Scared but hopeful

[[Li...]]

Hi all , I will attempt to keep this short but I’m looking for any and all advice. After most of a life of trauma I wAs put on Ativan at 19, then pushed up to 2 mg of klonopin twice a day in 2000. I have been on this medication every day for 28 years , minus 1-3 days a few times while trying to have a baby . Doctor kept me on during pregnancy and I was able to have a beautiful healthy baby almost 8 years ago. I have been discouraged and told I could t get off at this point . I never increased my dose but I realized this past year that I wasn’t going to be able to live long this and At and I was getting worse . All that said AMA I went 2 weeks off cold Turkey 9 weeks ago. I have a medical background and knew the potential risks but also knew I was gonna die either way . I had tried the taper but always had the golden parachute when and if I needed it and I always needed it. Life has not been easy and I was always in dire straits . But it hit me that I couldn’t do this anymore. After the two week cold Turkey I finally told my doctors and husband (I had written many just in case letters ) and said “ok now I’m off two weeks. I’m done . Never ever let me go back but the withdrawals were such that I needed to then begin the taper method or I might be at even more serious risk . 9 weeks free was something I never ever thought I could do and I’m 100 percent committed at all costs to stay off while doing the diazepam taper protocol now that I’m free of klonopin . Surprisingly emotionally I’m fine . I was ready . I’ve survived much much worse . I am however struggling with adrenaline hot and freezing sweats that are rapid cycling and noise amplification. I can live with all this as we try clonodine to help with adrenaline issues. I don’t know what I don’t know . I’m scared but I’m hopeful and I’m not going back . Any supplements, suggestions to help with those going through something similar? I’m having a hard time finding many who have been on for almost 30 years at this dose and being successful. Thank you and I’m sorry for being long winded 

Lizzie

[[je...]]

Hi @[Li...]

Welcome to BenzoBuddies!

You've surely been through quite a rough time. I honestly don't blame you for reinstating and I'm sure you'll have a much smoother ride by tapering. Nobody should have to endure a cold turkey. I can see you are determined and it will serve you well as you progress through this journey. It is not easy, but it can be done. 

Generally there doesn't seem to be supplements to help with withdrawal - it is a bit hit and miss. What works for one, does not necessarily work for someone else. We usually find the best remedy is distraction. It will help if you can find things to do to take your attention away as to not dwell or focus on your symptoms. But it can be very difficult when we're in a lot of pain.

Just know we understand what you're going through and you're not alone. I am always reminded that Prof Heather Ashton said, regardless of dose or time of usage, the prospect of recovery is very good for all benzo users. 

[[Bu...]]

Hello @[Li...],

I also just wanted to say hello and welcome.  And, while I'm sure that other people who have been on a Benzos long term at higher does will chime in soon, I wanted to let you know that while a took an average dose of Clonazepam, I did take it for 20 years.  I have been off for 9 1/2 months.  I also have a friend in my real life that took high doses of Xanax everyday for just over 31 years and she has been off for almost 2 years and is doing really well.  There is so much hope!  Hang in there, we're all here for you!

[[Li...]]

Please forgive me as I learn to navigate the site . Thank you both for your kind words of encouragement. I think one of the hardest things is, having a medical background I NEED AND WANT PROVEN  SCIENTIFIC DATA AND EXACT INFORMATION ON  EVERYTHING. Lol as the brain dog lifts my brain isn’t satisfied not understanding what I don’t know . But I trust reading the Ashton method should work . I TRUST doing it the way I did was right for ME . That said it was absolute hell and well I can pull myself out of that too . I have a strong faith and I’m glad my doctor recommended this site today as I navigate the frustration of not knowing more while also acknowledging I wouldn’t have been safe to try till now. So I believe timing dictates a lot and mindset and getting my body healthy . I think getting sick and  tired of being sick and tired and not like the other moms at my sons school . But thank you and I look forward to supporting others as well and I have to believe, in community, there is knowledge. Thank you again and we’ll here we go 😂

[[St...]]

 

Hey there, I was put on Klonopin when I was 18 and took it for 21 years, so we have something in common! I kept having the dose upped over the years, eventually to 5mg. You can absolutely get off the med, I’ve been completely off for 14 months. If you can do any kind of VERY slow taper though, please stick to that, you’ll have a much easier time. Not everyone has horrible symptoms, so if you’re emotionally fine, that’s fantastic! Not everyone who quit benzos has a horrible time of it, period. If you look at my profile, you’ll see I’ve had a couple of seizures, BUT please don’t let that freak you out because it’s not common (and tends to only happen when people quit without tapering).

I’ve had a lot of issues with temperature regulation. For a while I’d get too hot all the time, then it switched to too cold, and I’ve had a lot of night sweats (they suck, don’t they!?). I still get some of this, but not nearly to the extent that I used to. Adrenaline rushes and noise amplification are also very normal symptoms, and I’ve had a little of each, but they weren’t terrible for me. Everyone tends to have symptoms differently.

If you haven’t looked at everything at benzoinfo.com, please check that out. You can absolutely be successful going off benzos though, even after over 20 years and at the high doses you and I were on (I never knew I was considered to be on a high dose until I joined this site hah). I’m healing…it’s slow, but it’s happening. You sound like you’re doing great! What dose are you currently on? I haven’t found supplements to be helpful (for me they seem to amp up my symptoms), but everyone is different, and some people like taking them. I just try to eat decently and get some sleep and exercise.

As for scientific info., check out this page: https://www.benzoinfo.com/impact/#research

Hang in there!

 

[[je...]]

18 minutes ago, [[L...] said:

I NEED AND WANT PROVEN  SCIENTIFIC DATA AND EXACT INFORMATION ON  EVERYTHING

I totally get this. During my taper, making decisions and guessing what would be the next best step was extremely frustrating. Because no individual reacts exactly the same.

You might be interested in this recent publication: Maudsley Deprescribing Guidelines.

33 minutes ago, [[L...] said:

I TRUST doing it the way I did was right for ME

This is a very wise approach. We can only do our best. And we know ourselves the best. Constantly second guessing or regretting our decisions does not achieve anything. We have to move forward with the knowledge we have and be kind to ourselves as we navigate this very difficult journey.  

[[ji...]]

hello and welcome.  i have also been on klonopin for 30 years.  for me the only way was micro tapering all the way.  im at the end of my taper now and i am taking it even slower than before.  wishing you health & healing ~~jill

[[PE...]]

55 minutes ago, [[S...] said:

Hey there, I was put on Klonopin when I was 18 and took it for 21 years, so we have something in common! I kept having the dose upped over the years, eventually to 5mg. You can absolutely get off the med, I’ve been completely off for 14 months. If you can do any kind of VERY slow taper though, please stick to that, you’ll have a much easier time. Not everyone has horrible symptoms, so if you’re emotionally fine, that’s fantastic! Not everyone who quit benzos has a horrible time of it, period. If you look at my profile, you’ll see I’ve had a couple of seizures, BUT please don’t let that freak you out because it’s not common (and tends to only happen when people quit without tapering).

I’ve had a lot of issues with temperature regulation. For a while I’d get too hot all the time, then it switched to too cold, and I’ve had a lot of night sweats (they suck, don’t they!?). I still get some of this, but not nearly to the extent that I used to. Adrenaline rushes and noise amplification are also very normal symptoms, and I’ve had a little of each, but they weren’t terrible for me. Everyone tends to have symptoms differently.

If you haven’t looked at everything at benzoinfo.com, please check that out. You can absolutely be successful going off benzos though, even after over 20 years and at the high doses you and I were on (I never knew I was considered to be on a high dose until I joined this site hah). I’m healing…it’s slow, but it’s happening. You sound like you’re doing great! What dose are you currently on? I haven’t found supplements to be helpful (for me they seem to amp up my symptoms), but everyone is different, and some people like taking them. I just try to eat decently and get some sleep and exercise.

As for scientific info., check out this page: https://www.benzoinfo.com/impact/#research

Hang in there!

I have actually not met one person here that not had a awful withdrawal. Taper or CT.

 

[[PE...]]

Quitting benzos is a wild experience. But totally worth it.

[[Li...]]

3 hours ago, [[P...] said:

I have actually not met one person here that not had a awful withdrawal. Taper or CT.

@[PE...] yes that is definitely correct but most people can come off with minimal problems and wouldn't have to come to this group (lucky them😅)

We are unfortunately the 20% that do have problems.

How are you doing now at 7 months off?

[[Li...]]

@[Li...] I took benzo's for 26 years and went into detox in October last year to be taken off.  I'm now 7 months off and doing pretty well considering !!

[[PE...]]

Just now, [[L...] said:

@[PE...] yes that is definitely correct but most people can come off with minimal problems and wouldn't have to come to this group (lucky them😅)

We are unfortunately the 20% that do have problems.

How are you doing now at 7 months off?

I think it's 8 months something Lisa!

I'm doing good. Still some tinnitus. Insomnia is bad from day to day. This night i was up.. laid in bed for an hour, going up, back to bed, and up again.  My whole body us restless I must move. 

I use thc vapes for sleep but I'm out! So this will be a long day..

[[PE...]]

5 minutes ago, [[L...] said:

@[PE...] yes that is definitely correct but most people can come off with minimal problems and wouldn't have to come to this group (lucky them😅)

We are unfortunately the 20% that do have problems.

How are you doing now at 7 months off?

I wonder if those calculations are correct..I mean most people stop taking them without a doctor knowing.. so where does the 20% come from?

I done this before.. like 8 years ago. That time the withdrawal only lasted 3 weeks. Really bad but fast. No taper.

[[Li...]]

@[PE...] not sure where the stats come from? I tapered off Xanax 4mg over 6 months in around 2007 and honestly did not get ONE single symptom??

[[Li...]]

30 minutes ago, [[P...] said:

I think it's 8 months something Lisa!

I'm doing good. Still some tinnitus. Insomnia is bad from day to day. This night i was up.. laid in bed for an hour, going up, back to bed, and up again.  My whole body us restless I must move. 

I use thc vapes for sleep but I'm out! So this will be a long day..

@[PE...] my sleep WAS going so well, then about 6 weeks ago, I started getting adrenal surges through the night again??? I'm being woken in TERROR about 5am every morning abd it takes 3 hours to feel normal again.  Still have head pressure and buzzing  but apart from that pretty good considering  !!

I never want to have to go through this hell again !!

[[PE...]]

14 minutes ago, [[L...] said:

@[PE...] my sleep WAS going so well, then about 6 weeks ago, I started getting adrenal surges through the night again??? I'm being woken in TERROR about 5am every morning abd it takes 3 hours to feel normal again.  Still have head pressure and buzzing  but apart from that pretty good considering  !!

I never want to have to go through this hell again !!

Yeah this thing takes time for sure..

Glad you're doing considerably good anyway

[[Si...]]

I think it's very hard to estimate the amount of people who suffer withdrawal, or how long it takes to recover. But I would estimate it's way higher than 20%. This figure actually sounds like something doctors would try to have you believe! The answers really depend on many factors. I'm sure there are those who suffer withdrawal and don't look at forums. Some people may go to their doctor and be prescribed other medication. One example is a friend who has been poly-drugged by her doctor for some years. When she mentioned strange symptoms to me, I tactfully suggested they may have been caused by medication because they sounded like withdrawal syndrome, but she really didn't want to hear about that possibility. Concerning length of withdrawal time, this has to be connected to different circumstances, not only the amount of drug used and for how long, but also with the person's situation and - to some extent - character. It seems well understood that either cold turkeying or rapid detox will generally be worse than a careful slow taper...

[[PE...]]

1 hour ago, [[S...] said:

I think it's very hard to estimate the amount of people who suffer withdrawal, or how long it takes to recover. But I would estimate it's way higher than 20%. This figure actually sounds like something doctors would try to have you believe! The answers really depend on many factors. I'm sure there are those who suffer withdrawal and don't look at forums. Some people may go to their doctor and be prescribed other medication. One example is a friend who has been poly-drugged by her doctor for some years. When she mentioned strange symptoms to me, I tactfully suggested they may have been caused by medication because they sounded like withdrawal syndrome, but she really didn't want to hear about that possibility. Concerning length of withdrawal time, this has to be connected to different circumstances, not only the amount of drug used and for how long, but also with the person's situation and - to some extent - character. It seems well understood that either cold turkeying or rapid detox will generally be worse than a careful slow taper...

I got a bipolar diagnosis from being messed up/poly drugged. When removing some medications my bipolar disorder disappeared. 

About that CT is worse than a slow taper.. is it really?? I tried to taper the whole last year and was such a mess. I had every withdrawal symptom there is.

finally CT 8/9 months ago. 3 months off I started to get better. All I read about "tapers" (new word lol!!) Is updosing and holding for weeks and months and getting bad symptoms though out the taper. And when the day to jump comes withdrawal still hits like a hammer.

So if I would do it all over again I would have skipped the year of taper and get me some anti convulsion medication. 

It's just my point of view based on my own experience. 

Peace.

 

[[...]]

7 hours ago, [[P...] said:

I have actually not met one person here that not had a awful withdrawal. Taper or CT.

Oh no!!!! 

[[PE...]]

[[PE...]]

Yeah I remember noq that @[or...] doesn't have it to hard I think. 

[[or...]]

10 hours ago, [[L...] said:

Hi all , I will attempt to keep this short but I’m looking for any and all advice. After most of a life of trauma I wAs put on Ativan at 19, then pushed up to 2 mg of klonopin twice a day in 2000. I have been on this medication every day for 28 years , minus 1-3 days a few times while trying to have a baby . Doctor kept me on during pregnancy and I was able to have a beautiful healthy baby almost 8 years ago. I have been discouraged and told I could t get off at this point . I never increased my dose but I realized this past year that I wasn’t going to be able to live long this and At and I was getting worse . All that said AMA I went 2 weeks off cold Turkey 9 weeks ago. I have a medical background and knew the potential risks but also knew I was gonna die either way . I had tried the taper but always had the golden parachute when and if I needed it and I always needed it. Life has not been easy and I was always in dire straits . But it hit me that I couldn’t do this anymore. After the two week cold Turkey I finally told my doctors and husband (I had written many just in case letters ) and said “ok now I’m off two weeks. I’m done . Never ever let me go back but the withdrawals were such that I needed to then begin the taper method or I might be at even more serious risk . 9 weeks free was something I never ever thought I could do and I’m 100 percent committed at all costs to stay off while doing the diazepam taper protocol now that I’m free of klonopin . Surprisingly emotionally I’m fine . I was ready . I’ve survived much much worse . I am however struggling with adrenaline hot and freezing sweats that are rapid cycling and noise amplification. I can live with all this as we try clonodine to help with adrenaline issues. I don’t know what I don’t know . I’m scared but I’m hopeful and I’m not going back . Any supplements, suggestions to help with those going through something similar? I’m having a hard time finding many who have been on for almost 30 years at this dose and being successful. Thank you and I’m sorry for being long winded 

Lizzie

Welcome to BB Lizzie, I am not off/done with my taper so I can't relate to being finished, but I did take the Clonazepam at 1 mg for 35 years.  It was like my little "one a day" vitamin that was the most damaging thing I've done to my body.  Yes, of course I had help, but it was my decisions that got me here.  Luckily, I joined BB and hit the ground running for life, listened to others stories, our peers who truly know what it's like to withdraw, or cold-turkey from a benzo.

I do eat my choice of a healthy diet (ketogenics) and exercise.  I do take my B Vitamins I started well before my taper, and magnesium glycinate, Vit. C and just a few of what they have in "multi-blends".  You'll find a lot of help here, and caring folks, Oregonlady~Denise

Edited June 6 by [or...]

[[or...]]

11 minutes ago, [[P...] said:

Yeah I remember noq that @[or...] doesn't have it to hard I think. 

Hi Peppe, you are right, comparatively speaking, I don't have the really bad wd sxs.  I have a lot of the same though, just not the more extreme versions. 

I think younger and stronger is a powerful remedy and I'm so glad to hear many positive experiences coming from folks who have done CT's   OL

 

[[or...]]

1 hour ago, [[P...] said:

I got a bipolar diagnosis from being messed up/poly drugged. When removing some medications my bipolar disorder disappeared. 

About that CT is worse than a slow taper.. is it really?? I tried to taper the whole last year and was such a mess. I had every withdrawal symptom there is.

finally CT 8/9 months ago. 3 months off I started to get better. All I read about "tapers" (new word lol!!) Is updosing and holding for weeks and months and getting bad symptoms though out the taper. And when the day to jump comes withdrawal still hits like a hammer.

So if I would do it all over again I would have skipped the year of taper and get me some anti convulsion medication. 

It's just my point of view based on my own experience. 

Peace.

I so appreciated reading this @[PE...] it makes a lot of sense.  And I've seen you get through this ever since I first read your replies etc. I remember thinking you were a wild and crazy guy, to jump off like you did, but I've seen you make it!!

I sometimes wonder about tapering myself, but I think the main thing I think about is the fear of being 71, and being sick, or even bed-ridden. 

I guess we can only try things out because there's not enough medical advice/studies that show the best way, not enough for me anyway, oregonlady

PS your honesty is refreshing, and you are constantly helping others find their way

Edited June 6 by [or...]

[[En...]]

2 hours ago, [[P...] said:

I got a bipolar diagnosis from being messed up/poly drugged. When removing some medications my bipolar disorder disappeared. 

About that CT is worse than a slow taper.. is it really?? I tried to taper the whole last year and was such a mess. I had every withdrawal symptom there is.

finally CT 8/9 months ago. 3 months off I started to get better. All I read about "tapers" (new word lol!!) Is updosing and holding for weeks and months and getting bad symptoms though out the taper. And when the day to jump comes withdrawal still hits like a hammer.

So if I would do it all over again I would have skipped the year of taper and get me some anti convulsion medication. 

It's just my point of view based on my own experience. 

Peace.

I think a taper and CT symptoms last as long as each other. Tapering just reduces the severity of the symptoms I believe. 

I have been tapering since Feb and I have suffered through this. I'm sure I would have suffered more if I just stopped the medication. I'd probably still be suffering today. 

Doing a taper does not guarantee a symptom free weaning. I know this for a fact.