Not a horror story - recovery from high dose long term use

[[je...]]

 

I must be honest, when I first started reading Success Stories at the beginning of my taper, I did not find it encouraging. Success Stories scared me. I thought to myself “Do I have to go through all this tremendous suffering in order to get off these stupid pills?”. I hope that my story will be encouragement for some, to know that it is possible to taper without terrible suffering. I do not want to minimise what I went through, because believe me, it was no walk in the park. I do feel that I suffered, but I am not a horror story and my symptoms were not as severe as many of the stories encountered here on BenzoBuddies. I was functional and that pretty much describes my withdrawal. Only functional. I worked, I kept my family together as best as I could, attended my children’s functions but it was hard as I felt immensely sick through it all. Many times I had no idea how I would get through a working day, a sporting event for my kids, but somehow I just pushed through. Weekends were mostly spent on the couch. I am grateful that I was functional and I did not end up going through benzo hell. I am also grateful that I have the most amazing family who has been extremely supportive through it all.

My main symptoms during withdrawal were; insomnia, head pressure, headaches, migraines, brain fog, anxiety, memory loss and anhedonia. Other symptoms I experienced to a lesser extent were; depression, depersonalisation, obsessive thinking, benzo belly and tinnitus.

How it all started:

I had severe muscle spasms in my jaw which left me in debilitating pain, struggling to open my mouth and even talking became painful. I was prescribed 2mg Clonazepam by a pain specialist after seeing numerous specialists over a period of approximately 8 years. I took Clonazepam for about 3 years. Of course it worked wonders. And of course I had no idea what Benzodiazepines were and there was no informed consent. One day when I got a repeat prescription, my doctor accidentally prescribed 0.5mg. I noticed the colour of the pills were different and then saw the dosage was less, but thought I’ll just take less because I’ve been doing pretty well and it might be time to stop this medication.

Then all hell broke loose. I got severely sick from the big cut in dose and didn’t know it was caused by the medication. I went to my GP who couldn’t find anything wrong with me after ordering numerous tests. Then one night it suddenly dawned on me that the only thing different in my life was the change in medication which I had neglected to tell her about. The following day I made another appointment with my GP and she then confirmed I was in benzo withdrawal. We increased my dose to 1mg and I started to feel so much better the following day.

I called the specialist's office who made the prescription error (he was on leave at the time) and told them there was a mistake in my prescription and I needed a new prescription for 2mg. I did not tell them what had happened over the past couple of weeks. The practice manager was upset that I had been prescribed benzo’s to manage my pain and said that is not how they do things at their practice, that I needed to taper off 2mg in 6 weeks and he would only give me a prescription for 6 more weeks as I should never have been prescribed benzo’s in the first place. Go figure. At this point I still didn’t know anything about tapering, so I followed his guidelines which was cutting 0.5mg every week up to 0.5mg and then 0.25mg weekly till the end.

Of course, you can imagine how that went. A 75% reduction followed by a 25% updose, then followed by a 50% reduction sent me into acute withdrawal where I ended up bedridden. This part was me experiencing benzo hell. I had diarrhoea, nausea, I couldn’t walk as my legs would give way under me, my head had so much pressure it felt like it was going to explode any second. I wanted to crawl out of my skin. I could just lie in bed and hope and pray the suffering would end. That’s when I came across BenzoBuddies and I updosed again to regain functionality. Literally within hours I felt functional after the updose. I knew it would not be possible to taper in 6 weeks which left me in a predicament because I had been cut off by the specialist. It was terrifying. However, I eventually managed to find a GP who was willing to prescribe to me for deprescribing purposes. She also allowed me to taper at my own pace.

Tapering journey:

During my three years use, I started experiencing insomnia and quite bad anxiety which I never had prior to using Clonazepam. When I learned about benzo’s I suspected that I was having some kind of tolerance withdrawal. My proper taper started at 1mg. In the beginning I really wanted to get this over and done with quickly so I could get on with my life. Somehow we all think ‘I’m suffering anyway, so let me make bigger cuts and suffer in one go, to get it over with’. Let me tell you, it doesn’t work that way. Bigger cuts = unnecessary suffering. Initially I made bigger cuts, I think around 12%, but I quickly had to make it smaller as it was just too big. I realised that even 10% cuts were too big for me. Keeping a daily journal where I tracked my symptoms were very valuable to determine when things were going south. I learned that for me around 7.5% cuts every two weeks were the best.

I used various methods, I did cut and hold, DMT, dry tapering, crushing pills and making capsules, as well as liquid. I don’t think one method is better than another, it’s whatever works for you. Throughout my taper I had been functional. I never missed one day of work due to withdrawal. A year into my taper I got Covid and I got severely sick from the infection which ultimately led to Long Covid (LC). The physical exhaustion caused by LC resulted in me having to quit my job. It took me approximately 9-10 months to recover from LC. During this time I also slowed down my taper. My withdrawal symptoms did not get any worse as I tapered through LC. It took me approximately 19 months to finish my taper.

Recovery:

I jumped at 0.025mg Clonazepam. It was uneventful. I did not experience acute withdrawal when I jumped and my symptoms remained unchanged. My recovery story though is not your normal recovery as it was mucked up by a condition unrelated to withdrawal. A week after I jumped I started having GI issues for a day or two. Because it coincided with jumping I thought it was withdrawal related. Then a month later it happened again, but it became progressively worse and more frequent. I also noticed that my brain fog, head pressure, insomnia and migraines were getting worse, but I didn’t link those to the gut problems. I thought it was all withdrawal related which it wasn't. About five months later, I mentioned it to my GP who told me that she suspected it was gluten related. She told me to cut out gluten from my diet and see if there’s improvement. Within two weeks I noticed improvement and within six weeks all the GI issues had resolved with big improvement in the other symptoms as well.

But then they had to test me for Celiac Disease which meant I had to go back on a gluten diet for two months. The gluten once again caused similar symptoms to withdrawal, only this time it was more severe, and I could barely get off the couch. Once the testing was complete, I was diagnosed with Non-Celiac Gluten Sensitivity. I immediately went on a gluten free diet and the symptoms abated within a month. This whole gluten ordeal took about 10 months to resolve. At one year off I was finally done with gluten and I felt like I had recovered about 50% from benzo withdrawal. I also felt ready to start working again and I started applying for jobs.

From the 12 month mark I felt like I was gradually improving. At around 18 months off, I started working again in a job which is completely different to what I had done before. When I got to around 21 months off, I felt that I had pretty much recovered from my benzo withdrawal. The reason I say this, is because I don’t think about my symptoms anymore. The thoughts of “when will this end” or “I don’t know if I can make plans because I might be too sick” or “not another wave again” or  “will I ever heal”  – those are gone.

What life looks like now

So the question everyone always wants to know, is are you 100% recovered? I don’t know how to measure that. I am not 100% the person I was prior to starting benzo’s. But I am now  7 years older than that person was and I am peri menopausal. I 100% see and describe myself as normal which someone going through withdrawal does not do. I still experience some minor symptoms, and I don’t know if my hormones are now causing these symptoms. I still have insomnia. This has greatly improved. It is better now than it was while I was on Clonazepam and experiencing tolerance withdrawal. During tapering I used to get 1-3hrs of broken sleep. I now average 5-6hrs of sleep. There is the very rare 7hrs night. I would be satisfied with 7hrs of sleep, so getting 6hrs is not far off the mark.

My memory is also not what it used to be. But it is so much better than during withdrawal. At my new job I had to learn three new software programmes and I was amazed at how quickly I picked it up. The only thing I struggle with is when there is information overload, but it doesn’t affect the quality of my life.

I still get headaches, but this was a pre-existing condition which I’m pretty sure is just continuing. The intensity of the headaches is not nearly as bad as it used to be during withdrawal. It now feels like a normal headache.

I consider myself recovered from benzo withdrawal. It does not control or consume my life anymore. I can go to work like a normal person. I can socialise, I can access a range of emotions again. My job is quite stressful, yet I don’t have anxiety about it. I don’t feel like a failure or a burden anymore. At the lowest point of my depression, I wrote in my diary that no one will even miss me if I wasn’t here because my life just didn’t have any purpose. Now I feel I can be a present mother and wife again in all aspects. I see the good around me. I like myself again. I enjoy doing life. I laugh. Life is good.

General:

I never had any sensitivities to food, medication or supplements. I could pretty much take anything without having a reaction. I even took several courses of steroids during withdrawal for medical conditions. I never followed any specific diet. I believe eating a healthy diet is the way to go.   

Please know that what you’re going through is most likely temporary. It is possible to taper, be functional and not be a horror story. We all fear that we will never recover from this because it is such a traumatic experience. But you WILL get better. Your present is not your future.

A big thank you to all the support I’ve received here on BB and a special thank you to the BB team. Most of my time here I’ve been a member of the team and I will always treasure the team support and encouragement.

 

[[Ro...]]

20 minutes ago, [[j...] said:

I must be honest, when I first started reading Success Stories at the beginning of my taper, I did not find it encouraging. Success Stories scared me. I thought to myself “Do I have to go through all this tremendous suffering in order to get off these stupid pills?”. I hope that my story will be encouragement for some, to know that it is possible to taper without terrible suffering. I do not want to minimise what I went through, because believe me, it was no walk in the park. I do feel that I suffered, but I am not a horror story and my symptoms were not as severe as many of the stories encountered here on BenzoBuddies. I was functional and that pretty much describes my withdrawal. Only functional. I worked, I kept my family together as best as I could, attended my children’s functions but it was hard as I felt immensely sick through it all. Many times I had no idea how I would get through a working day, a sporting event for my kids, but somehow I just pushed through. Weekends were mostly spent on the couch. I am grateful that I was functional and I did not end up going through benzo hell. I am also grateful that I have the most amazing family who has been extremely supportive through it all.

My main symptoms during withdrawal were; insomnia, head pressure, headaches, migraines, brain fog, anxiety, memory loss and anhedonia. Other symptoms I experienced to a lesser extent were; depression, depersonalisation, obsessive thinking, benzo belly and tinnitus.

How it all started:

I had severe muscle spasms in my jaw which left me in debilitating pain, struggling to open my mouth and even talking became painful. I was prescribed 2mg Clonazepam by a pain specialist after seeing numerous specialists over a period of approximately 8 years. I took Clonazepam for about 3 years. Of course it worked wonders. And of course I had no idea what Benzodiazepines were and there was no informed consent. One day when I got a repeat prescription, my doctor accidentally prescribed 0.5mg. I noticed the colour of the pills were different and then saw the dosage was less, but thought I’ll just take less because I’ve been doing pretty well and it might be time to stop this medication.

Then all hell broke loose. I got severely sick from the big cut in dose and didn’t know it was caused by the medication. I went to my GP who couldn’t find anything wrong with me after ordering numerous tests. Then one night it suddenly dawned on me that the only thing different in my life was the change in medication which I had neglected to tell her about. The following day I made another appointment with my GP and she then confirmed I was in benzo withdrawal. We increased my dose to 1mg and I started to feel so much better the following day.

I called the specialist's office who made the prescription error (he was on leave at the time) and told them there was a mistake in my prescription and I needed a new prescription for 2mg. I did not tell them what had happened over the past couple of weeks. The practice manager was upset that I had been prescribed benzo’s to manage my pain and said that is not how they do things at their practice, that I needed to taper off 2mg in 6 weeks and he would only give me a prescription for 6 more weeks as I should never have been prescribed benzo’s in the first place. Go figure. At this point I still didn’t know anything about tapering, so I followed his guidelines which was cutting 0.5mg every week up to 0.5mg and then 0.25mg weekly till the end.

Of course, you can imagine how that went. A 75% reduction followed by a 25% updose, then followed by a 50% reduction sent me into acute withdrawal where I ended up bedridden. This part was me experiencing benzo hell. I had diarrhoea, nausea, I couldn’t walk as my legs would give way under me, my head had so much pressure it felt like it was going to explode any second. I wanted to crawl out of my skin. I could just lie in bed and hope and pray the suffering would end. That’s when I came across BenzoBuddies and I updosed again to regain functionality. Literally within hours I felt functional after the updose. I knew it would not be possible to taper in 6 weeks which left me in a predicament because I had been cut off by the specialist. It was terrifying. However, I eventually managed to find a GP who was willing to prescribe to me for deprescribing purposes. She also allowed me to taper at my own pace.

Tapering journey:

During my three years use, I started experiencing insomnia and quite bad anxiety which I never had prior to using Clonazepam. When I learned about benzo’s I suspected that I was having some kind of tolerance withdrawal. My proper taper started at 1mg. In the beginning I really wanted to get this over and done with quickly so I could get on with my life. Somehow we all think ‘I’m suffering anyway, so let me make bigger cuts and suffer in one go, to get it over with’. Let me tell you, it doesn’t work that way. Bigger cuts = unnecessary suffering. Initially I made bigger cuts, I think around 12%, but I quickly had to make it smaller as it was just too big. I realised that even 10% cuts were too big for me. Keeping a daily journal where I tracked my symptoms were very valuable to determine when things were going south. I learned that for me around 7.5% cuts every two weeks were the best.

I used various methods, I did cut and hold, DMT, dry tapering, crushing pills and making capsules, as well as liquid. I don’t think one method is better than another, it’s whatever works for you. Throughout my taper I had been functional. I never missed one day of work due to withdrawal. A year into my taper I got Covid and I got severely sick from the infection which ultimately led to Long Covid (LC). The physical exhaustion caused by LC resulted in me having to quit my job. It took me approximately 9-10 months to recover from LC. During this time I also slowed down my taper. My withdrawal symptoms did not get any worse as I tapered through LC. It took me approximately 19 months to finish my taper.

Recovery:

I jumped at 0.025mg Clonazepam. It was uneventful. I did not experience acute withdrawal when I jumped and my symptoms remained unchanged. My recovery story though is not your normal recovery as it was mucked up by a condition unrelated to withdrawal. A week after I jumped I started having GI issues for a day or two. Because it coincided with jumping I thought it was withdrawal related. Then a month later it happened again, but it became progressively worse and more frequent. I also noticed that my brain fog, head pressure, insomnia and migraines were getting worse, but I didn’t link those to the gut problems. I thought it was all withdrawal related which it wasn't. About five months later, I mentioned it to my GP who told me that she suspected it was gluten related. She told me to cut out gluten from my diet and see if there’s improvement. Within two weeks I noticed improvement and within six weeks all the GI issues had resolved with big improvement in the other symptoms as well.

But then they had to test me for Celiac Disease which meant I had to go back on a gluten diet for two months. The gluten once again caused similar symptoms to withdrawal, only this time it was more severe, and I could barely get off the couch. Once the testing was complete, I was diagnosed with Non-Celiac Gluten Sensitivity. I immediately went on a gluten free diet and the symptoms abated within a month. This whole gluten ordeal took about 10 months to resolve. At one year off I was finally done with gluten and I felt like I had recovered about 50% from benzo withdrawal. I also felt ready to start working again and I started applying for jobs.

From the 12 month mark I felt like I was gradually improving. At around 18 months off, I started working again in a job which is completely different to what I had done before. When I got to around 21 months off, I felt that I had pretty much recovered from my benzo withdrawal. The reason I say this, is because I don’t think about my symptoms anymore. The thoughts of “when will this end” or “I don’t know if I can make plans because I might be too sick” or “not another wave again” or  “will I ever heal”  – those are gone.

What life looks like now

So the question everyone always wants to know, is are you 100% recovered? I don’t know how to measure that. I am not 100% the person I was prior to starting benzo’s. But I am now  7 years older than that person was and I am peri menopausal. I 100% see and describe myself as normal which someone going through withdrawal does not do. I still experience some minor symptoms, and I don’t know if my hormones are now causing these symptoms. I still have insomnia. This has greatly improved. It is better now than it was while I was on Clonazepam and experiencing tolerance withdrawal. During tapering I used to get 1-3hrs of broken sleep. I now average 5-6hrs of sleep. There is the very rare 7hrs night. I would be satisfied with 7hrs of sleep, so getting 6hrs is not far off the mark.

My memory is also not what it used to be. But it is so much better than during withdrawal. At my new job I had to learn three new software programmes and I was amazed at how quickly I picked it up. The only thing I struggle with is when there is information overload, but it doesn’t affect the quality of my life.

I still get headaches, but this was a pre-existing condition which I’m pretty sure is just continuing. The intensity of the headaches is not nearly as bad as it used to be during withdrawal. It now feels like a normal headache.

I consider myself recovered from benzo withdrawal. It does not control or consume my life anymore. I can go to work like a normal person. I can socialise, I can access a range of emotions again. My job is quite stressful, yet I don’t have anxiety about it. I don’t feel like a failure or a burden anymore. At the lowest point of my depression, I wrote in my diary that no one will even miss me if I wasn’t here because my life just didn’t have any purpose. Now I feel I can be a present mother and wife again in all aspects. I see the good around me. I like myself again. I enjoy doing life. I laugh. Life is good.

General:

I never had any sensitivities to food, medication or supplements. I could pretty much take anything without having a reaction. I even took several courses of steroids during withdrawal for medical conditions. I never followed any specific diet. I believe eating a healthy diet is the way to go.   

Please know that what you’re going through is most likely temporary. It is possible to taper, be functional and not be a horror story. We all fear that we will never recover from this because it is such a traumatic experience. But you WILL get better. Your present is not your future.

A big thank you to all the support I’ve received here on BB and a special thank you to the BB team. Most of my time here I’ve been a member of the team and I will always treasure the team support and encouragement.

I really appreciate your sharing your story.  I'm glad that it was not "benzo hell" for you and that you remained functional throughout.  It certainly was a rough beginning for you and although I'd not wish it on anyone, the experience likely puts you in a position where you can empathize better with those doing rapid tapers, detoxes, or CTs.

I've never revealed this to you and was thinking about maybe doing so in a Success Story of my own, but I used your tapering strategy as a kind of template for my taper of clonazepam.  It's not simply a coincidence that both of our tapers lasted 19 months and averaged 7.5% reductions per cut.  Before choosing your strategy as the best, I had spent hours analyzing the various tapers employed by BB members.  So, @[je...], I thank you very much for being such a shining example of a benzo taperer.

I applaud your tenacity and fortitude as you soldiered on through your LC and later, when you were having GI difficulties.

[[Pa...]]

This is such an informative and well organized success story @[je...], it was a delight to read and I learned more details of your journey.  You've been through so much, even some you haven't mentioned here but through it all, you've persevered and supported others.  The timing of your gluten condition was terrible but I'm so grateful you did the testing to find out the true cause of your digestive issues, too many of us would have chalked it up to benzo's, this proves how important it is to get checked out.  

Dealing with long Covid and benzodiazepine withdrawal was no picnic, I still don't know how you managed that. 

I'm so happy you've written your story, thank you for all you do.

@[Pa...]

[[je...]]

34 minutes ago, [[R...] said:

I really appreciate your sharing your story.  I'm glad that it was not "benzo hell" for you and that you remained functional throughout.  It certainly was a rough beginning for you and although I'd not wish it on anyone, the experience likely puts you in a position where you can empathize better with those doing rapid tapers, detoxes, or CTs.

I've never revealed this to you and was thinking about maybe doing so in a Success Story of my own, but I used your tapering strategy as a kind of template for my taper of clonazepam.  It's not simply a coincidence that both of our tapers lasted 19 months and averaged 7.5% reductions per cut.  Before choosing your strategy as the best, I had spent hours analyzing the various tapers employed by BB members.  So, @[je...], I thank you very much for being such a shining example of a benzo taperer.

I applaud your tenacity and fortitude as you soldiered on through your LC and later, when you were having GI difficulties.

Thank you @[Ro...]. I am so happy to know my taper helped someone. And thank you for all the support you give others.