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How do we treat severe insomnia for cfs/me

Discussion in 'General Treatment' started by heapsreal, Feb 8, 2012.

  1. Calathea

    Calathea Darkness therapy

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    Hang on, why should I be tapering a drug I've been off for over three weeks? Are you saying I should start it up again?
  2. runner64

    runner64

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    Oh gosh no. I misread, I thought you meant you were still reducing 300mg per week STILL. Then perhaps slowing it down would have been the answer but that said, I always recommend checking with those familiar with the specific drug you are enquiring about. That's the best way to go with meds. Find others that have taken the same one. It's not like benzos or z-drugs if that's what you're concerned with.

    If no one comes by here as they experienced gabapentin, post on the board I told you about. Many are coming off of gabapentin there or have come off of it and they will gladly share their experience with it to you. I understand the other two specifically, not that one specifically, just very generally. xo :)
  3. Calathea

    Calathea Darkness therapy

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    Thanks, and thank you for the earlier explanation. I'm still a bit lost, I'm afraid. I don't actually know what GABA is.

    Since I'm already off the gabapentin, I'm not looking for tapering instructions. I'm trying to find out how to deal with the withdrawal syndrome which I am still experiencing, and I am trying to find out how withdrawal has affected my body so that I can work out how to handle it.
  4. runner64

    runner64

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    I understand. Gosh I wish you weren't having symptoms. And all the more reason to check with those that came off you know? So you can get a closer picture where you are at with it. Maybe it will be easier to handle. I don't know the cycle of gabapentin symtpoms if that's what they are Calathea. I'm really sorry.

    I'll try again with the GABA. It's a chemical in our brain, a neruotransmitter that is responsible for relaxing us and making us calm and sleep and that kind of thing.

    It has to go to "receptor sites", in that there are sites distributed, through out brain and gut called GABA receptors. Or Gaba receptor sites. It goes to a part of this site and makes contact, and the contact makes the "action" of sedation take place.

    Does that make sense? It needs those GABA receptor sites to go to in order for this sedating action to take place.
    That's an example of a "mechanism of action". Maybe you know that anyway. Probably.

    Here's a picture. You'll see our natural GABA goes to a spot, benzos and non-benzo which are the z-drugs that go to the same spot on the GABA receptor site. Other anesthetics for surgery that sedate like propofol. Barbituates sedate. Notice they all go to the same site.
    http://ccforum.com/content/12/S3/S4/figure/F1

    Barbibituates are dangerous as you know. Benzos are close to them. One difference that encouraged benzo and z-drug use was it's easier to OD from barbituates, therefore they deemed benzos as a safe alternative as people could apparently take more and not OD. But they failed to learn what the action is so neuro trouble because of it, and what that feels to a person and how the drug takes the brain/cns function down. As well, if people drink and take benzos, being they're a cns depressant, it's a very bad mix and therefore dangerous. So in some senses it's close.

    They explain here benzos, z-drugs, barbituates, potentiate GABA. Potentiate, enhance, make it stronger.

    It says benzos cause less physical dependence. That is very unfortunately not true. Most are not or were not psychologically dependent on benzos but physically. They don't list all side effects on the link as well. It's a generic version for basic understanding.
    http://www.flashcardmachine.com/barbituates-and-benzodiazepines.html
  5. Sammy

    Sammy

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    Hi Runner64,

    Does Ciprofloxin pose the same risk as fluoroquinilone???? As my intolerable insomnia started 6weeks into a course of Cipro(along with intolerable anxiety)which I strongly think is the cause of my insomnia.... or at least one large part of the cause.

    Cheers!!
  6. Sing

    Sing Senior Member

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    runner 64,

    Thanks for the warnings, information and support in you posts. I would like you to re-post any link for Gabapentin though. Pfizer seems to claim that it doesn't go to GABA sites or even know how it works, but it does seem to have a Gaba effect, of course, and why else would it be called that? Anyway, do you have a link which describes how long term use of it might damage the brain?
    I get it about barbiturates, benzos and x-drugs, but would like more information on Gabapentin. Thank you!
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sing i have also read that gabapentin and lyrica dont work on gaba receptors, i think initially they thought it did but they seem to think it works like a calcium channel blocker which can help with pain modulation and have sedative effects.

    cheers!!
  8. Calathea

    Calathea Darkness therapy

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    I don't know anything about calcium channel blockers. Would you be so kind as to explain a little, including why this would make withdrawal so bad?
  9. Sing

    Sing Senior Member

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    Hi heapsreal! I wonder what a calcium channel is, and what a blocker would be? Must have to do with nerve transmission but it is beyond my biological knowledge.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes, calcium channel blocker simplistic slows down certain nerve transmissions, they are commonly used in epilepsy as well as treating high blood pressure as well as chronic pain/nerve pain.
  11. taniaaust1

    taniaaust1 Senior Member

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    Calthea .. I think it was you who asked the question, sorry if its another. Someone asked how long is it safe to take Temazepam for.

    My specialist said to take no more initially then 5 days in a row and to only be taking it like that with the goal of bringing ones sleep cycle forward (eg take slightly earlier each night). Then no more then twice (three times at the very most) per week.

    I think that may be starting to happen with me :( . As I want to avoid taking temazepam too much (doctor only sounded happy with me taking it twice a week thou he did say I could take it 3) Ive taken the antihistamine again for the past 3 nights but the past two nights the antihistamine, it hasnt seemed to work as well as previously.

    So Im now considering what to increase or what to do.. I can up the antihistamine or aybe I should start seeking yet another thing to throw in the whole sleep mix (I also take melatonin).

    Past two nights its taken 90mins for the sleep things to kick in.. and Ive been taking them at 2am cause Im still trying to bring my sleep cycle forward. Past two nights its been a 3.30am sleep time which Im still greatful for as its far better then my other 6.30-9.30am sleep time.

    I see a new ME/CFS specialist tomorrow, so I'll see what he suggests I do.
  12. Calathea

    Calathea Darkness therapy

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    Why don't we start a new thread called something like "Working with potentially addictive meds"? It's a big issue, and it doesn't just cover sleep meds. Runner24, would you be willing to start the thread? You seem to know a good deal about it, and would be well placed to write a basic intro and give a list of meds which can potentially cause problems with dependency, something I think would be very valuable to have at the top of the thread. Perhaps we should put the list together as part of the thread (since it's quite a job, unless anyone knows of a good one online which we can copy), and whoever started it can keep on editing the top post as required.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi tania,

    Sometimes alternating between different antihistamines every few days or weeks can help u to avoid tolerance and most u can buy over the counter. One called periactin has studies showing it improves deep stages of sleep and is also used alot for migraines and nausea.

    cheers!!!
  14. runner64

    runner64

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    Hi Sammy, ciprofloxin is a fluoroquinoline. There's many different names of this particular antibiotic. Levaquin, ciprofloxin, and more names.

    It's not your imagination if that is what you are experiencing with Cipro. When you look at the top left anxiety and insomnia are a side effect and the side effects list goes on as they get more serious.
    http://fqvictims.org/fqvictims/index.htm

    They come under many names so one would have to google to get the names of these antibiotics in the same family.
    http://www.antibiotics.org/resources/side-effects.pdf


    People on benzos z-drugs should never take fluoroqinolones due to them working on the central nervous system. There's much safer antibiotics without their history. Dr. Ashton that studied this has it listed. They call it "floxed" when someone gets side effects from fluoro's. In working with people tapering benzos, I've met a couple people who unfortunately were new to these meds new to these med, and they had to heal from 2 cns deals, benzo, and flouroquinolones together.
    In point #3 and excerpt of Dr. Ashton's with benzos
    http://www.benzodocs.com/ashtonmanual/bzcha00.shtml
  15. runner64

    runner64

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    Hi Sing, you're welcome. I'm glad that you found this information helpful. As I said, I am not super familiar with Gabapentin other than what you guys already know. I'm right beside all of you there. As well in that it "enhances" our natural GABA chemical on some aspect but it doesn't seem to go to the GABA receptor for contact in order to make that action take place. So it does confuse me somewhat like a few here.

    That said, perhaps listen to the podcast from the peers of research pharmacologist/anesthesiologist, Dr. James Wright who I met and maybe they'll talk about potential adverse affects and what they would be. I only had time to listen to the beginning and the intro started out discussing how it became popular only because of marketing, and has less efficacy than claimed. Apparently it is good for some, but not near as many as claimed. That's why I like their group. It's more honest information for the general public. It's unfortunate it's hard to come by the info, search and find etc.

    I wish I could help you more with that one but I really can't. This is from his group "Therapeutics Initiative."
    http://www.ti.ubc.ca/podcast/ti-podcast-letter-75-gabapentin-pain-new-evidence-hidden-data

    And last, when you see that benzos go the same receptor as the barbituates, makes them not look so benign does it?
  16. runner64

    runner64

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    Cheers Heapsreal!!! :) Is it sunny where you are right now? Maybe that will put me too sleep. I'm getting on a flight!

    You got it. She's got the nail on the head Tania! Switching out. I might add, 5 - 7 days has been known to be enough time for the brain to change with a benzo and z-drug. 3 days in a row might be a safer bet and jumping to something else. Back and forth that way. Many benzo people tapering as I said, use Atarax and Vistaril to help them sleep coming down. They are the older stronger prescription anti histamines that were very successfully used for anxiety and insomnia back in the day.
  17. Sing

    Sing Senior Member

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    I listened to this podcast and would recommend it to anyone on Gabapentin or thinking of it. This group, Therapeutics Initiative, is an independent organization based in British Columbia, which tries to analyze all the data on commonly prescribed drugs, to find their real efficacy, side effects and dangers, rather than the views of these drugs promoted by the drug companies. There is a lot of good information on their site: www.ti.ubc.ca
  18. runner64

    runner64

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    Thanks Sing!! And there are not near enough groups like this, they tell the truth. This is what they do, it's their job and what they specialize in. As Sing said, facts on efficacy, side effects, and dangers in regards to drugs is 100% what they research.

    I'm really glad you find this helpful Sing. I really am. People have a right to the information on all sides about what they are prescribed. It's a time for critical thinking.

    So, if one contacts Dr. James Wright, as I said, he'll back my information in regards to benzos and z-drugs. It's not just about dependency with those 2 that work exactly the same way, it's about the potential physical "side effects" coming off the drug too fast IF one becomes dependent. When one is dependent to a benzo or z-drug, that signals the drug has taken away the brain and central nervous system's ability to slow itself down.

    And the drug has to be slow tapered to allow for that "function" to slowly come back. Losing that "function" is what creates side effects for these two particular drugs.

    And I'm speaking from experience, it rendered me neurologically and central nervous system wise non-functional for a long time while healing. (I am only on doxycycline for my infection now.)

    Research everything. Go to patient forums to find out what "real" people are experiencing. When you're told not to go to the internet to read what others have experienced, GO to the internet and look up what others have experienced.

    There's a lot to research from on this thread as a starting point with the above mentioned meds. xo
  19. Calathea

    Calathea Darkness therapy

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    Runner64 - any chance you could start that thread on working with meds which may cause dependency, as I suggested earlier on?
  20. runner64

    runner64

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    Hi Calathea, I'm sorry. I never answered you on that.

    I really wouldn't know what to say to start one in all senses. Many members on the forums I worked at were knowledgeable in the psychotropics and painkillers, (people not abusing medication but taking as prescribed), and found those psychotropics to have what some call "discontinuation syndromes" which many of us found to be misleading as it really didn't prepare the individual for the length some of these meds could have upon discontinuing. As well as much of the time, they were told by prescriber, it was them, not the med, which wasn't the case. To have any kind of "discontinuation syndrome" illustrates a dependence was formed doesn't it? And these even if showing through emotion, crying, depression, etc., is from the brain losing homeostasis, albeit less severe functional changes as mentioned above, and having to go back to normal which can then take some time.

    Cymbalta is known for brain shocks upon dicontinuing and many are having to open capsuls and count beads to go down in mg's as the mg's tablets are not made small enough to taper. They have a whole support forum dedicated to it. This is off labeled now for pain, fibro etc. Many don't find it reliable as we discussed with Gabapentin and hard to discontinue with the brain shocks.

    Here's the forum as I listed forums for the benzos and z-drugs. Many people taking these are not taking them for depression but pain conditions. Like I said, off labelled.
    http://www.cymbaltawithdrawal.com/forum/9-weaning-off-cymbalta/

    Then if one goes to paxil progress, that is a site that helps those with meds with discontinuation syndromes, "withdrawals".

    That's all I can really offer as I only have personal experience with what I listed in this thread. Those 2 added sites can help those with concerns of dependence issues in some form with other drugs that were "intended" for anti depressants and are off labelled for pain like Cymbalta. Or intended for pain like Gabapentin, but have claims of less efficacy and have a withdrawal therefore some type of dependency was formed regardless of level of severity.

    That's all I really have. If someone wanted to start one, I'd just copy and paste what I put in this thread on a thread specifically for "dependence".

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