Long-Term Users group - w/d and recovery after longterm use

[[Mo...]]

Hi Pretty

 

Yeah...I thought they saved my life all those years. They stole it. I too have not created in a long time. I was offered a headlining gig for tomorrow night. I had to turn it down. I really needed it. Yes...it sucks to say the least. I pray that you and I will heal someday...and jam. You can hear my stuff at XXXXXX.

We will both finish our projects someday Pretty.

Best...Marian

 

 

 

Edited to remove personal information - MindSeeker

[[pr...]]

You can hear my stuff at XXXXXXX.

We will both finish our projects someday Pretty.

Best...Marian

 

very cool

 

 

Edited to remove personal information with quote - MindSeeker

[[no...]]

they made me feel a false sense of well-being so I could perform (musician-singer all my life, comedian)

 

marian,

 

i too am a singler/songwriter/musician/artist. benzo's completely stole everything and more... second record just sitting there for over 9 years at producers studio who has given up on me. only released one record so far. just sucks doesn't it? keep strong and hang in there with your taper.

 

pretty

 

Yep!! stole my music career too , singer, song writer ,dancer, loved writing poetry been told it was amazing,along with Sculpting, painting.  Ex supreme athlete, all round sports person, loved being in and at one with nature, climbing,world  travel, Scuba diving.  ''Kitchen scientist'',  loved learning new things and experimenting at home. looking at all sorts under microscopes , Yoga, Tai Chi limitless things.  

 

But I'm looking forward to picking things back up one by one when and as I'm able in time, or trying new things I want to do .  Each day I'm getting less able to do the things I can right now, but its all part of the same journey, I can't change it, I don't want it, but I am accepting it as it is what it is.

 

Nova xxxx  :smitten: 

[[Mo...]]

Nova 1

It is so sad to know how vastly talented we are and not being able to do it. I am older now and feel I can't pick up my career anymore. So sorry for your struggles...and mine. You sound like an amazing person with loads of talent. Keep me posted.

Marian

[[lo...]]

Hi folks

 

I can't read all the posts here because of continuing cognitive limitations. 

 

I do, however, want to give some positive feedback. 

 

Was on 5 mg nitrazepam for 40 years for myoclonic epilepsy.  Assumed it would be a lifelong condition.

 

Was depressed every day for 40 years and took various A/Ds for 35 years.  Tricyclic, MAOI, SSRI, NSRI.

Lost 10 years of my life when I could not work.

 

Ruined my life to a large extent!!  :tickedoff:

No children!!

 

Now 24 months off and almost well again. :thumbsup: :thumbsup:

 

I no longer have epilepsy and have been depression free for 18 months.

 

I was hit hard with physical symptoms esp nerve pain, head pressure and brain squeezes.  In bed 18 months now but starting to get up more.

 

Physical symptoms largely gone.  Emotionally 100%. Cognition improving.

 

Have reduced effexor from 225 mg to 75 mg over the past 8 months.  No apparent withdrawal symptoms but I was very ill anyway.  No depression.  Damned nitrazepam was the cause all along.

 

I feel very well within myself now and am sure this year will see the end of my journey.

 

Length of time on drugs in itself is not a barrier to getting well.

 

Coming to terms with the past is really important. 

 

Look forward, not back and try to remain positive and hopeful if you can.  I know it is far from easy and often impossible.

 

Life can be good again.

 

Hugs

 

LF 

 

 

 

 

 

 

[[Mo...]]

Hi folks

 

I can't read all the posts here because of continuing cognitive limitations. 

 

I do, however, want to give some positive feedback. 

 

Was on 5 mg nitrazepam for 40 years for myoclonic epilepsy.  Assumed it would be a lifelong condition.

 

Was depressed every day for 40 years and took various A/Ds for 35 years.  Tricyclic, MAOI, SSRI, NSRI.

Lost 10 years of my life when I could not work.

 

Ruined my life to a large extent!!  :tickedoff:

No children!!

 

Now 24 months off and almost well again. :thumbsup: :thumbsup:

 

I no longer have epilepsy and have been depression free for 18 months.

 

I was hit hard with physical symptoms esp nerve pain, head pressure and brain squeezes.  In bed 18 months now but starting to get up more.

 

Physical symptoms largely gone.  Emotionally 100%. Cognition improving.

 

Have reduced effexor from 225 mg to 75 mg over the past 8 months.  No apparent withdrawal symptoms but I was very ill anyway.  No depression.  Damned nitrazepam was the cause all along.

 

I feel very well within myself now and am sure this year will see the end of my journey.

 

Length of time on drugs in itself is not a barrier to getting well.

 

Coming to terms with the past is really important. 

 

Look forward, not back and try to remain positive and hopeful if you can.  I know it is far from easy and often impossible.

 

Life can be good again.

 

Hugs

 

LF 

 

Thank you so much for the wonderful words of encouragement.  Keep up the good work with your journey. I see I am not the only one who never had a child which makes me sad, and that depression can lift anyway.

Marian

[[pr...]]

i am surprisingly okay that i never had a child. my songs will always be my babies and i will always have all the time i need for myself. i need that. i always did. if i want to adopt later on i still have that choice but for now withdrawal and my niece are even too much for me. kidding, my niece is adorable and i know when i am well we will be great friends and do many things together and i have so much to teach her.

 

[[Mo...]]

Sad thing is my family is all deceased but for one sister who lives across country from me. Lonely. I am not near any family. I have a husband and a stepson who live with me. My soulmate, Mozart the dog, is 16 and in diapers. Blind too. Still healthy so far but he won't go on a helluva lot longer. I am too fragile to go through another death. Not anyone's.  That is one reason I want to die. I can't handle another one. Too much incredible, sudden tragedies.  I am so sick of laying in bed all day. My body needs to move. Scared to. But this is so unhealthy and won't help the flow of terror and fear.  :'(

[[os...]]

 

Hi gang.

 

I am at 7.125mg Librium (thereabouts), that is not far from 2.8mg Valium.

 

I have been on 24 years, half my whole life.

 

I tapered daily from the start but wrongly thought I could complete the taper in 1 year, how wrong was I on that !!!

 

I lost 70% of my entire dose over 7.5 month and was really very messed up, bedridden by month 5, barely able to bath and dress I was THAT exhausted, I felt like I was 110 years old with an auto immune disease... it was not much fun.

 

I went into a huge fog and yet came out of that into a full window (WOW) and then that slammed shut and went into a bad place, still I pushed ahead and that was the worst thing I ever did in this, to push on when feeling bad only makes things x1000 worse and needless to say I crashed and was in a HELL I never knew existed up to that point and I never, ever use that word unless it is warranted (often I think it can be used for effect or drama).

 

Body cramps, huge terror, panic like I had never known and I thought I was going psychotic, I even craved which was real intense... needless to say this was intolerable, waking up with huge electric surges through my body and a sense of imminent doom the second I opened my eyes... these were cortisol surges on crack... it was hardcore !!!

 

I updosed to get stable as I was in such a bad way and a week later I was crying with relief as I felt my sanity return and I swore before that I was going crazy.

 

That was at 4mg Valium equivalent, apparently many people get hit hard at that dose, I know I sure as hell did.

 

Anyways, fast forward from February 2012 when I crashed to now, a LOOOOONG time since and have been tapering very, very slowly down and I crawled down from 4mg V equiv to almost 2.8mg V equiv now.

 

My mind has cleared a lot in the past year and even more so in the last few months but at times this new clarity is TOO MUCH and literally EVERYTHING is TOO MUCH !!!

 

I choose now not to watch films as they are too stimulating, I do not even think music is good for me right now either, basically, anything that stimulates the senses feels bad as it did some months ago but now I feel almost intolerant to anything and everything.

 

I cannot seem to get below 2.8mg Valium equivalent (7mg Librium), it is like my brain just will NOT allow it.

 

I have tried 3 times now and every time I get bad anxiety, everything changes and I cannot feel at ease in my body at all, it is like constant adrenaline... I just want out and it can be pretty distressing because my BRAIN seems to stop functioning also and that really freaks me out.

 

I am HOLDING here now and my plan is to TRY and taper down more by diluting my doses from 114ml (amount left to taper) to 300ml and keep my cuts low, it is literally all I have left to throw at this thing because I am pretty close to going back on, which would be a real shame after almost 4 years of struggle... but I am starting to feel life is too short for this now and so this plan of mine is more than likely my last because I simply refuse to break my brain and lose my sanity and be sick for years and years to get free... if a slow taper heals, I should get the green light at some point and be able to get lower without feeling terrible...

 

We shall see... I have been at this a long time and had I known, I would have gone x3 slower at the start and saved myself a whole bunch of suffering and I would more than likely have been off by now, or close to it.

 

Not sure how this is going to play out but reinstatement is on the table... I will never reinstate without a lot of thought, I have been thinking of it a lot in the last 6 months so if I ever do reinstate, I will know I took this as far as I could at this point, life is passing me by now and after 46 months this has to start getting better soon... although I can say I do feel I have my mind back a fair bit now when I am stable and it makes me think it would be nice to eventually pull this off but quality of life is a factor now and my ability to cope with the rest of this taper, it may not be in my best interest but I keep trying anyway.

 

 

[[lo...]]

Sad thing is my family is all deceased but for one sister who lives across country from me. Lonely. I am not near any family. I have a husband and a stepson who live with me. My soulmate, Mozart the dog, is 16 and in diapers. Blind too. Still healthy so far but he won't go on a helluva lot longer. I am too fragile to go through another death. Not anyone's.  That is one reason I want to die. I can't handle another one. Too much incredible, sudden tragedies.  I am so sick of laying in bed all day. My body needs to move. Scared to. But this is so unhealthy and won't help the flow of terror and fear.  :'(

 

Hello Marian

 

I am glad my post gave you some encouragement.  I am sorry you are so unwell.  I am also deeply sorry that you lost your mother at such a young age and in such a tragic way. 

 

My family is mostly deceased too.  I too have one sister at the other end of the country.  My friends are my main support.  I live on my own but don't feel lonely now that the depression has gone.  I did feel lonely for 40 years on nitrazepam. That drug seemed to cut off my emotions to a large extent.  Never felt happy.

 

I am sorry your dog is old and blind. We get so attached to our pets, I know.

 

I can only hope that things will get better for you.  I have just come through another period of excessive sleeping and feel a little bit better than before it started. 

 

We can only keep taking things a day at a time and hoping for better things to come.

 

Hugs

 

LF 

 

 

[[lo...]]

Oscar

 

So sorry you are having such an awful time.  You have done so well to come this far.  I hope some day you will get off the valium but as you say quality of life is important and we have to weigh up the pros and cons.

 

Best of luck

 

Hugs

 

LF 

[[Mo...]]

LF and Oscar....man I feel for you. Oscar I understand. I think it may be better to reinstate in order to have a better quality of life. I think about this too. I began a liquid klonopin taper two nights ago (using water) and I am in Hell before this trying to taper during Hell. May not be wise. I just want to see if benzos have turned on me and are actually the culpriy. But can't know yet. Saw a pdoc yesterday who doesn't think benzos are doing this Hell to me. Moron. I have been on them for THIRTY NINE YEARS!!! I have PTSD. I know what you mean about sound being harsh. I even hate daylight now. Firsttime ever. LF my sister and brother-in-law just visited last week from Maryland.  I am in Oregon.  It made me feel so much worse. She was mean to me and couldn't handle the Hell I was in. I woke up today very suicidal. I keep trying to talk mysel8 into making today the day. She really hurts me. I am glad you are not lonely anymore. I agree...perhaps if I weren't so depressed I woukd not want to die because of hef (and benzo hell) and use myself as the weapon. But I want her to know how bad she has hurt me for years.

[[os...]]

Oscar

 

So sorry you are having such an awful time.  You have done so well to come this far.  I hope some day you will get off the valium but as you say quality of life is important and we have to weigh up the pros and cons.

 

Best of luck

 

Hugs

 

LF 

 

Thanks LF.

 

I think what gets me most is how so many seem to suffer for years once off this stuff.

 

There are admin here and others who say that when people finish their tapers they are out there living life and all is good...

 

Not sure I buy that, not at all.

 

I was pretty much told that tapering slowly to zero would see this thing off but if anything, tapering down in these last mgs is the HARDEST part and I can understand just why so many get impatient and rush the last mgs just to "be free" and yet rarely do I see anyone on here who is "well" by doing so...

 

I mean, I will have been at this taper 4 YEARS by the start of June, I mean, just how long is one supposed to do this for and then there is the eventual post taper and it seems rare to me that healing comes quickly, yes, I think within 1 to 2 years after a really slow taper but at the rate I am going I can't see me ever getting off the stuff, the most I can realistically taper to is 2mg Valium equivalent and at that point, if things are not much better I would more than likely reinstate based on the fact I know that jumping from 2 mgs or even doing faster cuts would be horrendous.

 

I am bored of this now, seriously VERY bored and I am starting to think that a life back on the drug and forgetting all this nonsense would be far better...

 

I still do not know what to do yet, I feel OK right now but I know as soon as I start tapering again that freaking horrible anxiety will return and my brain will go blank almost and I'll find it hard to THINK again.

 

Personally, I think/feel I have given this enough time, the fact that I have to go ever slower simply to maintain some function means this will potentially take me years and so it seems to me to not be worth it any more...

 

I will be looking at 10 years total from start to finish to get free... that just seems insane to me yet what is even more insane is knowing how much I would suffer if I tried to lose these last few mgs in a reasonable time frame... yes, I could do it but I would more than likely be full of anxiety and fear and depression and barely able to function, if one steps off benzo's in bad shape it can take 3 years to heal and that is after a very slow taper... either way, no matter how I do this I have at least 5 more years of this crap and that is on top of the 4 years (almost) that I have already put into this... so I have to ask myself if this is really worth it.

 

I am starting to seriously doubt it and I can't say for sure I will even get to 2mg Valium equivalent at this rate, I refuse to go crazy doing this or break my nervous system completely, if this is going to be close to impossible, then my Doctor will have to reinstate me and I'll be on this chit for life...

 

Sorry others are struggling here also, I don't know where everyone is at in recovery, try and keep family members or anyone who causes stress out of this... people who are not supportive are not worth our time right now and ending it to get back at someone is just crazy... love you for you and ignore anyone that causes you to feel bad, no matter who they are...

[[lo...]]

Hi Marian, Hi Oscar

 

You are both suffering so much. I am so sorry.

 

Marian

 

I am sorry your sister made you feel worse.  My sister often does that to me so I now keep her at arm's length emotionally by limiting contact.  She has hurt me terribly over the years.  I have found a better way to cope by changing my expectations of her.  I don't expect her to support me any more.  My friends do that.  When she disappoints me or hurts me I try to just accept that is her personality and let it go.  She does it to other people, not just to me.  We are like chalk and cheese but that is no reason to be hurtful.

 

However, when depressed it is very hard not to be very affected by these things.  Try not to turn your anger against yourself.  You are important, your recovery is important, your sister is less important right now.  You are very vulnerable and need to put yourself first. 

 

I am sorry your doctor was no use.  Mine have been the same.  As long as you can get the drugs you need to keep tapering, that is what is important.  We can get support here.

 

Oscar - If I were you, I don't think I would want to spend more years on benzo withdrawal.  My approach was try it and see how it goes.  The same with effexor which I am still tapering.  I would have stayed on drugs if that had seemed the most practical option.  I don't know about reinstatement though.  Would that work?

 

You really are in such a difficult position.

 

I am off to sleep now.  I hope.  Been awake all night and all day so hope to sleep.

 

Hugs

 

LF 

[[wa...]]

Hi Guys.

I'm not looking to be benzo free anymore.    If I get down to 3mg of diazepam I will

be happy to stay on that dose as I'm suffering from other illnesses and it's not worth the mental torture.

[[MT...]]

Hi. I just found this thread and it feels like home. I'm starting to face just how long I've taken benzos and it's longer than I thought. I started intermittent use 27 years ago, over half my life, until it turned into daily use and high doses about 18 or so years ago. I find on many other threads that the things people say who are short-termers don't apply. It just plain seems to take so much longer to heal for long-termers and it's hard to sustain this level of suffering.

 

I wd once completely then reinstated three times a week to get through what I thought was a medical problem to help with incessant insomnia. I'm not as sick as I was even 6 weeks ago but I'm only getting any sleep (crappy, broken, short sleep) 3-4 times/week when I take some kind of medication. I haven't had any natural, non drugged sleep since December and at times I despair that it will ever come back or that I can do this another day. I see that I'm getting physically stronger with exercise but it's a constant struggle and I'm so tired.

 

I saw my cardiologist today and he was disbelieving all of this is wd and wanted to run more fancy tests. He couldn't believe it averages 6-18 months and can take even longer. I'm at 4.5 months. I want this to be done. I appreciate that all of you can understand and I'm sorry for how you are suffering.

 

Oscar, I totally identify with that feeling that "everything is too hard." The most absurdly small things feel overwhelming. This seems almost impossible for most family and friends to understand which leads to feeling alone and keeping things to myself. I know my husband is ready to have a wife again. All I can do is fake it most of the time and be a partial stepford wife. He's a good man and deserves better. But none of us deserve this either Thanks for listening and having this thread.

[[Mo...]]

Hi MTfan

I can relate. I have been on benzos 39 years. I have probably had little REM sleep all that time. Benzos have kept me in bed all these years though along with anxiety, PTSD and depression. Most docs don't believe me either.  I keep trying different tapers over and over not knowing what to do. I thought I had this. I am on .5 K 3x day every 8 hours. I finally learned how to do all of my 3 doses in water. Titration. Then I am told pulling 1 ml drug water out per day is toofast. But Iit's 250 ml. water. 8 month taper. Not fast. Now I am back on dry pills and lost after 4 days on liquid. My husband needs me back too. People want me to stay on benzos instead of being in Hell. I want off. Do you know a good dry or liquid (has to be water...I have all the equipment including a mortar and pestle) taper that is VERY simple? I cannot do percentages or math. Don't want to more than I have.

Let me know.

Meanwhile, I hear you. I understand. Keep going. I feel for you.

Marian

[[os...]]

I finally learned how to do all of my 3 doses in water. Titration. Then I am told pulling 1 ml drug water out per day is too fast. But it's 250 ml. water. 8 month taper. Not fast.

 

Marian,

 

How have you come to the conclusion that an 8 month taper is not fast??? You have been on the drug 39 years and yet yo expect to reverse all that in 8 months???

 

Look around at this site, the people suffer for one reason and one reason only, they taper too fast, make big cuts and do not hold long enough, the result is huge symptoms and suffering.

 

I lost 70% of my total dose in 7.5 months and that messed me up big time, I was naive then, if only I knew then what I know now.

 

Too faster taper means damage to the nervous system and a whole bunch of suffering.

 

It's all here on this site, you have to be smart enough to look at what works for others... heck, many on here did a 2 year taper and that was too fast.

 

It seems to take anywhere from 3.5 years to 5 years to heal from this, IF we heal as we taper, in MY reckoning, long term users should taper for 3 years at least UNLESS able to taper with little or no life ruining consequences.

 

We do not have to suffer but many of us do, purely by being impatient.

 

8 months is not a slow taper, not for someone on many years.

 

It may be wise to look at this as a longer term process, yes, we CAN push down faster but at some point we invariably crash and that is when the real suffering starts...

 

Why suffer more than you need to?

 

If I had to do this again I would take 6 years, I would make small cuts daily and have breaks of a month often to allow my brain to catch up, I believe doing this would allow a somewhat OK quality of life.

 

Certainly anything less than a year from a long term user to my mind is pretty ambitious... remember many here go on to have symptoms for 2-3 years post taper, so unless you are prepared to wait out healing for 1,2 and 3 years, you may prefer the slower taper but only you can know what is best for you.

 

Maybe slow tapers do prolong this but I have tried the faster route and it always ends up with my mental health taking a dive every single time.

 

 

[[Mo...]]

Oscar I know...but I am in too much Hell during even this tolerance withdrawal with NO cuts. I gotta get off.

[Guest [jc...]]

What about those of us who were forced to cold turkey?  Does this mean longer healing time?  I am still having many problems but don't see myself as doing worse than those who have tapered.

[[Mo...]]

Oscar I hear you. But I do not even know HOW to taper anymore. I don't know what to do. Dry or liquid.nor how. And I want a simple way. I can't figure percentages or anything like that.  I need HELP

[[pr...]]

I haven't had any natural, non drugged sleep since December and at times I despair that it will ever come back or that I can do this another day.

 

 

2 1/2 years and some sleep is just now returning 3-4 nights weekly and still have bouts of hard core insomnia on the other nights.

 

i understand about not being able to taper, i tried for 9 years but always went too fast because i didn't know. if i had to do over again it would be ever so slow and for as many years as it needs to be. it's the only way too get off this drug safely.

 

What about those of us who were forced to cold turkey?  Does this mean longer healing time?  I am still having many problems but don't see myself as doing worse than those who have tapered.

 

i ask myself this too but i would venture to guess i am in far worse shape than someone who tapered slowly. i see it in my mother who took over 2 years and was functional the whole time. she is still with symptoms but nothing compared to me.

 

anyone who doesn't know how to taper or just wants off the drug should put all their effort into figuring out how to do it slowly because you also don't want the drug to start being paradoxical on you.

[[MT...]]

Marian, my slowest taper was over 5 weeks at 0.25 mg/week--way too fast. Somewhere on BB there's a chart that breaks down the math for you. I tried to find it again and couldn't. If you go on the taper section there are people who will help you with the math. I'm not good at math either.

 

I've wondered too about the taking a long time to taper vs. hard time in wd issue. From what I've read this is what I see: if you're a long termer there is no fast way out of this (this seems to be true for many of the short-termers on low doses though too). So we can suffer through a milder experience by tapering over a long period of time like Oscar says and have an overall milder wd or we can go faster, suffer a hell of a lot more and then be in for a more prolonged recovery (cutting time off the taper seems to tack on time post jump/ct).

 

It doesn't always work that way but that seems to be the prevailing trend. If I had it to do over again I would have just come off ONCE and I would have tapered SLOWLY. But it's done now.

 

PD, I'm sorry to hear about your continuing sleep problems. I'm glad you're getting some. What are your tricks for staying sane while sleepless?

[[pr...]]

PD, I'm sorry to hear about your continuing sleep problems. I'm glad you're getting some. What are your tricks for staying sane while sleepless?

 

actually i am quiute happy that i am finally having 3-4 nights of good sleep for 8-9 hours. i don't know how i've stayed sane throughout this whole process and there have been times when i lost it and i also thought i could really snap. distraction is your best friend when going through this. i just keep believing in my healing and that one day things will feel differently. i am constantly telling myself "it's all withdrawal and will change" -- i've had 7 partial windows where normalcy returned so i know it can happen fully at some point. i do know i am still in it for the long ride.

[[on...]]

Hi wannafeelwell,

 

I don't have any other health conditions, but I hit up to 30 mg. Xanax daily at my worst and I'm down to 1.365 mg. of klonopin over 15 months.  I'm really struggling to work and be a parent.  I know my stress may not be as bad as what you feel with your medical condition but I feel like if I don't take a break from tapering I won't ever get on my feet again.  I'm pondering trying to find a new doc that will keep me at my current dose so I can return to society.  I like to tell myself that I've cut about 95% from where I was.  But every cut is getting hard.  It's so hard I just want to stop now and live.

 

Anyone else felt like this and tried it?  Or is everyone pretty much agreed on the 'get your freedom from benzos?'  I know that's probably best, but I feel like I don't have many more months to keep doing this.

 

Hope your health is okay wannafeelwell.    Don't give up on whatever is best for you.