Hi, If you've read alot of my threads u probably know insomnia is one on my worst symptoms. I have taken everything and it seems i build up a tolerance to sleep meds quite quickly. Im at a stage where nothing is working any more and im thinking of doing a slow taper off sleep meds with valium as it has a longer half life and is said to be easier to come off.
I just dont know if i have an addiction or tolerence to sleep meds or is it just cfs causing my dysfunctional sleep or lack of. Has anyone ever tapered of their sleep meds and regained there normal sleep ability or is this dysfunctional sleep just where cfs is hitting me hardest. My current dose of sleep meds i dont think is high, valium at 10mg, mogadon at 10mg, imovane between 7.5 and 15mg, i dont take these meds all at once but juggle bewteen them with some nights being benzo free and using antihistamines , sedating antidepressants or seroquel, but basically cant sleep without taking something. example the other night i actual felt sleepy tired and went to bed at 1030pm and woke up at 1130pm, one whole hour. I sat up for awhile, reading surfing the net etc and at 230am gave up and took 2 imovane to get some sleep. This was a good night because i actually fell asleep without any meds. Most nights i just cant sleep at all till i take something, i have even lost my ability to nap through the day even when feeling tired.
Its a strange feeling because i dont feel anxious or worry excessively about trying to sleep, actually my mind just wonders aimlessly thinking about nothing in general. Do others feel this way? Its now 2am here and ive had half hour of sleep and dont feel at all sleepy, i have to wake up at 530am to get ready for work and do a 10 hr shift, this is not uncommon for me. I f i could sleep normally my energy levels would be greatly improved. I have had a sleep study and all they seem interested in is sleep apnea, which they didnt find because i slept a total of 20min stage 2 sleep.
Thanks for listening to my rant, any advice appreciated.
I've been through a ton of sleep meds myself, and have had 3 sleep studies.
As you've learned the trouble with 99% of the 'sleep docs' is they are pulmonologists. Is they can't throw CPAP at it they don't have a clue. It's also hard to get good sleep study analysis done because 'insomnia (or in my case no slow wave sleep)' isn't considered a sleep disorder. After my most recent sleep study they tried to shuffle me off for CBT when no apnea showed up, they have no clue about sleep architecture in CFS/fibro patients. I would love to find a neurologist knowledgeable with sleep, our unique challenges and the meds, it would be ideal. The most knowledgeable doc I found on the subject is a psychiatrist. He is also interested in CFS cytokine research. If we can find a way to bridge me from my current regimen (rather complex) to Xyrem and if insurance will approve we'll give it a go.
Anyway I'm not sure I helped at all, but I'll add that I don't think sleep can resolve itself (without some other -as yet theoretical - intervention that provides global relief) to the point of being med free once it has become a problem to the degree we have it. There was one woman on the prohealth board a number of years ago who used Xyrem, got better and tapered it off and as far as I know recovered completely. Unfortunately she deleted all her posts. I doubt she had CFS or fibro. But fixing sleep would do me do so much good I would feel like a new man.
I was a light sleeper since my first brush with a virus in 1980 and it became a serious problem 10 years later and has only gotten worse since.
I can't recall if you've tried trazodone, but if not I'd suggest giving it a try. For me it helps with sleep and pain. Others might be gabapentin or Lyrica just @ bed. Gabapentin is much cheaper and typically has fewer side effects but tolerance was an issue for me.
Dr. Teitalbaum suggests low doses of multiple agents as the combinations help with sleep while reducing side effects. On that point we agree
If you haven't you might try talkaboutsleep.com. Lots of insomniacs there...
this has been one of my main issues as well way before i started taking ldn.i've been on restoril for 23 years and surprisingly i'm at 30mgs after all this time.sometimes i'll take an ativan an hour before to settle me down then take the sleeping pills.also with the restoril it's sweet so i started at a low dose with putting a few mgs under my tongue.might work for you.also a small toke of pot can help but be careful as i found if i smoked more that it would get my nervous system going rather than relaxing it.
best of luck
i'm with Otis, i don't think at this point people like us can sleep without meds. my sleep doc is a neurologist, but refused to discuss my fibro issues at at all. he seems ready to send me on my way since i'm sleeping better with Doxepin, but i'm experiencing hair loss & that won't do. plus i also take Lunesta, Sonota & an occasional Xanax.
i'm so much better when i sleep, if only i could find a sleep doc who understood about fibro / CFS issues!
Thanks for the replies guys, im not going crazy then, not alone,lol, Im amongst other crazies, lol. Ive tried all the drugs mention but xyrem. I do have seroquel up my sleeve which i use occassionally but like other meds it wont work 2 nights in a row but when it does its great. I am thinking of trying doxepin again, it worked well for a few months then pooped out but i didnt go over 50mg, so i might look into uping the dose and alternating it with seroquel while having a break from the benzos. As for the pot suggestion all it would do is want to make me eat and talk all night lol, same with beer.
Otis it would be nice to find a good neurologist that understood cfs/me and its sleep dysfunction. I think i might have a high amount of stimulating cytokines floating around,,my last blood test 4 weeks ago showed my lymphocytes have gone up again, ebv reactivating. I just cant believ i can develop tolerance to sleep meds so quickly when others can take the same meds and dosage for years, who knows???
I think cytokines are a key. When I'm PEMed I sleep very badly - my brain is buzzing as if I'm on some sort of speed. I could swallow doses of CNS dependants that could leave 3 people comatose for a week and not sleep - not that I've tried that amount, but I think you know the feeling. And as Drs. Light have shown lots of cytokines are active when PEMed.
There's a study there, I think. I think I'll contact my psychiatrist and see if he's seen any research that might connect these dots.
I also got wound up on pot back in the day, even the kind that would leave everyone else snoozing. Interesting. That was before I was terribly ill, although there were warning signs, and at least one virus lurking around.
Warm milk. Really. The tryptophans are activated by heat and within 20 minutes after drinking it, you are asleep.......
An evolutionary solution. Warm milk made babies sleepy so their fussing wouldn't alert nearby tigers or whatever. It helped keep baby and mother safe....
It is especially good for early am awakening when sleep medication wears off. Truge on down to the kitchen, boil 1 cup of milk. (two minutes in the microwave for those so inclined), drink it next to your bed, then climb back in. In twenty minutes, sleep guaranteed.... It really works...
not if you're intolerant to milk..lol...
sorry about the pot not working i totally understand.i'm seeing my head doc who is very sympathetic and ask him for other suggestions as well.
alone in not sleeping..you have many friends in that department...i'm so jealous of those who do sleep without any pills.i certainly haven't been able to.
yep no pot for me either always made me go zoom instead of calming me down.
can't tolerate alcohol either.
i consider myself "sober" & am a member of AA with 12 years of sobritey, tho i did have to break down & give in to the meds about 2 years ago. as long as i never take more than a doc prescribes, i still consider myself not abusing substances & in recovery from addiction.
i rang in sick for work at 530am for 7am start, went to sleep from 530-830, 3hrs whoopie doo. Theres no way i could have worked a 10hr shift today. Have a doc appointment this afternoon and going to get him to give me rest of the week off and talk some more about sleep meds i suppose.
Best of luck! I've been trying samples of Rozerem. It seems to help but it's expensive so I won't be able to continue. Don't know if it's available there but I think it works on the melatonin receptors which is unique, I believe.
No rozerem here in australia, have melatonin but not of much use to me. if i didnt have to earn a living i would just try go with the flow and sleep whenever i sleep. Problem is the world doesnt revolve around my sleep habits. Arrgghh the serenity, theres plenty of that at 3 in the morning except my brain feels like its frying, lol.
When I relapsed a couple of years ago, I had highly elevated cytokines, low NK function and reactivated viral titers to Epstein Barr and HHV-6. The effect of these immune markers resulted in sleep dysfunction among other symptoms. Ultimately I tried Xyrem (Klimas prescribed for me) and have had significant improvement. I have been on Xyrem for close to two years and am able to use it as needed at this point... there are certain nights or even weeks I don't take Xyrem at all and other nights or weeks where I take it. Even when I do take Xyrem, I take it once a night and am able to sleep though the night without any problems. It is highly effective and I would certainly recommend and suggest discussing with your doctor. If you have any questions, shoot me a message and I'll be happy to respond regarding.
Insomnia has always been a huge problem. Things that help or have helped are L-Serine. I take Klonopin every night and a heavy duty antidepressant called Remeron which puts me out. Remeron is aimed at sleep. I also take ativan sometimes. I know how hard insomnia is.
i hope you dont mind me pointing out the following to you. Getting onto a computer when you wake up in middle of the night, is something one shouldnt do. That will just keep the brain active.. wake one up even more and the light from the computer I think i've read interferes with the day/light.... night/dark cycle in which helps our bodies know when to sleep. You are confusing your body more.
The experts recommend those with CFS practice good sleep hygeine.. no computer or tv in the couple of hrs leading up to bed so our bodies can get more into the sleep state. Its better if one wakes up to go and get a drink of warm milik (that is if you can drink milk.) and head back to bed.
Ive also heard that ones body can get used to sleep pills to help it sleep.. and then hence one needs to retrain body to go off of them.
I have abnormal brain waves with the CFS.. abnormal EEGs in which my brain doesnt go into the right state when i shut my eyes and relax .. poor alpha, too much and too fast beta. This is a common problem in CFS and this issue also dont allow me to do things like meditate and would affect when Im trying to go to sleep.
finally got some sleep, a good 12 hours. Seroquel definately is a life saver for me, pity it doesnt work all the time, but it does get me out of that rut. If i havent used it in a few days and im at the point of exhaustion from no sleep, it knocks me out, brain has stopped frying for now, lol. I wish i new why different sleep meds dont work 2 days in a row. It would be nice to just sleep consistently.
Thanks for your tips tania about the computer/tv at night but what can u do at 3am when u cant sleep, ive tried just lying in bed for hours but didnt make any difference other then total boardem . I spoke to my doc about stopping sleeping pills and he said that if i did that to expect a few weeks of hell and even then it might not work, but i am keeping it in mind when i can get a few weeks off work to try something like this and see how my body responds to sleeping naturally after the initial few weeks. But if cfs is causing my sleep dysfunction and its not 'fixed' then even after coming off sleeping pills, i may never revert back to normal sleep anyway. Theres alot of things to think about when treating sleep problems.
I recently have began the use of herbs to try and help with my sleep issues. Have had CFS since October 2006 and more recently Fibromyalgia. My doctor first prescribed Cymbalta to help with sleep issues and it did for a while. After so long, wasn't helping at all. Went to Melatonin next and pretty much the same thing. I think my body develops a tolerance for sleep meds after a while too. About 3 weeks ago I started using Kava Kava and Valerian Root and I am seeing good results so far. I have a friend who is an herbalist and this is what she recommended. I'm also taking licorice root/marshmallow root which helps soothes the tissues in your body as I have interstitial cystitis also. My sleep issues still need work--far from perfect, but there has definitely been some improvement, so we'll see what happens.