit to be tied. And my doctor prescribed Temazepam. I slept 11 to 13 hours during the day (still unable to go to sleep before 2am). That worked for 45 days and then nada.
All the while, I rested--in the dark, eyes shut for at least 8 hours and when I was up, I was still resting, reclining in a recliner. I took dark breaks whenever I needed them, and I avoided exposure to sunlight.
Then, I decided I was going to go back to Benicar alone and add Mino at a tolerable level and just sit there. (I made this decision before the new Phase 1 guidelines came out only to find out that I was right in line with them by making this decision.)
It took about three months, but I am now sleeping through the night--actually going to sleep before 2am and being able to take my 2am meds and go back to sleep. I am now getting on a regular basis 5.5 to 7.5 hours of sleep with about one night each week getting about 9 hours. I can also tolerate a lot more light without it interfering with my sleep.
I am still unable to nap without it causing my sleep to split in the middle of the night (or to have a 24 hour period where all I get is a couple of hours of sleep), but by sticking with this dose I am now creating a new baseline. One that will give me a new level of what I consider intolerable insomnia on the MP.
Also, I am finally able to take up to two or three valium during the week if I needed to without it gearing me up. That to me is one sign that the MP is working. It's amazing to be able to take valium twice in a week and not get hyper.
So the moral of my tale is that I have found that I need to go very slowly so as to have tolerable IP when it comes to insomnia. Perhaps there would have been no way to avoid the early out of control insomnia (even if the new guidelines had been in place then).
And I'd like to say that you can still improve while doing your best to deal with the insomnia.
Another friend of mine on the MP uses Xyrem and she is getting better while also getting a good night's sleep. My insurance would not pay for Xyrem (it is outrageously expensive and one has to have sleep studies to qualify for it), and I would have had to apply for its use on a financial need basis; however, my name is on all of my mother's investments and I did not want to have to justify my lack of funds while my name was associated with an amount of money that would have made me ineligible. (I am just so tired of struggling with red tape that I preferred to just do what I could without taking this route.)
So that is my story. It hasn't been pretty, but I began sleeping more like a normal person on about the 28th or 29th month on the MP. That three week period after 8 months gave me a taste of what my sleep life will be someday. That helps me keep my nose to the grindstone while trying to make the MP work for me.
ClaireLast edited on Thu Jun 25th, 2009 02:51 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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paulalbert
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| Joined: | Fri Oct 26th, 2007 |
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| Posts: | 99 |
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Posted: Mon Jun 29th, 2009 20:07 |
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In case you haven't seen this:
http://mpkb.mp-dev.com/doku.php/home:symptoms:mental:sleep
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virginiasydney
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| Joined: | Sat Apr 11th, 2009 |
| Location: | Sydney, Australia |
| Posts: | 37 |
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Posted: Wed Jul 1st, 2009 07:41 |
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| Thank you
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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virginiasydney
Member
| Joined: | Sat Apr 11th, 2009 |
| Location: | Sydney, Australia |
| Posts: | 37 |
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Posted: Wed Jul 1st, 2009 07:44 |
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Thanks so much for telling me your story - and I'm so glad to hear you're getting some good sleep now !
all the best
Virginia
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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