Impairing tinnitus during taper, please help!

I decided to start a new topic because the last posts I found about tinnitus are a little old, 2015 circa.

I am taking pregabalin, so I don't know if this should be moved to "other medications", the effects seem to be quite similar to those of Clonazepam withdrawal from what I have seen.

 

My problem is the tinnitus has become impairing. I have to decide whether I should taper or go further up to stabilize.

 

I was at pregabalin 150mg (coming down from 225), when a heavy cold plus possibly a ear infection gave me tinnitus. It didn't cause hearing loss beyond the one I already had, but it kind of awoke my brain to my existing hearing loss, and I started hearing a hiss. I tried to reduce the pregabalin to see if it was causing problems, but as I reduced over six months from 150mg to 50mg the tinnitus got louder and louder in the left ear where the hearing loss is. At 50mg it was unbearable and I had a host of other bad symptoms. I had to go back up to 100mg as I was collapsing, initially after the increase I could tolerate tinnitus better but after a while it went back to a level similar to the 50mg I had experienced previously.

 

I have to decide whether to try and up again back to full 225mg or to try and taper off once and for all and suffer through it if I can, and try to heal.

 

The tinnitus is constant, it does not fluctuate, which is what I find discouraging, since in most accounts people have fluctuating tinnitus during tapering, but not constantly worsening. It spread a little to the right ear over time. It cannot be masked because it is reactive. It ruins my sleep, concentration, job and family life. Leads to suicidal thoughts.

 

I am looking for people experiences during after tapering, especially clonazepam (and in case pregabalin or gabapentin),

 

1. Has anyone had my type of tinnitus, loud super high-frequency hiss, unmaskable, reactive, predominantly left ear?

2. Has anyone fully recovered? How long did it take in case?

3. Any suggestion on whether I could be in tolerance or I should up the dosage?

4. Any other advice on how I can manage it? Masking doesn't work, white or violet or coloured noise does not work, I'm trying physiotherapy for my neck but it's not a TMJ problem apparently. ENT doctors have no clues.

 

Thanks in advance.

 

 

 

Pregabalin is known to be ototoxic (along with most psyc drugs) It usually comes on while tapering off a psy drug. Tapering off Valium is what gave me tinnitus.  If I go back up in dosage it seem to abate for  a while, but as I continue to taper, it always come back Some people get T long after they  have finished their taper. IF I can fall asleep, it doesn't seem to bother what little sleep I get, but when I wake up, it is always there. Its one of my worst

sxs. Nothing I have found can alleviate it except updosing and that will only work for a while.  Wish I could offer  better prospects.

 

 

https://hearinglosshelp.com/blog/dont-get-hooked-on-drugs-such-as-pregabalin/

see a psychiatrist and/or neurologist. i would recommend experimenting with some drugs but not allowed to do so on this site

Hi Chinmoku,

 

I hope you get the responses you're looking for, but in case you don't, this thread has been fairly active.  http://www.benzobuddies.org/forum/index.php?topic=96554.0

 

Pamster

 

Pregabalin is known to be ototoxic (along with most psyc drugs) It usually comes on while tapering off a psy drug. Tapering off Valium is what gave me tinnitus.  If I go back up in dosage it seem to abate for  a while, but as I continue to taper, it always come back Some people get T long after they  have finished their taper. IF I can fall asleep, it doesn't seem to bother what little sleep I get, but when I wake up, it is always there. Its one of my worst

sxs. Nothing I have found can alleviate it except updosing and that will only work for a while.  Wish I could offer  better prospects.

 

 

https://hearinglosshelp.com/blog/dont-get-hooked-on-drugs-such-as-pregabalin/

Yes I had seen that, thank you. The author does not seem to be qualified in audiology/ENT/neurology and his list of ototoxic medications includes so many entries, everything is ototoxic.

Thank you also for your other comment on tapering. I really don't know what to do.

see a psychiatrist and/or neurologist. i would recommend experimenting with some drugs but not allowed to do so on this site

 

I saw a couple of psychiatrists, but they have different opinions.

One thinks I should push through and taper to zero (but with these symptoms level I'd end up in a psychiatric ward or worse), the other one wants me to reinstate.

You mean drugs like illegal drugs? I read there are clinical trials on some such drugs but for depression not tinnitus

Hi Chinmoku,

 

I hope you get the responses you're looking for, but in case you don't, this thread has been fairly active.  http://www.benzobuddies.org/forum/index.php?topic=96554.0

 

Pamster

Thank you, I had missed that

I decided to start a new topic because the last posts I found about tinnitus are a little old, 2015 circa.

I am taking pregabalin, so I don't know if this should be moved to "other medications", the effects seem to be quite similar to those of Clonazepam withdrawal from what I have seen.

 

My problem is the tinnitus has become impairing. I have to decide whether I should taper or go further up to stabilize.

 

The tinnitus is constant, it does not fluctuate, which is what I find discouraging, since in most accounts people have fluctuating tinnitus during tapering, but not constantly worsening. It spread a little to the right ear over time. It cannot be masked because it is reactive. It ruins my sleep, concentration, job and family life. Leads to suicidal thoughts.

 

I am looking for people experiences during after tapering, especially clonazepam (and in case pregabalin or gabapentin),

 

1. Has anyone had my type of tinnitus, loud super high-frequency hiss, unmaskable, reactive, predominantly left ear?

2. Has anyone fully recovered? How long did it take in case?

3. Any suggestion on whether I could be in tolerance or I should up the dosage?

4. Any other advice on how I can manage it? Masking doesn't work, white or violet or coloured noise does not work, I'm trying physiotherapy for my neck but it's not a TMJ problem apparently. ENT doctors have no clues.

 

Thanks in advance.

 

My tinnitus is in both ears 24/7 like a loud swarm of cicadas and not relenting.

I even try and mask it with a fan in my bedroom, where the volume of my tinnitus is higher than a "whirring" fan.

 

I have had to learn tolerance and hope that my brain will hit homeostasis one day and the tinnitus will cease. I have had it before 12 years ago and it it did dissipate, which instils hope that it will cease again.

 

Still its not easy to tolerate, and one just has to train your brain to ignore it, and stop focusing on it. There is no switch just to turn it off. I watched this on YouTube which did help

 

I hope this helps and good luck for your recovery.

I decided to start a new topic because the last posts I found about tinnitus are a little old, 2015 circa.

I am taking pregabalin, so I don't know if this should be moved to "other medications", the effects seem to be quite similar to those of Clonazepam withdrawal from what I have seen.

 

My problem is the tinnitus has become impairing. I have to decide whether I should taper or go further up to stabilize.

 

The tinnitus is constant, it does not fluctuate, which is what I find discouraging, since in most accounts people have fluctuating tinnitus during tapering, but not constantly worsening. It spread a little to the right ear over time. It cannot be masked because it is reactive. It ruins my sleep, concentration, job and family life. Leads to suicidal thoughts.

 

I am looking for people experiences during after tapering, especially clonazepam (and in case pregabalin or gabapentin),

 

1. Has anyone had my type of tinnitus, loud super high-frequency hiss, unmaskable, reactive, predominantly left ear?

2. Has anyone fully recovered? How long did it take in case?

3. Any suggestion on whether I could be in tolerance or I should up the dosage?

4. Any other advice on how I can manage it? Masking doesn't work, white or violet or coloured noise does not work, I'm trying physiotherapy for my neck but it's not a TMJ problem apparently. ENT doctors have no clues.

 

Thanks in advance.

 

My tinnitus is in both ears 24/7 like a loud swarm of cicadas and not relenting.

I even try and mask it with a fan in my bedroom, where the volume of my tinnitus is higher than a "whirring" fan.

 

I have had to learn tolerance and hope that my brain will hit homeostasis one day and the tinnitus will cease. I have had it before 12 years ago and it it did dissipate, which instils hope that it will cease again.

 

Still its not easy to tolerate, and one just has to train your brain to ignore it, and stop focusing on it. There is no switch just to turn it off. I watched this on YouTube which did help

 

I hope this helps and good luck for your recovery.

Thank you, sorry to hear you are stuck with this too but glad to hear it went away in the past, I hope it goes away again for you. I'm really exhausted and suicidal as I am now I don't stand a chance of continuing the taper, I'm stuck at my current dosage but the tinnitus keeps worsening, it does not improve. I'm not sure it's just the drug, I'll have to find out.

Thank you for linking the video, I had seen that, unfortunately these drugs we are taking seem to stop neuroplasticity to some extent.

 

Thank you, sorry to hear you are stuck with this too but glad to hear it went away in the past, I hope it goes away again for you. I'm really exhausted and suicidal as I am now I don't stand a chance of continuing the taper, I'm stuck at my current dosage but the tinnitus keeps worsening, it does not improve. I'm not sure it's just the drug, I'll have to find out.

Thank you for linking the video, I had seen that, unfortunately these drugs we are taking seem to stop neuroplasticity to some extent.

 

Just hang in there, it takes time. I even got excited yesterday as there was a sudden change in my tinnitus pitch and it went even louder for a couple of seconds, first time in months!To me, if a change can happen, even in pitch, means it can change and will go away over time.

 

PM me if you feeling exasperated, please try not give it too much attention. Its summer where I am at, so I keep a fan blowing which also masks the tinnitus.

 

 

Thank you, sorry to hear you are stuck with this too but glad to hear it went away in the past, I hope it goes away again for you. I'm really exhausted and suicidal as I am now I don't stand a chance of continuing the taper, I'm stuck at my current dosage but the tinnitus keeps worsening, it does not improve. I'm not sure it's just the drug, I'll have to find out.

Thank you for linking the video, I had seen that, unfortunately these drugs we are taking seem to stop neuroplasticity to some extent.

 

might as well jump if you're tapering and struggling like that

 

Just hang in there, it takes time. I even got excited yesterday as there was a sudden change in my tinnitus pitch and it went even louder for a couple of seconds, first time in months!To me, if a change can happen, even in pitch, means it can change and will go away over time.

 

PM me if you feeling exasperated, please try not give it too much attention. Its summer where I am at, so I keep a fan blowing which also masks the tinnitus.

Withdrawal often makes vertigo worse or causes it in previously asymptomatic people. Vestibular issues happen both from the drugs (even on taper) and from the withdrawal symptoms. Many receptors in the gut are altered by withdrawal. Nausea and vertigo go back and forth. Blood sugar and blood pressure fluctuations are common in withdrawal, these too can cause vertigo.

 

Many Americans are already hypothyroid before wd. The stress can cause dramatic symptoms where there might not have been any before.

 

Check out the thyroid:

TSH levels fluctuate daily and seasonally. Pharmaceutical drugs may interfere with any stage of thyroid production.

.... FT4 and Total T3 show no correlation whatsoever to TSH.  TSH has been suppressed while FT4 has always been in the lower half of the reference range. Lowering xxxx's thyroid medication did not raise TSH, but did make xxxxx. feel worse.

 

Unbalanced, uncoordinated walking has been seen in severe hypothyroidism. Both hyper and hypo-thyroidism can cause reversible dementia.

 

Vitamin C supports the adrenal glands which produce cortisol, Vitamin D is beneficial against autoimmunity and cancer, and selenium helps T4 to T3 conversion. Nausea, dizziness, vertigo, and vomiting have been documented in severely hypothyroid patients. Flat, scoop-like fingernails (koilonychia) can be a sign of hypothyroidism. A sweet tooth may be a sign of hypoglycemia, which can be caused by low cortisol. Thyroid hormone raises cortisol clearance.

 

Lougheed, Barbara S.. Tired Thyroid: From Hyper to Hypo to Healing—Breaking the TSH Rule . Grain of Salt Publications LLC. Kindle Edition.

 

Check out a full thyroid panel. It might help. Good to make sure all the bases are covered. Hope it helps.

 

 

 

 

Here is a link to a masking sound I use for my high pitched T.  (about 10kc)

 

http://dtfsdf.oco.net/Crickets_4.mp3

 

You can download it. put it on an mp3 player and put earbuds in your ears. No... it doesn't entirely

mask it but it make it more bearable. My T seem to change intensity....not completely go away... so

there is hope that it will get better with time.  Ashton says its one of the last symptoms to go away... hopefully it will for all of us T sufferers.

 

 

 

Thank you, sorry to hear you are stuck with this too but glad to hear it went away in the past, I hope it goes away again for you. I'm really exhausted and suicidal as I am now I don't stand a chance of continuing the taper, I'm stuck at my current dosage but the tinnitus keeps worsening, it does not improve. I'm not sure it's just the drug, I'll have to find out.

Thank you for linking the video, I had seen that, unfortunately these drugs we are taking seem to stop neuroplasticity to some extent.

 

Just hang in there, it takes time. I even got excited yesterday as there was a sudden change in my tinnitus pitch and it went even louder for a couple of seconds, first time in months!To me, if a change can happen, even in pitch, means it can change and will go away over time.

 

PM me if you feeling exasperated, please try not give it too much attention. Its summer where I am at, so I keep a fan blowing which also masks the tinnitus.

Thank you, I will PM you possibly after the Christmas break, I'm losing my mind. I hope yours starts fading soon.

Withdrawal often makes vertigo worse or causes it in previously asymptomatic people. Vestibular issues happen both from the drugs (even on taper) and from the withdrawal symptoms. Many receptors in the gut are altered by withdrawal. Nausea and vertigo go back and forth. Blood sugar and blood pressure fluctuations are common in withdrawal, these too can cause vertigo.

 

Many Americans are already hypothyroid before wd. The stress can cause dramatic symptoms where there might not have been any before.

 

Check out the thyroid:

TSH levels fluctuate daily and seasonally. Pharmaceutical drugs may interfere with any stage of thyroid production.

.... FT4 and Total T3 show no correlation whatsoever to TSH.  TSH has been suppressed while FT4 has always been in the lower half of the reference range. Lowering xxxx's thyroid medication did not raise TSH, but did make xxxxx. feel worse.

 

Unbalanced, uncoordinated walking has been seen in severe hypothyroidism. Both hyper and hypo-thyroidism can cause reversible dementia.

 

Vitamin C supports the adrenal glands which produce cortisol, Vitamin D is beneficial against autoimmunity and cancer, and selenium helps T4 to T3 conversion. Nausea, dizziness, vertigo, and vomiting have been documented in severely hypothyroid patients. Flat, scoop-like fingernails (koilonychia) can be a sign of hypothyroidism. A sweet tooth may be a sign of hypoglycemia, which can be caused by low cortisol. Thyroid hormone raises cortisol clearance.

 

Lougheed, Barbara S.. Tired Thyroid: From Hyper to Hypo to Healing—Breaking the TSH Rule . Grain of Salt Publications LLC. Kindle Edition.

 

Check out a full thyroid panel. It might help. Good to make sure all the bases are covered. Hope it helps.

Thank you, I had a thyroid check months ago and the doctor gave me some supplements, including selenium. I'll have to go back for reassessment

might as well jump if you're tapering and struggling like that

I thought about that, but jumping off pregabalin at about 150mg is too high I think. I need go get down to 25mg first, or at worst go with a quick taper, perhaps down 25mg a week or every other week. It's tough but I don't think I have any choice, I can't face this torture for months and months. On the other hand if I jump off and the tinnitus worsens further, as I fear, I don't know what I will do. 

well, look at it that way.. the sooner you get off all these meds, the sooner your tinnitus will start fading.. but you will have to be patient.. i had to wait 3 months to start seeing reduction.

well, look at it that way.. the sooner you get off all these meds, the sooner your tinnitus will start fading.. but you will have to be patient.. i had to wait 3 months to start seeing reduction.

I hope so. The problem is that I tried to reduce in the past and at 75-50mg I had symptoms out of hell, very similar to clonazepam withdrawal.  On top of  this level of tinnitus that would crush me. On the other hand it keeps getting worse even if I reinstate. It seems it is both a side effect and a withdrawal symptom. I might be in tolerance. Maddening. I'll try to get to zero.

godspeed buddy. i know its so tough

I wanted to update this thread as the situation has evolved and I'm still in need of suggestions/impressions from other users. I also check the Tenacious Tinnitus Club thread for more ideas but this is rather specific.

 

I updated my signature. In short, after I got tinnitus and balance problems presumably from a ear infection while I was under pregabalin for different reasons in Sept 2018, I tapered to zero with many difficulties and in February 2020 I was free. However the tinnitus kept worsening (I had also reinstated at some point but it didn't help, that's why it took long) and the last two weeks of the pregabalin taper I had a traumatic family event and I was put on clonazepam 0.5 to cope with the final part of the taper, the tinnitus and the event. The drug worked in making me more indifferent to tinnitus for two weeks and generally more calm, but then lost all effects. I am not keen on increasing the dose although that was a possible suggestion from doctors. Also, as I held at 0.5 tinnitus started worsening again.

 

In a last ditch attempt to try to stay off all gaba drugs and see if I heal, I have been reducing the Clonazepam. As I have been on it a relatively short time, I went down from 0.5 to 0.375 after two months and to 0.25 after further two months. I'm planning to try 0.125 next and then jump to zero. I know this is fast and not a Ashton type taper but I don't think I have the strength to do a slow taper. I am very debilitated, my kids suffer, I risk losing my job, I am losing all hope. I need to try this make or break. 

 

Question: could this be tolerance withdrawal, perhaps exacerbated by previous exposition to pregabalin (a gaba analogue)? The fact that it becomes more intrusive while holding the dose could be tolerance, but it could also be that tinnitus is worsening for some other reason. I had tons of tests and tried a lot of supplements and treatments in vain, but this is a condition the medical profession does not understand well and by exclusion the only thing I can think of for the constant aggravation is gaba drugs/tolerance, unless it's something unknown.

 

Any contribution or suggestions from people experienced with severe tinnitus would be appreciated. Mine is a loud hiss/static at very high frequency and broadband (but probably centered around 11khz). It's reactive and very hard to mask, and masking makes it worse usually. I'm looking for stories of hope, people who had severe tinnitus for 20+ months and whose tinnitus eased months or years after coming off. Mine never fluctuates, it's constant and worsens, which is quite discouraging.

 

There is big debate on whether gaba-drugs tapering can cause exitotoxicity and permanent damage to the auditory nerves/neurons, leaving one with permanent superloud tinnitus, or whether it is a temporary neurotransmitter imbalance that is corrected in time and leaves one only with the "baseline" tinnitus. I hope I am not in the permanent category because I can't go on like this for much longer.

 

Thank you in advance.

 

 

 

 

 

I decided to start a new topic because the last posts I found about tinnitus are a little old, 2015 circa.

I am taking pregabalin, so I don't know if this should be moved to "other medications", the effects seem to be quite similar to those of Clonazepam withdrawal from what I have seen.

 

My problem is the tinnitus has become impairing. I have to decide whether I should taper or go further up to stabilize.

 

The tinnitus is constant, it does not fluctuate, which is what I find discouraging, since in most accounts people have fluctuating tinnitus during tapering, but not constantly worsening. It spread a little to the right ear over time. It cannot be masked because it is reactive. It ruins my sleep, concentration, job and family life. Leads to suicidal thoughts.

 

I am looking for people experiences during after tapering, especially clonazepam (and in case pregabalin or gabapentin),

 

1. Has anyone had my type of tinnitus, loud super high-frequency hiss, unmaskable, reactive, predominantly left ear?

2. Has anyone fully recovered? How long did it take in case?

3. Any suggestion on whether I could be in tolerance or I should up the dosage?

4. Any other advice on how I can manage it? Masking doesn't work, white or violet or coloured noise does not work, I'm trying physiotherapy for my neck but it's not a TMJ problem apparently. ENT doctors have no clues.

 

Thanks in advance.

 

My tinnitus is in both ears 24/7 like a loud swarm of cicadas and not relenting.

I even try and mask it with a fan in my bedroom, where the volume of my tinnitus is higher than a "whirring" fan.

 

I have had to learn tolerance and hope that my brain will hit homeostasis one day and the tinnitus will cease. I have had it before 12 years ago and it it did dissipate, which instils hope that it will cease again.

 

Still its not easy to tolerate, and one just has to train your brain to ignore it, and stop focusing on it. There is no switch just to turn it off. I watched this on YouTube which did help

 

I hope this helps and good luck for your recovery.

 

Yes, my tinnitus is like this as well. I said in a tinnitus forum that I have a head full of cicadas and a heart full of dreams. 🙃 I've had it for over 25 years. It's worse now that I'm tapering but yes, you can learn to live with it. It takes time. I mask the noise somewhat with music like tinnitus radio on Pandora when it's making feel panicky. Otherwise, I try to accept it. Going outside helps me as well. The outside suburban noise pollution masks it a little.

I wanted to update this thread as the situation has evolved and I'm still in need of suggestions/impressions from other users. I also check the Tenacious Tinnitus Club thread for more ideas but this is rather specific.

 

I updated my signature. In short, after I got tinnitus and balance problems presumably from a ear infection while I was under pregabalin for different reasons in Sept 2018, I tapered to zero with many difficulties and in February 2020 I was free. However the tinnitus kept worsening (I had also reinstated at some point but it didn't help, that's why it took long) and the last two weeks of the pregabalin taper I had a traumatic family event and I was put on clonazepam 0.5 to cope with the final part of the taper, the tinnitus and the event. The drug worked in making me more indifferent to tinnitus for two weeks and generally more calm, but then lost all effects. I am not keen on increasing the dose although that was a possible suggestion from doctors. Also, as I held at 0.5 tinnitus started worsening again.

 

In a last ditch attempt to try to stay off all gaba drugs and see if I heal, I have been reducing the Clonazepam. As I have been on it a relatively short time, I went down from 0.5 to 0.375 after two months and to 0.25 after further two months. I'm planning to try 0.125 next and then jump to zero. I know this is fast and not a Ashton type taper but I don't think I have the strength to do a slow taper. I am very debilitated, my kids suffer, I risk losing my job, I am losing all hope. I need to try this make or break. 

 

Question: could this be tolerance withdrawal, perhaps exacerbated by previous exposition to pregabalin (a gaba analogue)? The fact that it becomes more intrusive while holding the dose could be tolerance, but it could also be that tinnitus is worsening for some other reason. I had tons of tests and tried a lot of supplements and treatments in vain, but this is a condition the medical profession does not understand well and by exclusion the only thing I can think of for the constant aggravation is gaba drugs/tolerance, unless it's something unknown.

 

Any contribution or suggestions from people experienced with severe tinnitus would be appreciated. Mine is a loud hiss/static at very high frequency and broadband (but probably centered around 11khz). It's reactive and very hard to mask, and masking makes it worse usually. I'm looking for stories of hope, people who had severe tinnitus for 20+ months and whose tinnitus eased months or years after coming off. Mine never fluctuates, it's constant and worsens, which is quite discouraging.

 

There is big debate on whether gaba-drugs tapering can cause exitotoxicity and permanent damage to the auditory nerves/neurons, leaving one with permanent superloud tinnitus, or whether it is a temporary neurotransmitter imbalance that is corrected in time and leaves one only with the "baseline" tinnitus. I hope I am not in the permanent category because I can't go on like this for much longer.

 

Thank you in advance.

 

 

 

Thank you so much for updating this thread,

 

I am suffering from the  most horrendous hissing and  rumbling tinnitus, and it gets louder and louder,

 

I am deaf since my 30's and use an aid,  I also had some tinnitus but I got used to it,

 

Since tapering off valium this increased and increased and now I am 6.5 months off valium and taking nothing else it is beyond awful ,

 

I do hope that it will ease with time, as it is extreme,  , 

 

The hissing I can accept and my fan seemed to help that, but  not the extra booming sound, I have which vibrates through my head and my body and makes my head sound odd if I tap it, or brush my hair as if it too , booms, 

 

What a mess this drug withdrawal can cause, 

 

I would love to think it will lessen in time but as yet not to be ,

 

any good news on this would be so appreciated

 

Perhaps when once again in balance it will ease back to base line

 

Fingers crossed for us all

 

Jen 

Yes, my tinnitus is like this as well. I said in a tinnitus forum that I have a head full of cicadas and a heart full of dreams. 🙃 I've had it for over 25 years. It's worse now that I'm tapering but yes, you can learn to live with it. It takes time. I mask the noise somewhat with music like tinnitus radio on Pandora when it's making feel panicky. Otherwise, I try to accept it. Going outside helps me as well. The outside suburban noise pollution masks it a little.

I envy you, my tinnitus could never be masked by noise pollution. Perhaps in the very beginning, but now the high frequency static/hissing scream cuts through anything.

I wanted to update this thread as the situation has evolved and I'm still in need of suggestions/impressions from other users. I also check the Tenacious Tinnitus Club thread for more ideas but this is rather specific.

 

I updated my signature. In short, after I got tinnitus and balance problems presumably from a ear infection while I was under pregabalin for different reasons in Sept 2018, I tapered to zero with many difficulties and in February 2020 I was free. However the tinnitus kept worsening (I had also reinstated at some point but it didn't help, that's why it took long) and the last two weeks of the pregabalin taper I had a traumatic family event and I was put on clonazepam 0.5 to cope with the final part of the taper, the tinnitus and the event. The drug worked in making me more indifferent to tinnitus for two weeks and generally more calm, but then lost all effects. I am not keen on increasing the dose although that was a possible suggestion from doctors. Also, as I held at 0.5 tinnitus started worsening again.

 

In a last ditch attempt to try to stay off all gaba drugs and see if I heal, I have been reducing the Clonazepam. As I have been on it a relatively short time, I went down from 0.5 to 0.375 after two months and to 0.25 after further two months. I'm planning to try 0.125 next and then jump to zero. I know this is fast and not a Ashton type taper but I don't think I have the strength to do a slow taper. I am very debilitated, my kids suffer, I risk losing my job, I am losing all hope. I need to try this make or break. 

 

Question: could this be tolerance withdrawal, perhaps exacerbated by previous exposition to pregabalin (a gaba analogue)? The fact that it becomes more intrusive while holding the dose could be tolerance, but it could also be that tinnitus is worsening for some other reason. I had tons of tests and tried a lot of supplements and treatments in vain, but this is a condition the medical profession does not understand well and by exclusion the only thing I can think of for the constant aggravation is gaba drugs/tolerance, unless it's something unknown.

 

Any contribution or suggestions from people experienced with severe tinnitus would be appreciated. Mine is a loud hiss/static at very high frequency and broadband (but probably centered around 11khz). It's reactive and very hard to mask, and masking makes it worse usually. I'm looking for stories of hope, people who had severe tinnitus for 20+ months and whose tinnitus eased months or years after coming off. Mine never fluctuates, it's constant and worsens, which is quite discouraging.

 

There is big debate on whether gaba-drugs tapering can cause exitotoxicity and permanent damage to the auditory nerves/neurons, leaving one with permanent superloud tinnitus, or whether it is a temporary neurotransmitter imbalance that is corrected in time and leaves one only with the "baseline" tinnitus. I hope I am not in the permanent category because I can't go on like this for much longer.

 

Thank you in advance.

 

 

 

Thank you so much for updating this thread,

 

I am suffering from the  most horrendous hissing and  rumbling tinnitus, and it gets louder and louder,

 

I am deaf since my 30's and use an aid,  I also had some tinnitus but I got used to it,

 

Since tapering off valium this increased and increased and now I am 6.5 months off valium and taking nothing else it is beyond awful ,

 

I do hope that it will ease with time, as it is extreme,  , 

 

The hissing I can accept and my fan seemed to help that, but  not the extra booming sound, I have which vibrates through my head and my body and makes my head sound odd if I tap it, or brush my hair as if it too , booms, 

 

What a mess this drug withdrawal can cause, 

 

I would love to think it will lessen in time but as yet not to be ,

 

any good news on this would be so appreciated

 

Perhaps when once again in balance it will ease back to base line

 

Fingers crossed for us all

 

Jen

Very sorry to hear it is such a distressing symptom for you as well, Jen.

I really hope it gets better, it may take a long time but we need to keep hope alive.

When one says "tinnitus" one may mean very different things. Super-severe tinnitus like our own is torture. I am tortured 24/7 so it's very hard to keep my job, a battle I'm losing, and also my kids would need me but I am barely holding it together. The temptation to updose is constant, even if I'm sure it would not help me much. The other problem in my case is that I'm not even sure it's the drug, although I think it's pretty likely it is contributing. Let's hope in an improvement soon for all of us suffering from this horrid symptom.

I wanted to update this thread as the situation has evolved and I'm still in need of suggestions/impressions from other users. I also check the Tenacious Tinnitus Club thread for more ideas but this is rather specific.

 

I updated my signature. In short, after I got tinnitus and balance problems presumably from a ear infection while I was under pregabalin for different reasons in Sept 2018, I tapered to zero with many difficulties and in February 2020 I was free. However the tinnitus kept worsening (I had also reinstated at some point but it didn't help, that's why it took long) and the last two weeks of the pregabalin taper I had a traumatic family event and I was put on clonazepam 0.5 to cope with the final part of the taper, the tinnitus and the event. The drug worked in making me more indifferent to tinnitus for two weeks and generally more calm, but then lost all effects. I am not keen on increasing the dose although that was a possible suggestion from doctors. Also, as I held at 0.5 tinnitus started worsening again.

 

In a last ditch attempt to try to stay off all gaba drugs and see if I heal, I have been reducing the Clonazepam. As I have been on it a relatively short time, I went down from 0.5 to 0.375 after two months and to 0.25 after further two months. I'm planning to try 0.125 next and then jump to zero. I know this is fast and not a Ashton type taper but I don't think I have the strength to do a slow taper. I am very debilitated, my kids suffer, I risk losing my job, I am losing all hope. I need to try this make or break. 

 

Question: could this be tolerance withdrawal, perhaps exacerbated by previous exposition to pregabalin (a gaba analogue)? The fact that it becomes more intrusive while holding the dose could be tolerance, but it could also be that tinnitus is worsening for some other reason. I had tons of tests and tried a lot of supplements and treatments in vain, but this is a condition the medical profession does not understand well and by exclusion the only thing I can think of for the constant aggravation is gaba drugs/tolerance, unless it's something unknown.

 

Any contribution or suggestions from people experienced with severe tinnitus would be appreciated. Mine is a loud hiss/static at very high frequency and broadband (but probably centered around 11khz). It's reactive and very hard to mask, and masking makes it worse usually. I'm looking for stories of hope, people who had severe tinnitus for 20+ months and whose tinnitus eased months or years after coming off. Mine never fluctuates, it's constant and worsens, which is quite discouraging.

 

There is big debate on whether gaba-drugs tapering can cause exitotoxicity and permanent damage to the auditory nerves/neurons, leaving one with permanent superloud tinnitus, or whether it is a temporary neurotransmitter imbalance that is corrected in time and leaves one only with the "baseline" tinnitus. I hope I am not in the permanent category because I can't go on like this for much longer.

 

Thank you in advance.

 

 

 

Thank you so much for updating this thread,

 

I am suffering from the  most horrendous hissing and  rumbling tinnitus, and it gets louder and louder,

 

I am deaf since my 30's and use an aid,  I also had some tinnitus but I got used to it,

 

Since tapering off valium this increased and increased and now I am 6.5 months off valium and taking nothing else it is beyond awful ,

 

I do hope that it will ease with time, as it is extreme,  , 

 

The hissing I can accept and my fan seemed to help that, but  not the extra booming sound, I have which vibrates through my head and my body and makes my head sound odd if I tap it, or brush my hair as if it too , booms, 

 

What a mess this drug withdrawal can cause, 

 

I would love to think it will lessen in time but as yet not to be ,

 

any good news on this would be so appreciated

 

Perhaps when once again in balance it will ease back to base line

 

Fingers crossed for us all

 

Jen

Very sorry to hear it is such a distressing symptom for you as well, Jen.

I really hope it gets better, it may take a long time but we need to keep hope alive.

When one says "tinnitus" one may mean very different things. Super-severe tinnitus like our own is torture. I am tortured 24/7 so it's very hard to keep my job, a battle I'm losing, and also my kids would need me but I am barely holding it together. The temptation to updose is constant, even if I'm sure it would not help me much. The other problem in my case is that I'm not even sure it's the drug, although I think it's pretty likely it is contributing. Let's hope in an improvement soon for all of us suffering from this horrid symptom.

 

 

 

Yes it really is a horrible symptom and we cannot be sure it's the drug , but if it began when trying to remove it, I can only think it is, 

 

I see you  were taking pregabalin,  I  did try that for a week before the valium and found it turned me into a zombie , I  don't know if that started this off, or not, I only know this is so severe,

 

I have a deep rumbling, that vibrates through me, in the left ear,

 

I have always had a slight hissing sound, but now that is bad too,  I can hardly hear a thing for this noise, there is no escape ,

 

I sometime wonder if the fan makes it worse now.

 

I have so many other symptoms on top, so this as well is making life unbearable ,

 

I am just hoping that it will eventually settle and my body settles, but I have only got worse so far at 6.5 months,

 

Until you have experienced this in the very severe form it is hard to comprehend how difficult it is to cope with ,

 

I am hoping it will improve for both of us in the near future , 

 

Best wishes

 

Jen