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!

Today, Mayo Clinic Connect's member spotlight features someone many of you have interacted with in this discussion on protracted benzo withdrawal. Read @thankful's interview with @johnbishop to find out what brought him to Connect and how he finds balance in life.

–– Fly Fishing, Gardening and the Northwest: Meet @thankful https://connect.mayoclinic.org/page/about-connect/newsfeed/fly-fishing-gardening-and-the-northwest-meet-thankful/

Follow the About Connect page to read all the Member Spotlights: https://connect.mayoclinic.org/page/about-connect/

REPLY
@merpreb

@catcatanzaro60 – I found this article about it: https://www.health.harvard.edu/mind-and-mood/two-types-of-drugs-you-may-want-to-avoid-for-the-sake-of-your-brain

Be careful of the studies and research because even this one had no control group so there is no "proof"

Jump to this post

That's scary. I'm on both of those families of drugs (amitriptyline and valium). Today I reduce down from 4mg of Valium to 3mg. After I finish the valium titration I intend to d/c the tricyclic in the same super slow way. I figure even if I need to be on it, it's worth checking to see if that need exists 2 1/2 years later. Some things give me hope. The plasticity of the human brain is not fixed. It can heal after brain injury even into old age. Also, when I was young it was generally understood that the brain does not produce new brain cells. Not true! I'm trying to remain hopeful but it's hard and it's scary. My short-term memory is practically nonexistent.

REPLY

@elsa1000
I don’t see how those meds would help with those symptoms. I’ll never take a benzodiazepine or an Antidepressant. Have you tried a muscle relaxant?
Why are you unable to walk?
Do you have a diagnosis?
Jake

REPLY
@jakedduck1

@elsa1000
I don’t see how those meds would help with those symptoms. I’ll never take a benzodiazepine or an Antidepressant. Have you tried a muscle relaxant?
Why are you unable to walk?
Do you have a diagnosis?
Jake

Jump to this post

@jakedduck1 – I think you tagged the wrong person.

Liked by Leonard

REPLY

@elsa1000
Yes I did, thank you for letting me know
Jake

REPLY

@elsa1000
Your a very intelligent person.
Always smart to take the lowest possible effective dose.
I can relate to your memory issues. Mine are both short and long term. I lost all memories from age 15 back. And many more years throughout my life.
Speech Pathologists can be helpful with memory issues. I’ve been to three. You might want to consider it.
Best of luck,
Jake

REPLY

I know I am not nearly too bad, but I do need some help and support. I am 68, and because of my age, and the addictive ness of Ativan, my doctor wants me to get off it. I have taken .5mg for about 6 years, at first to deal with panic attacks as I had diverticulitis and colitis, then continued to help me sleep and stay “even”. He gave me 2 months at first, but I knew that wouldn’t work. I remember weaning off Paxil many years ago and, even with a low dosage, it took me a year. Well, it has been 3 1/2 months now taking .25mg. I figured that it is time to cut down again (the dr has given me 6 months to get off it). Where do I go from .25? I decided to try to stop taking it a couple of days ago. I had a bit of trouble getting to sleep but I slept good, and I felt really good in the morning! So I didn’t take it last night either. Today, I feel horrible! My lower limbs are prickly, I have a horrendous headache, I feel dizzy and nauseous and I am getting brain whooshes and loud ringing in my ears and I am freezing. I think that it was a bad idea to cut back, and I need to go slower. So tonight I took about .20 to see if it helps at all. I’m afraid if I skip every other day, I may just feel like I am on a roller coaster. Where do I go from here? Looking for some wisdom. Am I on the right track?

Liked by Leonard

REPLY
@debra51

I know I am not nearly too bad, but I do need some help and support. I am 68, and because of my age, and the addictive ness of Ativan, my doctor wants me to get off it. I have taken .5mg for about 6 years, at first to deal with panic attacks as I had diverticulitis and colitis, then continued to help me sleep and stay “even”. He gave me 2 months at first, but I knew that wouldn’t work. I remember weaning off Paxil many years ago and, even with a low dosage, it took me a year. Well, it has been 3 1/2 months now taking .25mg. I figured that it is time to cut down again (the dr has given me 6 months to get off it). Where do I go from .25? I decided to try to stop taking it a couple of days ago. I had a bit of trouble getting to sleep but I slept good, and I felt really good in the morning! So I didn’t take it last night either. Today, I feel horrible! My lower limbs are prickly, I have a horrendous headache, I feel dizzy and nauseous and I am getting brain whooshes and loud ringing in my ears and I am freezing. I think that it was a bad idea to cut back, and I need to go slower. So tonight I took about .20 to see if it helps at all. I’m afraid if I skip every other day, I may just feel like I am on a roller coaster. Where do I go from here? Looking for some wisdom. Am I on the right track?

Jump to this post

Hi, @debra51 – welcome to Mayo Clinic Connect. You sound familiar with being in a process of weaning off a medication and realistic about it taking some time.

When your doctor gave you 6 months to taper off the lorazepam (Ativan), did he by chance give you a tapering schedule? If not, could you call his office to let them know what you are experiencing and get some input on how he wants you to taper from .25?

REPLY
@lisalucier

Hi, @debra51 – welcome to Mayo Clinic Connect. You sound familiar with being in a process of weaning off a medication and realistic about it taking some time.

When your doctor gave you 6 months to taper off the lorazepam (Ativan), did he by chance give you a tapering schedule? If not, could you call his office to let them know what you are experiencing and get some input on how he wants you to taper from .25?

Jump to this post

@lisalucier Thank you so much for your response. No, my doctor did not give me any kind of schedule. I have called his office this morning and I have an appointment for tomorrow ( unless they get a cancellation and can get me in today) I feel better this morning after taking the Ativan last night, but I still have a horrendous headache and feel sweaty, etc. I will continue with the .25 until I get a plan.

REPLY

@debra51
Hi Debra,
Not sure if a compounding pharmacy would be an option you’d be interested in or not. If so, they can prepare medications to any formulation. You may want to mention your concerns about titrating down to your doctor.
I have a suspension however he might have you reduce your dose by half which is to much considering how long you’ve been on it. If it were me, I’d ask to have a Compounding pharmacy reduce your dose by no more than 10% and take that dose for 2-4 weeks then reduce by 10% until your off.
Tell your doctor you’ve already cut it by approximately 20% but had withdrawal symptoms and need to reduce more slowly.
Will be thinking about you,
Jake

REPLY
@jakedduck1

@debra51
Hi Debra,
Not sure if a compounding pharmacy would be an option you’d be interested in or not. If so, they can prepare medications to any formulation. You may want to mention your concerns about titrating down to your doctor.
I have a suspension however he might have you reduce your dose by half which is to much considering how long you’ve been on it. If it were me, I’d ask to have a Compounding pharmacy reduce your dose by no more than 10% and take that dose for 2-4 weeks then reduce by 10% until your off.
Tell your doctor you’ve already cut it by approximately 20% but had withdrawal symptoms and need to reduce more slowly.
Will be thinking about you,
Jake

Jump to this post

Thank you @jakedduck1, I was wondering if that would be the way to go. I have been searching to find ideas to talk over with my doctor, and thought this might be a good way to go. Obviously I need to go very slowly from now on. It feels good to know that there is support here. My husband is also very supportive which is important. This is too hard to do all alone. I’ve learned that from experience. Thank you again.

REPLY
@debra51

Thank you @jakedduck1, I was wondering if that would be the way to go. I have been searching to find ideas to talk over with my doctor, and thought this might be a good way to go. Obviously I need to go very slowly from now on. It feels good to know that there is support here. My husband is also very supportive which is important. This is too hard to do all alone. I’ve learned that from experience. Thank you again.

Jump to this post

@debra51
Hello again,
I have never had a problem stopping medication except when it came to the Benzodiazepine Anticonvulsant Klonopin. I was taking flakes of it at the last. You may need to remind your doctor that people react differently. Although I personally do not like Benzodiazepines and refuse to take them they do help some people. They replaced the Barbiturates. I’ll take Barbiturates anytime over Benzos but try finding a doctor to prescribe any these days. If studied long enough any drug will be found to be dangerous. Phenobarbital, a Barbiturate has been studied over 100 years now. Research is beginning to show the Benzodiazepines aren’t the great replacement that they once thought. Bet you a buck these drugs eventually go the way of Barbiturates.
I’d be curious of what your doctor suggests. Hope you keep up updated
Best of luck,
Jake

Liked by debra51

REPLY
@debra51

@lisalucier Thank you so much for your response. No, my doctor did not give me any kind of schedule. I have called his office this morning and I have an appointment for tomorrow ( unless they get a cancellation and can get me in today) I feel better this morning after taking the Ativan last night, but I still have a horrendous headache and feel sweaty, etc. I will continue with the .25 until I get a plan.

Jump to this post

Hi Debra – you might want to check out the Ashton Manual on benzodiazepine withdrawal. Dr. Ashton had decades of experience in successfully titrating people off of benzo's. The first step is converting your dose from lorazepam to diazepam. Diazepam (Valium) has a much long half-life than lorazepam (Ativan). That means it stays in your system for almost twice as long, making a withdrawal more gradual (and tolerable!) There's absolutely nothing to gain by going fast. It's odd that your doctor would voice concern about Ativan's addictiveness. It would make sense if he'd been concerned six years ago. But now? You're already dependent on it. Or "addicted" if he insists on using a pejorative. So you need help to get off of it safely and compassionately.

REPLY

Just an update on my titration process. This coming Sunday I reduce my diazepam dose from 3mg to 2mg. Throughout my discontinuation process I noticed what became a predictable pattern. On the third day after a dose reduction (every two weeks) I would feel lousy. Fortunately it would resolve in a day. But my deduction to 3mg has been a little more difficult. This discomfort that set in on the third day hasn't entirely abated. I'm hoping having come down with a chest cold is the explanation. I have been studiously avoiding a constant monitoring of bodily symptoms. At least as much as I can. The down side of that is it took me a few days to realize I was sick. Duh! The lack of yoga and daily walks has a really noticeable effect on my anxiety level. I'm a little intimidated by the upcoming dose reduction to 2mg. It's counterintuitive to me that if would get more difficult at such low levels. Then again, *cough*, I'm sick so feeling tired, shaky and rundown shouldn't be too much of a mystery.
Until this chest cold hit, my titration process had been withdrawal-free since I started using the protocol in the Ashton Manual!!! Here's a few things that have been helpful as well – the audio book "Anxiety Relief" by Martin L. Rossman, MD. In it, he walks you through a guided imagery process that I guess could be called mediation. It's very soothing. My anxiety is worse in the morning and more often than not, listening to a section of this book is how I start my day.
Also, "Power Yoga" by Rodney Yee. He incorporates diaphragmatic breathing through the whole routine. The intensity of the routine is easily varied. It could be a cardio workout if done with enough enthusiasm. I prefer slow and calm. Today I'm limiting myself to a casual dog walk. Maybe. Wow, sitting around during this process is the pits!

REPLY

Thank you @jakedduck1 for the suggestion of a compounding pharmacy. I called one that happens to be close by to see if they would do such a prescription for me. With that information, I had my doctor’s appointment today and I now have a plan. I will go down by .05 every month as long as I can. But if I notice it getting too difficult, I can stay at that level until I even out. If I notice that my anxiety is too much, we may just stop at that level. So I now feel like I have some control in how this goes. I also know that if I need to I can request that my prescription be decreased by a smaller amount. I am so glad that I did some homework before I went, and that my doctor was so supportive. Now to journey forward. Slow and steady.

Liked by Leonard

REPLY
Please login or register to post a reply.