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time for a winge!!!

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I mentioned in an early post about being on guard even though feeling well because cfs can turn around and bite ya on the bum. Well its biting me on the bum, im awake at 4am and the last 2 hours of that were restless, my legs are aching, i bloody hate sleep problems, the last few nights its been getting to me.hmm i see my doc today, man i need some good drugs to get me to sleep, if i could fix that i would be laughing. Actually im sick of try to find a pill that works, they all work the first 2 times u use them but then thats it. its the ups and downs of this bloody thing that gives me the sh-ts. Well i will sit in front of the tv watching the australian open tennis like a grumpy old grizzly bear today :eek:

cheers!!!
 

alice1

Senior Member
Messages
457
Location
Toronto
How was the game and did your doc give you anything?
Do you just get used to them that quickly?? I've been taking a med called Restoril which I've been on for 24 years.What I like about them is that they leave your body in 4 hours so you don't have groggy head in the a.m.
I have finally hit my tolerence to them so I'm on the look out.I may add valerium drops to see if that helps.
good luck!!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
benzo wise i rotate between valium and zopiclone and use lyrica every night and may add baclofen or antihistamine and melatonin. I was having a couple of benzo free night a week where i would use seroquel or doxepin or mirtazipine but of late they have been giving me alot of body aches and stiffenss that last the whole next day. They put me to sleep well but the last few hours are really restless and then just wake up feeling achy all over, so i have stopped taking them and just using the valium and zopiclone, so i think doing this has increased my tolerance to benzo's. I see doc today so have a few ideas up my sleeve. Trazodone which isnt available in australia but i can get of the net is suppose to be restless leg friendly so will talk to him about that and maybe swap valium for klonopin and zopiclone for zolpidem and see what other ideas he has.
 

sleepy237

Senior Member
Messages
246
Location
Hell
:mask:The ups and downs give me exact same thing!! I totally relate there. Are you napping a lot through the day heaps? I know that's when my insomnia starts after I have been in a period of utter whacked out fatigue slleeping anytime all the time not a sleep problem more like an I cant stay awake one. You are on all the meds I am on and more so I can't think of anything to suggest. I see there is mention of xyrem being a possibility for cfs sleep issues. But here in the UK, I knw I'd get the crazy look from the doctr if I mentioned that. He already refused me Baclofen claiming it was too toxic. I'd hate to have that particular doc as a carer cos im sure he would be reluctant to give me an aspirin LOL. Having my whine below your whine. Hope your sleep is better tonight and you enjoyed the game take care ~Sleepy:hug:
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi sleepy, no napping for me, i wish i could, my brain just sizzles away. As for baclofen, i get my supply off the net really cheap 4rx.com, normally baclofen does increase sleep quality but does nothing on its own. I dont believe its toxic as people with cerebal palsy use baclofen pumps for years to control muscle spasms, what we use it for is small in comparison. Some docs dribble crap when they dont know what they are on about, instead of just saying they dont know and maybe researching it, lol. zopiclone has been a great sleep med but its losing its effect which is a bugger, so im hoping having a break from it will help it work again later on.
Im thinking im might need to reset my brain by getting my old records out and having a few medicinal ales and a sing along with me , myself and I, lol.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
ok, got my results back from doc and happy with that. Told him about my sleep issue and tolerance to current meds, he was very negative about klonopin, but gave me a script for mogadon to use for a short while and then go back to valium again, also switched to stilnox/ambien/zolpidem which i used years ago with good results but it pooped out and have tried it several times since with no results but last night i took 2 with some baclofen and slept like a log, yippie, im glad it worked. So i will use the zolpidem for a few months then i will switch back to zopiclone and hopefully have lost the tolerance for it and it starts working again. If i can get all my hormones within all the ranges and lymphocytes improve even more i may try and taper off the sleep meds altogether, it would be nice to be able to sleep drug free.

cheers!!!
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
:sofa: Yeah, it really sucks sometimes. I hope the new med works, that you sleep well and wake up refreshed. Hang in there. Whinge when you need to, we understand. :hug:
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Trazodone which isnt available in australia but i can get of the net is suppose to be restless leg friendly so will talk to him about that and maybe swap valium for klonopin and zopiclone for zolpidem and see what other ideas he has.

Many CFS/ME specialists recommended Klonopin for some of the CFS/ME issues (many say one side of our nervous system is over active, and this drug helps bring it more into balance).

Thou I have a sensitivity to many drugs (I cant take seroquel without it really knocking me about), Klonopin known as Rivotril in Australia was helpful for a couple of my CFS/ME symptoms, also it is a drug sometimes used to treat restless leg syndrome. I found that i only needed a very wee dose of it. (smaller then a normal dose of it).

Unfortunately thou I had to stop the Klonopin as it was contraindicated with a non CFS/ME condition I have and was affecting that.
......

I hope your new drugs work for you.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
would like to try klonopin as have heard so many say its helped their sleep alot but my doc against it for some reason. I have another doc who has given me rohypnol which is suppose to be the strongest benzo, it was ok but i dont think it was as strong as zopiclone or zolpidem. can anyone compare rohypnol to klonopin??

cheers!!!
 

LazyLizard

11yrs with ME
Messages
32
Location
Melbourne
Hi Heaps!
I just responded on the insomnia thread and do it again here because it's my top topic
this morning 5am. I am on a roll...
I just want to say that I can relate to the winging about being up at night.
I gotten so used to getting up between 1-2am after not fallin asleep for an hour or so.

You watch the tennis and I tell you I know every bloody commercial night program
by heart. Let's see...
There's Proactive Solution the miracle skin treatment. There's Zumba which you can
dance even in a delivery truck, there's two types of steam cleaners at the moment,
both apparently save you from buying dozens of other cleaning tools and don't hurt
your back,
a juicer, the twister to shape your abs but there's plenty of other exercise and shape-up
gadgets. All really irresistable and better than the other. I really need those six-pack abs!
I have also devoutly followed religious programmes through the night in a daze.

If you need any details of those programes come ask me I know them all by heart.

Cheers
LL
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
lol, lazylizard, i think with my insomnia i should have half a dozen docterate degrees with the amount of reading and research i have done because i cant sleep.

cheers!!!
 

Crappy

Senior Member
Messages
113
Location
TX
heapsreal, I feel your pain. What's a Winge?

Thanks for the humor LazyLizard. So many products we can't live without, so little money.

Crap
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
sigh!!!!!! sleep, im whinging again. 2 nights ago i took 2 stilnox/ambien and slept like a baby, 1 night ago took 2 mogadon and had a crap sleep, so last night was stilnox night, i was feeling tired by the end of the day, brain starting to frizzle, wanted to sit up and watch the tennis but thought no i need some sleep, so i took 2 stilnox and got nothing, i saw the end of the tennis, bugger, i should have been asleep, so i took a third stilnox and lied in bed for ages looking at the ceiling in the dark, sort of day dreaming i guess for ages, then eventually i must have fallen asleep, i got between 3-4 hours sleep. Everything to do with cfs is going well except sleep, if i can get a good nights sleep i feel almost normal, but when i dont i just feel like crap. My doc the other day said something about sleep apnea, its not cheap getting a sleep study and the one i had a few years ago, all they were interested in was if u had sleep apnea not insomnia. i thought to myself i dont have sleep apnea because u have to fall asleep to have sleep apnea. I have random thoughts of , am i addicted to sleeping tablets because its not going to last as they arent helping me sleep, so no point in taking them. SHould i just run the gauntlet and not take anything for sleep for a few days and see what happens. Man !! i cant win, i reckon when i sort the sleep out, i will probably fall over and break a leg or something. Shit! i hate this. ITs getting really close to a beer and records night for me.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
i got some sleep finally , yeah. I took my fibromyalgia inducing seroquel, lol and got 6 hours good deep sleep, so slept from 10pm till 4am and i feel alot better. I was hesitant to take the seroquel as it can cause alot of all over body aches for me but i needed some sleep too, i took my lyrica and some baclofen with it which are muscle relaxers, to try and prevent and muscle aches. Sometimes i find a seroquel sleep helps reset the brain and makes it easier to sleep for a while, still medicated but easier.

Im going to have the next 2 days off pregnenolone and see if it makes a difference to my sleep although the first few weeks it didnt affect my sleep, im thinking of doing a cortisol saliva test, 6am and 6pm test to see if pregnenolone maybe rasing my cortisol levels at night, maybe need to use preg at night and give it time to kick in, in the morning or just take a day off every so often, but not sure if its the problem as it could be just one of those cycles i go through. Pregnenolone has given me more energy or feel more normal, i dont feel energized like stimulant type energized, just able to function. I think thats why i dont believe its the pregnenolone, i hope not as it as been helpful.

cheers!!!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I took a day off the pregeneolone and back on it again and no difference in sleep, actually sleeping ok again, even using meds like avanza and seroquel for sleep arent causing aches and pains. I think they only worsen aches and pains when i already have them, pain that is. I wonder if its something else reactivating in me that causes these funky sleep episodes with the aches and pains, theres nothing in particular i can put it down to other then they happen every so often for a few days and drive me up the wall. Maybe its like a mini crash. In the beginning of my cfs journey(i can think of a few other words but wont use them) it would go in cycles of pain and insomnia followed by a crash of 2-3 days asleep in bed and then slowly recover and then happen again until i was crap all the time. i think it might be the same except im not crashing in bed for 2-3 days like stunned mullet. Maybe the AVs are minimizing the crash. Im glad im through another insomnia episode.

cheers!!!