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a lifetime of decisions, and a long weird path back towards reinstatement


[xe...]

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Hello,

 

I had initially kept this post to a handful of staff members, but was encouraged to feel free to make a more public post.

 

Put simply, I am back on benzodiazepines after an extended period off, and while I have deep reservations about this, after eight months it does not yet seem to have been a mistake.

 

Abbreviated backstory: I was on benzos for a number of years in late adolescence / early adulthood for anxiety based reasons. I had mild tinnitus at that time (possibly attributable to many things, including a distant history of childhood ear infections). Tapering was brutal and took me 14 months, and I wrapped that up sometime in 2005. I don't recall tinnitus ever being a problem, except briefly during parts of the taper.

 

In 2010, an acoustic trauma did some significant damage to my auditory system, the tinnitus turned into a wailing monster, and I used benzos again for about a year before tapering again. I spent 2011-2015 basically miserable, highly functional but chronically consumed with the violent, often painful, extremely high pitched noise in my skull. I tried all kinds of things; if there is a supplement, drug, medical practice, massage practice, alternative medicine practice that someone on Google says helped their tinnitus, I probably tried it. I also tried doing "nothing"; I learned to meditate. I learned to sleep with earplugs in spite of the noise. I spent a lot of money; I spent $10,000 to be a lab rat in one clinical trial alone (lots of travel involved).

 

I remain hopeful about the tinnitus treatments that are in the pipeline, but a little voice continued to say "I need to do something now", as my life sort of passed before my eyes. I achieved significant professional success. I was able to relocate out the city to a pristine, quiet area in 2016. This did all make me feel better in some ways, but still the noise.

 

In late 2015, unrelated medical circumstances forced me to consider short-term PRN use of Valium, and, of course, I discovered that it still "worked" as far as taking my mind off the tinnitus. From early 2016 until November of last year, I used Valium PRN; when the tinnitus would become absolutely intolerable, I would take enough to knock it way back (usually 10-20mg over 24-36hrs), and then try to not do that again for 3-4 weeks. I became a parent over this time period, and I realized that the times I was the most medicated were also the times I felt the most joy and connection with my child. By July of 2018, I was agonizing over the idea of reinstatement, but I wasn't sure.

 

I made a list of every possible tinnitus remedy that seemed reasonably attested which had not yet been attempted. It was a pretty short list which included some out there ideas like "cervical chiropracty" and "microdose psilocyban". None the less, I crossed these items off my list as I tried them. Finally, in late November of last year, well supported by a medical team (including a prescribing doctor who is deeply aware of the hazards of benzos and necessity of a slow withdrawal), I elected to resume daily benzo use. After 2 weeks at 25% of the dose I'd previously been on long term, things felt very bad; more or less, I felt like I was in withdrawal, and I almost aborted the experiment then and there. One of my medical team persuaded me to at least attempt my full prior dose for some period of time; I also elected to supplement it with gabapentin based on some research into the combination for tinnitus specifically (and the general observation that gabapentin is much less scary than benzos, so if it can be used to supplement a benzo dose and reduce benzo consumption, that's probably a win).

 

More or less I had a one month "honeymoon" where life seemed too good to be true, and as expected, that faded as tolerance became obvious and peripheral side effects also vanished. However, what I am left with, so far, is a life which is much more manageable. It's hard to put numbers on things, but the tinnitus is more distant, it's generally less disturbing when it does get my attention, and I've been able to make significant progress in my family life, in my professional life, and in therapy, which had been blocked by the state of utter discomfort, misery and despair that my tinnitus had thrown me into. The general observation of my spouse is that I am easier to talk to, more likely to listen to them, less likely to snap, and more likely to be sympathetic and caring in general.

 

To make a few things clear:

This was my choice and I would not encourage anyone else to do the same thing. No one's circumstances are identical. For all I know, my use of benzos during developmental years caused problems that couldn't self-fix, and if not for that I might not be in this situation at all. Likewise, if I had taken better care of my ears, or had better genetics around hearing, tinnitus and anxiety, I might not be in this situation. But, that doesn't matter: the way things are, is the way things are.

 

I do not know the long term results of this (and neither do you) - I waited more than six months before posting this because I wanted to be sure a beneficial effect that outweighed my reservations about benzo use, would persist for some period of time after obvious tolerance had set in. It's entirely possible that this will "stop working" at some point, and I will be left with my generally terrifying tinnitus on top of having to do another taper. But, it's also possible that won't happen (one of my family members has taken Klonopin with no loss of efficiency for more than 15 years) - and it's further possible that some of the tinnitus treatments which are currently in the experimental or early marketing phase will turn out to be extremely effective, at which point attempting another taper might seem very rational to me.

 

I agonized over this decision more than you can possibly imagine over a five year period; eight months in, it's given me eight of the best months of the last 10 years of my life. I am happy to answer any reasonable questions, but I ask that you respect my right to autonomy and decision making over my own body.

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I know what a b*tch tinnitus can be. I had a kettle whistle in my left ear for a time. So glad you found some relief, xerxes. If it had to come from a benzo, so be it.
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Do you mind my asking what the dosage is of Klonopin that you're taking now?

 

I definitely feel that anyone who needs to reinstate ought to do so if the drug has worked for them. To know that you've had good luck while being on them certainly sounds wonderful. I do wish that something would work for me, but it isn't benzos, as they made me feel awful. I know it's terribly difficult to go through year after year of suffering, and the tinnitus must have driven you crazy.

 

You did not go about this lightly. You tried very hard to not be on benzos again. I really applaud your methodology!

 

 

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Hi Xerxes,

 

Thank you for posting this. Your decision to reinstate seems very considered and rational. Although the premise of BenzoBuddies is to help members cease use of benzodiazepines, there is a deeper, more fundamental aim for Buddies (and everyone): to be the best we can. Benzodiazepines are like any other medication: they have negatives and positives. Just because the vast majority of our self-selecting membership see this class of medications as deeply problematic (for ourselves), this does not mean that the balance does not shift to the other side for other people, or even some other members. So long as members carefully consider the pros an cons of reinstatement, there is nothing inherently wrong in deciding to reinstate benzodiazepines.

 

I am very happy that this worked out well for you Xerxes. I know that you have suffered from debilitating tinnitus for a very long time. I have not experienced tinnitus, but I did suffer from chronic insomnia (as a withdrawal reaction) for many years. So, I at least understand the chronic part of an invisible ailment. Things eventually got better for me, but mine was a different situation. Although extremely reluctant to do so, I did make use of Atarax for short periods to aid my recovery. You did what you needed to do; we all do what we need to do, and what is best for us.

 

Well done, and good luck.

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I appreciate the open mindedness shown so far, I was a little afraid I'd get dogpiled. I think other, less friendly medical forums have led me to forget what a great community this is.

 

.it was a tough decision' date=' so glad it worked out well.[/quote']

For the moment, yes, and we'll handle the future when we get there....

 

Do you mind my asking what the dosage is of Klonopin that you're taking now?

2mg/day, which is the dose I was stable on from 1999-2004. I had initially pushed for a rapid ramp to that dose; my doctor didn't like that at started me at 0.5. The lower dose really did NOT agree with me; after 2 weeks I felt STRONGLY like I was in withdrawal (sweating, worse insomnia, obsessive thinking) and that was when I almost gave up. My psychologist suggested that since I'd already bitten the bullet and started on this path, maybe I should try my "old" dose for a bit before deciding the experiment was a failure. Within 3 days at 2mg I'd "stabilized", and even though there is an ebb and flow (and certainly I still have tinnitus), it hasn't gotten "bad". I've radically radically cut my alcohol consumption to 0-2 drinks a day; after a period of barely drinking at all, post benzo, and then years of having to really constantly monitor my intake... the desperation of the situation I was in had me drinking far too much, on and off -- which was both much less effective, and also, IMO, probably worse for my body/brain than a benzo is.

 

In addition to the klonopin and gabapentin I am using fairly significant amounts of cannabis (which is both legal here and basically free, as I can self-produce). I've tried all of these things in isolation and various combinations, and my take is that the cannabis is doing something synergistic, which may be making the Klonopin more effective. All of this makes me very nervous, but my psychologist thinks that cannabis is the least of my worries, Gabapentin is not that hard to withdraw from (I agree, having done it twice) and that yes, benzos are scary and dangerous and an absolute bear to get off of - but he (and I) continue to believe that I'm making all kinds of progress in therapy on stuff that was just impossible for me to even think about when I was just in piercing-metal-shop hell land.

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Things eventually got better for me, but mine was a different situation.

 

even though tinnitus isn't the only reason I find Klonopin useful, I think I could likely handle most of the rest of it well enough if that part was gone. There's some promising tinnitus treatments in the pipeline, and if any of them even land in my hands and are effective... then I might looking at taper #3, joy of joys!

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xerxes I think it takes incredible strength to decide what is best for you, and I only wish you well. I too am a sufferer of Tinnutis, it started about the time I developed Meniere's disease. I was given Valium to ease the noise, but it really never helped, but over the years I just grew to accept that I would have a lot of noise...Well one day I read an article about Ginger capsules helping with Tinnitus and I tried it...I took them for a while and basically just went about my life with a lot of noise...but one day...I was surprised that I no longer heard the symphony in my ears...I will say that when I am overly tired or sick with flu etc, it will ramp up, but on the whole I am 98% better. I am really low right now with third taper and if things get too wonky...I will go back to 2mg and stay there...I just have fought as much as I can, and what will be will be...Please know that whatever helps us to feel better is worth it..💖 Peace and Healing.
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Hello,

 

I had initially kept this post to a handful of staff members, but was encouraged to feel free to make a more public post.

 

Put simply, I am back on benzodiazepines after an extended period off, and while I have deep reservations about this, after eight months it does not yet seem to have been a mistake.

 

Abbreviated backstory: I was on benzos for a number of years in late adolescence / early adulthood for anxiety based reasons. I had mild tinnitus at that time (possibly attributable to many things, including a distant history of childhood ear infections). Tapering was brutal and took me 14 months, and I wrapped that up sometime in 2005. I don't recall tinnitus ever being a problem, except briefly during parts of the taper.

 

In 2010, an acoustic trauma did some significant damage to my auditory system, the tinnitus turned into a wailing monster, and I used benzos again for about a year before tapering again. I spent 2011-2015 basically miserable, highly functional but chronically consumed with the violent, often painful, extremely high pitched noise in my skull. I tried all kinds of things; if there is a supplement, drug, medical practice, massage practice, alternative medicine practice that someone on Google says helped their tinnitus, I probably tried it. I also tried doing "nothing"; I learned to meditate. I learned to sleep with earplugs in spite of the noise. I spent a lot of money; I spent $10,000 to be a lab rat in one clinical trial alone (lots of travel involved).

 

I remain hopeful about the tinnitus treatments that are in the pipeline, but a little voice continued to say "I need to do something now", as my life sort of passed before my eyes. I achieved significant professional success. I was able to relocate out the city to a pristine, quiet area in 2016. This did all make me feel better in some ways, but still the noise.

 

In late 2015, unrelated medical circumstances forced me to consider short-term PRN use of Valium, and, of course, I discovered that it still "worked" as far as taking my mind off the tinnitus. From early 2016 until November of last year, I used Valium PRN; when the tinnitus would become absolutely intolerable, I would take enough to knock it way back (usually 10-20mg over 24-36hrs), and then try to not do that again for 3-4 weeks. I became a parent over this time period, and I realized that the times I was the most medicated were also the times I felt the most joy and connection with my child. By July of 2018, I was agonizing over the idea of reinstatement, but I wasn't sure.

 

I made a list of every possible tinnitus remedy that seemed reasonably attested which had not yet been attempted. It was a pretty short list which included some out there ideas like "cervical chiropracty" and "microdose psilocyban". None the less, I crossed these items off my list as I tried them. Finally, in late November of last year, well supported by a medical team (including a prescribing doctor who is deeply aware of the hazards of benzos and necessity of a slow withdrawal), I elected to resume daily benzo use. After 2 weeks at 25% of the dose I'd previously been on long term, things felt very bad; more or less, I felt like I was in withdrawal, and I almost aborted the experiment then and there. One of my medical team persuaded me to at least attempt my full prior dose for some period of time; I also elected to supplement it with gabapentin based on some research into the combination for tinnitus specifically (and the general observation that gabapentin is much less scary than benzos, so if it can be used to supplement a benzo dose and reduce benzo consumption, that's probably a win).

 

More or less I had a one month "honeymoon" where life seemed too good to be true, and as expected, that faded as tolerance became obvious and peripheral side effects also vanished. However, what I am left with, so far, is a life which is much more manageable. It's hard to put numbers on things, but the tinnitus is more distant, it's generally less disturbing when it does get my attention, and I've been able to make significant progress in my family life, in my professional life, and in therapy, which had been blocked by the state of utter discomfort, misery and despair that my tinnitus had thrown me into. The general observation of my spouse is that I am easier to talk to, more likely to listen to them, less likely to snap, and more likely to be sympathetic and caring in general.

 

To make a few things clear:

This was my choice and I would not encourage anyone else to do the same thing. No one's circumstances are identical. For all I know, my use of benzos during developmental years caused problems that couldn't self-fix, and if not for that I might not be in this situation at all. Likewise, if I had taken better care of my ears, or had better genetics around hearing, tinnitus and anxiety, I might not be in this situation. But, that doesn't matter: the way things are, is the way things are.

 

I do not know the long term results of this (and neither do you) - I waited more than six months before posting this because I wanted to be sure a beneficial effect that outweighed my reservations about benzo use, would persist for some period of time after obvious tolerance had set in. It's entirely possible that this will "stop working" at some point, and I will be left with my generally terrifying tinnitus on top of having to do another taper. But, it's also possible that won't happen (one of my family members has taken Klonopin with no loss of efficiency for more than 15 years) - and it's further possible that some of the tinnitus treatments which are currently in the experimental or early marketing phase will turn out to be extremely effective, at which point attempting another taper might seem very rational to me.

 

I agonized over this decision more than you can possibly imagine over a five year period; eight months in, it's given me eight of the best months of the last 10 years of my life. I am happy to answer any reasonable questions, but I ask that you respect my right to autonomy and decision making over my own body.

 

I'm glad to have found this post. I admire your courage and honesty in talking about your present BZD situation.

 

Yes, some people need to stay on psych meds, the BZD included, for most of their lives. And practice some kind of harm reduction, especially in case of meds like the BZD. Which produce dependence and tolerance in the long run.

 

As Colin rightly noticed: we need to strive to be the best we can.

 

There is a quote by the Dalai Lama "The point is not to be better than the other man, but than your previous self."

 

Some folks just seem to function well in spite of the BZD. Others fall apart, cause they make their psychological problems worse.

 

I cannot remember having tinnitus. I have an extreme oversensitivity to external noise. No meds for this.

 

I suffer from insomnia and often consider to reinstate the BZD. The problem is, they made my depression and anxiety like 100% worse. And only helped my insomnia short-term.

 

I see nothing glorious about being med free. Psych meds do have nasty side effects, but I believe some conditions require medical treatment. Including psychiatric treatment.

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Hello Xerxes,

 

I know you have had a difficult time with tinnitus for a very long time. It was from your accounts, debilitating. We've discussed this is in the past since I've had low level tinnitus it seems, forever. So many things are ototoxic which IMO can cause all kinds of symptoms. 

 

Clearly, the tinnitus was causing tremendous harm to you, disabling you and preventing you from enjoying your life, especially the time with your little one. 

 

I thank you for your honesty and your willingness to share this experience.  It's wonderful that life is tolerable, in fact, enjoyable now. Live in the moment and deal with the future as it comes.  I wish you all the best. This is your life and you should be in control of it, as much as it is humanly possible.

 

pianogirl  :smitten:

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Can I ask you if you initially had any worsening of symptoms when you reinstated.

 

I am trying but get worse hyperacusis, terror etc as dose goes in and out of system and terrible heat and sweating.

 

I was on it for muscle contracture and it is too much without benzo.

 

I have tried every other Drug.

 

I was fine on diazepam for 20 years but now seem to have paradoxical effects from it. I don’t know if these will ease given time.

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I appreciate the open mindedness shown so far, I was a little afraid I'd get dogpiled. I think other, less friendly medical forums have led me to forget what a great community this is.

 

.it was a tough decision' date=' so glad it worked out well.[/quote']

For the moment, yes, and we'll handle the future when we get there....

 

Do you mind my asking what the dosage is of Klonopin that you're taking now?

2mg/day, which is the dose I was stable on from 1999-2004. I had initially pushed for a rapid ramp to that dose; my doctor didn't like that at started me at 0.5. The lower dose really did NOT agree with me; after 2 weeks I felt STRONGLY like I was in withdrawal (sweating, worse insomnia, obsessive thinking) and that was when I almost gave up. My psychologist suggested that since I'd already bitten the bullet and started on this path, maybe I should try my "old" dose for a bit before deciding the experiment was a failure. Within 3 days at 2mg I'd "stabilized", and even though there is an ebb and flow (and certainly I still have tinnitus), it hasn't gotten "bad". I've radically radically cut my alcohol consumption to 0-2 drinks a day; after a period of barely drinking at all, post benzo, and then years of having to really constantly monitor my intake... the desperation of the situation I was in had me drinking far too much, on and off -- which was both much less effective, and also, IMO, probably worse for my body/brain than a benzo is.

 

In addition to the klonopin and gabapentin I am using fairly significant amounts of cannabis (which is both legal here and basically free, as I can self-produce). I've tried all of these things in isolation and various combinations, and my take is that the cannabis is doing something synergistic, which may be making the Klonopin more effective. All of this makes me very nervous, but my psychologist thinks that cannabis is the least of my worries, Gabapentin is not that hard to withdraw from (I agree, having done it twice) and that yes, benzos are scary and dangerous and an absolute bear to get off of - but he (and I) continue to believe that I'm making all kinds of progress in therapy on stuff that was just impossible for me to even think about when I was just in piercing-metal-shop hell land.

 

Thank you, Xerxes! I'm glad that your psychologist is playing an active role in this. I know every step of the way can be scary - there is NO roadmap, after all - but you have such a methodical way of going about it and are so set on having a watchful eye over the situation that I think you'll be okay!

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I’m very happy for you. I honestly had no 💡 idea. If it makes your life happier, then I think it’s great 👍. I do hope that the tinnitus will go away on it’s own. My brother had it for many years without ever taking a benzo. He silently lived with it. One day he woke up and it was gone! Sending good vibes.
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  • 2 weeks later...

 

I have tinnitus, and it is bad but not disabling like you describe.

 

However, my insomnia is disabling and have spent years at this.

So thanks for posting your story.

I'm pretty sure if I took a therapeutic dose of klonopin or some benzo I'd sleep again... at least for a while.

 

I think after 40 years, and VERY sensitive hearing (at the time) and aversion to noise, and pre-existing sleep probs it will b e unlikely I can get off these drugs.  But guess after so much pain I hang on to trying to get off.

 

You mention medical forums, and wonder if, other than here, there is discussion about psychiatric drugs that help, as well as the trying to taper off..? 

 

Best of luck to you.

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Does anyone know if there are medical forums where it is discussed which might be best way to go?  I guess if you have good psychologist that would sure help, and know everyone has to try thing and find out for themselves, but wondered if there were such a forum? 

 

Just wondering...

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Xerxes, this is such a brave and interesting post. I thank you for it. We have to realise that each person has their own path determined by their own situation, circumstances, body chemistry and reaction to the drugs or to tapering the drugs. I'm so glad you're leading a good life and I hope it keeps getting better.
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[2d...]

I 've been having tinitus for almost 2 years now and still there. It happened after taking an Antibiotic -Cipro- and a benzo- Bromazepan- Although I had a cold and that could have helped too.

We have to be careful! There are two types: the "pulsatil" tinnitus and the "regular". The pulsatil type is mostly caused by a vascular issue in you arteries or veins inside your brain. The main characteristic of this type is that you hear a swooshing sound and coincides with your heart beat. In other words you hear your blood flowing with different sounds at the rhythm of your heart. Normally your ear is not the problem although loss of hearing can make you hear whats going on inside your brain.

Regular tinnitus is more of a high pitch or cracking sound. And the problem is actually in you ear. Most sufferers get it due to exposure to high external volume sounds, trauma, or ototoxic drugs- Benzos are one of them. Benzos are so weird drugs that can help or produce tinnitus.

As it was said there is not cure for the regular tinnitus but meditation and distraction helps a lot.  benzos can also help lowering the anxiety and in turn the tinnitus effect.

For those who have pulsatil tinnitus there is an excellent group on Facebook called wooshers.com.

Regards,

Miguel

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Can I ask you if you initially had any worsening of symptoms when you reinstated.

 

I am trying but get worse hyperacusis, terror etc as dose goes in and out of system and terrible heat and sweating.

 

hi, sorry, I missed this until now.

 

I was paradoxical at 0.5mg kpin and almost aborted the idea a couple weeks in. Sweating, anxious, a mess. A few days at 2mg turned that around and that's where I've stayed since.

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xerxes,

 

So, you were off, reinstated at .5  but then it took a jump to 2 to help?  You did not try in between dosages?

 

thx am so not sure what to do myself.  But life toally not manageable and this has gone on for so long...

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I have tinnitus, but not to the same degree as your good self.

 

I have tried to imagine what extreme tinnitus might be like, and know that I could not endure it in its extreme.  I would do the same as you.  Not really any option outside of going insane with it. 

 

I hope your future continues to be tinnitus free, reduced, and manageable. 

 

Ever onwards. 

 

Dee

:smitten:

 

 

 

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I was on and off benzodiazepines for sleep (and later for trauma) for 31 years.  Tapering was complicated only by lack of knowledge, and now I am completely well again.

 

Enjoy this much-needed respite.  You know how to taper should you decide you need to do so at some point, and you will be okay.

 

Take care, Xerxes.

 

Challis  :smitten:

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