Member- Aug 21, 2014
- 5,051
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
Hi,
I have a lot of posts on this board in years past. Like a lot. A lot!
I largely stopped posting in 2019 after starting the "Shulman protocol" (Gabapentin + Clonazepam), but I do not really believe that these drugs were useful or effective for me; if anything, they were a band-aid that gave me a little breathing space. See my last post here for an update on that subject.
My specific tinnitus history is not that interesting or unique, and anyone who cares can dig through my 11,000 or whatever posts and see everything I had to say in the past, so I am not going to rehash much of that.
Instead, I want to explain how my different physical and emotional problems connect and how I am responding to them in 2025.
Caveat:
I strongly believe that in my own case, the mind-body / hypervigilance loop is what drives almost all of my tinnitus distress, and also that simple tinnitus, meaning "a high-pitched sound in my head that is always there" is not really a very serious problem, nor do I spend much time thinking about it anymore. I am not here to convince you that this is the case for anyone else, and I am not interested in arguing about what is or is not "success." For me, if I can go days or weeks without really consciously noticing my tinnitus or my other health issues, be present with my family and my life, and explore hobbies I enjoy with my full attention, that is success. If you want to hold yourself to a different or higher bar or insist on seeing "success" as "the complete cessation of all unwanted sensory experiences," good luck! I am not here to dissuade you, and I am doubtful to respond to any thoughts in that direction because I do not think they are useful thoughts for me to entertain.
Prior to having severe tinnitus, I had been diagnosed with "chronic pelvic pain syndrome," "hyoid syndrome," and "TMJ," which are, as far as I can tell, for me personally, the same problem occurring in different parts of my body. I hold tension in my muscles; I develop trigger points; the trigger points cause referred pain and other unpleasant symptoms. That is the physical side. Mentally, my brain is hypervigilant, just by nature, of who I am, and so when something seems "wrong" in my body, I subconsciously fixate and pay attention to it. This attention cycle causes my limbic (fight or flight) system to be in overdrive. I become convinced there is something terribly threatening about the problem I have, and then my threat detection goes into overdrive. In the case of my neuromuscular problems, this literally makes the pain worse because it causes "guarding." When muscles are injured or in pain, my body will reflexively tense up the muscles around them to protect them. This is directly counterproductive because I am not dealing with a traumatic injury; I am dealing with the result of emotional trauma processing. I hold tension in my body until my whole body feels like a misfiring circuit board.
Tinnitus is only different from these other things because there is a physical driver to it that I cannot control: I have some degree of high-frequency hearing loss, and my brain has maladapted to that by cranking up the volume in a brain region called the Dorsal Cochlear Nucleus, rewiring touch-sensing neurons into the auditory processing systems to make up for lost signal input. This physiological model of tinnitus is, at this point, well supported by the research of Susan Shore and others, and as far as I know, there are experimental treatments in the pipeline. (I was a lab rat for Dr. Shore's device, which I did think worked at the time in 2016, but I have not kept up over the last few years, so I do not know when or if it is going to be commercially available.)
So, because there is an actual physical defect causing my tinnitus, it does not ever "completely go away" in the same way that my purely neuromuscular problems can. And, despite still being on Klonopin, I think my tinnitus is probably as loud as it has ever been. I just do not think about it much at all. Sometimes, I notice it throughout the day, and in the same way, I might notice any number of old aches and pains. However, just like all these other problems, the attention or hypervigilance circuit can directly make the perceptual experience of the sound more noticeable. It can become painful to the point of intolerance. And, like all my other problems, once that loop is broken, then the sound or feelings, etc, melt into the background of all the billions of neuronal events happening through my body at all times.
Stuff that has helped me regain a full and rich life:
Stuff that has been directly unhelpful:
I am here to play the cards I have got to the best of my ability.
Current status of my tinnitus:
It is there, and it may be as loud as it has ever been. Maybe it has gotten louder or changed tones over the last 15 years. I really do not know, because I simply do not pay that much attention to it.
Good luck to everyone thus afflicted and suffering; may you find the peace you deserve.
I will try to remember to come back and check on this thread at some point, but, I really do not log in here very much at all so it may be a while.
@cullenbohannon, I hope you are doing well; I would love to get back in touch and find out what you are into these days.
@Telis, I hope you eventually found peace and calm, I know you were having a really rough go of things for a long time.
@Markku and all the other admins, thank you for creating and maintaining this space. Even if being too omnipresent here was ultimately detrimental to my own recovery process, there is a time and a place for everything, and not feeling alone in all of this is an extremely potent treatment.
@Bill Bauer, I hope you are doing well and enjoying your life. We often did not see eye to eye on stuff, but I always enjoyed your thoughtful and spirited rebuttals, and finding ways to accept and understand your viewpoints was super helpful to me in terms of opening my eyes to how different humans can be while still caring for each others' happiness and best interests
There are many other people I should probably be calling out and am forgetting. Whoever you are, if you are reading this, I love you, and I want you to have the best life you can.
Best wishes for peace and prosperity! You got this!
I have a lot of posts on this board in years past. Like a lot. A lot!
I largely stopped posting in 2019 after starting the "Shulman protocol" (Gabapentin + Clonazepam), but I do not really believe that these drugs were useful or effective for me; if anything, they were a band-aid that gave me a little breathing space. See my last post here for an update on that subject.
My specific tinnitus history is not that interesting or unique, and anyone who cares can dig through my 11,000 or whatever posts and see everything I had to say in the past, so I am not going to rehash much of that.
Instead, I want to explain how my different physical and emotional problems connect and how I am responding to them in 2025.
Caveat:
I strongly believe that in my own case, the mind-body / hypervigilance loop is what drives almost all of my tinnitus distress, and also that simple tinnitus, meaning "a high-pitched sound in my head that is always there" is not really a very serious problem, nor do I spend much time thinking about it anymore. I am not here to convince you that this is the case for anyone else, and I am not interested in arguing about what is or is not "success." For me, if I can go days or weeks without really consciously noticing my tinnitus or my other health issues, be present with my family and my life, and explore hobbies I enjoy with my full attention, that is success. If you want to hold yourself to a different or higher bar or insist on seeing "success" as "the complete cessation of all unwanted sensory experiences," good luck! I am not here to dissuade you, and I am doubtful to respond to any thoughts in that direction because I do not think they are useful thoughts for me to entertain.
Prior to having severe tinnitus, I had been diagnosed with "chronic pelvic pain syndrome," "hyoid syndrome," and "TMJ," which are, as far as I can tell, for me personally, the same problem occurring in different parts of my body. I hold tension in my muscles; I develop trigger points; the trigger points cause referred pain and other unpleasant symptoms. That is the physical side. Mentally, my brain is hypervigilant, just by nature, of who I am, and so when something seems "wrong" in my body, I subconsciously fixate and pay attention to it. This attention cycle causes my limbic (fight or flight) system to be in overdrive. I become convinced there is something terribly threatening about the problem I have, and then my threat detection goes into overdrive. In the case of my neuromuscular problems, this literally makes the pain worse because it causes "guarding." When muscles are injured or in pain, my body will reflexively tense up the muscles around them to protect them. This is directly counterproductive because I am not dealing with a traumatic injury; I am dealing with the result of emotional trauma processing. I hold tension in my body until my whole body feels like a misfiring circuit board.
Tinnitus is only different from these other things because there is a physical driver to it that I cannot control: I have some degree of high-frequency hearing loss, and my brain has maladapted to that by cranking up the volume in a brain region called the Dorsal Cochlear Nucleus, rewiring touch-sensing neurons into the auditory processing systems to make up for lost signal input. This physiological model of tinnitus is, at this point, well supported by the research of Susan Shore and others, and as far as I know, there are experimental treatments in the pipeline. (I was a lab rat for Dr. Shore's device, which I did think worked at the time in 2016, but I have not kept up over the last few years, so I do not know when or if it is going to be commercially available.)
So, because there is an actual physical defect causing my tinnitus, it does not ever "completely go away" in the same way that my purely neuromuscular problems can. And, despite still being on Klonopin, I think my tinnitus is probably as loud as it has ever been. I just do not think about it much at all. Sometimes, I notice it throughout the day, and in the same way, I might notice any number of old aches and pains. However, just like all these other problems, the attention or hypervigilance circuit can directly make the perceptual experience of the sound more noticeable. It can become painful to the point of intolerance. And, like all my other problems, once that loop is broken, then the sound or feelings, etc, melt into the background of all the billions of neuronal events happening through my body at all times.
Stuff that has helped me regain a full and rich life:
- Acceptance (I choose to come at this from a fairly Buddhist perspective; "Samsara", the world or realm we exist in, is implicitly unsatisfactory. Obsession with the unsatisfactory nature of these things creates "duhkka," or put more simply, suffering.)
- Long-term mindfulness meditation.
- Daily yoga.
- Regular exercise.
- Good diet including anti-inflammatory foods and probiotics (I start every day with a shot glass full of fresh juiced turmeric and ginger, and a Kefir drink I make by making my own milk Kefir and then blending in some combination of fruit or maple syrup or whatever I am feeling at the moment).
- Prioritizing the needs of those I love and care for over my own immediate wants and desires.
- Actively focusing on hobbies and other external behaviors and things even if it was almost impossible to do so and even if I seemed to derive no pleasure or satisfaction from them at the time.
- Reminding the people in my life that I love and value, that I love and value them.
- Using hearing protection in loud places.
- Not being afraid to enter loud places or use loud machines or musical instruments, given proper hearing protection.
- Being as physically active as I am able, which means extremely regular cardio exercise (during this time of year, I ski as much and as often as I can get away with. The rest of the year, I take walks in nature or even just up and down my road.)
- Maintaining good sleep hygiene. This does not mean sleeping well every night; that is not possible for me, but when I cannot sleep, I simply rest and do not worry about the fact I am not sleeping.
Stuff that has been directly unhelpful:
- Obsessing over tinnitus or any of my other physical problems to the point of endlessly googling them, wondering about them, talking about them to anyone who will listen, and writing pages and pages of theory-crafting.
- Trying a billion different supplements and drugs.
- Seeing a billion different specialists.
I am here to play the cards I have got to the best of my ability.
Current status of my tinnitus:
It is there, and it may be as loud as it has ever been. Maybe it has gotten louder or changed tones over the last 15 years. I really do not know, because I simply do not pay that much attention to it.
Good luck to everyone thus afflicted and suffering; may you find the peace you deserve.
I will try to remember to come back and check on this thread at some point, but, I really do not log in here very much at all so it may be a while.
@cullenbohannon, I hope you are doing well; I would love to get back in touch and find out what you are into these days.
@Telis, I hope you eventually found peace and calm, I know you were having a really rough go of things for a long time.
@Markku and all the other admins, thank you for creating and maintaining this space. Even if being too omnipresent here was ultimately detrimental to my own recovery process, there is a time and a place for everything, and not feeling alone in all of this is an extremely potent treatment.
@Bill Bauer, I hope you are doing well and enjoying your life. We often did not see eye to eye on stuff, but I always enjoyed your thoughtful and spirited rebuttals, and finding ways to accept and understand your viewpoints was super helpful to me in terms of opening my eyes to how different humans can be while still caring for each others' happiness and best interests
There are many other people I should probably be calling out and am forgetting. Whoever you are, if you are reading this, I love you, and I want you to have the best life you can.
Best wishes for peace and prosperity! You got this!
