Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Nov 24, 2012.

  1. Can someone please tell me if they know if xanax is safe to take for those with ME/CFS? I am still struggling with insomnia... even the benadryl WITH the new sleep packets aren't working now. Only got 3 hours sleep last night and combined with what I've been dealing with for over a week now, I'm going downhill fast.

    I've never tried xanax but think I have some that was sent home with me the last time I was in the hospital a couple years ago. But if it can help me sleep without exacerbating my ME/CFS, I need to try it. I'm desperate here... nothing seems to be consistently working for me.... and I think pushing for Thanksgiving day has caused me to take 10 giant steps backward unfortunately.

    Any feedback is greatly appreciated... I'm at my breaking point with this relentless insomnia... and now I'm coming down with something on top of everything else... my throat is raw and I've got a nagging cough... when it rains, it pours :-(

  2. I had been taking Sleepytime tea, 3 magnesium glycinate, 3 Relax-All (which has. Tryptophan, calcium, phenibut, valerian root extract, jujube extract, inositol, ashwagandha, camomile flowers and Lemon balm)... then I added an additional lemon balm cap (500mg) when I started waking up thru the nite. It seemed to work for a while... but then after my recent surgery, suddenly my sleep supps just stopped working...

    Nothing I'm trying is working... I tried something called "Sleep Assure" from my healthfood store that came highly recommended ... tried the glycine.... tried benadryl which worked for one night... tried a sleep packet of pills from my local apothecary which didn't work by themselves but when I added two benadryl an hour later it worked for one night.... but for some crazy reason it didn't work the next night (last night)... so I'm back to square one and feeling sick as a dog :-( just don't know what to do now... my husband just informed me that he threw out the xanax the other day because it had expired... so now I don't even have that to try... I'm up the creek without a paddle and going downhill fast... any ideas??

    Thanks Jam,
  3. LadyCarol

    LadyCarol Member

    Firstly Xanax (alprazolam) is not the same as Ativan (lorazepam).
    Both of these medications are powerful drugs and should only be used when prescribed by a doctor.

    It is best to discuss your options with your doctor as they are best placed to make an overall assessment and prescribe you something that will help you.
    [This Message was Edited on 11/24/2012]
  4. sunflowergirl

    sunflowergirl Well-Known Member

    Or are you in a wake state all the time? Does your brain race at night when you're trying to fall asleep?

    I've taken one tylenol PM the last 3 nights and have gotten about 8 hrs. each night but tonight I'm going back to my herbal stuff.....Peaceful Nights from Prohealth which has gaba in it to calm my brain and help me sleep.

  5. Yes, I'm sleepy during the day but still can't sleep... I've tried to tale naps but just lay there and can't fall asleep. My brain isn't racing... that's why I can't understand what's going on... I'm tired and relaxed but just can't fall asleep... or in the case of last night, I eventually fell asleep but was awake 3 hours later... then was able to fall back asleep about 30 min later but only slept an hour and I've been awake ever since.... doesn't make any sense to me! Do you know if D-Ribose can cause insomnia? I was trying Dr. Myhill's protocol and was taking half a teaspoon 4 times a day (sometimes only 3 times a day)... this is something farely new I was trying... and I felt like it WAS helping me with my extreme muscle weakness and energy... until, that is, the insomnia kicked in last Thursday night (week before Thanksgiving). So I'm just wondering if that could be the culprit... or just coincidence?

    Ladycarol, I don't have a doctor right now to see... I have a new patient appt Wednesday with a new doc (not an integrative doc though, so I'm not sure how it will go)... but at the rate I'm going, I may not even be able to get there.... unless someone can put me on a stretcher! I'm on the verge of collapse because of the insomnia... it would be difficult enough for a healthy person, but when you combine it with the ME/CFS, its the kiss of death!

    My husband wants to take me to the ER but I don't dare go there... they will likely just make things worse ... but I'm getting desperate here... MY Me/cfs Symptoms are going off the charts along with the fibromyalgia... this is torture :-( don't know how much more I can endure...
  6. joanierav

    joanierav Member

    i feel so bad for you, because ive been there. i call it the curse of the devil. but ppl with cfs , insomnia is their worst symtom. its trial and eror with most sleep aids.

    lots of ppl on this board take the zanax and swear by it. maybe you can start with the smallest dose and even break that in half. most of my sleep meds, only last 2 yrs. and then i go on to another protocol. luckily i have a good doc that listens to me, and knows how important sleep is for us.

    in the 20 yrs that ive been sick with cfs, ive tried every sleep med made alternative first, and then went on to the conventional stuff. now thats the only thing that works for me. ive never taken the zanax, so i cant tell you about it. but have you tried the mellatonin, or tylenol pm? tylenol pm worked for me for a while , but then stopped.

    i will pray for you, please try to get to doc, or at least can you call him, if you cant get there?

    when i had this so bad, 10 yrs ago. my doc took it very seriously, as i was almost incoherent when i went in to see her.

    good luck hon. hugs, joanierav
  7. jole

    jole Member

    I have both FM and CFS. Sleeping pills, whether prescribed or natural, do not work for me. They have the opposite effect of totally wiring me up.

    My brain is in overdrive and does not shut off. Xanax is the only thing that's helped me sleep, because it calms down my brain. But it doesn't 'make' me sleep like sleeping pills do. Just relaxes me. Yes, I understand the insomnia. For years I'd sleep 15-30 minutes, then be awake for 2-3 hours. Maybe got a total of 2 hours sleep. Was a zombie mentally and physically. With the Xanax I sleep approx. 5-6 hours, waking a couple times but able to go back to sleep, but still have those times of being up for several days/nights of no sleep at all.

    I sure understand, and hope you find some relief. Not sleeping messes you up sooo badly! Definitely causes severe depression for me...or severe frustration!
    If you don't have the racing brain, I'm not sure Xanax will help that much, but maybe your doc will let you give it a try. Good luck!!
  8. LadyCarol

    LadyCarol Member

    D-Ribose may induce hypoglycemia (insulin shock). If only in a mild form then insomnia can result.

    The important matter here is to not to try and overdo getting better too quickly. So be all means stop taking D-Ribose and see if that helps your sleep improve. Also do not clock watch during the night, the less the brain knows about time the more it's able to relax and help with sleep.

    In simple terms it sounds like your sleep switch isn't turning on, I use to have the same issue. It's a common problem for people with CFS/ME. Until you are able to see a doctor for an assessment there is one supplement which does help with sleep. You could try 1000mg of Valerian about 20 minutes before you go to bed, however, it can interact with some medications and supplements so I would only advise trying it if you are not taking any other medications.
    [This Message was Edited on 11/25/2012]
  9. words

    words New Member

    I so feel your pain.

    Please be careful, those of you taking 5Htp. It can interact with meds & herbs.
    As can St. John's Wort & Tramadol. Serotonin Syndrome is nothing to mess with.

    As a lifelong insomniac, I found my miracle: Minipress. Otherwise termed Prazosin. 1mg & I'm OUT, & OUT all night. Only took 1 observant psychiatrist to LISTEN when I said I had PTSD, then prescribe what works for sleep. PTSD or not, it's worth a try. My quality of life was so low for years.... then went thru menopause, which is its own hell if you have the constant hotflash/shivering thing all night.

    Good luck! =)
  10. ... for all of the great ideas/info and for caring! The past week and a half has been murder... but thankfully, last night I was able to sleep around 7 or 8 hours... the sleep was broken up a bit with a few "awakenings" but I was able to fall right back asleep (thank God!)... so this is a HUGE improvement. But I know from recent past experience that what worked for me last night may not work tonight... so keep praying! Thanks so much!

    Because I've had such a sore throat and cough, I decided to take some Nyquil with one Benadryl (since Nyquil has 25 mg of benedryl, I added another 25 mg benadryl) and I took that about an hour after taking that sleep packet from my apothecary... and after a hot soak in a tub of epsom salts. At least this combo seemed to work last night. But I know I can't take Nyquil every night... so I've taken notes on all of your great info you gave me and will pray about which one to try next. Thanks so much for taking the time to share with me what has worked for each of you! I love you guys!

    I know I have Valerian root in my sleepytime tea and in this sleep packet, just not sure how much in each. I'll look into that. And I think I'll back down to taking half a teaspoon of the D-Ribose in the morning only for right now... hopefully that won't interfere with my sleep. Seems like an old sleep supp I used to take years ago had 5-HTP in it... I'll look into that too. And I'm assuming that the Mini-press/prazosin is by prescription only? For me, I usually have to exhaust all natural supps first because of my hyper-sensitivity to synthetic drugs. I was desperate enough the other night to try the Xanax, if I had still had it in my home... but as I said, my huz had thrown it out cause it had expired.

    Again, I can't thank y'all enough for your help and empathy and compassion. You are all such blessings! Esp when I've been at such a breaking point with the lack of sleep... I just don't think there is anything worse than not being able to sleep for days on end... Night before last, when I awoke after only 4 hours sleep and couldn't get back to sleep, I thought I was going to lose my mind!

    So thanks again, Leah, Jam, Joanirav, Jole, LadyCarol and Words... I'm saying a prayer for tonight... if I can just get three consecutive nights of decent sleep, I think I'll be back on track... I'll let y'all know how it goes for the next two nights... just not sure whether to take the Nyquil again tonight or try something different... uugghh... so nervewracking trying to decide...

    Hope you are all getting good sleep... Hoping for better nights of healing and restorative sleep...

    Blessiings and Gentle Hugs,

    [This Message was Edited on 11/26/2012]
  11. harrysmom

    harrysmom Member

    Hi. Sorry to hear about your problems with sleeping. I know how that feels since it was one of my first and worst symptoms when I first was diagnosed with CFS 16 years ago. I had been awake for 3 or 4 days and nights straight with my brain racing. I was sent to a pharmo-psychiatrist who knew right away that Xanax would work wonders and he was right. I have taken half of a .25 tablet every night for 15 years now and it works very well to let me get to sleep and it is one of the only drugs I can tolerate since I am so sensitive to most stuff. Please get a doctor to prescribe some for you and I feel pretty certain it will help with your "can't get to sleep" problem.

    You need to get sleep as not sleeping will wear you down and leave you susceptible to colds and other bugs that are around. I am super sensitive to medications and can't tolerate much, but the Xanax works great and the small dose still seems to work. Don't worry so much about taking a drug if you need it. This CFS isn't going to magically disappear so you will probably always have to be on something to sleep. I am 65 and have taken Xanax since I've been 50 and I'm still here to talk about it. Please give it a try.

  12. ... so the saga continues. Only got 5 and a half hours sleep even though I took the exact same thing I did the night before when I got 7 or 8 hours sleep. The only variable that changed was that I did NOT take a hot soak in a tub of epsom salts because I really wasn't feeling up to all that last night... I really wasn't feeling good and was trying to get rid of a splitting headache. So, I still haven't found a solution :-(

    But thanks Leah and Harrysmom for your input. I see a new doctor tomorrow (praying I can get there!), so I will ask about the xanax, among other things. She is an Asian doc who went to Harvard... not to stereotype, but I'm praying that she will be open to natural methods since she is Asian. Please pray with me about this. I have been without a primary doc for quite some time and am a little "gun-shy" because of bad experiences with docs in the past.

    I'm not on ant-depressants nor any meds except my Nature Thyroid... and the OTC meds I've taken recently at night (Niquil and tylenol and benadryl). I've not had a problem with depression (thank God... I'm dealing with so much already!). I may have a day every so often where I get down because I'm fed up with this disease, but it only lasts a day or less. So I'm assuming that the 5-HTP shouldn't be a problem. Coincidently, it turns out that 100mg of 5Htp is in this sleep packet I'm trying from my apothecary. Just don't know why its not working better... LadyCarol mentioned earlier that the switch that allows us to fall asleep must be turned off.... I wonder how I can get it turned back on? So frustrating...

    But I SO appreciate all the input and great ideas! Maybe I should pick up some additional valerian root to add to the mix... Praying for wisdom on all this... and for better sleep!

    Thanks again, everyone, for your help! And for caring! God bless you!

    Blessings and Gentle Hugs,

    [This Message was Edited on 11/27/2012]
  13. LadyCarol

    LadyCarol Member

    Shel, your sleep switch is working. You had around 5.5 hours sleep last night, that is still pretty decent. If the sleep switch isn't working you'd be getting 0 (zero) hours sleep per night.

    It's a good thing to take a warm bath (not hot) or shower every night prior to going to bed, it helps contribute towards sleep hygiene as well as washing off the days gunk and helping the skin to breath.

    When did you have your thyroid tested ? If it's not been tested for more than 2 months then it's worth getting that tested. If the thyroid T4 and/or T3 are too high that can/will contribute to poorer sleep quality.
  14. I so appreciate your support and suggestions. I'm finally going to get my labs done Friday and will finally see where my thyroid levels are. Haven't had labs since June.

    And I agree that 4 or 5 hours is better than none, so I'm thankful. I'm still taking the Nyquil though... Last night I was able to get 7 and a half hours, although I awoke a few times through the night... at least I was able to fall back asleep. I think the hot soak def helps me sleep better... AND I was feeling much better today because of it (thank God!)

    Unfortunately, the new doc isn't a good match... If you'd like more details on how it went, you can read my post entitled "CELEXA FOR ME/CFS??" She is not an integrative doc, unfortunately :-( Also, she didn't think the Xanax was a good idea for sleep... and thought it was fine for me to take Nyquil every night... although I know that it too will stop working at some point... but at least I'm finally getting some sleep!

    Thanks to all of you for your help and prayers! God bless you!

    Blessings and Gentle Hugs,

    [This Message was Edited on 11/28/2012]
  15. joanierav

    joanierav Member

    was wondering about the minipress i was very interested , until i looked it up. it is a bp med. did you spell it correctly? i was not aware that bp meds can help with insomnia.

    however i am still going to ask my doc about it, as i do take a bp pill at night. maybe he can switch it to minipress. always looking for stuff to help me sleep better.

    hugs, joanierav
  16. Mikie

    Mikie Moderator

    I was taking clonazepam and it wasn't working as well as it used to so my doc changed me to lorazepam. I took 1 mg. and had trouble breathing because it acted like a muscle relaxant. The patient info said one can die because one can stop breathing and the muscles are too relaxed to start breathing again. Yikes! then, I started to hallucinate, seeing monsters and bugs crawling up the wall. I've gone back to my clonazepam. I thought that if one were taking one benzo, one could take another--NOT!

    Be careful with benzos.

    Love, Mikie
  17. greatgran2

    greatgran2 Member

    I have taken xanax for 12 years , as all other meds had to many side effects for me.. I have nothing but good to say about this med.. It helps with my sleep, pain, anxiety ect.. Been on the same dose of 1/4 to 1/2 mg.. I can take up to three a day.. I have CFS/ FM and Chronic Lyme.. The drug has been a life saver for me.

    Guess it helps tolerate the misery of this disease that for now there is no cure..

    Sure can relate you have my sympathy..
  18. ... thanks so much for your input... Jam, I used to take Inositol as part of my supps... don't remember why I stopped or if it helped or not... can't remember much these days... still struggling with getting the quantity and quality of sleep that I need, unfortunately. Turns out, my thyroid levels are off... I'm hypo right now :-( and along with my cortisol being all messed up, no wonder my sleep is messed up and making me feel awful :-( but thanks for the suggestion, Jam. I just may try the inositol again...

    Greatgran2, thank you for sharing your experience with xanax... it does sound like a lifesaver for you and some others. I went to a diff doc yesterday (2 in less than a week) and neither of them would agree to prescribe the xanax :-( The one yesterday said that it would not help me get the quality and deep sleep that I need. He wants me to try another drug called Nuedexta... but I'm not sure about it. The possible side effects are pretty severe and scary... But I'm glad that you and others at least have found something that works for you and is reliable...

    For me, the saga continues, unfortunately...