Never thought it would end. It's over.

Howdy,

It's really easy to move on now and not post a success story.  I don't want to look back, but I'm doing it now.  Remember to post yours when it ends for you.  Now that I got that out of the way, here's my tale:

 

I was on benzos for about 15 years, first to last pill, daily most of the time.  Started out on Ativan 3mg a day at nearly 29 years of age, ended on Klonopin (clonazepam) 2.5mg a day before a long, long 15 month taper off the clonazepam that ended a few months before I turned 44 (I am nearly 46 now).  I got my first pill in an emergency room, took my last tiny sliver of a pill at home 15 years later.  It was the most effective medication I ever took for my anxious, paranoid, depressed personality.  It was also the most addictive (physically) medication with absolutely horrifying withdrawals.  I took my very last benzo almost exactly two years ago.

 

If you are reading this and you're saying to yourself, as I did,"This will never end.  I will never ever be like those who are so lucky they actually get better.  I'm doomed for the rest of my days..." You will eventually be in for a very pleasant surprise.  I know I was.  I kept looking for success stories, and there weren't enough of them.  As I said, people move on from here.  I haven't posted here in months.  I'm surprised I remembered to, but I figured I'd try to be helpful. 

 

I had so many symptoms during my taper and withdrawal, I can't even remember them all.  I'll just give you the ones I remember: insomnia, paranoia, nerve pain, head pressure, body jolts, numbness in face and extremities, benzo belly, crying spells, entire body swelling, rage, excessive sweating, incontinence, a very tight feeling in my throat, chest pain, major food sensitivities, double vision (very rarely), and a strange feeling that my body was held together by rubber bands.  In total, I was sick for over 3 years coming off of benzos.  3 years.  In the last month or two, I have not felt any serious nerve pain, but it may come back.  I'm almost entirely healed - almost entirely back to what I remember to be my "normal" self.  Truthfully speaking, I was never "normal" to begin with - hence why I was put on benzos and anti-depressants for 15 years.  I'm on absolutely zero drugs now, aside from the occasional beer or glass of wine.  I still have horrible insomnia problems - but I have had those my entire life.  It is nothing new to me.  I am also rather naturally paranoid.  It is possible that I am more paranoid and prone to insomnia than before - but it's hard to say.  However - I am not walking around feeling like somebody hit me in the head with a baseball bat.  I no longer have to shave a totally numb face - I can't tell you how weird that one was (went on for months).  I no longer leak like a faucet and have to change my undies because I can't control my bladder.  I don't wake up crying for an hour every single morning of my life (that one went on for a year).  I don't think my car's engine is going to explode every time I drive it.  I could go on and on. 

 

So yeah, I went through just about as bad a withdrawal and recovery phase as anybody.  I had to watch what I ate, went days without sleep and then drove myself to work (that was fun), laid in bed sick on my free time for about 2 years or so (all through the taper, and the first year or so off).  It SUCKED, but it's over now.  I can pretty much eat whatever I want without major flareups of symptoms.  I can drink alcohol without issue (having a beer as I write this).  If I had to put a number on it, I'd say I'm about 90-95% healed - maybe more.  As I mentioned I was never 100% "normal" to begin with.  Plus, I'm middle aged now (almost 46 years old) so perhaps I've got the usual wear and tear issues people get in their 40s if they don't live the healthiest lifestyle. 

 

Here are some other things might be worth mentioning to you that I went through during the taper and withdrawal. 

I got married, I changed careers (couldn't deal with the stress of my previous job during withdrawal), I took classes at school and passed, I kept a social life some of the time (sometimes I couldn't do things), I moved twice. 

 

My life isn't perfect.  It never was, it never will be.  I have a lot of crap to deal with.  15 years drugged out on psych meds, and then dealing with the withdrawals, I missed out on a lot of life.  There are many years of my life I can't really remember clearly.  Sometimes I want to take a pill and relax - even after all I went through - but I know better and that urge fades - it's only when I'm stressed out.  I'm OK now.  I never thought I would be. 

 

I do not hate benzos, though I most certainly did during the entire withdrawal period.  They did save my butt in the ER way back when I took them that first time.  I would have been locked up in a mental ward.  Might be there still, who knows?  They saved me, but then they hurt me.  It was my ignorance of benzos that hurt me, not so much the benzos themselves. I don't see myself ever taking a benzo again - at least I hope I never do - but I am not knocking them as a med.  If taken on occasion or for short periods of time, they are very effective.  A person can function on them (for a while) and not be a burden on family or society.  So what I'm saying is - I'm not a hater of benzos - even after what I went through.  You may know what i mean some day - probably not today though - OK -you get my point. 

 

So if you're going through hell, just keep going.  When I was really suffering, I used to read the success stories and think those people were lying that they recovered.  They probably weren't.  I'm not.  I'm really better, and I can't see why you won't be better too.  Time is the healer, and when it finally clears up, you won't hardly remember what you went through - unless you sit down and think and write about it.  Best of luck, buddies.  You can get through this, but it isn't a quick process - BUT IT DOES END.  Peace.

Snurkel71 I thank you for your honest and revealing post...very uplifting and I am so happy for you!  It was very kind of you to return and give hope to those of us still in recovery!!

Choco

Thank you...and good luck. It is nice to read annother success story.

Thank you for writing this and well done for making it through. It is the hardest thing ever................... 

Thank you so much for coming back to write your success story! Congratulations too! You achieved so many things despite your withdrawal, so that's seriously impressive. Best wishes to you!

Thanks for sharing this I will show this to my wife when she's in her one darker moments. 

 

One question for you though.

 

As you were tapering down, do you feel like you were getting better, recovering so to speak? There's a lot of debate on here whether one recovers while taping OR only after completely off the benzo.

Thank you for taking the time to write a success story. There are many that move along without writing one. Your story is inspirational. I am happy for you. Well done. You did it. "It's over!" :smitten:

Thanks to all over you for replying to my story. 

 

Navita65 ,as to your question - while I was tapering things were up and down.  My taper took 15 months.  Initially it started TERRIBLY when I dropped from 2.5mg to 0.75mg of clonazepam in about a month per my psychiatrists instruction to do so.  That was an awful way to start a benzo taper.  I went back up to 1.0, got a new psychiatrist, and he let me slow way, way down at my pace.

 

That was probably the most important part of my taper for me - that I go at my own pace.  That initial drop, I think, was the absolute worst part of my taper and possibly my entire experience.  It took me about 5 months to "normalize" from that.  It was bad pretty much the entire taper.  Thinking back on it, I believe it was the taper when I had my crying spells every single morning for an hour.  I couldn't control that.

 

When I jumped off, that's when I got a lot more physical symptoms - I went numb, the belly and swelling issues, etc. were all increased.  So my tapering period was very problematic.  It took me about 13 and a half months to get down from that last 1mg (including that 5 month "normalizing" hold).  So my tapering period was pretty bad for me.  If I went slower from the get go, it is possible I wouldn't have suffered so much.  I didn't feel any healing truly until I got off it, but perhaps I was healing the whole time.  Blasting my GABA receptors with 1mg of clonazepam daily is better than blasting it with 2.5mg, so it is possible I was healing.  I don't think I ever felt worse during the whole process than that initial drop, though.  Panic attacks, everything - and I was so stubborn/determined to get off the stuff that I wouldn't go up higher than 1mg a day. 

 

My physical symptoms got significantly worse once I stepped off at .0625mg of clonazepam daily.  At that dose, my mind couldn't feel any relief from the drug.  Apparently, my body noticed it, though.  Just a few days after I stepped off and stopped taking the stuff, my body just freaked out and I got way more physical symptoms.  I would go down in spurts and stops.  THe last 0.5mg took me about 3 months.  I'm talking clonazepam here, so if she's on a different benzo, you'd have to calculate the difference.  Plus - everybody is different.  Nobody's experience is exactly the same.

 

Anyway, I hope I answered the question.  My opinion - and it isn't a fact of course - is that any reduction in the amount of benzo, if it is significant, is a step in the right direction.  I hope your wife feels better soon.  I put my wife through hell with this process.  Standing by somebody going through something like this is a good move, so long as they actually quit, because in the end - they will be their old selves again.  You can't always get that with other big health problems - get the whole person back at the end - so look forward to getting the person you knew back in your life eventually.  She's just going to be sick for while.  Best of luck to you. 

Well said, snurkel.  And thank you for coming back to post your story for those who need to know they will also make it through.

Challis 

Wow, this is very encouraging - thank you for taking the time to come back.  I plan to do the same one day, because these success stories are my lifeline right now.  You've accomplished some amazing things while you were recovering!  Kudos to you!  I think  you'll continue to see improvements, especially with your memory.  Studies with alcoholism have shown that cognitive improvements can be measured for seven years out, and alcohol damages GABA receptors too, so I think it's save to believe we'll continue to get better and better.  You may also find other non-pharmaceutical ways to heal from anxiety and paranoia - keep searching.  I wish you a beautiful life - enjoy it!! 

Thank you for coming back and let us know it will end. So happy for you. Hoping one day I will write my success story too.

Still bad shape 10 months out but very slow improvement here and there. I'm very greatfull for that. Thanks again!!!

Love, pray and healing for everybody!

Thanks for posting your success story, and happy for you that you are enjoying some of the pleasures of life again. We definitely need to hear more stories like this; this is why we joined the forum in the first place. Coming off benzos is one of the hardest things one ever can go through, but on the other hand I can also imagine what being off of them and returning to 'normal' is;  there is nothing more that I want in my life. With this experience I am positive that I will handle all the stressors that may come my way without a benzo. In the last two years, I have grown immensely as a person and learned so much. I still have a few months of tapering, but fortunately I am a 100% functional (I have been through some intense but short, awful symptoms and stabilized). I may be doing some good things or my body can handle better withdrawing from meds, but I don't pass a single day that I thank God for giving me the fortitude and resilience to withstand this. We all can do it! Good luck to you, much blessings!

Thanks to all over you for replying to my story. 

 

Navita65 ,as to your question - while I was tapering things were up and down.  My taper took 15 months.  Initially it started TERRIBLY when I dropped from 2.5mg to 0.75mg of clonazepam in about a month per my psychiatrists instruction to do so.  That was an awful way to start a benzo taper.  I went back up to 1.0, got a new psychiatrist, and he let me slow way, way down at my pace.

 

That was probably the most important part of my taper for me - that I go at my own pace.  That initial drop, I think, was the absolute worst part of my taper and possibly my entire experience.  It took me about 5 months to "normalize" from that.  It was bad pretty much the entire taper.  Thinking back on it, I believe it was the taper when I had my crying spells every single morning for an hour.  I couldn't control that.

 

When I jumped off, that's when I got a lot more physical symptoms - I went numb, the belly and swelling issues, etc. were all increased.  So my tapering period was very problematic.  It took me about 13 and a half months to get down from that last 1mg (including that 5 month "normalizing" hold).  So my tapering period was pretty bad for me.  If I went slower from the get go, it is possible I wouldn't have suffered so much.  I didn't feel any healing truly until I got off it, but perhaps I was healing the whole time.  Blasting my GABA receptors with 1mg of clonazepam daily is better than blasting it with 2.5mg, so it is possible I was healing.  I don't think I ever felt worse during the whole process than that initial drop, though.  Panic attacks, everything - and I was so stubborn/determined to get off the stuff that I wouldn't go up higher than 1mg a day. 

 

My physical symptoms got significantly worse once I stepped off at .0625mg of clonazepam daily.  At that dose, my mind couldn't feel any relief from the drug.  Apparently, my body noticed it, though.  Just a few days after I stepped off and stopped taking the stuff, my body just freaked out and I got way more physical symptoms.  I would go down in spurts and stops.  THe last 0.5mg took me about 3 months.  I'm talking clonazepam here, so if she's on a different benzo, you'd have to calculate the difference.  Plus - everybody is different.  Nobody's experience is exactly the same.

 

Anyway, I hope I answered the question.  My opinion - and it isn't a fact of course - is that any reduction in the amount of benzo, if it is significant, is a step in the right direction.  I hope your wife feels better soon.  I put my wife through hell with this process.  Standing by somebody going through something like this is a good move, so long as they actually quit, because in the end - they will be their old selves again.  You can't always get that with other big health problems - get the whole person back at the end - so look forward to getting the person you knew back in your life eventually.  She's just going to be sick for while.  Best of luck to you.

 

Thank you for that info snurkel.........she's been sick for well over 4 yrs but improving. Recently went to a LMT of 13mg of V which I believe is helping. The sxs are there it seems, BUT not as intense as the dry cuts were. She's far from a burden for me at all. I want to do everything in my capabilities to get her better, I know if the shoe was on the other foot she'd do the same for me......and probably more.

Thank you for writing this!

Congratulations  and thank-you for your inspiring post 

Thank you take care

Thank you so much for writing this success story. This gives me  lots of hope and its nice to read success stories.

 

One question, did you have dizziness feeling, feeling like its going to fall over when you walk (dp/dr) and when did you notice it start to fade? As almost 9 months out, I feel I am improving very slowly, but the dizziness falling out, dp/dr has been driving me crazy lately.

 

Tracy

Fabulous Success Story!  Thank you so much for posting it.  I couldn't be more happy for you, sincerely!  I wish you every happiness that you so richly deserve!

Thank you so much for writing this success story. This gives me  lots of hope and its nice to read success stories.

 

One question, did you have dizziness feeling, feeling like its going to fall over when you walk (dp/dr) and when did you notice it start to fade? As almost 9 months out, I feel I am improving very slowly, but the dizziness falling out, dp/dr has been driving me crazy lately.

 

Tracy

 

Hi Tracy,

 

I only got the dizzy feeling a little bit - not too bad - slight vertigo but it never got to the point where it really held me back, but I know some people get it really bad.  I'm not sure if that's related to issues in the inner ear with withdrawal.  I had tinnitus really, really bad when I was cutting down, and then for a few months after I stopped.  That went away within the first year after I stopped taking the benzos completely.  I had a few symptoms that were pretty indescribable and maybe that was the dp/dr, but that pretty much left by a year.  My worst physical symptom that I suffered from was nerve pain - a crazy, irritating burning feeling as if chemicals were running through me, especially on my arms and hands.  That took about 23 months or so to clear up.  Haven't felt that one in a month now, happy to say.  The long, long list of symptoms will become fewer and fewer as the months go by.  In my case, it took about 2 years for the last of them to leave and that was after 15 years of fairly heavy daily benzo use.  I hope your dizziness clears up faster than that. 

Thank you so much for your candid words of encouragement.  I've had an extremely difficult past few days within my taper and your story helped bring hope back to the forefront.  Sometimes, that's all we have.

 

Like yourself, these drugs once saved my ass and then they didn't.  If only (like most of us) I knew that my ass shouldn't have taken them longer than a few days. It doesn't help me to demonized the drugs or get resentful about the lack of knowledge among the medical community.  It doesn't help my taper and withdrawal in the least.  The only thing we can do about it now is hunker down and fight the good fight.  It's a battle for our right minds and a new life.

 

Thank you for coming back and sharing your experience and hope!

Hi Snurkel,

Yours is one of the loveliest Success Stories I've read;  I love you for your attitude, and salute you for your journey and success.  I love that you're having a beer and that you still sometimes have insomnia.    I love how you don't hate benzo's  (me neither, and I'm getting over my 'doctor distrust');  I love that you've socialised, changed jobs and moved and still managed, and figure you must have had a lot of faith to keep on carrying on.      We're never going to be spring chickens again, but I'm celebrating that I'll never have to go through that particular set of sx's that WD-producing fear aside,  had the added terror of limited support and lots of ignorance.    BB has been a Godsend, although sometimes I stay away for a while to try to concentrate on the wonderful positives that have happened.  However, I hope to be able to contribute a success story before too long, and come back to give others confidence and hope in the dark non-linear voyage we're on.

 

Many many thanks for returning!!

thank you for your post,gives me hope. glad your doing better 

Thank you so much for posting this!  I am 22 months from c/t and losing hope that my gut will ever heal. This has help so much. Kristina said it best and I feel the same. Thanks again!!

Thanks Snurkel71!  Great job on your recovery!!

 

I am not quite ready to post a recovery testimonial myself, but am oh so much better than I was. 

 

To Navita65, I have an opinion about healing.  I think when Heather Ashton commented about healing not occurring until one is off the drug, she meant 'complete' healing will not occur until post taper.  To me, that makes sense.  But what also makes sense to me is that every time we reduce our dose during the taper, we are only able to do that because we have healed a little after every dose reduction we have made so far.  For example, I went from 18 mg of valium to zero over a 10-month period using liquid valium starting at 10% then going to 5% every 10 to 14 days on average.  A few times I took a little longer to level out.  But I could never have gone from 18 to zero all at once.  That means to me that my receptors were in the process of healing to some degree every day of the taper or else I could not have made the dose reductions. 

 

It may not feel like we are healing during the taper because we continue to feel bad.  But what I kept reminding myself was that I WAS healing all along because though I wasn't feeling better yet, I was on less and less of the drug!  That has to be healing in my book!! 

 

I expected to be my old self much sooner post taper, so that was a bit disappointing to me, but as I took note of my symptoms over the months benzo-free, I kept noticing some getting better and some disappearing.  Sure, there were some waves, but now I'm feeling so much better, the healing is really clear now. 

 

Anyway, my two cents is that none of us could get through the taper reductions over and over if we weren't healing!!

Another one that confirms my suspicion.

 

The physical stuff (nerve pain, tinnitus, sweating, insomnia etc) does eventually heal. This is what I keep saying.

 

But for those suffering with cognitive stuff... the picture looks much, much more grim. I don't believe everyone will heal back to 100% of their pre-benzo mental faculties. In severe protracted cases it seems that it very very marginally improves over the course of years but evidence that I'll ever have my pre-benzo cognitive abilities back in their full potential is extremely slim. I will probably heal enough to be able to carry on trivial conversations (on the level of small talk) in social situations over the next several years but my cognition will never be sharp again. To design large-scale, extremely complex industrial automation systems (my career prior to this mess) ever again? Fucking laughable.

 

For a lot of us with the cogfog/dp/dr.... we are likely fucked. Meet our new normal.