Benzodiazepine Withdrawal — SEVERE Hyperacusis

@Daniel Lion Thank you for your support. I am going plenty slow, as slow as the Ashton Method or maybe even slower, but I'm not stabilizing and I was getting worse holding my dose because I held at a lower dose too long....I am in the worst case scenario category that is possible, honestly, but I know it can get worse and I'm afraid b/c it has been getting worse. I am holding on for dear life, that's an understatement. I'm in severe tolerance withdrawal with severe acute symptoms. I know for people who are starting off their tapers in good places, or whatever, that a symptom based taper is the way to go, with it taking years to come off but that is not my situation. It's going to take me several months but a slow, slow taper is not in the cards for me. I need to push past some of these symptoms, as hard as they are, and get off so my body can heal.....still thinking it's going to take 8-12 months to get off, though, and then as you said, longer to heal. For most, a slow, steady taper wins the race but for the unfortunate ones that are in severe tolerance, that's often not the case.

My 6 youngest kids had to go to Michigan. My heart is absolutely broken into pieces as I do just want to be with them, and be a mother, but for now, it's necessary. I'm hoping while they are away, my nervous system can settle down some because, as you said, it's totally freaking out. If I didn't have the hyperacusis, it would be a lot better to handle them here.

 

@JasonP I was reading through some info and found that you used Trileptal (Oxcarbazepine) to get off Klonopin. I'm having a hell of a time, as you might see if you read through some of my info. It doesn't look like you had hyperacusis but only tinnitus - I have both, but the H is so severe, my nerves are all so hypersensitive. I'm extremely agitated and the noise hits my CNS like crazy. I'm still at .4 mg of klonopin and sucked into major tolerance withdrawal - my situation is much more dire than yours as I held too long after tapering from a higher dose and then got thrown into acute. I'm an extreme case and extremely symptomatic....it's going to take me many months now to get off this remaining dose via microtapering. I'm very sensitive to meds and supplements and it looks like you took many without problem so we are likely not in the same boat. Did you just take Trileptal and discontinue your last .125 mg of klonopin completely? There's no way I could do that. Or did you take the Trileptal and continue tapering the last .125 mg?

My doctor wants me to try Tegretol or Trileptal but I'm finding interactions showing up that these meds reduce the amount of klonopin and can throw you into withdrawal so I'm afraid to try...that and more side effects.

Just wondering what your experience was.

 

I can't exactly remember for sure but I think I was able to switch to Trileptal without tapering anymore. I'm pretty sure I was on either .125mg or less of Klonopin each day. I was also taking Lamictal. Lamictal was kind of "strong" for me and I had to continuously lower the dosage or I would feel too stimulated. I think the lowest I ever felt it working at was around 37.5mg. I used it for depression. Looking back, I don't know if that was the right thing to do. I have had much less depression though since being off klonopin though. Neurontin also seemed to help me reduce klonopin use. I am so sorry you are going through all this. Hang in there, you may be able to get some good advice from benzobuddies.org.

 

Thanks - already been on benzobuddies. I'm like one of the most severe on there. I am way worse off than you b/c there's no way I could jump off from .125 mg. I could have 6 months ago, I do believe. But since i held my taper and got into severe tolerance - with acute symptoms, there's no way......Glad you are doing better. Can you tell me what symptoms the Trileptal helped you with? You didn't have hyperacusis, though, correct? Only tinnitus?

 

Yah, best to let your system settle down and have some down time away from the kids.
Use speaker phone, and just tell them you love them... I know you miss them.
Cheering for yo BM... Daniel.

 

Benzomom: Have you thought maybe of GOING BACK on the benzos? Then maybe your awful symptoms would disappear, just like methadone would help an heroin addict avoid the worst of heroin withdrawal. What have you got to lose to try? Another 2 weeks, let's say, on benzos, and see what happens. That will not make much of a difference if you decide to go back to tapering off, or if the 2 weeks on benzos makes no difference to your hyperacusis. Of course, if it works, you will have to stay on benzos for life maybe. Is that not better than this hell of hyperacusis?

See also the thread below (Similar Thread section): Long term use of benzo to quiet down tinnitus?

Marco

 

Marc, yes, I have considered it but it's a terrible long term solution and here's why.....you can quickly become tolerant to the dose of the medication. So if I increased it to 1 mg or even 2 mg, it may work for a while but eventually, the body is going to become tolerant to it and then it's just going to want more....then I will be back into the state that I am currently in, only now I would have to taper off of 2 mg instead of .5 mg. That's why these medications are so addictive. That's why these medications are not meant for long term use. Some people.....they have no problem being on 1 mg or even 2 mg of clonazepam for life and never become tolerant. They never have the issues that I'm facing. No one knows why this is - many factors can be at play here.....genetics, metabolism, underlying other disorders, etc. Also, at least here in the US, medical professionals are cracking down on benzodiazepines and they are cutting people off of them, similar to what they are doing/have done for opiods. So it's better to get off now, while at .5 mg.

The idea is to slowly taper down, hoping that the body will adjust in time and eventually heal, with the receptors reuptaking and the body compensating. It's an extremely painful process (very hellish) and that's why they say that benzodiazepines for many people (not all) are harder to come off of than any other drug. With that said, I am in like the 1-3% category of people who are having such a hard time coming off and it's truly because I held this lower dose and became tolerant and apparently, because I rapidly metabolize the drug. I went into acute withdrawal while still on the med, before I'm even off. That's not normal for most folks.

If I were in my mid to late 60s, I would probably not do this. But I'm only 41 years old with many years ahead of me.

Be glad that you are one that does not have trouble just getting off but don't take this for granted. I have heard of folks who also could just stop several times and then all the sudden, they could not and had to experience a painful withdrawal like many others. You have to make your own decision.

I have been in contact with a company that uses hearing aids for people with hyperacuis/tinnitus and custom tailors them to block out some of the louder/more difficult noises and I'm thinking of trying them. They are quite expensive but if they could help me get through this painful and difficult time, it would be worth the price. I can now definitely tell that the hyperacusis is more in my left ear than in my right.

 

Thanks for your reply Benzomom:

Your reasoning about your decision to taper off seems good, but I would still go back on them personally. It is funny that, although I had heard of this withdrawal stuff, it never scared me until I read your posts. It is a salutary scare, and I thank you for it. Yes it does seem to be true that doctors are cracking down, because mine whipped me down from 60 to 28 .5mg a month a couple of years ago, which bothered me, because I liked to accumulate them for a possible bad hyperacusis setback. Then I would take about 2mg a day for months sometimes. And then as my hyperacusis got better, I would naturally cut down on the clonazepam, not because of any withdrawal scare, but just because I did not need them anymore. Nothing ever happened.

I tell you, the bottom line for me is like having the urge to take a drink: you may know that eventually you may get cirrhosis or peripheral alcoholic neuropathy or whatever, but YOU WANT RELIEF RIGHT NOW, and you do not care about the future consequences. That was and is my situation with clonezepam: I would be putting up with hellish hyperacusis for the whole day, and I could not wait to pop those 2 mg pills at night to get some relief, which would put me into TOLERABLE hyperacusis for a few hours, out of intolerable hyperacusis. Sometimes that would carry over into the next day. Also, actually EXPERIENCING the temporary improvement would give me HOPE away from the panic and anxiety of not knowing if I would get better or not. Oh I knew merely intellectually that I would probably get better (and I always did, but sometimes not back to the same level of comfort), but I needed to EXPERIENCE IT, or I would wallow in despair, sometimes moderately suicidal. So that is why, even if I am more afraid right now, the next time I have a bad hyperacusis day, I am going to take those 2mg, and DAMN the POSSIBLE consequences. Just like I am going to have those few beers (it just so happens that my liver is in fine shape, which really surprises me because I drank a lot because of the fact of having this handicap; I would also add that clonazepam actually helps the hyperacusis whereas alcohol only anesthesises, a big difference). Also because I have never had the level of anxiety and depression as I do now, due to moving around a lot, possible homelesness, I do pop 2mg once in a while for that or drink 2-3 beers. The urge just comes over you very powerfully, like when my new sometimes mentally unbalanced rooommate takes a fit over nothing. He was agitated over something last Friday and it scared me because he can throw me out whenever he wants. So while he was outside for a smoke (and he continues with that despite starting emphysema) I ran to the toilet and popped 2 mg, stuff I never had to do before . And naturally there was no one to turn to instead of pills or booze because basically I am surrounded either by strangers, psychos, or people who do not like me, like my sister, the Good Mormon, a "Christian" who extends no compassion to her brother, just neutrality or condemnation (thank you Jesus!).

So maybe that explains that it would have to be a monumental agony to wean me away from these meds or the beer. Do you understand? I think so.

Take care. I have been thinking about you a lot and hope your hyperacusis gets well and your withdrawal recedes.

Marco (banned from the Hyperacusis Network for no good reason by that "Christian" Dan Malcore. This is not to condemn all Christians of course.)

 

@Marc22 I completely empathize!!! If you do not think that my urge to go pop those pills to get relief isn't strong, then you are mistaken. Very much so!! Especially now at the height of how bad the hyperacusis is. I can absolutely understand why you would want to. But I have also learned that once you are in this state, even increasing the dose or going back on may not help you. The SI is strong at times from all of this, especially now with the hyperacusis. I am urged on by the hope for a better life, by being a mother to my children again, by being a wife to my husband again.....of regaining health.

The idea is that if you can suffer through hell, come out the other side, and hopefully heal, then most of the symptoms including hyperacusis will go away. I'm hoping so since it's not just hyperacusis but all of my nerves are raw, exposed and heightened. It just so happens that the severe hyperacusis is absolutely one of the most painful symptoms. I was always sensitive somewhat to sound. I never liked concerts, fireworks and such but I had no problems with going to restaurants or such. I am hoping and praying that through all of this, once it is over, that things will settle, that my nerves and my ears in turn, will heal. I know that it can take time, however. So now, I'm in the process of trying to see what I can do to deal with it while I'm going through it.

I judge no one for going back on the med or taking it. Believe me, if I could go on it for life and guarantee no problems and live somewhat normally, if not perfect, then I would do it. But that doesn't seem to be my experience.

 

Curious what happened at your ENT appt? I too have severe tinnitus, think I may have hyperacusis, although other than a very heightened sensitivity to external, I do not know how it is diagnosed. It was intermittant from May, 2019 until July when I saw the ENT and had a hearing test. That hearing test spiked my tinnitus from intermittant to a constant, loud pitch that hasn't stopped since leaving that office.

 

I'm so sorry - that is so sad and wrong, though I wonder if some point, it was not inevitable for your T to become constant at some point from loud noise anyways? The ENT said my ears looked fine. The audiologist there was not comfortable doing a hearing test and I'm glad she did not. Thanks to information I gathered from this group, I was skeptical of having any tests done anyways. I have an appointment with a new audiologist that specializes in T and H but now, I'm considering cancelling.....unless I am serious about hearing aids to try (which could potentially bring down some of the sound level and provide some masking), there's nothing that they can do for me right now.

Did you already have hyperacusis before the hearing test? My understanding is that for the hyperacusis, they do some sort of test where they start at the lowest sounds and then work their way up very carefully. I am new to all of this, however, so I'm not completely familiar. I'm afraid of more serious tests right now, though.

 

Benzomom:

I think you are very courageous in putting up with all this hellish discomfort, hoping that you will come out better in the long term. It is probably what an alcoholic has to go through to stop drinking., to overcome those urges to drink when the cravings come for whatever reason. But since I have no problems with the benzos, and my consumption of alcohol is low , I will continue with what I am doing. But I sure am glad to know about this possible benzo addiction, and glad to know from a thread I started at Benzobudies, that most people DO NOT get addicted, according to the administrator, who despite not being a doctor, has much personal experience with all this, and experience reading about thousands of other's people's experiences.

Fiinally,regarding your worries about tests in your last post, if I remember correctly, when you wish to start on the TRT treatment, they test your ears to find out how much sound you can tolerate, and use that as a baseline. So they start with real low sounds and work their way up. When you get to the level of feeling slightly uncomfortable with a certain sound level, they stop.This is the baseline of your particular situation. This will not hurt your ears You will no longer be subjected to other louder sounds.They will then formulate a treatment to fit your particular case.

Yeah, now that I am thinking about it, a woman wrote about her marvellous recovery from acute h using TRT in a book called "Tortured by Sound". Can't remember her name.

Marco

 

Marc,
Not downplaying alcoholism because clearly that's not easy and is torturous to many a soul. But benzos are WAY worse than alcohol as far as addictive, what they do to your nervous system, etc. They impact your nervous system from head to toe and quitting benzos is WAY worse than almost any drug on the planet.....because there is nothing that can help you get off of them - no medication that they can give you, etc. I have never had an addictive temperament but I can definitely empathize with drug addicts, alcoholics and certainly the poor saps (like me) who have become accidentally dependent/tolerant to medication as prescribed. If I was not fortunate enough to have a family who loves me, and a home, I don't know what I would do. Even then, as I have specified, this is absolute hell and torture to the 10X degree. Hyperacusis and tinnitus alone are horrendous conditions, as you are aware.

Again, intermittent use generally is fine. But I doubt anyone at Benzobuddies would encourage you to take them on a day to day basis, or even a few times a week. We are all different and you seemingly are one of the fortunate ones, on the opposite end of the spectrum from me, who does not seem to have any trouble building a tolerance or coming off......at least for now. There is a phenomenon known as "kindling" that is real. I have been on them before and come off but my daily use was limited to a few months.....no troubles. After that, I was an intermittent user for years. Still no problem. This time, not so lucky and again, part of it is because I unfortunately listened to my doctor who told me to hold this lower, insufficient dose after tapering from a higher daily dose that I was on. Once you taper, continue to taper as tolerance withdrawal is real......then don't take the med for some time again, if ever.

Thank you for your encouragement.

 

Hi Benzomom:

I think you read what I told you about BenzoBuddies wrong. The people at BenzoBuddies did NOT encourage to continue taking this clonazepam. The admin merely stated that most people have no trouble. But the admin and a few others, and you, did warn me that nothing has happenned to me...yet. Maybe nothing will ever happen. I take that into consideration.

You mean this possible benzo withdrawal is worse than heroin withdrawal or extreme alcohol withdrawal with the DT's and hallucinations?

I did not quite understand to what you attribute your new reaction to these benzos.You write: "This time, not so lucky and again, part of it is because I unfortunately listened to my doctor who told me to hold this lower, insufficient dose after tapering from a higher daily dose that I was on." I have no idea what you are talking about. Can you rephrase it or explain more clearly?

Next question: before this very unfortunate incident with you going into withdrawal and getting hyperacusis, in all those years you were taking your benzos, did you ever try to cope naturally with your anxiety and or depression? If so, how? How do you think you will you in the future if you get over this hyperacusis hell?

Finally, it is nice to know you have a home and family for support. I have no family, no friends, and no real home, just moving alone from place to place, at the age of 64. And moderately depressed which makes everything much harder to do, like finding a home in a quiet neighborhood. Thank "God" at least my ears are relatively OK.

Take care. Marco

 

Marc, I was not on benzos regularly for years. I was on them 1-3 months at a higher dose, then tapered down to nothing with no problem. Then I was taking about 1X per week for years in between those few instances. Then I found myself taking 2X per week (for a few months) and that's when I also noticed more anxiety and depression - whether it had anything to do with this, I do not know. I was dealing with chronic pain issues, trying different antidepressants so my doctor had me taking "daily" just 1X per day at 1-2 mg (up and down in dose) for about 6-8 months. Then I started tapering off as the depression/anxiety wasn't getting better and I knew it also had something to do with Klonopin. This was a year ago. Then I encountered a bunch of GI issues - gastritis, esophagitis, etc. In January of this year (4 months after tapering about 2 mg), I halted my taper at .5 mg and held there while trying to figure out the GI issues, getting the esophagitis healed, my throat was a mess, etc. Then all the sudden in April, when I came off of a PPI, I started getting all these weird symptoms, noise intolerance being one of them. I was previously able to go to the bowling alley, etc, with no problems. I assumed it was coming off the PPI. But then the symptoms just started piling up, and we finally realized that I was thrown into "acute" tolerance withdrawal by holding my Klonopin dose so long at .5 mg (when I had been on 1-2 mg for several months and tapered down). So then it took like another 6-8 weeks to quit my job, figure out how to taper (I tried Valium 1X and it was horrible). So then I started re-tapering this last .5 mg at the beginning of July and clearly, things especially with the ears, have just gotten worse.

So yes, many people do not have problems coming off their benzos. I had previously with no issues. I had some problems during my taper earlier, which I did not realize were actually due to tolerance (like extreme coldness, extreme dry mouth/throat/esophagus, etc) until reading more about it.

I understand why at age 64, you would want to keep doing what you are doing. I hope I have shed some light on this for you, maybe sparing you from the intense pain and agony that I'm enduring, that my family is enduring. I'm a Christian, however, so I'm just praying and hoping that through my suffering and my family's, God will make good of it - that I will become a better human, mother, wife - my family will be stronger. That I will heal (they say that we will and do for the most part) and that life will be better than it ever had been before. I've been through major severe depression and have had anxiety for many years, my whole life. I've been a melancholic. But this is nothing like I ever could have imagined. All nerves on fire, hypersensitive, "raw". All emotions strong.

I will end this conversation for now, I guess. I hope you find peace and some happiness.

 

No, I did not. In fact, It was only having my a slight noise on occasion, not daily maybe not even weekly but I just thought it should be checked out by an ENT. Boy was that a mistake!!! I suppose my ears at the time of the test were in a vulnerable state and all the testing moved me over the top.

 

Hi JudyM,

What kind of test did they do? Was it a standard hearing test? Or something more? The acoustic reflex test and loudness tolerance test sound terrifying, but a standard hearing test shouldn't be damaging... in theory. Thanks for that and good lunch at Johns Hopkins, they have a great reputation.

 

yes, it was a standard hearing test (took like 10 min at best) which included a tympanogram....that's it! I don't get it either but it is true, so I will be very reluctant to have any further testing done, even at Hopkins. Thxs for the good wishes.

 

OK, BenzoMom, good luck to you. Thanks for being the one who let me know more clearly about the dangers of benzos.

Marco

 

Hi JudyM,

Search tympanograms here and ask the doctor at Hopkins if they can be dangerous. The tympanogram may be the culprit. Hoping your ears settle down over the next few months, make sure to eat well and have lots of ginger, garlic, and other anti inflammatory foods. Fingers crossed.

 

@BenzoMom
Hi, BenzoMom,
Just read your thread and just wanted to know how you're doing. I hope things are improving for you.

Mystery Reader

 

Hi there. Struggling and suffering immensely......BUT, I have switched one of my clonazepam doses 2.5 days ago for diazepam and the hyperacusis has settled. I am having other severe symptoms, BUT, it became clear to me several days ago that my hyperacusis was worse because of interdose withdrawal from the clonazepam. I was finding a pattern between doses. It also improved a hair as I slowed down my taper rate. I will possibly be talking to my doctor about crossing over to Valium for the remainder of my taper.....either that, or trying a different form of clonazepam that may not process through my system so quickly. Valium is causing me other severe issues, such as severe muscle pain and some acid reflux feelings. I am down to a little less than .375 mg of clonazepam now, which equates to about 7 mg of Valium. So still many months ahead of tapering and then healing time.

 

If you have to taper, do it as slowly as possible.

 

Oh, I'm going plenty slow but I'm suffering pretty severely so I'm not going to drag it out for years like that. I'm going at 10% per month and had to slow it to 9% per month. If things improve with a crossover to Valium, I may take it slower, we will see. When you are in hell, the only way out is through it. I'm not starting from a great place here because of severe tolerance.

 

Hi @BenzoMom -- I continue to watch your progress, and am rooting for you all the way. Regarding your above comment; I thought I'd go ahead and post what feels like a bit of humor regarding the hell that is benzo withdrawal. I hope it doesn't fall flat; but I think you might get a bit of a "kick" out of it... -- All the Best! -- @Star64

 

I like the Lane. I'm Catholic and we believe in purgatory. I am likely serving my purgatory time right now. It's so intense and horrendous.

 

Hi Benzomom: Sorry to hear you are still sufferring. Ear wise I am doing pretty good, and I just moved out of an apartment I was sharing with a psycho. Immensely relieved!! All of you with stable and healthy friends and families, count your blessings! Because I ain't got any support...

Marco

 

Yes it is like being in Hell, that is exactly how Stevie Nicks from Fleetwood Mac described her withdrawal, and I doubt anybody who has ever been through it, would disagree...

 

I had to abort a benzo withdrawal due to the insane rebound insomnia. I’m trying again now slowly again. I wish I listened to my ENT when I first got tinnitus he told me there’s no treatment for tinnitus leave it alone and try to ignore it it’s not severe. Now it is.

 

I feel your pain, but hindsight as they say is a beautiful thing. I used to beat myself up about taking a benzo which ended up causing me so many more issues than I ever thought possible, including way worse tinnitus. Now I just concentrate on trying to move forward and dealing with the horrid withdrawals. Hopefully you will benefit from a slow taper. Do not beat yourself up over taking the benzo, it is a waste of energy, instead try meditation to help you relax and hopefully this may even help with your Insomnia. Meditation has helped me deal with many symptoms and so has acupuncture during my taper. Hope everything goes well for you during this taper