How Possible Is It for Nerve Fibers and Synapses in the Inner Ear to Regenerate from Synaptopathy?

Discussion in 'Support' started by leftearguy, Jul 19, 2020.

    1. leftearguy

      leftearguy Member

      Tinnitus Since:
      04/10/20
      Cause of Tinnitus:
      Weed, Hidden Hearing Loss
      Almost two months ago I was exposed to a loud and powerful sound from very up close. Since then my hearing has changed drastically. The quality of audio in both ears has taken a severe drop. People speaking is hard for me to understand way too often, Music sounds much flatter, it's hard for me to detect and comprehend when there's several ambient sounds around me. Those are the main symptoms that I can list but it's really just a 24/7 feeling of everything around me sounding like it's coming out of a speaker. It sucks. I've had DPDR (depersonalization/derealization disorder) for almost a year now but since this happened it's been worsened to a level that I just can't handle. My mind has been completely empty since the loud noise. I'm on autopilot all the time except for fleeting moments where I can feel my conscious mind trying to break out.

      I guess that's besides the point. I just don't understand how I feel so severely dissociated after the loud noise. It must have really messed up my ears and maybe even my auditory processing. I've considered doing HBOT to see if it would help me. My parents are pushing back on it though because of the price, but I think insurance may cover much of it.

      Hyperbaric Oxygen Treatment Ameliorates Hearing Loss and Auditory Cortex Injury in Noise Exposed Mice by Repressing Local Ceramide Accumulation

      This study seems to show that it could help ABR results that would have to do with Synaptopathy. I got an ABR less than a week after this happened and the doctor said it was normal but I haven't seen it for myself so I'm curious as to what it would show. Would anyone have an idea about whether HBOT would be worth getting at the two month or slightly more mark?

      I'm wondering if it's at all possible for there to be any way to regenerate these nerve fibers and synapses besides HBOT or a drug like PIPE-505. This experiment says that NT3 injected into the ears can regenerate them and improve ABR results. Could you in theory try to increase NT3 and BDNF production in your brain into your ears to regrow to the nerves and then reconnect them to the inner hair cells with synapses? I'm thinking about stuff like exercise, low carb diets, intermittent fasting, supplements like Astaxanthin. I've been doing my best to listen in onto people talking and such to see if it'll repair my hearing slowly over time.

      I don't know if what I just typed out made any sense. I'm having a hard time articulating my ideas here. But I hope that someone gets my point and can offer advice. I just really hope that my hearing can regenerate, but I'm worried that I'll probably have to live with this deficit.

      If I need to make anything more clear please ask.
       
    2. AUTHOR
      AUTHOR
      leftearguy

      leftearguy Member

      Tinnitus Since:
      04/10/20
      Cause of Tinnitus:
      Weed, Hidden Hearing Loss
    3. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      OTO-413 is a sustained release BDNF currently in clinical trials for cochlear synaptopathy. Results should be out by the end of this year.
       
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    4. AUTHOR
      AUTHOR
      leftearguy

      leftearguy Member

      Tinnitus Since:
      04/10/20
      Cause of Tinnitus:
      Weed, Hidden Hearing Loss
      I guess I'm asking if it's possible for synaptoptathy to heal on its own, or if it's likely to stay the same or even get worse over time. It's so upsetting because my cognition has dropped off a cliff as soon as the noise happened. I can only blame it on my brain taking in less sound and that's terrifying. I desperately need some kind of solution to this but I guess I may have to just live with it. I'm sort of interested in trying HBOT but like I said I don't know if my parents are gonna be very supportive with it. I really wish I was able to get it much earlier, I don't know if it's too late or what.

      I'm also on Lamotrigine/Lamictal, only 25 mg so far. I'm probably going to keep taking it and up the dose as I go along. I'll possibly add an SSRI to it once I'm at a higher dose, I'll have to talk to my psychiatrist about it soon. I'm not enthusiastic about taking these but I'm open to trying them I guess. I'm slightly worried about they may affect my hearing and it's recovery.

      I still have mild tinnitus in my left ear but the thing is I can't really detect it like I used to be able to, it's weird. It just blends in with other sounds when I'm not in a quiet room. It sounds like a good thing but it isn't really. It's just a side affect of all sounds mushing together.

      I'm just so worried because the difference in how my brain feels is so drastic, it shocks me. I can specifically remember how I felt three months ago and even though I had DPDR, I still had somewhat of a consciousness about what was going on. I had a place in my mind where it could rest, and I could piece together different objects and events into a whole picture. Now I can barely comprehend what I'm writing right now. I've been at the crisis stabilization unit in my area for a week now and I can't remember anything that's happened while I've been here. I can't even remember anything from the last two months. I can hardly have conversations with people because I'm practically slurring and I can't understand what they're saying a shockingly huge percentage of the time. When I look at people's faces I get no emotion or thoughts from them like I would before. Even when I'm talking to a therapist one on one I have to use all of my brain power to listen to them because their voice just sounds like static. I had hope of dealing with my DPDR before but now I feel like that's all gone because my cognition is too low to even sense my symptoms or figure out how to help myself. I can't believe the loud noise has affected me so much and I'm scared that this is my new baseline.
       
    5. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      I have been suggested Lamictal as well. Are you taking it for tinnitus or other reasons?
      I am not sure why my neurologist is suggesting it, the only study I found for tinnitus is not encouraging.
      https://pubmed.ncbi.nlm.nih.gov/10503585/
      My tinnitus is debilitating so I'm willing to try anything at this point.

      For BDNF, there are supplements that boost it
      • Nootropics to Boost BDNF
        • Ashwagandha
        • Bacopa monnieri
        • DHA (Omega-3)
        • Ginseng
        • Gotu Kola
        • L-Theanine
        • Magnesium
        • N-Acetyl L-Cysteine (NAC)
        • Noopept
        • Rhodiola Rosea
        • Pterostilbene
        • Resveratrol
        • Turmeric
      However systemic administration may come with side effects and tinnitus reaction is not clear. OTO-413 will administer to the ear directly.

      I read a few times that nerves may heal but very slowly. This might explain the cases of a few people healing from tinnitus over years. However it does not happen always.
       
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    6. AUTHOR
      AUTHOR
      leftearguy

      leftearguy Member

      Tinnitus Since:
      04/10/20
      Cause of Tinnitus:
      Weed, Hidden Hearing Loss
      Thank you for this answer. I'm taking Lamictal to possibly help with my DPDR. I might add an SSRI soon because I've read that they can work in Synergy for things like DPDR. I know that many on this board aren't fans of SSRI's and I'm not either but it's kind of an emergency for me. The awful thing is though that it's only an emergency because ever since the loud noise I have not been able to function in my mind nearly the same as I had been just before the noise. It's so difficult to even listen to people talk and I can hardly remember anything throughout the day. I can't seem to focus on anything except my distorted and muffled hearing 24/7. I'm not nearly as social now of course and it's killing me.

      I have a bit of tinnitus but it isn't even an issue anymore because I can't detect hear it as clearly since my nerves were blown out... lol. I wonder if there's anyone who my case compares to because I've bad bits and pieces of tinnitus in the past but now I'm not as worried about it as I am my synaptopathy I guess lots of people have something like this but I'd like to see other people's stories about it. I realized that I never had gotten an Otoacoustic emissions test since this. I had gotten two before, but not after, and now it's been two months, I feel like an idiot. I suspect I may have some low frequency hearing loss and sometimes my ears hurt and then I hear a low bass-like tone in both ears. I really hope there isn't hair cell damage, I'll have to see. Maybe I'm planning to get that done as soon as I get out of this place, and take that and my ABR test to go get HBOT, even though it's so late. I don't even care anymore I feel like I just have to get it over with. Is HBOT known to treat synaptopathy? I've seen a couple studies that show that it can improve ABR results. The Doctor said mine was normal but I want to look for myself.

      Thanks for the links. I am wondering how to increase NT3 expression too because that's what most of the studies seem to say really regenerates the nerves and synapses. You have a good point though about how increasing it so much across the brain might do little for the ears. I guess there's just no guaranteed fix for this.
      I don't really have any advice for taking Lamictal one way or the other. I've only been on 25 mg for a week. Mood wise I feel better than when I came in but I feel just as mentally slow and dissociated or maybe even slightly more slow. That could be from anything but I suspect the Lamictal may have worsened my cognition a bit. It probably doesn't even matter since I've so much more Depersonalized and Derealized since the noise anyway. I'm just so amazed that that noise had such a huge impact on my brain. I think I'm gonna ask my neurologist for a sleep study to rule out sleep apnea or something. If I do have something like that I think HBOT could be good. I'm also wondering if he could refer me to something like Oto-Neurologist or a Neuro-otologist. Not that they could do too much but if I showed them some studies I wonder if they could give me advice on how to heal the nerves in my ears *any* amount even just a little bit. I suspect that my brain in general might have issues too but that's another story. I've had Visual Snow and head pressure, cognitive issues, weird motor control and sense of space and time as long as I have had DPDR.

      Do you suspect that your tinnitus is caused by nerve damage? Do you notice that your hearing is different or worse? Thanks for replying and reading my posts. Good luck to both of us. If anyone has their own experiences with Synaptopathy or ideas on how to possibly heal it then please post here.
       
    7. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      Indeed, my left ear tinnitus is so loud and high pitched that I can't understand much conversation with the left ear, I need both ears now and occasionally I need to turn my head. The thing is, I don't understand if this is because of too loud tinnitus or if my hearing is worsening and the increased tinnitus is a consequence. Pure tone audiometry has been stable but I feel the difference in my day to day life.
      There have been cases of people in benzo withdrawal whose tinnitus interfered with conversation who fully recovered once off the drug, so it might be neurotransmitter imbalance, who knows. I hope it's that.

      There is a thread here on HBOT, with mixed results, but it doesn't work very often from what I heard, some people even got worse and apparently it works mostly in the early stages, but probably worth a shot.
      But before that, how do you know you have synaptopathy? I thought diagnosis was in the dark ages and they would not be able to diagnose that.

      There is an interesting thread on NT3 but again taking the supplements at systemic level might be not effective or counterproductive,

      https://www.tinnitustalk.com/threads/neurotrophin-3-regenerates-cochlear-synapses.31752/

      Neuro-otologists I saw were all glorified otologists with a little knowledge of neurology thrown in. They mostly deal with balance problems but know very little about tinnitus. I gave up and looked rather for a neurologist who was also an expert of the ear. I went recently to one who is very good and research active but after 30 minutes of conversation it's clear that they are grasping at straws too. The science simply isn't there and they have no way to know what a drug will do to you, they reason based purely on statistics. Lamictal has only one study for tinnitus and the conclusions are that it works for very few people. The net has also anecdotes where the drug worsened tinnitus. However you are on a very low dose so I wouldn't worry about cognitive impairment, and the untreated condition would be cognitively impairing anyway so we may have to go for drugs anyway. I am still thinking whether I should try it, there are other drugs that might be more promising based on trials but also more dangerous as far as side effects go, in particular Sulpiride has a couple of studies where it worked (one in combination with melatonin, the other one with hydroxizine) but I'm grasping at straws as well. Trobalt was effective but with horrible side effects and is no longer available. While we wait for XEN496 and the subsequent potassium channel drugs, or ear regeneration drugs FX322, synaptopathy drugs OTO413 etc I need something to bring this noise down or I'm dead.

      This is the big mystery for me. My tinnitus kept worsening, it went from mild to suicide level over 22 months, started with an ear infection but might have been worsened by the drug I was on at the time. Gaba drugs are dangerous for tinnitus and they are a giant crapshoot. One possibility is that the drugs have downregulated my gaba receptors in the brain and also the gaba structures in the cochlea, making tinnitus worse and worse. I'm trying to come off but also reducing the drugs worsens tinnitus, so it's a nightmare. At the moment my noise is unbearable. I hope I can improve (I don't say heal completely but at least calm down to a level where life is liveable).
      I was impressed by an account of water fasting given by Telis, it seems like when one is fasting the body goes in hyper-repair mode and awakens stem cells. Telis was able to reduce his tinnitus to 50% apparently with fasting. I'm too ill to do it right now (I lost a ton of weight due to stress and tinnitus and I have terrible mood and I'm in survival mode) but I would like to try a few days of water fasting.

      Good luck my friend, I hope you find a way forward, it might simply be that you improve in time as nerves heal very slowly, they are among the slowest part of the body to heal.
       
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