Need to taper Rivotril

[[fa...]]

Hello !

First of all, sorry for my English, I'm french ! I hope my message will be understandable for all of us.

My name is Thomas, I'm 36 and I have hyperacusis and tinnitus since 2007, and it's very complicated since 3 years. My hyperacusis and tinnitus are the result of many sounds trauma and a very bad sound therapy.

In novembre 2022, I was in a very bad mood : my tinnitus was very reactive and I couldn't deal with a lot of "normal" sounds like voices, normal conversations, the noise of the ventilation at my workplace ...

I took Lexomil, 1,5 mg, maybe 5 times in 1 month, 1/4 of the  ... it helped me a little to sleep.

In march 2023, I started to take Rivotril. In France, we have to see a neurologist to have Rivotril, but my doctor gave me an ordonnance and I got it without the neurologist's advice.

I started to take 3 "shots" (0,3 mg). My hyperacusis and tinnitus was better after the "shot". But, one day later, hyperacusis and tinnitus were back.

I took 0,3 or 0,4 mg, 2 days a week. It was like, 0,4 or 0,3 mg on monday, 0.3 or 0,2 mg on thuesday, sometimes 0,2 or 0,1 mg on wednesday ... and nothing until the next week.
And my "shots" wasn't not "regular on the time". Sometimes, I stopped Rivotril for 1 or 2 weeks. Sometimes, I just took 0,5 mg in a day, and nothing for the rest of the week. Sometimes, I took 0,5 mg on monday, 0,4 mg on thuesday and nothing until the next week. Sometimes just 0,5 mg on monday and nothing until the next week.

It's not easy to describe the "frequency" of the shots, but it was not every days in the week.

I took all of my shots in the evening.

The first "bad" experience I had with the rivotril was in the first weeks, at work. I took Rivotril 2 days and 1 days ago, I had a phone conversation and my tinnitus became very bad. I was not good in my body, I took 0,3 mg of Rivotril and I was better 20/30 minutes after. This experience afraids me, but I thought that I'll do it good.

I saw a neurologist and he told me that I can continue like that.

So I tried to do it good, I wrote on a calendar every shot.

Since one or 2 months, my hyperacusis and tinnitus are very bad ... and my "shots" are more "regular in the time" ... it's like 0,4 mg or 0,5 mg 2 or 3 days in the week ... but almost every week. And I feel like the effects of the Rivotril are not good as it was in the beginning ...
Since 2 week, I have the sensation that I "need" Rivotril. My tinnitus are bad, and I'm like "if I'm listening to me, I would take 0,4 or 0,5 mg of rivotril. But my last shot was 2 days ago, so let's wait 2 or 3 days for the next shot".
I took a shot last thursday evening, 0,3 mg, I was better the friday. I took a shot the friday evening, 0,2 mg, it did me nothing.

Since sunday, my hyperacusis and tinnitus are bad. I took 0,2 mg yesterday, it did me nothing.

I called a doctor today, a doctor that I don't know.
He told me that I have to stop Rivotril.
Here are his instructions : 
- ALPRAZOLAM 0,25 mg / cp (XANAX)
- take 0,25 mg in the evening during 5 days
- then take 0.125 mg in the evering during 5 days
- then take 0.125 mg, alternate evenings during 10 days (I don't know how to say this in english, but it means "0,125 mg on monday evening, nothing on thuesday evening, 0,125 mg on wednesday evening, nothing on thursday evening ..., during 10 days)
- then he told that I could take Xanax if my hyperacusis and tinnitus was bad

How do you thing about that ?

[[Br...]]

Hello faity and welcome to BenzoBuddies!

I'm so sorry you've been going through such a difficult time with hyperacusis and tinnitus, and now problems with Rivotril (clonazepam) losing effectiveness.   It iUnfortunately it's not unusual to build up tolerance quickly and for benzos to lose their effectiveness.  

I'm also very sorry the doctor you spoke with today gave the advice he did.  In our view the plan he suggested is not a good plan.  Is there any way you can talk to a doctor who will be more sympathetic?  The plan the doctor advised would very likely cause you to have a more difficult time with withdrawal than is necessary.

First of all, in general it is better to taper off a long acting benzo like Rivotril, than a short acting benzo like Xanax. Did the doctor explain why he thought this was a good idea? Does he think Xanax is more effective for hyperacusis and tinnitus?  We generally find that switching from one benzo to another can be very hard and should be done gradually. Another problem I see is that the taper he suggested is very fast.  In addition he suggested skipping days - this can be very hard on your central nervous system.  Our system craves consistency and changes need to be made gradually.

I am not an expert on tapering - I hope someone else chimes in here.  But I think your best approach may be to taper very gradually from Rivotril to help you minimize withdrawals symptoms as much a possible.  We generally suggest making cuts of 5-10% of your most recent dose every two weeks or so if your symptoms allow.  Again, do you think you can work with a doctor who will support a cautious, sensible taper?

Your English is fine and you've explained your situation very clearly, so no worries.

[[fa...]]

 

Hello Brighterday, thanks a lot for your answer.

I saw this doctor yesterday for the first time. He told me that Rivotril is the most dangerous Benzo, and very addictive. For him, Xanax is less addictive than Rivotril, and it could help me if I take it only when I'm bad. The problem is : I'm bad very often.

This doctor told be something wrong in my opinion. He advises me to try TRT (Tinnitus Retraining Therapy). To resume, if I do TRT, I'll have "headphones" in my ears with white noise in it. But there are a lot of bad experiences with TRT. There are good experiences too, but in my case, my feeling is that putting white noise in my ear will be terrible ... My ears are too tired ... 
I told my feeling about TRT to this doctor, and he told be : TRT is less dangerous than Rivotril. And I'm not really sure about that. 
I'm not really in trust with this doctor. But I don't find a "good" doctor.

Yersterday, I took 0,2 mg of Rivotril. 
I have the feeling that this situation is "dangerous". I have the feeling that I want to stop Rivotril, so I try to take less Rivotril than before, but the effects are poor so I took Rivotril "more often".

To illustrate, I did a calendar with all my shots since april (there was shots before april but not a lot ... I started to write my shots on a calendar maybe in the middle of april). Maybe I forgot shots, but I don't think ... 

 

I'm a little afraid aboutt the last 3 weeks ...

- july 14 (friday) : 0.5 mg
- july 15 (saturday) : 0.4 mg
- july 16 (sunday) : 0.3 mg
- then I took nothing until -->
- july 20 (thursday) : 0.5 mg
- july 21 (friday) : 0.4 mg
- july 22 (saturday) : 0.3 mg
- then I took nothing until -->
- july 27 (thursday) : 0.3 mg
- july 28 (friday) : 0.2 mg
- then I took nothing until -->
- july 31 (monday) : 0.2 mg
- august 01 (tuesday) : 0.2 mg

And ... with all that "shots" ... I'm not really good. It helped me to be a little better ... but I can't live, can't see my friends and having normal conversations without having ears problems after (reactive tinnitus, hyperacusis symptoms ...).

Brighterday : you told "We generally suggest making cuts of 5-10% of your most recent dose every two weeks or so if your symptoms allow". But, I'm lost because my shot are not "big".
Maybe I could take :
- 0,4 mg on thursday / 0,3 on friday / 0,2 on saturday for this week and the next week
- then take 0,3 mg on thursday / 0,2 on friday / 0,1 on saturday for 2 weeks
- then take 0,2 mg on thursday / 0,1 on friday for 2 weeks
- then, nothing
?

I'm a little afraid because my tinnitus are very reactive. 
I'm totaly lost. I don't know if the fact that I try to reduce rivotril had effects on the level and the reactivity of my tinnitus.
My lost and my fears have bad effects on me : I'm obsessed, very very focus on my symptoms and I don't know if the Rivotril is good, not good, if he has bad effects, if my symptoms are more difficults than before I started rivotril ...

Thanks a lot for your help !

 

 

 

[[fa...]]

In addition : it's very complicated for me because I started Rivotril to help me to fight my hyperacusis and tinnitus ... now I try to stop Rivotril ... but I don't have other plan to fight my hyperacusis and tinnitus ..

[[Pa...]]

Unfortunately, benzodiazepines can make hyperacusis worse, when we take it and when we taper from it.  I know its a terrible solution but tapering off the drug won't help your original condition but it may keep it from getting worse once you're off and recovered from your use.

I agree with Brighterday that tapering slowly off the Rivortril is your best option, Xanax is too short acting.  We don't advise skipping days, its best to keep your blood serum levels at a constant to prevent a whiplash of symptoms.  A slow steady decline is best.

I'm not familiar with the treatment your doctor is proposing, you might want to start a thread in our Health Matters - BenzoBuddies Community Forum to ask what other members think, we have many who suffer with this.

[[fa...]]

Hello @[Pa...] , thanks for you answer.

I want to start a thread in https://benzobuddies.org/forum/19-health-matters/ but I have this : "We could not locate the item you are trying to view."

Could you tell me where is this section please ?

 

 

 

[[fa...]]

@[Pa...] it seems like I don't have access to https://benzobuddies.org/forum/19-health-matters/

When I'm connected, I have : "We could not locate the item you are trying to view."

When I'm not connected, I can access to the page

[[Pa...]]

53 minutes ago, [[f...] said:

@[Pa...] it seems like I don't have access to https://benzobuddies.org/forum/19-health-matters/

When I'm connected, I have : "We could not locate the item you are trying to view."

When I'm not connected, I can access to the page

Hi faity, we've recently migrated to new software and we're still working out the bugs.  I'll elevate your issue and get back to you.  Thanks for your patience. 

[[Co...]]

@[fa...] Can you still not use that link? If it is still a problem, please post again with an indication of how long has elapsed since you receive the new error.

Thanks.

[[fa...]]

3 minutes ago, [[C...] said:

@[fa...] Can you still not use that link? If it is still a problem, please post again with an indication of how long has elapsed since you receive the new error.

Thanks.

Hello. I just tried, it's still a problem. When I click on the link, I have a one second loading and the page with the message : "We could not locate the item you are trying to view."

 

[[Co...]]

It would be helpful if you could stick around for a while. I hope to make some changes in the next 30-60 minutes to resolve this. And if you could try the link again then, that would be helpful.

[[Co...]]

Any joy, faity? Please send me a PM a copy of the link from the email, with an indication of how long ago you received the email. Ideally, one from the past hour, and one from earlier today (or before today).

[[Br...]]

On 02/08/2023 at 13:06, [[f...] said:

Brighterday : you told "We generally suggest making cuts of 5-10% of your most recent dose every two weeks or so if your symptoms allow". But, I'm lost because my shot are not "big".
Maybe I could take :
- 0,4 mg on thursday / 0,3 on friday / 0,2 on saturday for this week and the next week
- then take 0,3 mg on thursday / 0,2 on friday / 0,1 on saturday for 2 weeks
- then take 0,2 mg on thursday / 0,1 on friday for 2 weeks
- then, nothing
?

This plan may work but I think it would be better to go more slowly.  I'm concerned that even though you've been taking small doses of Rivotril (also known as clonazepam or Klonopin) inconsistently you have been taking it for more than 4 months and your system may have become dependent on it.  If you are dependent on it it is important that you taper very slowly and carefully to keep your withdrawal symptoms to a minimum.  

Here's one way you could approach your taper,  using dry cuts and a jeweler's scale like this one: https://www.amazon.com/gp/product/B0012TDNAM/ref=ppx_yo_dt_b_asin_title_o00_s01?ie=UTF8&psc=1 You would start by taking a consistent daily dose for a couple of weeks to help stabilize your nervous system.and then starting to taper. If your tinnitus and hyperacusis are highly reactive you may want to start with a smaller percentage reduction. It will take longer to taper than a 10% rate but it's more cautious.  So let's say you started with .4 mg for a couple of weeks and let's say you choose to taper at a rate of 5%. You would multiply .4mg by 95% (.95) which equals: .38mg.  You would hold at the daily dose of .38mg for a 10-14 days before making the next cut.  If you have symptoms that are difficult to manage you would hold longer and maybe reduce your tapering rate.  Your next dose would be .36mg. And so on.

Of course this is complicated because you have pre-existing  hyperacusis and tinnitus and they are both common benzo withdrawal symptoms. This may make it hard to tell whether you're experiencing your baseline or withdrawal symptoms.  

What do you think?

[[fa...]]

 

Hey,

Thanks for your answer

I didn't take Rivotril since monday and I tried to stay in a calm environement as soon as possible. But I'm afraid about the risk to have withdrawal symptoms. I have reactive tinnitus but, as I said, I can't tell if it's reactive because of the Rivotril or because of my "initial condition".

Is there a risk to me "more addict" with the plan you describe ?
I'm just a little afraid about starting to take Rivotril everyday with 0.4 mg for 2 weeks. Then, if I taper 5%, I'll take 0.38 for 10 days / 2 weeks. Then 0,36 for 10 days / 2 weeks ...
So I'll take Rivotril everyday for 6 months. It's not too long ?

The withdrawal symptoms are "permanents" ? Or it's just temporary ?

 

 

[[fa...]]

 

Hello. First of all, sorry for my English, I'm french ! I hope my message will be understandable for all of us.

My name is Thomas, I'm 36 and I have hyperacusis and tinnitus since 2007. Since one year, it's very complicated. My tinnitus are very reactive and the normal sounds are complicated for me. My life is sad, I can't see my friends, travel, go to the restaurants ...

In september 2002, I was in a very bad condition, with reactives tinnitus ... so I started to try benzos. I started with Laroxyl but I stopped after 2 days. I took Lexomil (1,5 mg) maybe 5 times (differents days), it helped me to sleep.

I begun Rivotril in november, but not a lot.  I think I took maybe 0,2 mg in november.  In december, maybe I took Rivotril few times, but not often. Maybe 3 times ... I don't really remember, I was afraid about this product.

I started to take beetween 0,2 and 0,4 mg (maybe sometimes 0,5, I don't remember) from time to time in january or february.

Since march, it was more regular. It was like 0,3 or 0,4 mg, 2 or 3 days a week. It was like, 0,4 or 0,3 mg on monday, 0.3 or 0,2 mg on thuesday, sometimes 0,2 or 0,1 mg on wednesday ... and nothing until the next week. And my "shots" wasn't not "regular on the time". Sometimes, I stopped Rivotril for 1 or 2 weeks. Sometimes, I just took 0,5 mg in a day, and nothing for the rest of the week. Sometimes, I took 0,5 mg on monday, 0,4 mg on thuesday and nothing until the next week. Sometimes just 0,5 mg on monday and nothing until the next week. My hyperacusis and tinnitus was better after the "shot". But, one day later, hyperacusis and tinnitus were back.

It's not easy to describe the "frequency" of the shots, but it was not every days in the week. I took all of my shots in the evening. 

The first "bad" experience I had with the rivotril was on march 09 2023, at work. I took Rivotril 2 days and 1 days ago, I had a phone conversation and my tinnitus became very bad. I was not good in my body, I took 0,3 mg of Rivotril and I was better 20/30 minutes after. This experience afraids me, but I thought that I'll do it good.

I saw a neurologist on april 18 and he told me that I can continue like that. So, since this date, I tried to do it good, I wrote on a calendar every shot.

Maybe I started to have bad habits : when I saw friends, I took shot after see that friends, to anticipate the reactive tinnitus and the pain.

Since one or 2 months, my hyperacusis and tinnitus are very bad ... and my "shots" are more "regular in the time". To illustrate, I did a calendar with all my shots since april (there was shots before april but not a lot ... I started to write my shots on a calendar maybe in the middle of april). Maybe I forgot shots, but I don't think ...

 

I want to stop Rivotril because I have the feeling that this situation is "dangerous". I feel like the effects of the Rivotril are not good as it was in the beginning. And sometimes I have the sensation that I "need" Rivotril, my tinnitus are bad and I'm like "if I'm listening to me, I would take 0,4 or 0,5 mg of rivotril. But my last shot was 2 days ago, so let's wait 2 or 3 days for the next shot".

Do you have a plan to stop Rivotril ?

I'm afraid about stoping the Rivotril and having more tinnitus and hyperacusis symptoms in result.

For information : I could stop working for one month if it could help to be in a better condition to taper ...

Thanks for you help.

 

[[Br...]]

You could start with 10% cuts.  We encourage you to let your taper be guided by symptoms.  If you find your withdrawal symptoms are too intense with 10% cut your taper rate and/or hold at a dose for longer than 2 weeks.  Withdrawal symptoms are temporary, not permanent.  They will resolve but it takes time.

It is your decision whether to do a faster taper or a more cautious one. You know yourself best.  We will support you no matter which approach you choose.

[[Pa...]]

Hi faity, I've merged your taper threads together, its best to keep all of the information you've shared as well as received in one place so others can learn and you can see what has been suggested.  

[[fa...]]

 

Hello,

I stopped taking Rivotril abruptly. My last dose was on August 8th.

Just to remind you, here are the doses I took from April 2023 to August 2023 (I took Rivotril since February 2023, but I didn't note the doses... but it was a maximum of 0.4 mg and less frequently than the doses on the calendar below).

On September 5th, after a work meeting where there was ventilation 5 meters away from me on the top right.

After this meeting, I had a "breathing noise" in my ear, independent of my own breathing. I still have this noise today. It's like my brain is "chocked" by this ventilation sound and play it again and again.

Well... it's important to know that last year, even without Rivotril, I already had a very hard time tolerating external noises, it was very complicated... but now, the crisis I'm going through is much worse!

My ears are also completely tired. I hear EVERY sound in my home, like the noise of phone chargers, the sound of a slightly opened carbonated water bottle two meters away from me, or the sound of the wind outside even with my hearing protection and closed windows. It's incredible. I also perceive sounds in a distorted manner. Yesterday, there was a sound that attacked my ears. I searched for a minute... it was the sound of a toilet flush that had been pulled one minute earlier. I can hear the sound of a church located 2 kilometers from my home, but it sounds completely distorted compared to how I usually perceive it.

I feel like I'm having auditory hallucinations. I hear road noises at night, I heard a scream once.

My girlfriend left me a week ago, which doesn't help.

So, I started taking Rivotril again on September 5th and September 12th, 0.4 mg each time, but I don't think it had any effect.

The only thing that allowed me to have a decent night's sleep was taking 1/4 of Lexomil on September 15th.

At first, I thought all of this was just because of my hyperacusis problem. But now, it's becoming so hard that I'm questioning the potential impact of Rivotril.
Last night, I felt like I was going crazy. I was sweating, hearing sound that not exist ... I'm even afraid that people won't believe me, that they'll think I'm hallucinating, that they'll lock me up in a psychiatric hospital.

Do you think that stopping Rivotril could have an impact on this?

 

 

[[Pa...]]

I can feel your misery and fear @[fa...], this is scary stuff.  I know members have talked about the acute phase after quitting benzodiazepines, it seems like it lasts about 2 weeks, then it seems to settle into fairly predictable patterns, much like the taper. 

I don’t know about your situation, your troubles didn’t start until a month later.  Nothing surprises me anymore about this process but I can’t say for sure what is causing your distress.

I will say that when I quit Klonopin (Rivotril), my hearing became bionic, I heard things in my house I’d never heard before.  My senses were heightened to the extreme and it was uncomfortable. I also smelled things, some that I don’t think were real, so I may have suffered olfactory hallucinations.  

I’m hopeful this will pass for you, does distraction help at all?

[[fa...]]

Hello @[Pa...] , thanks for your answer !

 

It's also possible that all of this is just a big setback of my hyperacusis... and Rivotril has no impact.

I don't have any distractions; my hyperacusis prevents me from seeing my friends or going out. I can't listen to music. I'm extremely afraid for the future.

hat surprises me is that taking Rivotril on September 5th and September 12th (4 drops) didn't help me.

The 1/4 of Lexomil on September 15th helped me sleep a little better and feel better for a few hours.

I hope it will be better soon ..

 

[[fa...]]

 

@[Pa...] I wonder if, during these few months of taking Rivotril, my brain hasn't become accustomed to functioning with it. In other words, my brain got used to receiving a few drops of Rivotril when my ears were really not doing well. And maybe now, by stopping it, my brain has no Rivotril, so it doesn't know how to handle it anymore. So my ears are more sensitive. So, during that work meeting, the noise from the ventilation system caused more damage than if I had never taken Rivotril.

What scares me now is not being able to go back.

 

 

 

[[Pa...]]

I don’t know very much about hyperacusis other than benzodiazepines are sometimes prescribed to treat it but it can also make it worse.  I would say its possible what you’re dealing with could be the result of your discontinuation which givesme hope that you’ll get back to your baseline as you recover.