Hi everyone,
I have had tinnitus "in" both ears for around 15 years now, it's constant, never left me, around 9 kHz with a unilateral one at around 2 kHz as well in the right ear, acting more like some morse code.
For many years I read the research papers/forums/publications.
Most research papers were focusing on finding a way to heal the ear. Because the most common hypothesis is the following: if you fix a cochlea, get the cells back and reconnect them, the phantom signal will go away. So here are all those trials for years, like Frequency Therapeutics as the most famous one.
One thing always intrigued me: everyone is waiting about this cure, about healing the hearing system, but no one is actually wondering WHY around 10% of the people have tinnitus not fading away after a concert/night in a club and why 90% will have their tinnitus fade away in 12 to 24 hours.
I have always found this weird as to me the source of the problem is this: that thing that makes you different from 90% of the people. If you find it, then you solve the problem. At this time, we know nothing about it and we all focus on a treatment to restore hair cells without even having real scientific evidence that our brain would stop the ringing afterwards. When I ask, I only get answer like "well it's logical…" which does not sound 100% convincing to me.
Of course I want to believe, of course I want this cure to work but in the meanwhile it does not stop me from searching the real cause of our problem.
So in the recent years I started investigating some other medical topics, because I had some additional problems about 3 years ago. Problems I can see on this forum, like chronic fatigue, snow/noise in the eyes, fibromyalgia, dizziness, joint pain, etc. They're all symptoms of an autoimmune condition: your immune system attacking your nerves and your blood vessels.
The most famous autoimmune conditions are known as Crohn's disease, Multiple Sclerosis, rheumatoid arthritis, etc. But autoimmune conditions are more common than you think. Some people actually have their immune system on the pro inflammatory side, because of the genetics and other things, their lymphocytes T helpers are differently proportioned. The ones with pro inflammatory roles may be more present whereas regulator T cells are outnumbered. If you have followed about COVID-19 in the past month you may have heard about this: people with this kind of profile tend to have more serious symptoms of COVID-19 because inflammatory symptoms are more severe and their immune system is harder to control, attacking the virus but also all the tissues around while at the same preventing muco tissues from cicatrizing.
After testing my blood for many things including my immune system analysis (way before COVID-19), I found out I had an issue with my Th17 cells. These cells are part of the immune system and their role is to generate cytokines. Cytokines are chemical messengers giving orders to the soldiers. Th17 are on the pro inflammatory side, it means they ask for soldiers (neutrophils among others) by generating IL17, IL23 and other cytokines. It feeds the chronic inflammatory state of your whole body while keeping the CRP (C-reactive protein) low. Most doctors today check the CRP as an inflammatory level indicator. In most infection / viral issues, that CRP raises and shows something is wrong to the doctor. When the CRP is equal to 0, most doctors tend to say "it's in your head". They don't even know about the different T cells families. And that's a big problem, because lots of people here are living with autoimmune symptoms like chronic fatigue, dizziness and other "invisible" things because of a chronic systemic inflammation and just because no one can see anything in their guts with camera or sclerosis in the brain those people are not actually treated and most of the time given some Xanax pills because "it must be the stress, a burn out or something".
Why am I telling you this? Well, because autoimmune diseases are growing A LOT year after year. More and more Crohn's disease, more and more MS, etc. and these are only the diseases that doctors are trained to diagnose. If your symptoms are not big enough, there are chances you have to try thousands of complements and vitamins on yourself, looking for a cure yourself (we've all been through this, come on).
Anyway, that pro inflammatory immune system is, I'm sure, more common than we think and I had the "chance" to detect that issue in my Th17 cells + had some other symptoms than tinnitus to show to my doctors. I won't dive into details.
My hypothesis is that tinnitus could be the cause of an autoimmune condition preventing your nerves or your blood vessels (or both) from healing, preventing the inflammatory state from decreasing, allowing the nerve (or else) to heal. I even noticed some articles on this forum about an inflammatory state in the brain we did not understand and we thought was preventing the tinnitus from fading away. Well, that state could be case consequence of pro inflammatory state caused by an autoimmune condition, like Behcet's disease for example. Lots of people actually live with Behcet's disease without knowing. Symptoms of this autoimmune condition are very different from one person to the other: snow in the eyes with possible blindness after years, tinnitus, gingivitis (if you have blood when you wash your teeth that's what you have), mouth ulcers (at least once every quarter), anal fissures which won't go away after years, genital ulcers (which are not herpes), etc. with a common symptom for everyone: chronic fatigue. Well, if all the people with these symptoms dig into their immune system, there's a high chance they'll find they have an autoimmune condition and that's what could be the cause of the ear ringing, in my opinion.
Fortunately, for a few years know, great discoveries have been made to heal or at least do something against these issues. Having Crohn's disease is not as hard as 30 years ago and COVID-19 research is bringing new treatments into play. It's all about what we call biological therapies: we make some living stuff generate antibodies against something we want to block in people's immune systems. They are more specific than immunosuppressants and they are about to become even more specific this new decade.
Therefore, it would be very interesting to find someone who had tinnitus and tried those biological meds. It's common to try several of those meds before finding one working on you (cf. Behcet's treatment) but when you find the one that heals most of your symptoms if not all, it would be very interesting to see if tinnitus is affected and how.
Also, it has been said here many times than melatonin and vitamin D are paths to explore about tinnitus because of some studies. Well, melatonin and vitamin D are Th17 cells inhibitors. They have been studied many times in Crohn's disease and most common autoimmune diseases, for decades. The point is at this time, when they are taken AFTER the condition has started, they have not got the ability to restore your health into what it was.
And to finish, autoimmune conditions work with "relapses", you have moments when it's more quiet than others. Research says it could be linked to melatonin for example, which as an anti-inflammatory has an effect by inhibiting the immune system. Melatonin is more present during the winter, therefore multiple sclerosis has less relapses during the winter (hypothesis). But what I mean here, is that our immune system react to stress and this could also explain why people have their tinnitus volume moving from day to day, depending on their melatonin levels for the past days, stress levels, etc.
I have had tinnitus "in" both ears for around 15 years now, it's constant, never left me, around 9 kHz with a unilateral one at around 2 kHz as well in the right ear, acting more like some morse code.
For many years I read the research papers/forums/publications.
Most research papers were focusing on finding a way to heal the ear. Because the most common hypothesis is the following: if you fix a cochlea, get the cells back and reconnect them, the phantom signal will go away. So here are all those trials for years, like Frequency Therapeutics as the most famous one.
One thing always intrigued me: everyone is waiting about this cure, about healing the hearing system, but no one is actually wondering WHY around 10% of the people have tinnitus not fading away after a concert/night in a club and why 90% will have their tinnitus fade away in 12 to 24 hours.
I have always found this weird as to me the source of the problem is this: that thing that makes you different from 90% of the people. If you find it, then you solve the problem. At this time, we know nothing about it and we all focus on a treatment to restore hair cells without even having real scientific evidence that our brain would stop the ringing afterwards. When I ask, I only get answer like "well it's logical…" which does not sound 100% convincing to me.
Of course I want to believe, of course I want this cure to work but in the meanwhile it does not stop me from searching the real cause of our problem.
So in the recent years I started investigating some other medical topics, because I had some additional problems about 3 years ago. Problems I can see on this forum, like chronic fatigue, snow/noise in the eyes, fibromyalgia, dizziness, joint pain, etc. They're all symptoms of an autoimmune condition: your immune system attacking your nerves and your blood vessels.
The most famous autoimmune conditions are known as Crohn's disease, Multiple Sclerosis, rheumatoid arthritis, etc. But autoimmune conditions are more common than you think. Some people actually have their immune system on the pro inflammatory side, because of the genetics and other things, their lymphocytes T helpers are differently proportioned. The ones with pro inflammatory roles may be more present whereas regulator T cells are outnumbered. If you have followed about COVID-19 in the past month you may have heard about this: people with this kind of profile tend to have more serious symptoms of COVID-19 because inflammatory symptoms are more severe and their immune system is harder to control, attacking the virus but also all the tissues around while at the same preventing muco tissues from cicatrizing.
After testing my blood for many things including my immune system analysis (way before COVID-19), I found out I had an issue with my Th17 cells. These cells are part of the immune system and their role is to generate cytokines. Cytokines are chemical messengers giving orders to the soldiers. Th17 are on the pro inflammatory side, it means they ask for soldiers (neutrophils among others) by generating IL17, IL23 and other cytokines. It feeds the chronic inflammatory state of your whole body while keeping the CRP (C-reactive protein) low. Most doctors today check the CRP as an inflammatory level indicator. In most infection / viral issues, that CRP raises and shows something is wrong to the doctor. When the CRP is equal to 0, most doctors tend to say "it's in your head". They don't even know about the different T cells families. And that's a big problem, because lots of people here are living with autoimmune symptoms like chronic fatigue, dizziness and other "invisible" things because of a chronic systemic inflammation and just because no one can see anything in their guts with camera or sclerosis in the brain those people are not actually treated and most of the time given some Xanax pills because "it must be the stress, a burn out or something".
Why am I telling you this? Well, because autoimmune diseases are growing A LOT year after year. More and more Crohn's disease, more and more MS, etc. and these are only the diseases that doctors are trained to diagnose. If your symptoms are not big enough, there are chances you have to try thousands of complements and vitamins on yourself, looking for a cure yourself (we've all been through this, come on).
Anyway, that pro inflammatory immune system is, I'm sure, more common than we think and I had the "chance" to detect that issue in my Th17 cells + had some other symptoms than tinnitus to show to my doctors. I won't dive into details.
My hypothesis is that tinnitus could be the cause of an autoimmune condition preventing your nerves or your blood vessels (or both) from healing, preventing the inflammatory state from decreasing, allowing the nerve (or else) to heal. I even noticed some articles on this forum about an inflammatory state in the brain we did not understand and we thought was preventing the tinnitus from fading away. Well, that state could be case consequence of pro inflammatory state caused by an autoimmune condition, like Behcet's disease for example. Lots of people actually live with Behcet's disease without knowing. Symptoms of this autoimmune condition are very different from one person to the other: snow in the eyes with possible blindness after years, tinnitus, gingivitis (if you have blood when you wash your teeth that's what you have), mouth ulcers (at least once every quarter), anal fissures which won't go away after years, genital ulcers (which are not herpes), etc. with a common symptom for everyone: chronic fatigue. Well, if all the people with these symptoms dig into their immune system, there's a high chance they'll find they have an autoimmune condition and that's what could be the cause of the ear ringing, in my opinion.
Fortunately, for a few years know, great discoveries have been made to heal or at least do something against these issues. Having Crohn's disease is not as hard as 30 years ago and COVID-19 research is bringing new treatments into play. It's all about what we call biological therapies: we make some living stuff generate antibodies against something we want to block in people's immune systems. They are more specific than immunosuppressants and they are about to become even more specific this new decade.
Therefore, it would be very interesting to find someone who had tinnitus and tried those biological meds. It's common to try several of those meds before finding one working on you (cf. Behcet's treatment) but when you find the one that heals most of your symptoms if not all, it would be very interesting to see if tinnitus is affected and how.
Also, it has been said here many times than melatonin and vitamin D are paths to explore about tinnitus because of some studies. Well, melatonin and vitamin D are Th17 cells inhibitors. They have been studied many times in Crohn's disease and most common autoimmune diseases, for decades. The point is at this time, when they are taken AFTER the condition has started, they have not got the ability to restore your health into what it was.
And to finish, autoimmune conditions work with "relapses", you have moments when it's more quiet than others. Research says it could be linked to melatonin for example, which as an anti-inflammatory has an effect by inhibiting the immune system. Melatonin is more present during the winter, therefore multiple sclerosis has less relapses during the winter (hypothesis). But what I mean here, is that our immune system react to stress and this could also explain why people have their tinnitus volume moving from day to day, depending on their melatonin levels for the past days, stress levels, etc.
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