Updosing during taper / tinnitus

[[Mi...]]

Dear all,

I am looking for some advice on trying to rescue a taper.

In brief, I have made a whole ton of mistakes with my meds, thanks largely to some terrible medical advice. In autumn 2022 I had a nasty myoclonus in my ear caused by a damaged blood vessel in the brain (due to chronic stress). I actually managed to stop this within a few weeks using carbamepazine but the doctor treating me had also put me on 0.5 mg clonazepam and deanxit.

I came off the deanxit in February 2022 and then came off the clonazepam. Here – following the doctor’s advice, I cut from 0.5mg to 0.25mg in one go. Then, a month later, I tapered off using alternate dosing (which I now know was a terrible idea).

Within a couple of weeks I developed appalling tinnitus. After a period of dealing with this, in discussion with my own family doctor I reinstated the 0.5mg clonazepam and the deanxit. This really reduced my tinnitus over the course of about four weeks. A few weeks later I started tapering off the clonazepam using the Ashton method, went from 0.5mg to 0.3mg in six weeks or so. The tinnitus came back (though nowhere near as badly as before) so I paused for a month (during which time I also came off the deanxit).

Then I cut from 0.3mg to 0.25 mg. At this point my tinnitus changed completely – it went from a constant tone in my right ear to a sort of distorted crackling, and I developed a tone in my left ear. This was difficult to deal with at first but I got on top of it in the end (and, oddly enough, though it was harder to sleep with at nights, it was actually easier to manage during the day, I needed less sound masking. The tinnitus in my left ear went right down as well).

I then resumed my taper, and went from 0.25mg to 0.18 in about six weeks. At this point I crashed badly – my tinnitus went through the roof for a couple of weeks, terrible anxiety, intrusive thoughts, palpitations and so on.

At that point I stopped tapering and gave up alcohol (I’d been drinking all the time I was on benzos because I didn’t know any better – even the first doctor said it wasn’t that big a deal to drink). That was two months ago.

After two or three weeks, the worst of the withdrawal symptoms was over, and the tinnitus was back to only being bothersome a couple of days a week. I felt pretty good in the first week or two of December. However, since mid-December the tinnitus has continued to get worse. I am having some good days where it is low but it’s more or less one good day for every three or four bad days now. And the bad days are getting worse. The tinnitus in my left ear is now much louder, and the tinnitus in my right ear seems to be changing a lot and is horrible – it’s like a crackling distorted sound inside my skull. It’s much harder to mask the right ear tinnitus with sounds now. That said, I am able to sleep at nights as I’ve found a white noise frequency that will do the trick if I play it through headphones.

I’m at a bit of a loss what to do now. Clearly I can’t carry on my taper at present with this symptom being so unstable, so the baseline scenario is to hold for quite a while longer and see if it improves. However, given how unpleasant it is and how it seems to be getting worse, I am wondering if I should updose slightly at this point (say, from 0.18mg to 0.2mg) and hold there for a while to try to stabilise. I understand from what I've read here that there's no guarantee that this would work and, in any case, at 2 months since my last cut it may be too late).

Any advice gratefully received!

 

[[Co...]]

Hello @[Mi...]. Welcome to BenzoBuddies. I am sorry to hear about your problems with tinnitus.

I do not have time to reply properly now, but I wished to approve your account before I log off. I expect others will be along to reply to you soon enough.

[[Br...]]

Hello @[Mi...] Welcome to Benzo Buddies!

Tinnitus is a miserable symptom.  I had it during withdrawal and eventually it faded away. I noticed it was worse when I was fatigued and as with all of my withdrawal symptoms, it was worse when I was experiencing increased stress.  It's easier said than done sometimes but I think it's worth trying to get as much rest as possible and to avoid stress as much as you reasonably can. 

I'm sorry I don't have a good answer to your question of whether it would help you to updose given that your last cut was two months ago.    Hopefully someone with more knowledge about updosing will give you input.

Here is a link to some ideas for coping with tinnitus.  https://withdrawal.theinnercompass.org/coping/withdrawal-induced-tinnitus-quick-tips

[[Mi...]]

Dear buddies,

Coming back to this thread as am looking for yet more advice. The gory details of my story with clonazepam is above. In short, I crashed on my taper in November 2023 at 0.18, held for a couple of months and then resumed my taper in late January. I am micro-tapering - cuts of 0.001mg a time every few days, pausing for a while if symptoms ramp up. That's been working pretty well - although my tinnitus (my main symptom) remained unpleasant I was able to mask it with white noise played through bone conduction headphones during the day when necessary (which it often wasn't) and sleep pretty well without using any sound masking.

I'd gone from 0.18 to 0.154 in a couple of months and was doing OK. Then I went from 0.154 to 0.142 in the course of another six weeks - so pretty slowly - and suddenly everything has crashed again. Two weeks ago the hearing in my right ear suddenly deteriorated, so I could no longer use sound masking very easily since I can't hear the high frequencies any more. This was obviously very stressful as that was my main way of coping.

The tinnitus has changed a week ago and got much worse as well - it's almost not even a sound anymore, it's like physical pressure in my head. It's like my head is buzzing with a distorted hiss constantly, it's really unbearable and completely impossible to mask and I'm aware of it in almost all situations - I have to be somewhere really noisy before I am not aware of it anymore).

I can't believe that such a small amount of cuts has taken me from very functional and managing at 0.15 to falling apart at 0.142 a few weeks later, and I wonder whether this is tolerance withdrawal.

I've gone from managing my withdrawal symptoms pretty well and managing to function well with my kids, in my job etc. to being a complete mess of stress, depression and despair. I really don't know what to do now. I guess the standard advice would be to hold, go slow etc. but the speed I'm going it's going to take me another 18 months to get off 0.14mg clonazepam. That seems an appallingly long time before I can get off and get healing. The way I feel now I don't know if I can stand another 18 months of this.

I don't know whether it is better to hold and go slow and hope it gets better or to follow the advice of a taper coach who suggested making 0.001mg cuts every day for 140 days and then get healing. That would add up to much more than the 10% per month cuts which seems to be standard and seems really risky to me.

Any advice gratefully received, I'm at the end of my tether.

 

[[Le...]]

There are many things that make the T and stuff worse and you can try to get relief that way. dealing with the tension and posture issues that aggravate it. 

I had T similar to being at the speaker of the loudest concert I could imagine while someone boxed my ears occasionally. I suspect it is worse for people who have some hearing loss already. Yours wont be as bad or long lasting as mine since you are tapering  

I think a slow controlled taper with lots of time between changing doses is really your best bet. 

[[PE...]]

Hi

I'm 7 months out and still have tinnitus. Much lower but still present. 

We are many here with tinnitus to different degrees and I wouldn't updose because of it.

[[Mi...]]

Thanks Lee. Indeed, I am trying hard to manage the stress caused by it since I can tell it is aggravating it.

Thanks Peppe as well, and I'm glad your tinnitus is much lower. I didn't updose in the end (my first question was from January this year) but continued my taper. Problem is that my tinnitus has got much worse despite only tapering from 0.18mg k to 0.14mg over the last six months. Hard to go much slower, trying to figure out if I should try and go quicker.

[[Le...]]

its an odd trap where the tinnitus itself causes so much distress that continuing is hard and you never calm enough for the T to go away. take some time in the taper. try lots neck and shoulder and posture stretching. avoid caffeine and continue after. i assume your taper is fairly controlled as it is. 

[[Mi...]]

Cant really help you, but those last 0,20mg of K are the hardest. Its super sensitive.

From 2mg to 0,5 i never had an issue, under 0,5 i had my first wd symptoms,  but under 0,2 im having to take breaks every 2 months. 0,1mg every month. Im doing 0,001/day too.

When i feel my fightpower is totally gone , i quit for several months. 

Never updose. Not even from 0,18 to 0,20

Did it once, and regret it. The nervous system doesnt like change of direction at all.  

I also found tapering during spring and summer a bit easyer. The winter blues doesnt help at all. In summer you are much more inclined to go outside, see the sun, etc.

Been tapering for 3,5years, what was suposed to be a 1y taper. Anything under 2y is still a very nice result. 

 

[[Mi...]]

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

its an odd trap where the tinnitus itself causes so much distress that continuing is hard and you never calm enough for the T to go away. take some time in the taper. try lots neck and shoulder and posture stretching. avoid caffeine and continue after. i assume your taper is fairly controlled as it is. 

This is it, isn't it? The reductions are affecting my tinnitus and hearing, but the stress that causes (along with e.g. lack of sleep) compounds it all. I do quite a bit of stretching and exercise and so on but not so much neck and posture, any particular recommendations on e.g. Youtube?

Your tinnitus experience sounds absolutely horrendous, Lee, I'm glad you've recovered. 

[[Le...]]

look for my tinnitus relief thread. i only have time to check in here and there atm. in a poker tournament. 

[[Sw...]]

@[Mi...] your tinnitus sounds a lot like mine! It gets better. The crackling, high pitch, hiss, or soda bubble sound that can’t be masked and is perceivable everywhere…. Yeah that’s stressful. I think of it as my brain trying to heal. I’ve had mild tinnitus and now difficult tinnitus. I’m with you I get a few good days then bad days. 
 

keep tapering. Just keep moving forward. The only thing we can rely on is time. Try to remember that there is a world of possibilities where your tinnitus totally clears up and that you can’t hang your future or your happiness on the disappointment of today. This takes time.