Whatever stops you from killing yourself. I can't delude myself to that level though.Hi everyone,
I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.
Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.
Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.
Lots of people here hope for cures and significant research advancements including myself. People want the torment to end. No one wants to die but if the alternative is suffering with a severe and extreme case of tinnitus and related conditions, then some people would rather not endure this/that. I don't blame people for feeling that and it's a reality. It shouldn't be ignored or treated as simply a psychological and mental health issue.Whatever stops you from killing yourself. I can't delude myself to that level though.
You have a point but maybe you were trying to reply to someone else? Bit confused as to the relevancy. I'm all for a cure, but it just realistically doesn't look like it's a possibility until at least 2030. Even if something is found tomorrow it will take years of trials and testing. Add to it that it's a brain issue and we don't know fuck all about the brain, I can't lie to myself and hope for a cure soon.Lots of people here hope for cures and significant research advancements including myself. People want the torment to end. No one wants to die but if the alternative is suffering with a severe and extreme case of tinnitus and related conditions, then some people would rather not endure this/that. I don't blame people for feeling that and it's a reality. It shouldn't be ignored or treated as simply a psychological and mental health issue.
Tinnitus organizations and governments should diligently work in tandem towards a real treatment that becomes as close to a cure as possible. People are suffering because of this condition.
I was starting to worry I had not seen you for a while Daniel. Peace and loveHanging in.
Grieving about Allan. His kids, wife, family.
Sorry I haven't been writing much. Thank you for your shout out.
@Labyrinthine, I am wishing you well my friend.
Respectfully, I disagree. I looked at your profile and your cause is noise induced, right?You have a point but maybe you were trying to reply to someone else? Bit confused as to the relevancy. I'm all for a cure, but it just realistically doesn't look like it's a possibility until at least 2030. Even if something is found tomorrow it will take years of trials and testing. Add to it that it's a brain issue and we don't know fuck all about the brain, I can't lie to myself and hope for a cure soon.
I so hope you are right about the timeline. Is 2-5 years for it to appear on the market? Just hope this stuff works for those with drug induced tinnitus. Knowing my luck, it won't.Respectfully, I disagree. I looked at your profile and your cause is noise induced, right?
Noise induced causes cochlear damage to the synapses and sometimes inner and outer hair cells (outer hair cell death shows up on an audiogram but sometimes you need an extended one up to 16000 Hz the other structures have a normal audiogram).
Frequency has a drug that regenerates OHC and IHC and is already in phase 2. While true that it doesn't yet penetrate to the lower frequencies, they have said they should be able to get to over 3500 Hz when their full phase 2 dosing is used. That's in a lot of people's tinnitus range. They also appear to be working on the penetrance issue. At JP Morgan, they have said the FDA considers their drug on the same level as a "life or death drug." Those drugs can even skip phase 3. It also means the FDA would consider *any* cochlear regeneration drug on that level.
There are now 3 drugs in clinical trial for synaptopathy: PIPE-505, OTO-413 and HPN-07 and tons more in pre clinical. Pipeline even patented their drug specifically for tinnitus.
Tinnitus is not "stuck in the brain." The inflammation in the brain is because of the abnormal input from the cochlea.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581239/
Pay attention to this part, in particular. Producing inflammation *directly* in the auditory cortex with a direct pro inflammatory mediator produces a milder tinnitus because it is the subcortical ("below brain cortex" injury that matters for tinnitus):
"The profound neuroinflammatory responses in the subcortical auditory pathway suggest that they may play an important role in noise-induced tinnitus and other pathologies. This is consistent with observations of putative neural correlates of tinnitus in those areas [74, 75]. Therefore, it is possible that the tinnitus induced by cortical TNF-α infusion (Fig 4) was weaker than that induced by noise exposure (Fig 3C) because of the lack of subcortical involvement."
Look, mirror therapy wouldn't work for phantom limb pain if neuroplasticity got "stuck" in a bad direction.
Your timeline also appears very wrong. Especially with the FDAs "life or death" designation. 2-5 years tops.
There are two general kinds of drug induced from what I can tell:I so hope you are right about the timeline. Is 2-5 years for it to appear on the market? Just hope this stuff works for those with drug induced tinnitus. Knowing my luck, it won't.
Man I just don't know what to say to you. In 5 years time when nothing is here you will remember me. It was only 3 years ago when I started browsing this forum and people were talking about a cure around the corner. If you look around the internet you will see threads from 10-15 years ago talking about a cure coming soon. The fact that you used the infamous "5 years" shows that you have been manipulated. Every cure is 5 years away.Respectfully, I disagree. I looked at your profile and your cause is noise induced, right?
Noise induced causes cochlear damage to the synapses and sometimes inner and outer hair cells (outer hair cell death shows up on an audiogram but sometimes you need an extended one up to 16000 Hz the other structures have a normal audiogram).
Frequency has a drug that regenerates OHC and IHC and is already in phase 2. While true that it doesn't yet penetrate to the lower frequencies, they have said they should be able to get to over 3500 Hz when their full phase 2 dosing is used. That's in a lot of people's tinnitus range. They also appear to be working on the penetrance issue. At JP Morgan, they have said the FDA considers their drug on the same level as a "life or death drug." Those drugs can even skip phase 3. It also means the FDA would consider *any* cochlear regeneration drug on that level.
There are now 3 drugs in clinical trial for synaptopathy: PIPE-505, OTO-413 and HPN-07 and tons more in pre clinical. Pipeline even patented their drug specifically for tinnitus.
Tinnitus is not "stuck in the brain." The inflammation in the brain is because of the abnormal input from the cochlea.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581239/
Pay attention to this part, in particular. Producing inflammation *directly* in the auditory cortex with a direct pro inflammatory mediator produces a milder tinnitus because it is the subcortical ("below brain cortex" injury that matters for tinnitus):
"The profound neuroinflammatory responses in the subcortical auditory pathway suggest that they may play an important role in noise-induced tinnitus and other pathologies. This is consistent with observations of putative neural correlates of tinnitus in those areas [74, 75]. Therefore, it is possible that the tinnitus induced by cortical TNF-α infusion (Fig 4) was weaker than that induced by noise exposure (Fig 3C) because of the lack of subcortical involvement."
Look, mirror therapy wouldn't work for phantom limb pain if neuroplasticity got "stuck" in a bad direction.
Your timeline also appears very wrong. Especially with the FDAs "life or death" designation. 2-5 years tops.
By this logic, cures for anything never happen because they haven't happened before. But sometimes there *are* truly biotech market disruptors. Regenerative medicine was non existent until recently. We are *finally* treating the underlying cause.Man I just don't know what to say to you. In 5 years time when nothing is here you will remember me. It was only 3 years ago when I started browsing this forum and people were talking about a cure around the corner. If you look around the internet you will see threads from 10-15 years ago talking about a cure coming soon. The fact that you used the infamous "5 years" shows that you have been manipulated. Every cure is 5 years away.
If they haven't cured or even treated male pattern baldness (propecia is not safe and doesn't prevent balding or give hair back, just slows it down); which if discovered will make whomever more rich than any cure for deafness and tinnitus x 10000 and adding to the fact that balding is a much more of a simple issue then tinnitus.
What fucking chance is there?
There will be a cure for balding before tinnitus. There will be a cure for cancer before balding. When both of these are cured or managed with a high success rate, then we can talk about tinnitus.
So will Frequency Therapeutics help in my case, i.e. is it a synaptopathy drug? And presumably coming off of Prozac will help rebalance my neurotransmitters, or would it make things even worse? And what do you consider appropriate withdrawal in relation to Prozac?There are two general kinds of drug induced from what I can tell:
Ototoxins like antibiotics or chemotherapeutic agents which directly destroy structures like IHC, OHC, stria vascularis and synapses. Of these, I'm most worried about Cisplatin and Carboplatin because the retained platinum molecules in the cochlea (retained for years if not indefinitely) are anti mitotic (which is why they are used for cancer in the first place). This might have some implications for FX-322. I have this kind (from macrolide antibiotics) and it has its own challenges.
The second type are drugs which mess with your GABA/Glutamate balance. You actually need glutamate to transmit at the synapses but too much is toxic to them. The synapses are harmed via neuroexcitation and oxidative stress. This is not special, thankfully, all damage ultimately occurs this way.
So the problem seems two fold; one is the synaptic damage (synaptopathy drugs should address this) and the other is a neurotransmitter imbalance. That imbalance can be corrected and receptors normalized but, in some cases, it can take years (after benzo tolerance or inappropriate withdrawal for instance). I think for this kind of ototoxicity both things need to happen: synapse repair (coming soon!) and neurochemical rebalance. This is just my opinion, but I can't find an alternate hypothesis on this that makes sense or fits the research.
I concur with FGG; I have my hopes set on regenerative medicine as well. I do believe that hyperacusis & tinnitus in many cases originates in the inner ear, and our brains - being the highly plastic organ that it is - attempts to adjust in a maladaptive fashion, which ultimately leads to, well... bullshit, to say the least. The point I'm trying to make, though, is that perhaps our brains can revert back to old settings once that damage in the inner ear has been fixed through regenerative medicine. Optimistic much? Yep, but I don't have a choice, because my abysmal situation depends on medical advances.
I'd like to remain hopeful despite the fact I've hardly seen the sun in the last 6 months.
How have you been?
@FGG didn't pull that out of nowhere. That is how long regenerative medicine in its various forms will take to reach market. It has nothing to do with the 5 years meme - it is literally based on trial completion data.The fact that you used the infamous "5 years" shows that you have been manipulated. Every cure is 5 years away.
Yup, I remember joining in 2016 but stuff like AM-101 was the big thing and Frequency Therapeutics was basically a fetus compared to now. Hearing regeneration still felt like more of an abstract thing compared to now when we have a number of companies in clinical trials and several others in pre-clinical development (I think Action on Hearing Loss compiled a spreadsheet of the companies currently working on this and it's 42 iirc)!@FGG didn't pull that out of nowhere. That is how long regenerative medicine in its various forms will take to reach market. It has nothing to do with the 5 years meme - it is literally based on trial completion data.
I joined this forum recently but have been browsing since three years ago as well, and I wasn't seeing anywhere near the same amount of development then as I am today. All we had then was Frequency Therapeutics in its infancy and some first pass data from Susan Shore. As well as some passing sound bites from Lenire.
There are a lot more players in the game now, and most are targeting the source of cochlear damage, which has never been done before.
The acceleration is even more radical than that. I've been mostly passive for 6 months (because I've been waiting for, then using, my Lenire device), and within this half a year Frequency Therapeutics went from a vague hope to almost confirmed, and this thread mentions two new synaptopathy drugs that I haven't even heard of.@FGG didn't pull that out of nowhere. That is how long regenerative medicine in its various forms will take to reach market. It has nothing to do with the 5 years meme - it is literally based on trial completion data.
I joined this forum recently but have been browsing since three years ago as well, and I wasn't seeing anywhere near the same amount of development then as I am today. All we had then was Frequency Therapeutics in its infancy and some first pass data from Susan Shore. As well as some passing sound bites from Lenire.
There are a lot more players in the game now, and most are targeting the source of cochlear damage, which has never been done before.
Optimistic, and I sincerely hope you are right.Cures and treatments are coming.
Frequency is not a synaptopathy drug. It seems to only help synaptopathy if you also have hair cell damage at the affected locations. Many people do have at least some hair cell damage. For those that don't: PIPE-505, OTO-413, HPN-07 are the drugs to watch. They are all in the clinical trials stage. There are a number in pre-clinical, too.So will Frequency Therapeutics help in my case, i.e. is it a synaptopathy drug? And presumably coming off of Prozac will help rebalance my neurotransmitters, or would it make things even worse? And what do you consider appropriate withdrawal in relation to Prozac?
Veterinarian. Well, I was one for 15 years. Haven't been able to practice for a year now due to the struggles everyone here knows all too well.Are you a veterinarian, or a pet psychiatrist?
If someone needs a comfort pet, what happens when the pet needs comfort pet as well? Lol
Optimistic, and I sincerely hope you are right.
But we just cannot know.
In 200,000 years of human habitation, nobody has devised any effective treatment; unless you happen to swallow any of the publicity surrounding recent gadgets and gizmos.
Personally - I don't.
Is HPN-07 the Hough Pill or the drug which is 10 years off?Frequency is not a synaptopathy drug. It seems to only help synaptopathy if you also have hair cell damage at the affected locations. Many people do have at least some hair cell damage. For those that don't: PIPE-505, OTO-413, HPN-07 are the drugs to watch. They are all in the clinical trials stage. There are a number in pre-clinical, too.
Prozac withdrawal can definitely make it worse if not done appropriately. I would not do it without the help of someone very experienced with this (e.g... a very knowledgeable psychiatrist). In dogs, I used to withdrawal Prozac slowly over a few months but I cannot say if that's the right time frame for people.
I truly hope you are right 'Hoot.'Hi Jazzer,
Out of curiosity have you looked into the science surrounding regenerative medicine? It's incredibly robust. If you haven't I truly recommend even just browsing the threads a bit. We are very close. This isn't blind hope that's driving us now, but hard science.
Think of it this way: there are only so many structures in the cochlea that relate to tinnitus/hyperacusis. All are being addressed or repaired in way or another. We know brain plasticity works both ways, otherwise bimodal stimulation would have a 0% success rate. @FGG has already covered numerous other examples not related to the inner ear, such as mirror therapy for phantom pain.
The only "hurdle" I foresee is getting the full cocktail of drugs, but I don't even really consider that a hurdle - more of an inconvenience. But if I need 4 injections to repair my cochlea instead of just 1 then I'm all for it.
I truly hope you are right 'Hoot.'
I've always considered myself a realist.
My lovely wife who is as optimistic as they come, considers me the classic pessimist.
(Fortunately she still loves me.)
I would love to see a breakthrough - however constant perusal of research news feels too much like cliff hanging to me.
I suppose my childhood, to a mentally ill mother, taught me to look reality in the face, and accept it for what it was, in order to survive.
Are you aware of - 'the Stockdale Paradox?'
HPN-07 is the Hough pill. You can tell if you have OHC damage by your audiogram. If your extended audiogram (over 8000 Hz included) is normal, you don't have outer hair cell damage. You could still have IHC damage though and might still be helped. There is no diagnostic test atm to say for sure, apart from OHC being reflected in current testing.Is HPN-07 the Hough Pill or the drug which is 10 years off?
Tell me again, how do I know if I have hair cell damage or not?
Only now do I realise I should have studied sciences
Giving Prozac to a dog just seems wrong, which makes it even worse that we give it to humans. I tapered off over 6 months last time, really I should have taken a few years and had coping strategies in place for when it was completely out of my system.
I need to find somebody who can give me an extended audiogram. Not that easy where I am.HPN-07 is the Hough pill. You can tell if you have OHC damage by your audiogram. If your extended audiogram (over 8000 Hz included) is normal, you don't have outer hair cell damage. You could still have IHC damage though and might still be helped. There is no diagnostic test atm to say for sure, apart from OHC being reflected in current testing.
I only ever used Prozac for severe separation anxiety and only after training and desensitizing therapy first. Some of these dogs were breaking their teeth and ripping nails out trying to escape to their owner when they would leave. They were in severe distress. I never had any that had to be on it indefinitely, though.