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Protracted benzodiazepine withdrawal

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I was prescribed nitrazepam 40 years ago for myoclonic epilepsy.  I tapered off it over three months.  I then had a six month delayed reaction before becoming severely ill.  I was bedridden for two years.  I am gradually recovering but don't know if I wll make a full recovery.  I hope I do.  I am finally free from depression after four decades.  I had no idea nitrazepam was making me so ill.  Has anyone else been so badly affected by benzodiazepines or by the withdrawal process?

3 likes, 23 replies

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  • sapphireN
    sapphireN Guest

    Posted

    Hi Fiona,

    I have been on Nitrazepam for over 40 years.  Never had a night sleep without them.  I tried a withdrawal group a few years back but alas I could not taper.  Would love to try now as after all these years, I find they don't really work anymore except possibly psychologically.  IWould love to know how you tapered.

    • Guest
      Guest sapphireN

      Posted

      Hi sapphire.  I tapered over three months, just broke the  tablet into quarters.  I did not realise this was too fast so I would not recommned it.  I have been desperately ill for two years.  I am not sure how you could do it more slowly apart from breaking little pieces off the tablet.  I am on the forum Benzo Buddies and people there make a liquid with valium and taper only a tiny tiny amount at a time.  I would recommend you do it very slowly after 40 yeras. For me it has been worth coming off the drug.  I was only living a "half-life" for four decades,  I could not feel my own emotions, now I can. 
  • kristine58413
    kristine58413 Guest

    Posted

    Yes I have been affected very badly from klonopin,was on it 16 years and my doctor took me off to quickly back in 2008,I almost died,or should I say,I felt like I was dieing,it's been 8 years and I am still not healed all the way,still have dizziness and loss of balance,my brain is still faster than I am! This med ruined my life!
    • Guest
      Guest kristine58413

      Posted

      I am sorry, Kristine.  Yes benzos have ruined my life too.  I truly hope you will continue to see improvements after 8 years.  Apparently it is possible. I thought I would recover but now I am not so sure but I do of course keep hoping that it will happen. 
  • arnold76584
    arnold76584 Guest

    Posted

    I was taken of 9 years of lorazapam- 8 mg - cold turkey by my doctor in the hospital montored for seizures for 4 days and sent home.in March I will be starting year 4 and I am recliner ridden as my bed is upstairs and I can barely walk and unable to get upstairs.i have extreme muscle tension ,head pressure,tinnitus and Benzo belly.I am surviving day by day and you can't find any doctors that can help and most look at you strange like " get over it"- so I don't know what to tell you except go to Benzo Buddies for thousands like us and see what you can find. 
    • kristine58413
      kristine58413 arnold76584

      Posted

      Hello Arnold,sorry to hear about your suffering to,I am having a better 2 days,since yesterday,it seems to fluctuate for me,I have my sh*tty days,and OK ones,and good ones,but I did suffer a lot before yesterday hit,then I got a little relief,I wonder what this really means? R we permanently like this? I am sorry to hear how your suffering to. I hope u feel better soon.
    • Guest
      Guest arnold76584

      Posted

      HI Arnold.  I am sorry you have been so ill for such a very long time.  I too am on Benzo Buddies and it has been my main support over the past 18 months.  I will be starting year 4 in April and I can hardly believe it.  I am not suffering any more in the way that you are suffering.  It is just difficult for me to function. I hope you will see some improvements very soon.  
  • arnold76584
    arnold76584 Guest

    Posted

    Wow ,I also will start year 4 in March,only a month different. My fear is that each year I get new or worse symptoms ---WHY--- as we are supposed to either get Windows and waves or slowly improve ,not get worse. Two years ago I was visiting friends,now muscle tension is too severe and this year I picked up agrophobia . You have this issue too?
    • Guest
      Guest arnold76584

      Posted

      I don't know why some people seem to get worse.  I can't say I am getting worse.  I have always seen symptoms as part of the healing process.  Whatever the brain is trying to do to get well throws up a whole load of symptoms.  Now it may be that one lot of symptoms is harder to bear than the previous lot but that may not mean that we are not healing.  My worst symptoms (nerve pain, brain squeezes, head pressure) have gone now and I had always assumed I would be much better when that happened.  Sadly I am severely disabled physically and am stil in bed mostly.  My body just won't function.  It is very disheartening but I still try to be optimistic that things will get better.  I hope they will get better for you too. I don't have agoraphobia.  My thigh muscles contract and seem to get stuck in that position for a while.  It is very disconcerting.  Take care. 
    • jessie51
      jessie51 arnold76584

      Posted

      Hello Arnold,

      just been reading your posts and replies to Fiona,  I have replied to Fiona so won't repeat myself here but I didn't mention the agrophobia which to a degree is adding to my problems.  I don't know if it is full agrophobia I have or just a reluctance to go out because I feel so bad and getting out and about for me is painful anyway due to arthritis and other bone related issues,  now adding bad muscle contractions and pain to the mix.  My mood is not good,  I get simple things mixed up no matter how many times I check and think I am sorted,  this makes me either bad tempered or weepy.

      Dr's are saying that these drugs are bad for us but have not said why / how  or what is happening to our bodies as a result of taking them, well at least my docs havn't,   there are other docs saying those who have taken them for many years should not be taken off them and to just continue if they have been helping people.  I have been told by a pharmacist that there is ' No reason at all why I should not be taking them' .  

      Answers would I feel help us,  being monitored would help,  this being left out there,  hung out to dry,  is not doing our mental health any favours at all,  long term it could be doing a lot of damage.  No one is addressing this at all.

      Just my thoughts -  and sorry Arnold I have rambled off the agrophobic subject, lost my train of thought..........   I did not used to be like this,  maybe you can relate to this also.   I think it could be stress about the whole issue and us not getting better / continueing with w/d symptoms could be the cause of our reluctance to go out into the world,  our minds are as tight  and tense as our muscles if you see what I mean.

      Wishing you all the best Arnold, hoping life improves for you and reassuring you that you are not alone in this horrible 'limbo' of existance.   For the first year I tried to be so positive and up beat about it all,  I am down to the thin edge of the wedge now though !

      Warmest regards

      Jessie x

    • kristine58413
      kristine58413 Guest

      Posted

      Hello Fiona this is Kristine,I am impressed with your optimistic attitude,however I am struggling to stay positive,as it has been 8 years off klonopin which I have taken for 16 years and then my docter tapered me to quickly,my body never had time between each cut,to adjust. I had a severe addiction,and I am still not healed,and I still suffer head pressure,light headedness,balance and equilibrium problems,can't even walk to the store without holding on to my carriage! Plus I have trouble handling stress,on top of that I am post menopausel and went through full menopause back in march,I am not sure what I should do at this point,but I believe I am permanently damaged,hurt. Please can u give me some insight into this? My eyes are still red and they have been affected as well,I had a very severe near death experience,from what it felt like.
    • arnold76584
      arnold76584 jessie51

      Posted

      The Benzo was causing me to fall! Of course the neurologist was having e get MRI's of my brain while giving me more BENZOS . After I fell from a path bench while simply sitting,and hitting the concrete ,I said it may be the  ------------- the BENZOS . He didn't agree and I stopped them cold turkey .Now 3 years later I have not fallen ,but I can't walk and have been suffering severly for 3 years . I was 75 and on 8 MD daily of lorazapam and it's supposed to be two MG for two weeks at that age ! Doctors have no clue or they won't admit what they have done due to liability. Don't know how I get through one day as its horrible,and always hope tomorrow will be better ,but it never is!
    • Guest
      Guest kristine58413

      Posted

      I am sorry you are suffering so much and for so long too.  I don't really have any insight into what you are going through.  I sometimes think I too will be permanently disabled and then I hope that I will not as things are better than they were two years ago.  Have things improved for you over the years?  If they have then it is possible they might improve a bit more.  I know some people do still have symptoms after a very long time but they usually say that they have learned to cope with them.  I imagine that I will have to do that as well but hope that any symptoms I am left with won't be too disabling.
    • kristine58413
      kristine58413 Guest

      Posted

      They somewhat improved,but not to where they should be,I still get bad setbacks,and they really get worse in the summer,I still function,and I am learning to live with the six,but I grieve all the time about how much I miss my old self! sad
    • Guest
      Guest kristine58413

      Posted

      I am sorry.  I hope things will get better for you even after all this time.  it is only natural that you should grieve at the loss of your old self.
    • carol84640
      carol84640 jessie51

      Posted

      hi I can relate to everything you wrote,I too have agrophobia made worse now by being forced to come of my benzos l get very confused I never used to be like this,I feel so I'll and things are terrible at home,I can't see me ever feeling any better,I've lost so much weight God bless you I hope u can get better xx
    • jessie51
      jessie51 arnold76584

      Posted

      Hello Arnold,

      I am so sorry that the days are horrible for you,  life should not be like this. When I first  started this withdrawal I remained in a positive state of mind and believed that my life would be improved by not taking this drug, and why not we were told it was bad for us, anyway as time has passed and I am still in pain my optomistic attitude has  long gone.  I can't function properly and each day is a struggle.   Like you I am a pensioner and feel badly let down, this is not how I envisiged retirement.

      One good thing to hang onto Arnold is that you have stopped falling,  at least the worry about broken hips has been taken away.  The fall from the path bench must have been terrible for you,  would have given you quite a shock,  I can understand how you came to stop taking the benzo's.  I wish I could offer help or answers for you but I can't, it would seem that the damage has been done to our systems and we have to accept that they may never recover.  You are right about the Doctors, mine are the same, don't want to know.    Maybe they feel it is not their problem because they were not the ones who put us on the drugs in the first place -  they know better than to allow new patients to continue taking them long term but that does not help those of us who did take them for many years - I was grateful for them when I started taking them, they stopped the terrible muscle spasms I was having, and continued to do so,  it is now that I am off them I have the double whammy of spasms without relief and w/d problems.  

      Keep hoping Arnold,  keep reporting in to your doctors, maybe one day relief will be found,  I hope so.  Wishing you better days in the future.

      Warmest regards

      Jessie x

    • jessie51
      jessie51 carol84640

      Posted

      Hello Carol,

      sorry to hear you also are suffering as a result of coming off the benzo's.  For many many months I kept a positive mind and believed that coming off these drugs would be for the best,  give me a clear head etc, but these last few months my optimism has been draining away.

      Sorry things are so bad at home,  are you not able to get help to improve them,  could social services not offer you any help,  as you have someone who is dependant on you it is very bad that you are left feeling ill and confused whilst being responsible for the welfare of a youngster,  I wish I could suggest who you could turn to and  I am guessing your doctor will have no help to offer re the benzo - no doctor has !   Someone should be giving you support though Carol,  you should not be on your own to struggle and try to cope on your own.   Try to keep your stength up,  keep hoping that life will improve,  and try to eat as well as you can to keep going on,  you are needed so much.

      Thank you for your thoughts,  with all you have it is kind of you,  I really hope you can get some help and that you will begin to feel better - soon as possible.   Take good care of yourself.........

      Warmest regards

      Jessie xx

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