Protracted Benzo withdrawal

Posted by aarniek @aarniek, Oct 30, 2016

Taken of 8mg of Ativan daily in 3 weeks and suffering terribly nearly 4 years now! Unable to walk ,have insane muscle tightness,no memory,tinnius is unbearable,unable to picture things in my mind ! After 45 months it’s worse than ever and 2 neurologists have tried only medications which all made me even worse!

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@erikas

@kevk74 Welcome to Mayo Clinic Connect. You are having side effects from long-term use of "benzos," despite your taking them responsibly.

May I ask what kind of medication, treatment, strategy, etc. you are using now in place of "benzos?.

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Thank for asking. I am finding great difficulty finding treatment in NH. Even Boston, by the sounds of it? A neurologist out of Wentworth Douglas said “You won’t find answers to these questions up here in the “country” (Seacoast NH), “but interestingly enough, you are the second person to ask me about that recently?”

What did I do WAITING 5mths to get to see him? Freak out at my specialist, who coincidentally is the medical director for the biggest REHAB change in NH, and admits they don’t pull many people off benzos. My PCP is ALSO a 15 yr specialist and works for them as well. She too, confirms they just don’t see people who are on daily benzos coming off. Especially not see people who quit suffer these protracted periods? Yet…. I have sought out the ONLY help I could find. (Not a minor place, btw). “BenzoBuddies” and also the “Benzo Information Coalition”. Turns out 100’s per day write of these things? 100’s. Senior members are only allowed to comment at first. It’s very serious stuff? Early on, people don’t have enough distance to see some things take a YEAR to resolve?! Yet, there is “Protracted Group” which you are only allowed after 18mths. According to most senior buddies, many things last beyond the year but resolve 90% by 18mths. Most say the rest is permanent. Sadly that doesn’t seem to apply to tinnitus. I learned on my own, it was like clothing touching the skin, and you no longer “jump” at it constantly touching your skin? After 4-6mths, you accept it, I guess? I can wear headphones again? White noise or TV’s maybe.. it doesn’t seem to matter.

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@sallycanuck

Hi @aarniek,
I am so sorry to hear of your troubles with Ativan and other benzo’s. I can share my story to provide some hope…please don’t be discouraged by anything I share. I don’t know why my withdrawal was relatively easy but here goes…I was on Ativan (2-3 mg daily)and clonazepam (2 mg daily) for over a decade. It was prescribed mainly to help reduce anxiety, although my primary condition was depression. I mainly took it at night (Ativan and Clonaz together) to put me to sleep and keep me asleep. Over the 10 yrs I was also on SSRIs. In the past 4 yrs, they added Seroquel to my drug mix to stop suicidal ideation.On top of all that, I was on hydromorphone and oxy’s for a chronic pain condition.
In the past 9 months, I decided it was time to try coming off of as many meds as possible-I was just so tired of feeling groggy and fuzzy and having little ability to concentrate and experiencing memory impairment. I met once with an addictions psychiatrist who designed a withdrawal schedule for me. I was too afraid to read anything on sites like benzobuddies because people had told me so many bad stories about how it might be impossible for me to come off the meds without terrible side effects. So, I guess ignorance was bliss for me-I really tried to go into the process without reading anything on it.
I decided to get as physically healthy as I could while starting to taper so I started Weight Watchers which really helped me stop eating junk food and highly processed food-I think this made a huge difference for me as I’d never really cleaned up my diet. I lost 35 lbs in the first 20 weeks and was getting lots of exercise- walking 45 minutes/day and swimming 2-3 times per week. In retrospect I think the change in diet and the exercise really helped with lessening any anxiety symptoms as I weaned off the drugs.
We started with weaning me off Seroquel and then we attacked the opiates. I weaned off the extended release opiates first and used the oxy for any breakthrough pain. Then I tapered off the oxy dosage and do not use it at all now. Amazingly it turns out that my pain is tolerable without drug intervention-I was just too stoned all those years to realize the pain wasn’t so bad anymore.
Then we attacked the benzos…starting with the ativan. I tapered off over a period of approx 6 weeks, and boosted the clonazepam while withdrawing from the ativan. In the past 8 weeks I have been tapering off the Clonaz (which was bumped up to 3 mg nightly) and am now down to .75mg nightly. I just saw my psychiatrist and we’ve decided to stay at the .75 level until I get through our rainy winter season here-SAD is an issue for me.
But there’s so much good news in all this. My energy level is good, I wake up alert most days after 8 hrs sleep, I have not had any suicidal thoughts for 2 months, no panic attacks, not clinically depressed, no longer wear plus-sized clothes :)…I’m still a bit overwhelmed by financial stresses but can at least start to problem-solve with some clarity (which had been impossible for the past decade-I would just cry when any of life’s little bumps in the road occurred).
I don’t know what kind of medical support you have available but I have to say that seeing an addictions psychiatrist to develop my plan was an important first step. I also suspect that changing my diet (for real) and getting more exercise played a huge part in my process.
I am mad at my previous psychiatrist (who is now retired) for never red-flagging the long-term impact of the drugs he was prescribing me, but I am so grateful to be off the Seroquel, Ativan and on the way to being off the clonazepam as well.
I still take SSRI’s for the depression but am so happy to be relatively drug-free. I never would have thought I could have reached this place, so please don’t give up. You will be in my prayers and thoughts.

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But how are you now. I was clonazepam 2mg 1x/day at night. I tapered over 12mths+ approximately, but came in with a 22mg/mth 6mth avg which is arguably a little “hot”. 0.75mg ain’t nothing so… K pin is “king” as they say. Supposedly the Cadillac of benzos. NOPE. They are all bad, bad, news. I got really hurt. REALLY hurt, I didn’t even REALIZE 45-60 days out that I took major damage. SEVERE Internal tremor, tinnitus as loud as a freigh train 24/7 that is permanent. 40+ real symptoms. All these things 9mths ZERO medications. The Aston Manual is right. Everything. It’s a living nightmare trapped in your own body. The medical community is ignoring this. I can’t find a doctor that knows a damn thing about it 4 years later. Moderator take notice.

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@kevk74 You are finding great difficulty in finding treatment in your area. Mayo Clinic Connect is an online community where people can share experiences, find support and exchange information with others. Members like @parus @gingerw @thankful @creatineboy have experience with this topic and may be able to help answer your questions. May I ask if you scrolled through the previous posts in this discussion and read the comments and suggestions?

You may find the Chronic Pain group discussions helpful. I have linked the group below.
Chronic Pain group
https://connect.mayoclinic.org/group/pain/

Specifically, you may find these particular discussions something that may interest you. I have also linked those below.
– Alternatives for pain management https://connect.mayoclinic.org/discussion/alternatives-for-pain-management/
– Chronic Pain members – Welcome, please introduce yourself https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/

Since you are finding it difficult to get the care you need in your area, may I ask what your next steps are?

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@num1boxer1919

Keep the faith I know it's tough believe me.. I'm still going through withdrawal myself & its been the toughest thing I've ever went through in my life.. I use to be a amateur & professional boxer growing up I had over 60 fights in the ring & I can say benzodiazepine withdrawal is 100% tougher than any fight I've ever been in especially going through the withdrawals I'm enduring, extremely bad tension, headaches, sweating, shaking, racing heart rate, insomnia waking up all night long you name it.. I sleep maybe 3-4hrs & its terrible hours.. So I promise you are not alone.. What kind of symptoms are you having?? & are you off all your medications?? If your only going through emotional withdrawal that is completely normal I believe that's the longest lasting part of withdrawals.. You have to do things that makes you happy & stay as busy as possible doing anything just to get your mind in a good place, dont let it get the best of you.. How long was you on benzodiazepines?? The longer & the higher dose you were on the longer the withdrawal process.. Your brain is trying to heal it's trying to function normally again.. Because long-term use of benzodiazepines causes brain damage on the GABA receptors of the brain, but in time it will heal.. All psychoactive drugs cause withdrawal but benzodiazepines are the longest lasting withdrawals by any medications out there.. It can last months or years.. Like i said it all depends on how long you've been on them & how much you were taking..

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Hi Boxer
Can you give me an update of your tapering off Benzo Xanax? If you are still online

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Hello, how are you now? Are you able to walk? When was your turning point in terms of symptoms? Thanks.

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@creatineboy

Believe me,I understand. It i stuff. ,whatever form it takes,all that. I recently stopped klonipin after about 10years. I know you are leery of taking other meds, but so far I've tried neurontin and lopressor to help, and Robaxin for the muscle tightness,it really works.
I use a noise maker and an air purifier for background noise.
They say there's a reversal drug called Flumazenil, it is an antibenzo benzo. Returns your chemistry in your brain to right,but it has to be done in a hospital by titrated IV.
Hope you're doing well

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Has anyone had experience with Flumazenil?

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@kevk74

But how are you now. I was clonazepam 2mg 1x/day at night. I tapered over 12mths+ approximately, but came in with a 22mg/mth 6mth avg which is arguably a little “hot”. 0.75mg ain’t nothing so… K pin is “king” as they say. Supposedly the Cadillac of benzos. NOPE. They are all bad, bad, news. I got really hurt. REALLY hurt, I didn’t even REALIZE 45-60 days out that I took major damage. SEVERE Internal tremor, tinnitus as loud as a freigh train 24/7 that is permanent. 40+ real symptoms. All these things 9mths ZERO medications. The Aston Manual is right. Everything. It’s a living nightmare trapped in your own body. The medical community is ignoring this. I can’t find a doctor that knows a damn thing about it 4 years later. Moderator take notice.

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Just out of curiosity, how long did your taper take?

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Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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@basilfawlty

Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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There isn’t much you can to about it. Your doc may offer something to replace the Valium and then you’ll become dependent on that med. There is no help for benzo withdrawal. It could take years for you to feel even halfway normal. Thanks to all the doctors that kept us dependent on these crazy meds for so many years.

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@basilfawlty

Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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@amandaa

Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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The Ashton method is very good but does need to be adjusted at times to suit an individual’s needs. It can be a little fast for some. Just hold if necessary and cut again when you feel better. Tapering Benzos is not a race. Take your time. I personally know of some that have taken 3-4 years to taper. It it was it is. Make yourself as comfortable as possible. You were prescribed these drugs by a doctor you trusted. This is your prescribers fault not yours. There is a lesson to be learned from all our misery. Never ever blindly listen to your doctor. Do your own research before taking ANY prescriptions. Find another doctor if you have to. At the end of the day these docs could care less about us.

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@amandaa

Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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Hi Amanda.
Thanks for moving my post to the appropriate area and thanks also to Sears for your advice 🙂
I officially started my taper in late November 2021 and completed it in the first week in June 2021. I say 'officially' as I spent some months prior to that structuring my dosage to get it to a regular amount per day. Until then I had been taking Valium on an "as required basis" which would be often 1x5mg tablet per day, sometimes nothing for a few days, and up to 6x5mg tablets per day when in "a crisis". This was discussed over many years with my treating GP and psychiatrist.
Looking back, and having read more in the past 6 months, I realise this means I would regularly take nothing then something then nothing then a lot. I'm sure this meant that along with underlying, untreated anxiety I was also regularly dealing with withdrawal symptoms before rebounding by taking more. This was not my intention and it took my wife and I many years to figure out that using Valium in this way for so long was not good. I hasten to add that I only got to this point after my treating doctors assured me this was an acceptable way to use Valium.
As a result, when I decided to get off these things I had to first get to a point of having a regular dose that I could taper from. By November last year I settled on around 7.5mg per day (3 half 5mg tablets).
The tapering schedule was agreed to with my treating psychiatrist and I mapped it all out on a spreadsheet with reductions of about 0.5mg every fortnight. I only up-dosed on 2 days (by a total of 2.5mg) and this was early on.
Incidentally, it was my GP who suggested I had to get off Valium but gave me absolutely no advice of how to do so. So much so that I first tried in August 2020 by going cold turkey. 12 days into that adventure I had massive brain zaps etc and subsequently whacked another "crisis" dose into my system when I had one of the worst panic attacks I'd ever had. Anyway, this caused my wife and I to read up on how to get off safely – the first time I came across Prof Ashton's work. And that is now, history. Except the ferocity of the post-withdrawal stuff is not what I was expecting 🙂
Cheers

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