Tinnitus Keeps Worsening on Its Own: Why?

Discussion in 'Support' started by Chinmoku, Jul 23, 2019.

    1. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I read in the forum that usually tinnitus does not worsen on its own, but if it keeps worsening there is a reason. I am having this. When it started in Fall 2018, presumably due to a ear infection following a big cold, it was quite mild in retrospective. It has been increasing progressively and now it is a loud static high frequency hiss and it spread to the right ear. I cannot stop this worsening trend or find out a clear reason why this is happening.

      When I was hit by tinnitus I was on an average dose of pregabalin. I thought the drug could be contributing and started reducing it under supervision. It took me months and a lot of pain to get to a very low dose. However, as I went down, tinnitus kept worsening rather than improve, and my mood became very poor as my stress increased a lot. This is where I am now. A neurologist suggested that by reducing the medication I am exposed to stress more and more, and this makes tinnitus louder, and I need to up the dosage again, improve and then possibly remove the medication later once stable. I don't have many other choices but instinctively I don't like this.

      My request: I would be grateful for suggestions and for stories of other forum members that had their tinnitus progressively worsening, especially tinnitus not due to noise trauma.

      Any idea of why that happens, other than medication (my evidence against medication is inconclusive)?
      Has it stopped?
      Has it reverted? What did you do?

      For the record, I am protecting my ears with earplugs, although I didn't do it from the very beginning and my tinnitus is not due to acoustic trauma.

      Thanks in advance.
       
      • Hug Hug x 2
    2. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      No one? :( I realise it's a difficult question but was hoping to find someone who had a similar experience
       
    3. HeavyMantra
      Bugridden

      HeavyMantra Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      01/2017. Worsened 10/2018
      Cause of Tinnitus:
      Headphones and/or HPPD?
      @AVIYT
       
    4. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI @Chinmoku

      It is important to try and find out what caused your tinnitus? If it wasn't noise induced and it's getting worse my advice to you is, go back to ENT for tests then be referred to Audiologly and be seen by a Hearing Therapist or Audiologist that specialises in tinnitus treatment and management.

      The ear is too delicate an organ to try and diagnose what is causing the increase in tinnitus by yourself, as it could be a number of things. This needs professional help.

      All the best
      Michael
       
    5. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you Michael, I have seen three ENTs and a neurologist. They cannot find a reason for this. The audiologist gave me hearing aids with white noise. I don't use them too much as white noise irritates my tinnitus, but I need some respite. I don't know what to do next. The worsening is very scary and I can hardly cope.
       
      • Hug Hug x 1
    6. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI @Chinmoku

      Since you have seen more than one ENT specialist it may be difficult to offer any advice that will help you. The fact that you were given hearing aids means that you have some hearing loss? Hearing loss can cause tinnitus and if you don't use them the tinnitus can increase. This is because the brain cannot hear certain sounds from the environment so turns up its internal gain, rather like a volume control to hear these sounds. In the process it increases the tinnitus too. If you really do have a significant amount of hearing loss and your Audiologist just wasn't selling you these devices for monetary gain (it happens I'm afraid) then I strongly advice you to use them.

      Turn off the white noise and give your ears time to adjust to the hearing aids. Medication and stress can increase tinnitus too, so you might want to monitor this. I also advise that you don't use headphones even at low volume. Try using a " sound machine" for sound enrichment especially at night, instead of sleeping in a quiet room.

      You haven't said which part of the world you live? In the UK a patient having difficulty coping with tinnitus would be referred to Audiology to see a Hearing Therapist or Audiologist that specialises in tinnitus treatment and management. I don't just mean supplying hearing aids. A variety of treatments are available depending on the hospital one is referred to. Treatments such as: TRT, CBT, counselling, medication, Mindfullness, relaxation classes, can be helpful where available.

      Try and get referred to a tinnitus "specialist" once it is confirmed ENT find no underlying cause within your auditory system that is causing the tinnitus. If it is hearing loss contributing to the increase in your tinnitus, then you should use your hearing aids.

      Michael
       
      • Useful Useful x 1
    7. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I had the hearing aids at a UK hospital. They instructed me. My hearing loss seems to be mostly above 8khz but hearing aids only arrive at 8khz so they help a little but not much. I'll try to wear them more but I don't think that's the solution.
       
    8. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      I advise you to discuss the matter with your Hearing Therapist. Your tinnitus is increasing and there's a reason for it. With respect, it's not something you can diagnose yourself, you may think the hearing aids will not be much of a help but I disagree. It is well known hearing loss makes tinnitus worse and if you're not wearing the hearing aids your tinnitus will increase over time. Talk this over with your Hearing therapist, he/she is the professional and that is what you need in this instance.

      I wish you well.

      Michael
       
      • Agree Agree x 1
    9. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you.
       
      • Like Like x 1
    10. AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      Many people after Pregabalin report being sensitive to sounds, even those without tinnitus.. here's some examples from the FB group Lyrica Survivors:
      "Yes, quite a lot while tapering. Heard voices, someone jiggling the doorknob. Saw shadows.Yes, quite a lot while tapering. Heard voices, someone jiggling the doorknob. Saw shadows."
      " I have definitely had visual, auditory & olfactory hallucinations throughout my cold turkey off of lyrica. Including a very disturbing strong one about a year and 3 months off."
      " I always heard people laughing and talking in another room. I could never make out what they said but I would often ask my husband “can you hear ‘the people ‘?” I am lyrica free two and a half years and just noticed recently - I don’t hear them anymore. "
      "I had similar things happen to me. Hearing and seeing things. Thankfully it does end. Almost 1 year off!"
      "As you probably saw from my previous comments on other posts, I have had tinnitus for the past nine years since stopping Lyrica. I don't have balance issues after stopping though. I believe I have some information about it in the file called Brain Health."
      "I am very sorry to hear that, Vincent. However, it's a good sign that your tinnitus level subsided. It might go completely. Mine keeps increasing as I drop, I hear it all the time now, even in noisy environments. Like you, I'm worried for the impact this is having on my family life. I hope you see improvements soon on both tinnitus and balance."

      My tinnitus is still with me. I've had it since January 1st, 2019. Almost 8 months now.
       
    11. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you @AVIYT . Yes there are several anecdotal reports that pregabalin creates problems with hearing. Your case is quite clearcut too. My problem is that I don't understand whether I should increase pregabalin or come off it. Instinctively it is a drug I don't like, given also reports like your own, but my tinnitus increased as I reduced pregabalin more and more. My tinnitus is now so intrusive and loud that I need to find the right direction or I will become crazy. At some point I did an experiment and went back one step in the taper to see if tinnitus would improve or stabilize. Instead it kept worsening. So if I had to guess I would say that I either need to get off completely to start healing, or perhaps pregabalin has made me so sensitive to sounds that everything spikes my tinnitus on a continued basis without me noticing it? As I wrote above a doctor thinks i need to increase my dose again.
      In theory, when you taper pregabalin glutamate increases in the brain and glutamate tends to exacerbate some types of tinnitus, being an excitatory neurotransmitter. That's why some gaba drugs like clonazepam occasionally help, gaba fights glutamate. If this is true increasing pregabalin again should help, but my little experiment goes against this, as I increased back a little with no benefits, unless I need to increase more. Or it could be that the reason for my worsening has nothing to do with pregabalin. But then I have no idea what's going on. I spoke with many doctors. No one has an idea why this is happening. I'm pretty desperate.

      PS for your tinnitus, there are people who experienced complete remission more than one year after tapering pregabalin. I hope you will be one of those.
       
    12. AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      Yes, some indeed have. It's similar to those experiencing tinnitus from benzo PAWS, for some it disappears.

      I'd have my old life back... if it did happen, oh my god, I wouldn't forget about those suffering. For I would have my own selfish fear of it coming back, so I'd fight tooth and nail to try and get funds donated and crowdfunding tinnitus projects.

      Anyways, my tip is to get some benzos for a few days to help with the really bad paranoia.. then maybe switch off to a GABA-b agonist like baclofen for a few days and then again back to benzos (if possible, a few days break in between each switch.. this depends how long your taper with pregabalin will last). Kratom one day helped me too.
       
    13. Bill Arsenault

      Bill Arsenault Member

      Location:
      Boston.
      Tinnitus Since:
      Permanent and severe since 2017
      Cause of Tinnitus:
      Black Sabbath.
      Hi. My tinnitus started out barely noticeable
      for no apparent reason other than possibly medication , getting older and accumulated damage over my lifetime.
      Anyway, my symptoms get slightly worse about every week or so without fail.
      So just to let you know your not alone.
      I also get frustrated to find that it should be leveling out with ear protection and lifestyle changes- but that’s not the case for me.
      If It was than tinnitus would be no problem- because I have habituated
      many,many times only to have it get worse.
      Although it continues to get rapidly worse I have never completed returned to those dark days of fear and depression that I had at the beginning even though it was very mild then in comparison to now.
      With the support and knowledge I now have I am somehow able to deal with it to some degree- but if it would just stop getting worse I would be thrilled.
      Anyway- like I said - your not alone and what your experiencing is not uncommon or a sign that something else is going on.
      Take care.
       
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    14. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Hi Bill, thank you for your post. I saw it only now because I didn't get a notification.
      I'm in a very dark place.
      I'm at my 16th month and it keeps worsening, now it is an electric hiss from hell with a ringy quality I hear everywhere, nothing masks it. It is almost painful and for me it is impossible to read or concentrate. This horrible worsening took place over 16 months. I still have no clue what could be causing this and neither do the many doctors I consulted. I can't stand it anymore but it keeps worsening.
       
      • Hug Hug x 2
    15. Hotspur2931

      Hotspur2931 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Cold/flu
      Mine definitely got worse from the beginning until now. These days I can't tell if it's getting worse or not. I definitely worry that it is. Anyway I'm convinced that it's extremely common and normal for it to get worse at the beginning because you're focusing on it more and more. It's like you're learning to hear it.

      At the beginning I could easily cover it up with other sounds, but then my brain learned to pick it out over all sorts of other noises. Things started to stabilise for me once I learned to stop checking on it and obssessing. This is very important.
       
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    16. FGG

      FGG Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      @Chinmoku

      Disclaimer: I'm not an MD but I do have a medical background and have read obsessively about the auditory system since my own problems started.

      My two cents: it seems this might have something to do with the fact that pregabalin specifically is a GABA analogue drug. I think @AVIYT alluded to this a bit.

      Anything that upsets the GABA/Glutamate ratio can affect tinnitus.

      If you haven't seen it, this link has a nice schematic showing how exactly glutamate works in the cochlear nerves.

      https://researchfeatures.com/2018/05/01/unravelling-cochlea-understand-hearing-loss/

      It turns out, though, that too much or (less commonly) too little glutamate can cause hearing issues. This is one reason chronic benzo use (and especially improper withdrawal) can wreck havoc on the auditory system, the receptors can get desensitized over time (hence "tolerance") and the body suddenly as the physiological equivalent of excess glutamate again.

      The research indicates that these imbalances damage through neuro-excitation. The good news is that this balance can be eventually be restored though it sometimes takes years in extreme cases (after chronic benzo use or withdrawal, for instance).

      The bad news is neuro-excitation is one mechanism synapses are structurally damaged. When a successful synaptopathy drug comes out (e.g.. Intratympanic BDNF, Pipe-505 etc), I have no doubt this should address that, too, though.

      You mentioned hearing loss above 8000 Hz, you may be a good candidate for FX-322, too. They mentioned at their last Q and A that they suspect the synaptopathy at the site of new hair cell growth will be improved because of the new synapses that attach to the new hair cells.

      Either way, hang in there. There are therapies that will help many of us soon and with time, some of your glutamate imbalance can correct in the meantime.
       
      • Hug Hug x 2
      • Informative Informative x 2
    17. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      FGG, would that restoration also apply to neuro-excitation due to acoustic trauma?
       
    18. FGG

      FGG Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Interesting question. I do wonder if, once there is synaptic damage, there is a bit of a perpetuated feedback loop. Repairing synaptic damage is a big part of this picture imo.

      This could be why tinnitus resolves for some (without permanent synaptic damage) vs others.
       
    19. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      I was reading your post and got a fleeting spike in my left ear as was reading it. Took it as a sign to comment.

      Came across this reading and really think some kind of electrical stimulation can help re-set affairs. What do you think? @AVIYT @Chinmoku

      https://www.frontiersin.org/articles/10.3389/fnins.2018.00146/full

      Where can one get such non invasive treatment is the next question. Results look good.
       
      • Informative Informative x 1
    20. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      I know mate, that hiss from hell.
       
      • Agree Agree x 1
    21. FGG

      FGG Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      So basically the tinnitus reducing benefit if a cochlear implant (which is basically electrical stimulation in your cochlea) but more fleeting treatment (not fleeting benefit)? This is a super interesting approach and I agree it has potential.
       
      • Like Like x 1
    22. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      I look at it as magnetising a weak magnet. They run directional current through it and all the particles get realigned in a proper way and the magnet becomes stronger again.

      Yes like cochlear implant but there are less invasive approaches kind of like TENS unit... basically electrode placement on top of the skin of the outer ear canal or behind the ear. There is is clinic called Brai3n in Belgium that does it.

      Also, everyone, after hours searching BenzoBuddies forum I came across this little recipe. Maybe someone's up for trying it. And please report back.

      tinnitus recipe.png
       
    23. FGG

      FGG Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      In the study you cited it looks like they flushed the ear with saline and inserted an active electrode in the ear canal and then lined it up an axis with the cochlea for the placement of a passive electrode on the skin. I'm not sure a TENS machine type approach would work for this.
       
    24. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      I know. I guess the final point is passing electrical current or stimulation of some sort through the cochlear or vagus nerve. Electricity being key.
       
    25. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      It's impossible for me to stop noticing it or letting it slide on the background because it is too high pitched and loud, too intrusive. I cannot manage this level.
       
    26. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you, FGG. I appreciate your thoughts and your encouragement.
      I thought about this a lot. I can't decide what is the best guess on what is going on.
      Pregabalin withdrawal increases glutamate, we know that much. This seems to explain why staying on a low dose or even tapering does not seem to help. But why does the tinnitus worsen even when staying on a constant dose? Is the drug doing damage and I should stop it completely? If I do get to zero the tinnitus will go even worse, maybe much worse, and probably I won't be able to withstand this as I struggle now already. Alternatively, I could go up a lot, say 300mg, and see if the tinnitus goes into remission, but then I risk prolonged exposure to the drug with all the other problems on memory, cognition etc, and it's not even guaranteed to work, tinnitus could still worsen, especially if I am in tolerance. I'm in a deadly trap, but I need to pick one direction. I don't know which one. My life is ending. And finally there is the possibility that pregabalin is not really the culprit, it might be something else, there are other people whose tinnitus keeps worsening even without drugs being involved.
      I simply don't know what to think, and doctors don't help.
      Most doctors I talked to doubt pregabalin is doing damage, as they say I would have go tinnitus much earlier if it were due to pregabalin, not after six months of usage. The tinnitus started clearly with a cold, but then the role of the drug is unclear, it might have exacerbated it or it might have worsened on its own. I am in a very dark place and I don't know what to do next or how I will take care of my family. I will put my hope in the treatments coming up but I need to improve short term or I won't make it.

      I would put my hope on the drugs but these are a few years away at best. I don't have the strength to resist that much if I don't have any improvement.
       
      • Hug Hug x 1
    27. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I wish no one had ever to know this. This is the horror.
       
      • Agree Agree x 2
    28. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Interesting, I think Brai3n would have the technology and know how to implement this. I will try and get in contact with them
       
    29. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      @Chinmoku why were you prescribed pregabalin in the first place?
       
    30. Anthony Scotland

      Anthony Scotland Member

      Location:
      Canada
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unsure
      Reading this topic closely with care... does marijuana PAWS cause increase in glutamate?

      I quit three weeks ago and experienced/experiencing common withdrawal symptoms but daily my tinnitus has random quick spikes which came out of nowhere. Timing is suspect.
       

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