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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@ejezbeta

I think that I would look upon them as a questionable sometimes necessary evil. Recent studies claim that 85% of people over 70 on a Benzo will develop a form of dementia. Not worth the risk in my thinking.

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I actually had this conversation with my psychiatrist this week because I've seen some of those same articles. Her wise and experienced reply was that the meds MAY cause dementia somewhere down the road but at this point, there is nothing definite and it could be just as easily dementia from genetics, old age, alcohol etc. Rather than worry and stress about what MIGHT be, I would rather live with some more mental stability in the here and now. I equate this concern to those who need a knee replacement but are only in their 50s so they plan to wait till they are in their 70s so it doesn't need to be done twice. 20 years of pain and reduced mobility vs. the unknown? Seems like a no brainer to me

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My doctor just recently prescribed Remeron (Mirtazapine) to help with sleep as I near the end of my taper. I'm currently down to 0.25mg of clonazepam. Does anyone here have any experience with Mirtazapine for sleep? I'm taking 7.5mg which is half a pill and seems to have restored my sleep issue which was a MAJOR part of withdrawal for me. Also, as I think back to why I even began taking Clonazepam some 20+ years ago, sleep was a major part of it. It's one of those chicken or the egg questions, what came first, anxiety or chronic insomnia? I'm 3 days into Remeron and so far so good. If this can help me combat the sleep issues, I'm pretty sure I can end my relationship with clonazepam for good. Another question I have here for anyone that has once been on this low is a dose of clonazepam is when would it be safe to just stop completely and "jump-off" from a dependency stand-point, 0.125mg? Thanks!

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@aarniek

Anyone found anything that helped this brutal condition so you could have any sort of life again? I am on 8 different Benzo withdrawal sites including benzo buddies and found zero help!

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The best site I have found is called Benzo Free. I found that the podcast as well as the reading has great info.

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@iowaellen27

I actually had this conversation with my psychiatrist this week because I've seen some of those same articles. Her wise and experienced reply was that the meds MAY cause dementia somewhere down the road but at this point, there is nothing definite and it could be just as easily dementia from genetics, old age, alcohol etc. Rather than worry and stress about what MIGHT be, I would rather live with some more mental stability in the here and now. I equate this concern to those who need a knee replacement but are only in their 50s so they plan to wait till they are in their 70s so it doesn't need to be done twice. 20 years of pain and reduced mobility vs. the unknown? Seems like a no brainer to me

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You have a wonderful psychiatrist! I have a doctor who is finally referring me. Most docs do not seem to have experience with teaching!! withdrawal.
I was finally referred to a psychiatrist whom I will see ..could not get an appointment until February! An epidemic?
If I were to give advice I would say:
1. Read the information that accompanies each prescription!
2. Ask questions:
What is the research on this pharmaceutical?
What are the side effects?
How long should I take this… Is it safe to take for years?!
3. Are there alternatives to medication?
Counseling?
Cognitive Behavioral Therapy?

Many of these docs have gone to the “best” schools but are not specialists in managing tremors, anxiety, cervical dystonia….

Look for the good:
I am more understanding of others medical and psychological issues… a privileged listener. I can listen to your pain. I understand, because I have it. You may not always see it but it is there!

Never give up!
P.S. Thank you for your doctor’s words. It MAY cause dementia. Every time I forget something, I become anxious. I have to work on that.
Many thanks for this website!
It has been more helpful than the well intentioned doctors I have seen.

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Someone needs to update this, so I will. I’m suffering from severe internal vibrations stemming from essential tremor I received d/c’in benzo’s. Taken responsibly 1x/day @night, tapered over 12mths and still got hurt. Permanent tinnitus as LOUD as you can possibly imagine, for life. I shake inside from the moment I wake until the moment I fall asleep for 8mths and counting. I used to champion benzos, especially over those that self medicate with alcohol. NOPE. Benzo’s are the devil, and I NEVER abused them. Came off k pin @22mg/month avg for 6mths. Too fast in retrospect.

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@kevk74

Someone needs to update this, so I will. I’m suffering from severe internal vibrations stemming from essential tremor I received d/c’in benzo’s. Taken responsibly 1x/day @night, tapered over 12mths and still got hurt. Permanent tinnitus as LOUD as you can possibly imagine, for life. I shake inside from the moment I wake until the moment I fall asleep for 8mths and counting. I used to champion benzos, especially over those that self medicate with alcohol. NOPE. Benzo’s are the devil, and I NEVER abused them. Came off k pin @22mg/month avg for 6mths. Too fast in retrospect.

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@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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@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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