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

[[Si...]]

Greetings from suburban Chicago.  I took Xanax daily for thirty years, and I am about one year benzo free (please see my signature).  It may have been a mistake to do such a rapid taper (4 months), but I was in such severe tolerance withdrawal I thought I just needed to get off the stuff as quickly as I could.  I have yet to experience even the slightest bit of improvement.  This withdrawal has all but destroyed me, and I have been severely disabled by it.  I have not found a doctor or counselor/therapist who is familiar with benzo withdrawal.  I'm glad I checked out this section of the site and found this group.  Thank you.  -Jeff

[[MT...]]

Hey Simon.

 

I feel for you. Long term users like us can get hit pretty hard. Are you familiar with the Mad In America website? They have a provider listing and here is one near you who should be benzo wise: https://www.marshasmithcounseling.com/

 

Mad In America, and the book Robert Whittaker and his book Anatomy of an Epidemic are great resources. It's all about this drug mess. I find it empowering. Even long termers like us get better though. I'm at 3.5 years and I'm seeing some real life come back. Most of the symptoms that remain for me are from pre-existing CFS. At one year I was feeling pretty hopeless. I'm glad I persisted with the help of BB, my friends and family.

 

Hang in there everyone.

 

MT

[[Ma...]]

Greetings from suburban Chicago.  I took Xanax daily for thirty years, and I am about one year benzo free (please see my signature).  It may have been a mistake to do such a rapid taper (4 months), but I was in such severe tolerance withdrawal I thought I just needed to get off the stuff as quickly as I could.  I have yet to experience even the slightest bit of improvement.  This withdrawal has all but destroyed me, and I have been severely disabled by it.  I have not found a doctor or counselor/therapist who is familiar with benzo withdrawal.  I'm glad I checked out this section of the site and found this group.  Thank you.  -Jeff

 

I can't offer any advice, but I can welcome you to bb.  I'm sure you will get loads of good suggestions  :)

[[Ba...]]

Hi, Simon.  Welcome!

 

MT, hey I did not know about madinamerica so hopped over there and cannot believe they have nothing, nobody listed in los Angeles, area?  Area is huge so would have thought something would turn up even if way too far to get to!

 

Just curious on that.

 

BTW, is there anybody who has successfully gotten off after 30 or more years and been ok?  At some point to most long-termers just stay on?

[[Un...]]

BarbaraAve,

 

There are some benzo wise docs in the LA area, probably just not many listed.  Mine is aware of the long-term effects and is in support of me doing a slow taper at my own speed.  There are also a few listed on the site linked below, but I’m unsure of how up-to-date this information is.  This list is not exclusive to LA:

 

http://www.benzosupport.org/benzo_wise_doctors.htm

 

Hope this helps! 

[[In...]]

The benzodiazepine  information coalition has a current list.

 

So type that into google, and they will come up. Then go to resources, and down on the left of that page there is a list of resources, and the first is a list of doctors who are willing to help. It goes through the states; California has quite a few.

[[bl...]]

Jeff: So sorry to hear it. It's a nice thread here. You will get some support at least. Hang in there.

[[Un...]]

The benzodiazepine  information coalition has a current list.

 

So type that into google, and they will come up. Then go to resources, and down on the left of that page there is a list of resources, and the first is a list of doctors who are willing to help. It goes through the states; California has quite a few.

 

Wow, Intend!  I didn’t know about this coalition or website.  Thank you for sharing this info.  You’re such a great help to so many, really appreciate all that you do  

 

[[Un...]]

Greetings from suburban Chicago.  I took Xanax daily for thirty years, and I am about one year benzo free (please see my signature).  It may have been a mistake to do such a rapid taper (4 months), but I was in such severe tolerance withdrawal I thought I just needed to get off the stuff as quickly as I could.  I have yet to experience even the slightest bit of improvement.  This withdrawal has all but destroyed me, and I have been severely disabled by it.  I have not found a doctor or counselor/therapist who is familiar with benzo withdrawal.  I'm glad I checked out this section of the site and found this group.  Thank you.  -Jeff

 

Hi Simon,

 

It breaks my heart that you are among those suffering and at a level where you are disabled by this benzo withdrawal.  Congratulations on making it so far along this journey; you’re every day closer to healing.  Even if it doesn’t feel like it.  I, too, became disabled when I was CT’d off Klonopin after 24 years.  Had to reinstate to do a slow taper, but life after rapid withdrawal /CT is not the same at all.  I’m glad you found this group and hopefully will find a doctor to assist you through this.  I also hope you have real life support.  You definitely have support here!

 

Warmest wishes and much love,

 

Uni

[[In...]]

Uni,

 

Yes, the benzodiazepine information coalition started in about 2016 I think. I just happened on it when I happened to be looking at a list of non profits here in Utah. Ms Atomic Bomb is the original founder, and she's right here on BB.

 

She kind of sticks around the Chewing the Fat section, and the Benzos in the news section. I found out that they were a non profit here in Utah with an address at Foothill shopping center, so on my way home last year, I drove in there and searched and searched for that address. Just couldn't find it and came home and posted on BB "Does this place really exist?"

 

Got a lot of replies from the BIC. Hope 76 is the medical director and she's here too. The site itself is pretty interesting to read.

[[Ba...]]

Hi, Unicorn!

 

Thanks and had already found that list.  One dr. I did talk to who in No CA.... another one I understand not so good (UCLA).  Nobody else nearby at all.  Ok, well always willing to check out any leads

[[bl...]]

Yes, most founders of BIC are right here on the site but some are not as active as they once were. They are doing great work to bring awareness to the issue.

 

There are a few doctors in N. cal who are fairly Benzo wise. I say fairly because while they will indulge a slow taper, I’m not totally convinced they gasp the severity of the suffering that goes on.

[[Ba...]]

Yes, Bluepill.  Seem to be a few drs. in the state listed.  Who is to say they really know the depth of the suffering.

 

Actually even finding a dr. who acknowledges some of us have serious, lasting problems is an accomplishment.  Someone mentioned to me a 'benzo-wise' dr. who seems approachable, but even he said he tapers about 1/4 mg/week...  which of course is way fast.

 

One dr. on the list, nowhere local, says he does liquid valium.

 

Anyhow, any dr. acknowledging a problem seems to be few and far between, alas. 

We obviously are a small minority of people facing this, I guess.

 

 

[[tr...]]

Barbara: It's the same here in Sweden, they know nothing. My doctor, is so angry with me, she thinks I'm totally wrong. "The withdrawal, is always over after 3 months". I asked for a admission note, to a Benzo specialist, but she refused. "It's just anxiety". So, I had to write my own letter.

 

The specialist, was also not happy. He also began with "you can't have a withdrawal, for more than half a year". I have been on opiates, for many years ,for pain. Since, I only have "anxiety", I have to stop them. So, now I have withdrawal from both Benzo and Opiates. The brain, feels like a pressure cooker.

 

So, it's heavy, when healthcare doesn't understand. I'm suffering, from all those who have to work, as they don't get a medical certificate. Here, you can get it, for a maximum of 2 months, "then you're fine!". This, is really madness.

[[In...]]

I am the one who provided that list.

 

If it didn't work for you, I can do nothing about that. But as far as I know, it's the most current list there is right now.

 

Do me a favor and at least acknowledge me. I've probably been a member of BB much longer than any of you.

 

Unfortunately the list is not long, but it is correct to say that benzo wise docs are few and far between.

 

Frankly getting healthcare in the US, can be problematic under many circumstances. And then I hear of the healthcare in other countries being problematic for numerous reasons also.

 

Will a doctor always understand benzo problems anywhere? Maybe yes, maybe no. Do your best to talk to your doctor or another one you hear about. It might just come down to finding a doctor who will prescribe a benzo, and you figure out how to taper on your own.

 

 

[[MT...]]

Hi, Simon.  Welcome!

 

MT, hey I did not know about madinamerica so hopped over there and cannot believe they have nothing, nobody listed in los Angeles, area?  Area is huge so would have thought something would turn up even if way too far to get to!

 

Just curious on that.

 

BTW, is there anybody who has successfully gotten off after 30 or more years and been ok?  At some point to most long-termers just stay on?

 

Hey BarbaraAve.

 

You're right that many long-term users end up staying on benzos...to their detriment. I didn't quite use for 30 years but I did high dose for 18 years straight with another 11 years of quite frequent as needed high dose use. I'm completely off now for over 3.5 years. I never thought I'd be psych med free since I took multiple ones from 25-53. Getting off took several years, and it was a bitch, but it's so liberating to be free. Ironically, my mental health, while imperfect, is the best it's been since teenage. I manage it with exercise, mindfulness, time with friends, managing stress and counseling. Recovery is worth believing in!

 

MT

[[Si...]]

Many thanks for all of your helpful replies.  I really appreciate it.  I will look into the resources you provided.  -Jeff

[[Si...]]

Hey Simon.

 

I feel for you. Long term users like us can get hit pretty hard. Are you familiar with the Mad In America website? They have a provider listing and here is one near you who should be benzo wise: https://www.marshasmithcounseling.com/

 

Mad In America, and the book Robert Whittaker and his book Anatomy of an Epidemic are great resources. It's all about this drug mess. I find it empowering. Even long termers like us get better though. I'm at 3.5 years and I'm seeing some real life come back. Most of the symptoms that remain for me are from pre-existing CFS. At one year I was feeling pretty hopeless. I'm glad I persisted with the help of BB, my friends and family.

 

Hang in there everyone.

 

MT

Good for you that you succeeded in getting off all those medications!  I'm sure the worst is behind you!  -Jeff

[[Si...]]

Hey Simon.

 

I feel for you. Long term users like us can get hit pretty hard. Are you familiar with the Mad In America website? They have a provider listing and here is one near you who should be benzo wise: https://www.marshasmithcounseling.com/

Oh, and thanks for this referral.  I'm going to contact her.  -Jeff

[[Si...]]

BTW, is there anybody who has successfully gotten off after 30 or more years and been ok?  At some point to most long-termers just stay on?

I could not have stayed on the Xanax.  I was so ill, and I couldn't live out the rest of my life that way.  Of course, now I'm even more ill in withdrawal, but praying I will recover eventually.  -Jeff

[[Si...]]

"The withdrawal, is always over after 3 months".  "you can't have a withdrawal, for more than half a year".

What an awful and ignorant thing for a doctor to tell you.  I've had similar things said to me.  I thought I made a good and brave decision to get off Xanax; now I've got people telling me I have a severe mental disorder and I need to be on drugs.  I am having a telephone session tomorrow with Baylissa Frederick.  At least she knows what she is talking about.  -Jeff 

[[Sc...]]

Hi, Simon.  Welcome!

 

MT, hey I did not know about madinamerica so hopped over there and cannot believe they have nothing, nobody listed in los Angeles, area?  Area is huge so would have thought something would turn up even if way too far to get to!

 

Just curious on that.

 

BTW, is there anybody who has successfully gotten off after 30 or more years and been ok?  At some point to most long-termers just stay on?

 

Hey BarbaraAve.

 

You're right that many long-term users end up staying on benzos...to their detriment. I didn't quite use for 30 years but I did high dose for 18 years straight with another 11 years of quite frequent as needed high dose use. I'm completely off now for over 3.5 years. I never thought I'd be psych med free since I took multiple ones from 25-53. Getting off took several years, and it was a bitch, but it's so liberating to be free. Ironically, my mental health, while imperfect, is the best it's been since teenage. I manage it with exercise, mindfulness, time with friends, managing stress and counseling. Recovery is worth believing in!

 

MT

Hi,

Do you think it was easier to taper off clonazapam while staying on your other psych Meds as apposed to tapering benzo without phsych med?

I have treatment resistant depression, take a hefty dose of clonazapam & am so tired, depressed & diysfunctional, I wonder if giving another antidepressant a try would be worth it since I’ve so long to go before I’d be tapered off k pin. They do usually fail to work or have intolerable side effects, then there’s withdrawal. Thanks be well, SC ps I also have ms

[[ni...]]

Hi all, I was also a long term clonazepam and ambien user. I took at most 1.5 mgs of K and 10mgs of ambien for approx 20 years. Tried to taper off over the years as I had kindled and not sleeping well. Failed. about four years ago, approx..I stopped taking Ambien because I had added them to a new prescription of HRT..same color, close to the same shape. Once I discovered I had been taking one or the other over the weeks time, I just stopped the ambien with really no problems. Strange, I know, but I was happy to be off of that med.

I managed to get off of K after finding this site. You all are amazing.

It was a rough ride..horrible at times, but I was determined. K made me incredibly sick over the years. I just wanted off..

I finished tapering off Nov. 8, 2017.  My biggest issue is lack of sleep and no energy. There's more, but those two are the worst to deal with. I am slowly getting better. Sleep is still a problem, but last night I slept 7.5 hours and only got up to go to the bathroom once. Maybe I am seeing the light at the end of the tunnel. Just maybe.

 

[[Sc...]]

Hi all, I was also a long term clonazepam and ambien user. I took at most 1.5 mgs of K and 10mgs of ambien for approx 20 years. Tried to taper off over the years as I had kindled and not sleeping well. Failed. about four years ago, approx..I stopped taking Ambien because I had added them to a new prescription of HRT..same color, close to the same shape. Once I discovered I had been taking one or the other over the weeks time, I just stopped the ambien with really no problems. Strange, I know, but I was happy to be off of that med.

I managed to get off of K after finding this site. You all are amazing.

It was a rough ride..horrible at times, but I was determined. K made me incredibly sick over the years. I just wanted off..

I finished tapering off Nov. 8, 2017.  My biggest issue is lack of sleep and no energy. There's more, but those two are the worst to deal with. I am slowly getting better. Sleep is still a problem, but last night I slept 7.5 hours and only got up to go to the bathroom once. Maybe I am seeing the light at the end of the tunnel. Just maybe.

Congrats on getting off clonazapam. Can you please clarify.

Getting off k was a rough ride, horrible at times?

 

How did you taper? Do you feel you went too fast?

Do you feel you successfully tapered with little to no paws?

 

Did you only take your k @ night?

 

How did k make you sick over the years? Like vomit? Please explain.

Sorry for all of the questions looking for experience & hope. Love SC

[[ni...]]

Hi Scardie. I'll try to answer your questions.

I started tapering off of clonazepam on my own. My PCP sent me to a sleep specialist, whose only advice was to take melatonin, wear yellow glasses in the evening to block out blue light from the tv, computer, etc. I think there was one more, but I forgot. I then decided to just start tapering like I had in the past.I cut 1/2 pill a week. I was in a severe withdrawal. zero sleep, leg jerks, nerve pain mainly in my legs, and torso. Tinnitus, my body would heat up like an oven during the night, then cool off, then heat up again. I finally reupped from a half of a 0.5 mg K to one 0.5 mgs and held for a couple of weeks. In the meantime I kept searching online and found BB. I read and read to figure out what I needed to do. Sloooow taper is what I found out. Very slow. My son loaned me a gram scales from his geophysics lab and I started weighing the cuts. I went down approx 10% every week or ten days. Sometimes I would feel almost human about the middle of the week before I cut again. I would sleep maybe 5-6 hours a night. If I felt good, I would cut in a week if not I would hold until I started feeling better. When we went to visit my mom, I held for 3 to 4 weeks and then started tapering when I returned home. I always had withdrawal symptoms, but over time they lessened or I could deal with them.

I only took K and ambien at night.

The sickness over the years was less and less sleep, agoraphobia, feeling either numb or emotional, but mainly numb. I was in the ER with dizziness, then 6 months later, back in with transient global amnesia. No one ever suggested it was the K I was on, but they didn't know what caused the dizziness or the amnesia. Last night I slept 7.5 hours! There are more and more beautiful windows! Please feel free to ask me questions and I will try to answer them.