How bad will it get before getting better? (if there's getting better).

Hello Everyone,

 

Like I mentioned in other posts, I'm in the process of cutting down Clonazepam. After less than 5 months taking a relatively small dosage of benzos (once a day), I suspect I developed tolerance and due to a chemical imbalance a terrible tinnitus kicked in gradually.

 

Yesterday for the first time I experienced what I would consider a level 10 of Tinnitus.

 

It was bad enough during the day, with an electric buzz piercing my skull. I imagined the night ahead would be ugly, but reality surpassed expectations...as usual.

 

It has been fluctuating in sound and volume for the last 2 months. The one I dread the most is the electric buzz, which is the one I get when things get worse.

 

Yesterday, I fell asleep out of exhaustion (I wasn't supposed to take the clonazepam, but I took just a 1/8 (0.0625 mg) to ease the bump.

 

Regardless, I woke up in the middle of the night and I noticed an extremely wicked loud tinnitus (like electric wires at a deafening volume), I felt nauseated, jumped out of bed, started sweating, and went to the bathroom to try to throw up.

 

I fell asleep again, woken up many times by the very high T.

 

Today it has been loud, between a loud hissing and electric sound.

 

I want to believe it is the result of weaning off benzos (even though I wasn't taking high doses, nor it was for such a long time).

 

My question is, how bad will it get before it gets better? (if it ever gets better).

 

Apparently, my tapering program (prescribed by a Dr) is not working.

 

I've seen several psychiatrists, and none of them have been able to help me. They either want to prescribe more medications, or are dismissal about my problem.

 

The Ashton Manual doesn't show my case (only with higher doses). I'm on 0.125 mg of clonazepam (4 times a week)...

 

Next week I'm supposed to completely stop and I'm not ready.

 

Any thoughts, ideas would be greatly appreciated. I'm really scared, terrified and overwhelmed. I cannot think straight with this loud noise in my head.

 

It is so loud, that white noises are not doing their job. Naturally, that is freaking me out like there's no tomorrow.

 

Hi Ben-

 

I imagine other members have said it already - but tinnitus is a very common withdrawal symptoms.  I'm sorry yours is so bad and you're suffering so much.  Unfortunately there's no way of predicting how long it will go on - it's different for everyone, one of the maddening things about benzo withdrawal. I had tinnitus too, not as bad as yours, but it went on for a couple of months and gradually faded away.  I know it can be one of the last symptoms to go away for many members.  It's probably not super comforting to hear that but it can help to know that healing is happening even when it doesn't feel like it.

 

I know others have expressed concern already but I am also concerned about your taper schedule.  I worry that it may be contributing to your symptoms.  There's a lot of thinking that as we taper our central nervous system needs consistent doses with very gradual reductions - otherwise it is too hard on the system and creates havoc as system tries to reach equilibrium.  Is it possible for you to do a taper more in line with what we generally suggest here on BB, that is, cuts of 5-10% every week or two?

 

One last thing -It’s helpful to create a signature so other members who want to reply to your posts can see where you are in the process. Here’s how to add your benzo info automatically to your posts: go to Profile, then Forum Profile, write your info (which benzo, dose, taper history) in the text box and save. Thanks! Let us know if you need help with this.

 

I hope your tinnitus eases up.  I know it's a nightmare right now but you will get through this.

 

Take care,

Brighterday

Hello Brighterday,

 

Thank you so much for your words. It's exactly what I need to hear at this moment (besides complete silence). I will get an appointment with another psychiatrist to restructure my taper schedule.

 

Let me check the signature part.

 

Once again, thank you.

Good job on the signature! 

 

 

Thank you Brighterday:)

If you can't find a Dr to work with let us know, perhaps we can help you design a taper which will work better for you.

Hello Pamster,

 

Thank you for offering me your help.

 

Yes, I'm having problems to find a Doctor who specializes in benzo withdrawal and my Tinnitus as a symptom is usually disregarded even though is well documented.

 

I'm in Madrid, Spain. People take the summer vacation very seriously. To add up, the pandemic situation is not helping to find the right professional. Most of the city is dead. Everyone went to the beach for vacation except my Tinnitus and me.

 

Today is August 10, the week I'm supposed to finish taking the medication.

 

Obviously I'm not ready. Yesterday I took 0.125 mg of Clonazepam. My Tinnitus is way better than yesterday (still very bothersome), but not maddening. It's a metallic hissing, as opposed to a loud electric buzz. I was able to sleep yesterday.

 

Today I'm not supposed to take the medication...so let's see how it goes.

 

I want to wean off benzos for good while minimizing my tinnitus. I am hopeful that once the taper is over, it will eventually subside. Feel free to suggest (I am really thankful for offering me your help).

 

I tried to attach a document showing you my current plan, but is not letting me. However, it's in my signature. Just in case, I'll also mention my previous situation.

 

"My previous situation:

Started taking Alprazolam at the beginning of March 2020

-0.25 mg for more than 3 weeks.

Continue taking them every other day until June 2020."

Forgot about taking benzos in June, 2020, a terrible tinnitus kicked in gradually. A Dr. Designed a plan which is not working (tinnitus gets too loud).

 

Please let me know if you can see everything or if you have any question. Once again, thank you for offering me your help. 

 

 

 

Tinnitus has been one of my difficult symptoms as well. The only difference is that I developed tinnitus about twenty five years ago. It wasn't as bad then and over the years it would get better or worse depending on my stress levels. I saw a couple of specialists and they said I had about a 20 percent hearing loss and that it would slowly get worse over time but they didn't have any cure for me.

 

I had learned to manage it pretty well and mostly tuned it out but when I started tapering Xanax, it got so much worse. For me, it seems to be worse when I do a cut of the drug and then calm down a little. It's still very loud but I can handle it better at certain times.

 

What really helps me is to go outside and let my brain kind of reset. It's not as loud when there are cars driving by, birds chirping, people mowing lawns. You get the idea. I find I can sort of forget about it and it gives me a little bit of respite.

 

I think the most important thing is to try not to get claustrophobic about it. It can feel so much worse when that happens. I have a Tinnitus radio station on pandora that I play inside and I also have an air purifier that makes a lot of background noise I can turn on when it's really bothering me. I do think yours will improve. Mine definitely gets better or worse depending on my stress levels. I hope you get some relief!

I'm really sorry about the tinnitus. Mine screeches so loudly at times but I'm used to it. An SSRI called sertraline gave me tinnitus way back in 2014. The only time I've had relief from it was briefly in 2016 from diazepam, before I gained a tolerance to it. I'm very much habituated to it by now. It takes on different pitches, tones, intensities but luckily not fluctuating. It's more that I'll wake up one day and that's how it is for most of the day. It's different every day. I'm incredibly grateful that it doesn't fluctuate up and down during the day. That would be a lot harder to deal with and I couldn't imagine being able to tune it out like now.

 

If it ever completely resolves itself, I will see it as a bonus. To be honest, I can't imagine life without it. It definitely went to a different level when I was going through the worst of it during my taper. Sleep is a HUGE factor and so is stress in determining how nasty my tinnitus is. I don't want to be negative but from my own experience and reading round, I think you're probably best off getting used to it for the short-medium term. When you start to recover and sleep comes back and you're no longer stressed by the smallest things, that's when you can be more hopeful of the tinnitus becoming a lot quieter or going away partially or even completely.

I just wanted to share this link with you. When my tinnitus is really bad I’ll crank this up and it calms my brain down and seems to soothe it a bit.

 

Hello Pamster,

 

Thank you for offering me your help.

 

Yes, I'm having problems to find a Doctor who specializes in benzo withdrawal and my Tinnitus as a symptom is usually disregarded even though is well documented.

 

I'm in Madrid, Spain. People take the summer vacation very seriously. To add up, the pandemic situation is not helping to find the right professional. Most of the city is dead. Everyone went to the beach for vacation except my Tinnitus and me.

 

Today is August 10, the week I'm supposed to finish taking the medication.

 

Obviously I'm not ready. Yesterday I took 0.125 mg of Clonazepam. My Tinnitus is way better than yesterday (still very bothersome), but not maddening. It's a metallic hissing, as opposed to a loud electric buzz. I was able to sleep yesterday.

 

Today I'm not supposed to take the medication...so let's see how it goes.

 

I want to wean off benzos for good while minimizing my tinnitus. I am hopeful that once the taper is over, it will eventually subside. Feel free to suggest (I am really thankful for offering me your help).

 

I tried to attach a document showing you my current plan, but is not letting me. However, it's in my signature. Just in case, I'll also mention my previous situation.

 

"My previous situation:

Started taking Alprazolam at the beginning of March 2020

-0.25 mg for more than 3 weeks.

Continue taking them every other day until June 2020."

Forgot about taking benzos in June, 2020, a terrible tinnitus kicked in gradually. A Dr. Designed a plan which is not working (tinnitus gets too loud).

 

Please let me know if you can see everything or if you have any question. Once again, thank you for offering me your help.

 

Hi Ben,

 

A few questions:

 

Is your weekly dose .375 at the moment? 

 

Are you cutting your pills and if so with what? 

 

Do your symptoms increase on the days you don't take the pills?

 

Are you experiencing interdose withdrawal during the day?

 

Do you have a good supply in case you need to slow down?

Thank you SSR,

 

Hope yours gets better too. Glad you're able to cope with it. I do use some apps for it: Atmosphere: Relaxing Sounds, and White Noise Lite. They are both compatible with Android and I-Phone, and completely free.

 

Those experiencing tinnitus from benzos, including yourself could benefit from it as some of the sounds are very relaxing.

 

Please keep me posted once you're completely off benzos to see if yours improves.

 

You're totally right, one of my main thoughts is will it get worst once I'm completely off the medication? When will I get better?

 

I'm constantly looking for reassurance and success stories, and of course, there's always the person who will speak bluntly and tell you that it might not get better at all (as you can imagine, in my state is devastating).

 

Like I mentioned before, all I'm looking for is a smooth taper, and be able to get completely off benzos. If my tinnitus starts becoming more manageable with time, then I'll know I have reasons to believe I will succeed.

 

For me tinnitus is not a dreadful thing by itself. It's a certain level of volume and a certain noise that shatters my life. When it gets ugly, it can become like an electric-metallic buzz, very loud and reactive to any sound.

 

My main goal is to reduce that type of tinnitus and get off benzos.

 

Once again, thanks for your input. Let's keep in touch.

 

Tinnitus has been one of my difficult symptoms as well. The only difference is that I developed tinnitus about twenty five years ago. It wasn't as bad then and over the years it would get better or worse depending on my stress levels. I saw a couple of specialists and they said I had about a 20 percent hearing loss and that it would slowly get worse over time but they didn't have any cure for me.

 

I had learned to manage it pretty well and mostly tuned it out but when I started tapering Xanax, it got so much worse. For me, it seems to be worse when I do a cut of the drug and then calm down a little. It's still very loud but I can handle it better at certain times.

 

What really helps me is to go outside and let my brain kind of reset. It's not as loud when there are cars driving by, birds chirping, people mowing lawns. You get the idea. I find I can sort of forget about it and it gives me a little bit of respite.

 

I think the most important thing is to try not to get claustrophobic about it. It can feel so much worse when that happens. I have a Tinnitus radio station on pandora that I play inside and I also have an air purifier that makes a lot of background noise I can turn on when it's really bothering me. I do think yours will improve. Mine definitely gets better or worse depending on my stress levels. I hope you get some relief!

Thanks for your input Diaz-e-BAM,

 

Yes, I do know I have to get somewhat used to it before expecting any improvement. Like I mentioned before all I want is a smooth taper that allows me to have a manageable tinnitus.

 

I did have tinnitus before due to fluoxetine (terrible spike similar to now that became a tolerable hissing after a few months), it went away eventually after many years. It would only return if I had lot of caffeine, stress, and lack of sleep.

 

Congratulations on stopping your benzo. Please keep me posted and let me know if your T gets better now that you're benzo free.

 

Best.

 

I'm really sorry about the tinnitus. Mine screeches so loudly at times but I'm used to it. An SSRI called sertraline gave me tinnitus way back in 2014. The only time I've had relief from it was briefly in 2016 from diazepam, before I gained a tolerance to it. I'm very much habituated to it by now. It takes on different pitches, tones, intensities but luckily not fluctuating. It's more that I'll wake up one day and that's how it is for most of the day. It's different every day. I'm incredibly grateful that it doesn't fluctuate up and down during the day. That would be a lot harder to deal with and I couldn't imagine being able to tune it out like now.

 

If it ever completely resolves itself, I will see it as a bonus. To be honest, I can't imagine life without it. It definitely went to a different level when I was going through the worst of it during my taper. Sleep is a HUGE factor and so is stress in determining how nasty my tinnitus is. I don't want to be negative but from my own experience and reading round, I think you're probably best off getting used to it for the short-medium term. When you start to recover and sleep comes back and you're no longer stressed by the smallest things, that's when you can be more hopeful of the tinnitus becoming a lot quieter or going away partially or even completely.

Thank you for sharing! I copied the link. 

My suggestion is to stop taking them...or I'd ask for the to lengthen my taper to make it more bearable. Something I also learned is you do not updose. Updosing is a mistake. Even if things are really bad updosing doesnt work immediately...it takes time to adjust again. You may suffer with the tinnitus but seriously it will be much much worse if you stay on longer. You are going to deal with tinnitus regardless. The longer you stay on the worse it will be for you...take my advice. I was on 1mg klonipin for 3 1/2 years...I wish I found out as quickly as you did how bad they were. Please don't stay on them. I am not minimizing your pain, but the longer you stay on the worse that tinnitus is going to get and you will not be able to live a normal life if you stay on them.. You can do it. You will survive. I promise because I know from experience. Just try to find a way to manage, and never take them again. Ultimately it is up to you what you do, as I am not a doctor but this is what ive learned through this experience.

Hello Pamster, 

 

I sent you a PM, please let me know if you want me to post the message publicly too.

 

Thank you again for your help:)

 

Hello Pamster,

 

Thank you for offering me your help.

 

Yes, I'm having problems to find a Doctor who specializes in benzo withdrawal and my Tinnitus as a symptom is usually disregarded even though is well documented.

 

I'm in Madrid, Spain. People take the summer vacation very seriously. To add up, the pandemic situation is not helping to find the right professional. Most of the city is dead. Everyone went to the beach for vacation except my Tinnitus and me.

 

Today is August 10, the week I'm supposed to finish taking the medication.

 

Obviously I'm not ready. Yesterday I took 0.125 mg of Clonazepam. My Tinnitus is way better than yesterday (still very bothersome), but not maddening. It's a metallic hissing, as opposed to a loud electric buzz. I was able to sleep yesterday.

 

Today I'm not supposed to take the medication...so let's see how it goes.

 

I want to wean off benzos for good while minimizing my tinnitus. I am hopeful that once the taper is over, it will eventually subside. Feel free to suggest (I am really thankful for offering me your help).

 

I tried to attach a document showing you my current plan, but is not letting me. However, it's in my signature. Just in case, I'll also mention my previous situation.

 

"My previous situation:

Started taking Alprazolam at the beginning of March 2020

-0.25 mg for more than 3 weeks.

Continue taking them every other day until June 2020."

Forgot about taking benzos in June, 2020, a terrible tinnitus kicked in gradually. A Dr. Designed a plan which is not working (tinnitus gets too loud).

 

Please let me know if you can see everything or if you have any question. Once again, thank you for offering me your help.

 

Hi Ben,

 

A few questions:

 

Is your weekly dose .375 at the moment? 

 

Are you cutting your pills and if so with what? 

 

Do your symptoms increase on the days you don't take the pills?

 

Are you experiencing interdose withdrawal during the day?

 

Do you have a good supply in case you need to slow down?

Thank you RileyJax, I really appreciate your advice.

 

I totally agree with you. I don't want to up dose. I would feel a thousand times better if I was already not taking the Clonazepam and saw some improvement.

 

When my Tinnitus is manageable I say to myself "I can do this!, I'll lock myself in a room and deal with it until this hell passes"...but when my T gets so loud, electric, and reactive, I feel lightheaded, anxious, I freak out...

 

There are also the elements of "uncertainty and fear".

 

I start doubting myself..I start having the following thoughts: will my T get better once I completely wean off benzos? Was taking the benzos and stopping them quickly really the cause of this horrid T? How long will it take to heal? Am I damaging my brain permanently for tapering? Have I done an irreversible damage and never be the same? Sometimes I blame myself for have taken the medication and stopping so quickly...

 

All these questions and feelings come into my mind, I start sweating, crying, going to the bathroom to vomit out of anxiety...

 

And yes, you are right...when I stopped taking Alprazolam abruptly and took it again, it didn't become manageable quickly. it took days...so all want is to keep tapering, but do it in a way that minimizes my symptoms (mostly my T) but doesn't get me on the medication forever.

 

I think I do have other withdrawal issues besides T, but I haven't even wanted to acknowledge them (lack of appetite, muscular tension, can hear my bones at the slightest movement, food tastes funny, problems swallowing (not all the time), and dry mouth.

 

Please, feel free to keep me posted. And once again, thank you for your input.

 

 

My suggestion is to stop taking them...or I'd ask for the to lengthen my taper to make it more bearable. Something I also learned is you do not updose. Updosing is a mistake. Even if things are really bad updosing doesnt work immediately...it takes time to adjust again. You may suffer with the tinnitus but seriously it will be much much worse if you stay on longer. You are going to deal with tinnitus regardless. The longer you stay on the worse it will be for you...take my advice. I was on 1mg klonipin for 3 1/2 years...I wish I found out as quickly as you did how bad they were. Please don't stay on them. I am not minimizing your pain, but the longer you stay on the worse that tinnitus is going to get and you will not be able to live a normal life if you stay on them.. You can do it. You will survive. I promise because I know from experience. Just try to find a way to manage, and never take them again. Ultimately it is up to you what you do, as I am not a doctor but this is what ive learned through this experience.

 

 

all of thoughts about not recovering are normal too. We all have them. You just have to counter them every time. sometimes its hard..what I used to do when I was sick all the time was take videos on my phone when I was feeling good and talk about how its just windows and waves..I would play them when I wasn't feeling good. its also good to find some support if you can. find someone in your life if possible to tell you what you need to hear when you are struggling. My boyfriend was that person for me..and when things were absolutely unbearable he would remind me why I felt the way I did, what was happening in my brain and how it always levels out again...because the truth of it is that it always does. I had tinnitus very mildly...but occasionally I got it so bad that I couldnt even hear out of one of my ears and it did scare me alot. so I understand how it could be easy to get caught up in what is called 'benzo lies' dont listen to them...with time they will get less and less and be much less intense and eventually will go away altogether. Just put the time in and find healthy ways to cope. Try to distract yourself from that sense. eventually your waves will become preventable. You're probably just in the phase where there is no rhyme or reason to why you get set off but eventually your waves will mainly only be triggered by certain things. Hang in there

 

Ive had WD induced tinnitus for 4 or 5 years. Its always there.

 

Two things to keep tinnitus in check: 1.) Keep away from stimulants. 2.) Dont pay attention to it. Its a mental game.

 

When mine gets very bad I turn on loud music in headphones to drown it out.

 

I feel your pain brother or sister. Tinnitus is something you CAN manage.

Thank you for your input. I think yours will resolve once you wean off benzos...or at least go to a baseline.

 

I'm really sorry about the tinnitus. Mine screeches so loudly at times but I'm used to it. An SSRI called sertraline gave me tinnitus way back in 2014. The only time I've had relief from it was briefly in 2016 from diazepam, before I gained a tolerance to it. I'm very much habituated to it by now. It takes on different pitches, tones, intensities but luckily not fluctuating. It's more that I'll wake up one day and that's how it is for most of the day. It's different every day. I'm incredibly grateful that it doesn't fluctuate up and down during the day. That would be a lot harder to deal with and I couldn't imagine being able to tune it out like now.

 

If it ever completely resolves itself, I will see it as a bonus. To be honest, I can't imagine life without it. It definitely went to a different level when I was going through the worst of it during my taper. Sleep is a HUGE factor and so is stress in determining how nasty my tinnitus is. I don't want to be negative but from my own experience and reading round, I think you're probably best off getting used to it for the short-medium term. When you start to recover and sleep comes back and you're no longer stressed by the smallest things, that's when you can be more hopeful of the tinnitus becoming a lot quieter or going away partially or even completely.

A smooth taper is exactly the right aim. Whether you can manage it at all times is another matter but it'd be even worse if you didn't have this goal!

 

I'm glad you told me about your tinnitus going away after many years. The other day, I had an unusually quiet day, something that I haven't really had in years. It got me daring to think I might lose the tinnitus. Now you've told me about your fluoxetine tinnitus fading after many years and that adds to the hope. I can live with it but the idea of living without it sounds like a slice of heaven to me!

 

Thanks for your input Diaz-e-BAM,

 

Yes, I do know I have to get somewhat used to it before expecting any improvement. Like I mentioned before all I want is a smooth taper that allows me to have a manageable tinnitus.

 

I did have tinnitus before due to fluoxetine (terrible spike similar to now that became a tolerable hissing after a few months), it went away eventually after many years. It would only return if I had lot of caffeine, stress, and lack of sleep.

 

Congratulations on stopping your benzo. Please keep me posted and let me know if your T gets better now that you're benzo free.

 

Best.

 

I'm really sorry about the tinnitus. Mine screeches so loudly at times but I'm used to it. An SSRI called sertraline gave me tinnitus way back in 2014. The only time I've had relief from it was briefly in 2016 from diazepam, before I gained a tolerance to it. I'm very much habituated to it by now. It takes on different pitches, tones, intensities but luckily not fluctuating. It's more that I'll wake up one day and that's how it is for most of the day. It's different every day. I'm incredibly grateful that it doesn't fluctuate up and down during the day. That would be a lot harder to deal with and I couldn't imagine being able to tune it out like now.

 

If it ever completely resolves itself, I will see it as a bonus. To be honest, I can't imagine life without it. It definitely went to a different level when I was going through the worst of it during my taper. Sleep is a HUGE factor and so is stress in determining how nasty my tinnitus is. I don't want to be negative but from my own experience and reading round, I think you're probably best off getting used to it for the short-medium term. When you start to recover and sleep comes back and you're no longer stressed by the smallest things, that's when you can be more hopeful of the tinnitus becoming a lot quieter or going away partially or even completely.

Hi,

 

My tinnitus is bad too. I find it’s easier to cope with during the day but it’s difficult at night. Mine is fluctuating and sounds like an ochestra on acid - Is the best way I can describe it. I found an app called Calm worked for me. It sounds crazy but white noise did nothing but random electronic/violin music seems to tune it out so it’s worth checking out and just give it a go. . Anyway, I hope it settles for you 🙂

Thanks for the tip and reassurance. Didn’t know there was a tinnitus station...glad you were able to manage your symptoms.

Tinnitus has been one of my difficult symptoms as well. The only difference is that I developed tinnitus about twenty five years ago. It wasn't as bad then and over the years it would get better or worse depending on my stress levels. I saw a couple of specialists and they said I had about a 20 percent hearing loss and that it would slowly get worse over time but they didn't have any cure for me.

 

I had learned to manage it pretty well and mostly tuned it out but when I started tapering Xanax, it got so much worse. For me, it seems to be worse when I do a cut of the drug and then calm down a little. It's still very loud but I can handle it better at certain times.

 

What really helps me is to go outside and let my brain kind of reset. It's not as loud when there are cars driving by, birds chirping, people mowing lawns. You get the idea. I find I can sort of forget about it and it gives me a little bit of respite.

 

I think the most important thing is to try not to get claustrophobic about it. It can feel so much worse when that happens. I have a Tinnitus radio station on pandora that I play inside and I also have an air purifier that makes a lot of background noise I can turn on when it's really bothering me. I do think yours will improve. Mine definitely gets better or worse depending on my stress levels. I hope you get some relief!