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Desperately need help with failed Klonopin/Valium taper - life is a mess

Discussion in 'General Treatment' started by Bunchy, Jan 8, 2012.

  1. Bunchy

    Bunchy

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    Hi,

    I'm new to this board and have CFS/FMS/MCS plus a host of other complications and symptoms that have developed over the course of my illness all of which are worse than the fatigue at the beginning of my illness - that affect my CNS and sensory nervous system.

    I can tell my full story another time but this post is a matter of urgency and I need advice as soon as possible.

    I was initially given Valium in 2002 (Ive been sick since 1988) and then also Klonopin was added in 2005 - both were given to me for symptomatic relief of severe, unbearable neuropathic type pain all over and inside my body and other painful symptoms and sensations that arose from a deterioration in my condition.
    The Valium worked well at first but in the end was not strong enough and that is why I was given the Klonopin as well.

    I only took them prn - mostly every two or three days when the pain and other CNS type symptoms and sensations flared up particularly badly and I needed relief or to be able to function to some degree.

    I ended up on quite large amounts of both drugs by 2007 as my life situation has also been extremely stressful on top of my illness but decreased by half the amount over the following year with no difficulty by 2008.

    After two years of taking exactly the same lower doses every other day, I started to experience severe interdose withdrawals in 2010 of extreme anxiety and panic attacks and out of fear and desperation I tried to do a Valium taper last year, completely stopping the Klonopin and dosing the Valium every day instead of every other day and reducing the amount I took every three weeks by about 10%.

    I got down to 10mgs Valium in August and I pretty much had a complete nervous breakdown. I was not coping either mentally with the intense anxiety withdrawal symptoms or physically because by this point there was no therapeutic benefit left to help with the pain, sensory overload, other symptoms and sleep.

    My husband and I are on a temporary break because he couldn't cope anymore with the person I had become - totally isolated, desperately anxious 24/7, depressed and uninterested in anything mainly because of severe withdrawal anxiety and not just due to my illness anymore and a complete nervous wreck, constantly obsessing about everything bad and totally cutting my family out of my life.

    I was a shell of the person I had been two years ago before the interdose withdrawals started. I basically started to lose my mind!

    I am now with my parents and my husband wants to take me back next week but I need to decide how to get my life back and get stable mentally again.

    This will definitely involve upping my dose of benzodiazepines in one way or another.

    I am wondering about re-instating the Klonopin to get my life and health back on track but I don't know what dose is a good maintenance dose or how many times a day I should take it.

    Im not sure whether I can stay with just the Valium as my doctor will only let me have a certain amount (20mgs a day) as she prefers Klonopin (she allows me up to 4mgs a day though I have not taken any for a whole year)

    I don't want to experience interdose or tolerance withdrawal problems further down the line (Im COMPLETELY TERRIFIED of this) but I desperately need to save my marriage and to be able to function a little better both mentally and physically again and stop the overwhelming 24/7 anxiety.

    Can anyone who has been on long term use of Klonopin or Valium *for at least ten years* advise me what to do?

    My doctor (nor any doctor or specialist I have seen over the years here in the UK) is not very knowledgeable about either CFS or my other complex symptoms that have arisen over the years I have been ill nor does she really understand the benzodiazepine drugs but she normally will give me what I ask for and she wants to help me if she can though she is unaware of what I have been through with the Valium taper as I did not tell her I was attempting this.

    Approximate doses were as follows:

    2002-2005: 20-30mgs Valium as needed about twice a week
    2005-2007: 20-40mgs Valium and 2-4mgs Klonopin every three or four days
    2007-2008: 10-20mgs Valium and 2mgs Klonopin every two or three days
    2009-2010: 10mgs Valium and 2mgs Klonopin or 20mgs Valium and 1mg Klonopin dosing every other day. Severe interdose withdrawal symptoms started suddenly early summer 2010
    2011 Attempted Valium taper starting at 20mgs Valium and ending below 10mgs huge disaster!
    Currently at 15mgs Valium and still struggling with anxiety and fighting to save my marriage and find myself again.
     
    Advocate likes this.
  2. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    Gapapentin may help you during benzodiazepine withdrawal:

    http://www.ispub.com/journal/the-in...hdrawal-in-a-multidrug-dependent-patient.html
     
  3. Dreambirdie

    Dreambirdie work in progress

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    In all honesty, I don't think there is a simple answer to your current crisis. I think it would be advisable for you to find an MD in your area who is trained in integrative medicine, and could help you create a plan of action that will slowly wean you off of these drugs. Perhaps acupuncture and herbs could help alleviate some of the anxiety. But you would need to find someone VERY HIGHLY SKILLED at working with benzo withdrawal. Benzos are powerfully addictive and getting off of them can be challenging, to say the least.

    I wish you good luck on your journey.


    PS Here is a link to a forum for people who need benzo withdrawl support. MAybe they can help you. http://www.benzobuddies.org/
     
    Advocate likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    also look into baclofen as well to help withdrawal.

    good luck
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Esperanza,

    Do you know how to use chat? It may be that your GABA receptors are overwhelmed. I know someone whose neurologist got them down to low doses in a couple of weeks.

    To chat, sign in by clicking on an icon in the lower right corner of the page. Then click on the xxx people here and click on chat next to the person you want to chat with.

    Best wishes with this,
    Sushi
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    progesterone is also known to improve gaba receptor sensitivity as well, so can help u to lower your doses, some find on its own it helps with sleep??
     
  7. Nielk

    Nielk

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    Esperanza,

    I wish I would have the answer for you. I am in a similar situation. I have been on Klonopin for about 6 years now and take daily dose of 3mg. I don't taake any valium. I have been on othe Benzo's before and was able to slowly taper off them without problems. Klonopin is a different story. I tried many times and no matter how slowly I proceed, I can't do it. Even with the help of an accupuncturis and neurofeedback, including the supplements they put me on to strengthen my nervous system, I can't budge from this "magical" number of 3mg a day. A month ago, with all this support, I tried to taper 1/10th of the dose and progressively felt worse and worse where I didn't even recognize my personality. I was sooo edgy! I couldn't take it and went back up to my usual 3mg and even then it took about two weeks to get back to "my normal".

    I am at my wits end as far as what to do with this problem. I have gotten off similar drugs, like Topomax, Phenobarbatol and all sorts of anti-depressants. I don't know why I can't budge with this Klonopin!
     
    Advocate likes this.
  8. Dreambirdie

    Dreambirdie work in progress

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    So sorry for you Nielk. I have heard this story before, from many others. The benzos are so addictive, and people are not warned sufficiently about that. I had my own mini-disaster with Valium as a teenager, when my father who was a doctor prescribed it for me for sleep and got me addicted to it. I remember going through INTENSE withdrawals, after I quit cold turkey, not knowing any better and not getting any info about how dangerous that could be. It was a NIGHTMARE.

    I feel for anyone who has to wean themselves off these hideous, dangerously addictive drugs. They are on my shit list forever.
     
    Advocate and Nielk like this.
  9. Freddd

    Freddd Senior Member

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    Hi Esperanza,

    I have helped hundreds of people with benzo tapers, most of them having a history of problems in trying to get off. If done properly it is tedious and completely non-eventful. Contact me by private message if you want to do a succesful taper with a method that works and is in line with what others providing safe and effective tapes for benzos describe.
     
  10. Freddd

    Freddd Senior Member

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    Private message me if you want to do a safe and effective taper that the worst thing that can be said of it is that it can take a couple of years and is tedious. If you want to talk about it here I will. I've received an android tablet for Christmas and am working on a designing a version of my program to run on that. Right now I have to email a taper schedule. In some months I hope to have a phone app for it.
     
  11. Bunchy

    Bunchy

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    Thanks for all the support,

    I recognize a few "faces" here from another group that is not very active anymore.

    I am going to talk to a telephone helpline that are experts in this area when I get back home and also take relevant information to my doctor. The reason I have not told my doctor I am in such a mess is the fact that the medical profession in the UK only recognize CFS and similar illnesses as psychiatric in origin and I am now phobic of doctors in general because of the horrible attitude towards me and my health by doctors and specialists apart from my old doctor who actually believed my CFS and other symptoms but who is now retired (sadly he was the doctor that got me on too many benzos unfortunately)

    Freddd - can you tell me if you are professionally qualified to deal with benzo tapers? If so, I will PM you - when I can work out how to do it ;)

    I might also ask my doctor about Neurontin and Baclofen but it was because both these medicines failed to treat my severe neuropathic pain that I was originally put on benzos all those years back :S

    Hanging in here at 15mgs Valium.

    Nice to meet you all,

    Hugs Esperanza x
     
  12. Nielk

    Nielk

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    I tried Neurontin too and it didn't help me either.
     
  13. GhostGum

    GhostGum Senior Member

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    Nielk are you still considering trying to replace the Klonopin with phenibut? Might be a bit of a long shot but even if you needed say 1g of phenibut a day, eventually it is going to be much easier to taper off; sounds like Klonopin is a complete nightmare.
     
  14. Nielk

    Nielk

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    Klonopin is a complete nightmare for sure. The truth is that at this point I don't know what I would be like without it? Could it be that my body really needs it to function? or it is just a pure strong addiction? I don't really know.

    Do you have experience with Phenibut? Someone recommended it to me but, I don't know this person and would like to hear first hand reports about people who have had experience with it.

    Thanks for youe advice.
     
  15. Bunchy

    Bunchy

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    Freddd,

    I have PM'd you = I hope you got the first one :)

    Esperanza x
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i have used phenibut, tolerance to it is very quick, so not a long term solution. For what its worth lyrica i have found more sedating/anxiety relieving then neurontin. Also while tapering benzos, many have found the antidepressant doxepin helpful, like in a cross taper, doxepin can help sleep and anxiety greatly while tapering benzos, need to talk about all this with your doc. Going cold turkey with benzos can cause seizures etc so medical advice is really needed.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i also wonder how much is withdrawal and how much is just our whacky nervous system???
     
  18. Nielk

    Nielk

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    Thanks for the advice but, doxepin is an antidepressant and my body reacts really badly to them.
    Maybe, I can be hospitalized and they can induce a coma till I'm off the kolonpin completely. (Hey, I'm entitled to my dream)
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    doxepin is very different to othrr antid's, many cfsers seem tobtolerate this alot better then drugs like zoloft and prozac. Dosages used for sleep and anxiety are much lower then doses for depression. Ad dosages are over 100mg where sleep and anxiety doses start at 10mg and go upto 100mg. being anaethetised for a few days sounds great, count me in, maybe a group discount????
     
  20. GhostGum

    GhostGum Senior Member

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    Have used it on and off for years and as long as you avoid tolerance its a lot better than any benzo, I find it has very positive cognitive effects while benzo's as helpful as they were with anxiety they consciously made me always feel not quite there. I guess the danger is replacing one thing with another or that the phenibut wont help coming off the Klonopin at all; just figured its worth a shot replacing the Klonopin dose for 1g phenibut for two or three days and see what happens, just saying that seems like a band aid though for something that will take much longer.

    I hate to say but long term use of benzodiazepine's can cause real problems trying to come off, could take months to recover fully from the withdrawal symptoms; I hope someone has an easy solution for you guys. I always found it ironic that these types of drugs can end up causing much more worse symptoms of anxiety and nervousness than they are suppose to treat.
     

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