- May 18, 2017
- 39
- Tinnitus Since
- 13 september 2015
- Cause of Tinnitus
- Unknown
It has been almost two years since I plunged into the dark pit of tinnitus despair. The road to recovery was a long one, but on it I found the growth that I needed in my life. In my moments of desperation I would often read success stories to help me find the belief that I could get through this. Now that I'm sure that I am, I want to share my experience with the people that find themselves on the same path.
I decided to write down my whole story seperately, for those interested, further down below. First I want to share the most important experiences, insights and lessons I've learned. Of course everyone's situation is unique and I don't have all the answers, but I hope and think that these can help you to find what you need. The first thing I want to say, is something I couldn't imagine myself ever saying for a good 1,5 year. And that is that although my tinnitus despair was so bad that I was SURE I couldn't survive with it, now, 2 years later I really don't care about it anymore. I'm rarely aware of it, and when I am, it's just a natural part of my body. This is what they call habituation, which became my holy grail after 6 months of trying about everything to find a cure. Only now that I'm there, I truely believe that it exists. I can now say that even if there was a cure, I probably wouldn't take it because I would be afraid I'd do something negative to the natural state of my body or something.
Looking back on this long and difficult period in my life, I want to tell you that no matter how hopeless you might feel, you can emerge from this a better person then before. The dark times are ok. The fear is ok. The suffering is ok. Every second onward brings you closer to where you want to go. Everytime you are able to chose to be positive in the face of adversity, be compassionate to yourself and try to move towards want in your life, will make you stronger and stronger to take on the challenges on the way. This dark pit of despair is not only negative, but also the perfect opportunity to improve every part of your life that isn't working for you. When feeling like you lost it all, the things that always stopped you from changing certain parts of your life don't hold as much power anymore. In the beginning you are so consumed with tinnitus that this is impossible, but after some time you will be able to find the space to start working on these other parts in your life. At first it will be difficult, and you won't feel able to do anything, but soon the moments will appear in which you can. This is something that can grow together with finding bits of positivity, in a really non-linear way, just like the process of habituation that continues in your subconscious.
I believe that suffering from tinnitus is part of an inflamed nervous system. Just like when you are really stressed and tired, and you rage at any little sound that disturbs you or any small thing that goes wrong. They all seem extremely loud, irritating and annoying and only negative thoughts arise in your mind. I think that this is the true problem behind the tinnitus that paints it in the image of a monster. It is also something that needs it's time and doesn't diminish in a linear way over time, but with many relapses, negative thoughts and doubts along the way. I remember times of doubting that habituation was real even after 1,5 years. I remember negative thoughts like thinking that during the times I wasn't aware of my tinnitus I was STILL subconsciously bothered by it. I remember relapsing into hopelessness and thinking all my improvement was just me lying to myself. And I remember thinking that all of this was sabotaging my only possibility to ever getting my life back. Despite all of that, I always tried to find the positives, at times completely unsuccessful, but I could eventually always find the strength to try again.
Now that I really do have my life back, and a life that is so much better then before, I can tell you that all of these things are ok and part of the process. Try to be compassionate to yourself, and try to seek out people that care about you. Emotions are very draining, but they offer a strong way to recover from the stress you are going through. I remember the point where I just didn't care anymore and cried in front of my friends. I never did that, and it felt vurnerable (and at first even embarassing), but I truly believe that strong men (and women) are the ones that can embrace this vulnerability and allow these emotions with their loved ones. At fist this completely drained me, but afterwards I noticed how much of a relief it gave me.
What I believe about tinnitus is that everyone is able to hear it (I know this can be controversial, I'm just talking about what I believe). Many people say they can hear it and I think the ones that say they don't just can't "find" the sound (hearing damage probably makes this a lot easier by the way). Like when you hear something far away, and ask a friend if he hears it too. Maybe he doesn't and then after an hour he suddenly "finds" the sound and says "yeah now I hear it too". Because the hearing nerves are always active, true silence can't exist for the living, but the brain can ignore the stuff that is unimportant. The problem is that tinnitus has become a threat, something important that needs to be zoomed into and monitored, and it takes a while to teach the brain that it's something unimportant that it can ignore.
In my experience I believe that the tinnitus was part of a bigger picture. Like a symbol of every part in my life where I was stuck. It seemed my life was over, but in reality it gave me the possibility to really begin living. I hope you too can find this path within the suffering and that it leads you to what you want, including not to be bothered by tinnitus anymore. These are the things that helped me the most:
- Be patient with yourself, specially in the beginning. Don't kick yourself when you just can't get yourself up. It's ok that you sometimes want to give up. It's ok when you just can't take it anymore. It's ok to feel hopeless. It's ok to feel fear. Be kind to yourself, give yourself time and seek out the things that support you in this difficult time.
- Try to prevent self isolation. Seek out the people that you love and ask for help. Allow emotions to come out, they are powerful healers. Your bonds with these loved one will only get much stronger because of it. Let go of any expectations of yourself in these connections, just allow yourself to feel. Animals too are great company, they are the masters of being in the current moment and they give a lot of love by just being who they are and just being with you. I felt like they understood me on a deeper level.
- Find positivity in reading success stories. TRT texts are helpful too. Try to reframe your thoughts about tinnitus in a positive way if possible (at some point it will become possible). I sometimes, for example, heard the tinnitus and thought to myself: this was always there, it just used to be in the background outside my focus. I also thought to myself, it's a harmless, natural sound. The only reason I'm bothered by it is because somehow my brain gave it the meaning of a threat. I'm now in the process of teaching my brain it's harmless so it can ignore it as something unimportant again. With finding the positive I would also advice to try to avoid the negatives from the outside world. Other people are sometimes clueless and (unintentionally) mean, other tinnitus sufferers are sometimes communicating in their own panic and despair. Information on the internet is mostly wrong or outdated according to my audiologist, and way too negative. All these negative bits will just tell your brain again that it's correct in thinking the tinnitus is a threat. Don't believe them.
- Do the medical examinations and tests you need to check that there is nothing physically wrong that they can find. Then stop that path and go for habituation. I completely burned myself out trying pretty much everything. Put myself in a large debt too. I even tried stuff I knew were just scams. Try not to let your panic become destructive like that.
- Find help for habituation. I found a TRT based therapy. It also incoporated audiology, CBT and mindfulness. I learned to listen to my tinnitus, and allow all negative feelings and thought to be there. Very difficult at fist, but it greatly helps for habituation. Soon I would never mask it, and when I got bothered by the tinnitus again, I would try to just allow it, listen to it, and allow any thought or feeling that arises to be there. I also did a CBT therapy afterwards. This greatly helped me to challenge my thoughts and become aware of how wrong they could often be. I believe that TRT, CBT and mindfulness as an addition, are the best tools to help you on the road to habituation.
- Focus health on the anti-inflammatory. I went on a diet recommended by a natural doctor. With no sugar and other sweeteners taste enhancers like msg, caffeine, no gluten, no soy. Also relatively low in carbs. That means many vegetables, and higher amounts of healthy fats like nuts, avocados and coconutoil. I also got my blood checked and supplemented vitamin D and B12 because they were pretty low. I also took a curcumine, pycnogenol, probiotics, omega3 oil and magnesium supplement. This was very hard in the beginning, but at some point I got used to it and now it's normal. And I feel much healthier, more energized and calmer with it.
- Try to find a way to keep doing, or start, physical exercise. If needed get help for that. Start as easy as needed, then build it up slowly. This is also one of the things that will improve your ability to cope with the stress.
- Have the knowledge that depression and anxiety can play mind games with you. It will feel like the better moments never really existed and you just lied to yourself. It will feel like it will never end. It wil feel hopeless. It wil feel like you aren't strong enough. And it will show everything in a negative light and only allow negative thoughts. KNOW how this works, and ride out these moments as best you can, they WILL end. Reach out for support in this. The panic attacks I had ended when I was so done with everything that in feeling the panic I just said to the panic: "whatever... give me everything you got, just kill me if you can". While the fear still lingered on, I found that this completely diminished the panic attack.
- Find your spirituality. A higher purpose in life can move your focus away from yourself a little, being aware of the things that are more important for you then your own life can give a new perspective. A pitfall here is that you can feel hopeless in doing anything because of your current situation. You can overcome that by doing something really easy and small and then realize that despite your difficult situation, you are still doing something for the things you care about. Be careful not to force yourself though, your own wellbeing must come first because this will decide how much you are able do for whatever you care about.
- Use the hardship you are going though anyway to make positive changes in your life. This is the time to turn things around. Remember to not force yourself too much though, because sometimes, and specially in the beginning, you might not be able to do anything. If there are problems in your life you can't change, then it's possible to change your reaction to them. Now is the time to put yourself on the first place in your life. You can turn this time into something positive for the rest of your life, try to find your courage and try to find the moments where you can make some positive changes. Everything is connected, everything you can move yourself to do will eventually build up the life you didn't know you were looking for.
I wish you all well on this difficult journey, my heart goes out to you. I hope my something in my story helps you in finding the next step to where you want to go. I created an account just to post my story, I will try to check back sometime to see if there are any questions or reactions. Much respect to you who are struggeling, I wish you the best in your recovery. Below is my full story for those interested.
The full story
I got tinnitus on september 13 in 2015, laying in my bed about to go to sleep. At that time I started to quit caffeïne, because it made my anxious, tense then tired, aggressive and living in a rushed way where I was never really fully in the moment to enjoy the company of the people I care about. To help with the withdrawal symptoms I took vitamin b3 (niacin) which is a vasodilator and which then caused a hiss in my ears.
History
Before I tell the rest of my story I want to say a bit about my background in this area. I'm now 36 years old and I have had some experience with tinnitus before in my life. When I was about 19 I had a whistle in my ear after going out on a vacation. It stayed for about a week, I had no clue what it was but people told me it would go away on it's own and I believed that so it didn't even bother me much. Same story with having water in my ears as a child, it caused a deep hum a couple of times, but I never really cared because I "knew" it would go away on it's own. Later in my twenties I had the loud noise tinnitus again and read into it some more, I then became a lot more careful to avoid damage to my hearing. I also read some of the suicide stories and I think those stayed with my subconsciously. When I moved to living alone a new house when I was 32 I was much more aware of what I was hearing, a new empty house will have all kinds of sounds. I sometimes got worried if a sound I heard was tinnitus. At some point I got the deep hum in my ears again and got really nervous about it, I even didn't sleep for one night. It was easily masked and my doctor told me he saw liquid on my eardrum, so clearly it wasn't that serious. I also got the loud noise tinnitus again when I went out and the bartender turned up the volume just as I walked by one of the speakers. Again I got really worried and angry at myzelf for not being more careful. Both these noises disappeared again after 1 or 2 weeks, but it's clear that the dark stories I read about tinnitus changed my reaction to it into a very fearful one.
Dark days
On september 13 of 2015 the high hiss tone caused my to become instantly very worried. I don't think it was that loud, but I kept looking for it. The next days it didn't go away and I got more and more worried. I went to the doctor and then an ENT doctor hoping for a sollution, but they pretty much said it sometimes happens, we don't know why, nothing can be done, and had a please go we are busy vibe. I then started to fall more and more into a panic. I couldn't go to work anymore, the concentration to do it was gone. I isolated myself from everyone and spend the days alone in my house googling for sollutions, but the extremely dark stories I read made me more afraid then ever. The high hiss seemed to become louder and louder and I started to hear more sounds. At some point I wrote a description down for an appointment with an audiologist and counted 7 different sounds. In the morning I heard swooshing that seemed as loud asif I was standing in a very strong wind. I sometimes even got worried that the volume of my tinnitus could cause hearing damage. I could hear it in the shower, I could hear it driving my car. I created my own masking mix with crickets and rainfall, but soon I started to hear it through that too. Turning up the TV volume appeared to just turn up the tinnitus volume too. My days became a long ride through many panic attacks where sometimes my legs would even stop to carry me and I would fall down on the floor. I got a permanent neck pain and headache and just felt sick and broken all the time. In my darkest moments I was cleaning up my house as much as possible, so that my family would have an easier time with it when soon I would inevitably die from the stress. Death seemed the only way out, yet I never became suicidal, I just hoped it would happen.
Searching
After three months I think I tried every single therapy or snake oil that I could find which promised to help with tinnitus. I tried to go to work as much as possible, forcing myself in every way. At home I kept searching for new things to try and got into a serious debt. Some therapies, like acupuncture, craniosacral therapy, body stress release, mindfulness, a diet from a natural doctor, I already was a no-milk vegetarian (no gluten, many vegetables, no sugar, no additives specially msg, no caffeïne, swapping grains for lentils and beans as much as possible and supplements vitamin b12, vitamin d, magnesium, curcumine, pycnogenol, probiotics) did help a lot to feel calmer and more in control. Most of what I tried wasn't a waste of time, I learned a lot, it was just too much for me but I kept forcing everything. At home I started to just sit in a quiet room listening to my tinnitus, hoping I would eventually get used to it. I also forced myself to do a lot of workouts. I tried to do everything I could, and while most of the things I did were good, it was destroying me because it was just way too much. I knew it was too much, but it was the only way I had left.
Insight
At about 3 months in I went to an audiologist for a therapy, based on TRT, to learn how to live with tinnitus. A multidisciplinary 3 times per week therapy. The concept of habituation was a new source of hope, and finally a direction in which to find much needed positivity. To that end I also created a collection of positive success stories from this website and others, the most positive ones to read in darker moments. In this period I also went to an ENT, Neurologist and had an MRI scan. I told myself that if nothing is found, I would stop the medical route and try to live healthy and go for habituation. Nothing was indeed found and two hearing tests showed my hearing was even better then average at my age. I also found out that for some reason my tinnitus seemed less loud in a fully sound proof room. When I googled this I found terrifying stories about reactive tinnitus and at that point decided to never again google anything related to tinnitus. When I started the TRT type of therapy I was told most information on tinnitus on the web is outdated or false. I also got information on what tinnitus actually is. How the hearing nerves are never inactive and the Heller & Bergman showed that most people can hear the sound from this in an ansolutely silent room. The sounds are just so unimportant that your brain would normally filter them away, like it does with a ticking clock. It's just that for me the sound became a threat which causes my subconscious to focus on it and make it even louder. My limbic system would then give my the sensations of stress which would in turn validate the threat and cause a vicious circle. The therapy was aimed to break that circle. I would stop masking at night and when I was bothered by the tinnitus (almost always still at this time) I would try to allow all negative thought, emotions and the tinnitus itself to be there. This was done with mindfulness type of excercises. It was hard (extremely so at the beginning), but it seemed to make tinnitus get less important bit by bit after a while. I learning to allow instead of fight.
Change
While I noticed that there were more periods of time in which I didn't hear the tinnitus, I also noticed that I was still depressed, very tense and anxious. Sometimes the physical stress related problems I developed seemed worse then the tinnitus. Much like the tinnitus, the symptoms of extreme tension, sick feeling, neck and back pain and headache, felt like a threat. So after the tinnitus therapy I started CBT based therapy. Again a multidisciplinary 3 times per week therapy. Here I was able to slowly get out of the tinnitus caused burnout I was in. Maybe I was getting into a burnout before the tinnitus already, and maybe the tinnitus anxiety is just another symptom. Now I sometimes remember moments from my youth, when I was crying, or when I was scared in a very silent place, in which I also heard a tinnitus sound. At the time I didn't really think about it, it was just normal. I'm very sure that the biggest problem of tinnitus is an automatic subconscious response that classifies it as a threat. As soon as you get that under control, it won't be as loud, you will notice it less and less, and it won't cause negative emotions.
Emerging
I never stopped trying to do the best things possible, despite that I forced too much on myself in the beginning, I eventually took a good look at every part of my life. I got into a habit of improving everything that was wrong. This is something I would never have done if it wasn't for the experience of tinnitus despair. It's also why, now that I'm habituated, I can actually be thankful for that one night that plunged me in to those many months of suffering. The road to habituation was a long one, and it had many relapses, moments of fear, doubt and hopelessness, but the process went on despite it all. I learned not to overanalyse everything anymore, it just doesn't work for some things. It's just something you need to let happen, experience and feel. I believe everything is connected and finding positive change anywhere will be a new step forward. You can't really track habituation, since it's there when your mind focusses on other, more important stuff. I do know that those moments became more and longer over a larger timespan. At some point I could look for my tinnitus, then quickly forget about it again, because it was just so important. I then realized that this is what habituation is. And it doesn't even feel like the ultimate relief I would dream about, when it's there it just feels normal.
I decided to write down my whole story seperately, for those interested, further down below. First I want to share the most important experiences, insights and lessons I've learned. Of course everyone's situation is unique and I don't have all the answers, but I hope and think that these can help you to find what you need. The first thing I want to say, is something I couldn't imagine myself ever saying for a good 1,5 year. And that is that although my tinnitus despair was so bad that I was SURE I couldn't survive with it, now, 2 years later I really don't care about it anymore. I'm rarely aware of it, and when I am, it's just a natural part of my body. This is what they call habituation, which became my holy grail after 6 months of trying about everything to find a cure. Only now that I'm there, I truely believe that it exists. I can now say that even if there was a cure, I probably wouldn't take it because I would be afraid I'd do something negative to the natural state of my body or something.
Looking back on this long and difficult period in my life, I want to tell you that no matter how hopeless you might feel, you can emerge from this a better person then before. The dark times are ok. The fear is ok. The suffering is ok. Every second onward brings you closer to where you want to go. Everytime you are able to chose to be positive in the face of adversity, be compassionate to yourself and try to move towards want in your life, will make you stronger and stronger to take on the challenges on the way. This dark pit of despair is not only negative, but also the perfect opportunity to improve every part of your life that isn't working for you. When feeling like you lost it all, the things that always stopped you from changing certain parts of your life don't hold as much power anymore. In the beginning you are so consumed with tinnitus that this is impossible, but after some time you will be able to find the space to start working on these other parts in your life. At first it will be difficult, and you won't feel able to do anything, but soon the moments will appear in which you can. This is something that can grow together with finding bits of positivity, in a really non-linear way, just like the process of habituation that continues in your subconscious.
I believe that suffering from tinnitus is part of an inflamed nervous system. Just like when you are really stressed and tired, and you rage at any little sound that disturbs you or any small thing that goes wrong. They all seem extremely loud, irritating and annoying and only negative thoughts arise in your mind. I think that this is the true problem behind the tinnitus that paints it in the image of a monster. It is also something that needs it's time and doesn't diminish in a linear way over time, but with many relapses, negative thoughts and doubts along the way. I remember times of doubting that habituation was real even after 1,5 years. I remember negative thoughts like thinking that during the times I wasn't aware of my tinnitus I was STILL subconsciously bothered by it. I remember relapsing into hopelessness and thinking all my improvement was just me lying to myself. And I remember thinking that all of this was sabotaging my only possibility to ever getting my life back. Despite all of that, I always tried to find the positives, at times completely unsuccessful, but I could eventually always find the strength to try again.
Now that I really do have my life back, and a life that is so much better then before, I can tell you that all of these things are ok and part of the process. Try to be compassionate to yourself, and try to seek out people that care about you. Emotions are very draining, but they offer a strong way to recover from the stress you are going through. I remember the point where I just didn't care anymore and cried in front of my friends. I never did that, and it felt vurnerable (and at first even embarassing), but I truly believe that strong men (and women) are the ones that can embrace this vulnerability and allow these emotions with their loved ones. At fist this completely drained me, but afterwards I noticed how much of a relief it gave me.
What I believe about tinnitus is that everyone is able to hear it (I know this can be controversial, I'm just talking about what I believe). Many people say they can hear it and I think the ones that say they don't just can't "find" the sound (hearing damage probably makes this a lot easier by the way). Like when you hear something far away, and ask a friend if he hears it too. Maybe he doesn't and then after an hour he suddenly "finds" the sound and says "yeah now I hear it too". Because the hearing nerves are always active, true silence can't exist for the living, but the brain can ignore the stuff that is unimportant. The problem is that tinnitus has become a threat, something important that needs to be zoomed into and monitored, and it takes a while to teach the brain that it's something unimportant that it can ignore.
In my experience I believe that the tinnitus was part of a bigger picture. Like a symbol of every part in my life where I was stuck. It seemed my life was over, but in reality it gave me the possibility to really begin living. I hope you too can find this path within the suffering and that it leads you to what you want, including not to be bothered by tinnitus anymore. These are the things that helped me the most:
- Be patient with yourself, specially in the beginning. Don't kick yourself when you just can't get yourself up. It's ok that you sometimes want to give up. It's ok when you just can't take it anymore. It's ok to feel hopeless. It's ok to feel fear. Be kind to yourself, give yourself time and seek out the things that support you in this difficult time.
- Try to prevent self isolation. Seek out the people that you love and ask for help. Allow emotions to come out, they are powerful healers. Your bonds with these loved one will only get much stronger because of it. Let go of any expectations of yourself in these connections, just allow yourself to feel. Animals too are great company, they are the masters of being in the current moment and they give a lot of love by just being who they are and just being with you. I felt like they understood me on a deeper level.
- Find positivity in reading success stories. TRT texts are helpful too. Try to reframe your thoughts about tinnitus in a positive way if possible (at some point it will become possible). I sometimes, for example, heard the tinnitus and thought to myself: this was always there, it just used to be in the background outside my focus. I also thought to myself, it's a harmless, natural sound. The only reason I'm bothered by it is because somehow my brain gave it the meaning of a threat. I'm now in the process of teaching my brain it's harmless so it can ignore it as something unimportant again. With finding the positive I would also advice to try to avoid the negatives from the outside world. Other people are sometimes clueless and (unintentionally) mean, other tinnitus sufferers are sometimes communicating in their own panic and despair. Information on the internet is mostly wrong or outdated according to my audiologist, and way too negative. All these negative bits will just tell your brain again that it's correct in thinking the tinnitus is a threat. Don't believe them.
- Do the medical examinations and tests you need to check that there is nothing physically wrong that they can find. Then stop that path and go for habituation. I completely burned myself out trying pretty much everything. Put myself in a large debt too. I even tried stuff I knew were just scams. Try not to let your panic become destructive like that.
- Find help for habituation. I found a TRT based therapy. It also incoporated audiology, CBT and mindfulness. I learned to listen to my tinnitus, and allow all negative feelings and thought to be there. Very difficult at fist, but it greatly helps for habituation. Soon I would never mask it, and when I got bothered by the tinnitus again, I would try to just allow it, listen to it, and allow any thought or feeling that arises to be there. I also did a CBT therapy afterwards. This greatly helped me to challenge my thoughts and become aware of how wrong they could often be. I believe that TRT, CBT and mindfulness as an addition, are the best tools to help you on the road to habituation.
- Focus health on the anti-inflammatory. I went on a diet recommended by a natural doctor. With no sugar and other sweeteners taste enhancers like msg, caffeine, no gluten, no soy. Also relatively low in carbs. That means many vegetables, and higher amounts of healthy fats like nuts, avocados and coconutoil. I also got my blood checked and supplemented vitamin D and B12 because they were pretty low. I also took a curcumine, pycnogenol, probiotics, omega3 oil and magnesium supplement. This was very hard in the beginning, but at some point I got used to it and now it's normal. And I feel much healthier, more energized and calmer with it.
- Try to find a way to keep doing, or start, physical exercise. If needed get help for that. Start as easy as needed, then build it up slowly. This is also one of the things that will improve your ability to cope with the stress.
- Have the knowledge that depression and anxiety can play mind games with you. It will feel like the better moments never really existed and you just lied to yourself. It will feel like it will never end. It wil feel hopeless. It wil feel like you aren't strong enough. And it will show everything in a negative light and only allow negative thoughts. KNOW how this works, and ride out these moments as best you can, they WILL end. Reach out for support in this. The panic attacks I had ended when I was so done with everything that in feeling the panic I just said to the panic: "whatever... give me everything you got, just kill me if you can". While the fear still lingered on, I found that this completely diminished the panic attack.
- Find your spirituality. A higher purpose in life can move your focus away from yourself a little, being aware of the things that are more important for you then your own life can give a new perspective. A pitfall here is that you can feel hopeless in doing anything because of your current situation. You can overcome that by doing something really easy and small and then realize that despite your difficult situation, you are still doing something for the things you care about. Be careful not to force yourself though, your own wellbeing must come first because this will decide how much you are able do for whatever you care about.
- Use the hardship you are going though anyway to make positive changes in your life. This is the time to turn things around. Remember to not force yourself too much though, because sometimes, and specially in the beginning, you might not be able to do anything. If there are problems in your life you can't change, then it's possible to change your reaction to them. Now is the time to put yourself on the first place in your life. You can turn this time into something positive for the rest of your life, try to find your courage and try to find the moments where you can make some positive changes. Everything is connected, everything you can move yourself to do will eventually build up the life you didn't know you were looking for.
I wish you all well on this difficult journey, my heart goes out to you. I hope my something in my story helps you in finding the next step to where you want to go. I created an account just to post my story, I will try to check back sometime to see if there are any questions or reactions. Much respect to you who are struggeling, I wish you the best in your recovery. Below is my full story for those interested.
The full story
I got tinnitus on september 13 in 2015, laying in my bed about to go to sleep. At that time I started to quit caffeïne, because it made my anxious, tense then tired, aggressive and living in a rushed way where I was never really fully in the moment to enjoy the company of the people I care about. To help with the withdrawal symptoms I took vitamin b3 (niacin) which is a vasodilator and which then caused a hiss in my ears.
History
Before I tell the rest of my story I want to say a bit about my background in this area. I'm now 36 years old and I have had some experience with tinnitus before in my life. When I was about 19 I had a whistle in my ear after going out on a vacation. It stayed for about a week, I had no clue what it was but people told me it would go away on it's own and I believed that so it didn't even bother me much. Same story with having water in my ears as a child, it caused a deep hum a couple of times, but I never really cared because I "knew" it would go away on it's own. Later in my twenties I had the loud noise tinnitus again and read into it some more, I then became a lot more careful to avoid damage to my hearing. I also read some of the suicide stories and I think those stayed with my subconsciously. When I moved to living alone a new house when I was 32 I was much more aware of what I was hearing, a new empty house will have all kinds of sounds. I sometimes got worried if a sound I heard was tinnitus. At some point I got the deep hum in my ears again and got really nervous about it, I even didn't sleep for one night. It was easily masked and my doctor told me he saw liquid on my eardrum, so clearly it wasn't that serious. I also got the loud noise tinnitus again when I went out and the bartender turned up the volume just as I walked by one of the speakers. Again I got really worried and angry at myzelf for not being more careful. Both these noises disappeared again after 1 or 2 weeks, but it's clear that the dark stories I read about tinnitus changed my reaction to it into a very fearful one.
Dark days
On september 13 of 2015 the high hiss tone caused my to become instantly very worried. I don't think it was that loud, but I kept looking for it. The next days it didn't go away and I got more and more worried. I went to the doctor and then an ENT doctor hoping for a sollution, but they pretty much said it sometimes happens, we don't know why, nothing can be done, and had a please go we are busy vibe. I then started to fall more and more into a panic. I couldn't go to work anymore, the concentration to do it was gone. I isolated myself from everyone and spend the days alone in my house googling for sollutions, but the extremely dark stories I read made me more afraid then ever. The high hiss seemed to become louder and louder and I started to hear more sounds. At some point I wrote a description down for an appointment with an audiologist and counted 7 different sounds. In the morning I heard swooshing that seemed as loud asif I was standing in a very strong wind. I sometimes even got worried that the volume of my tinnitus could cause hearing damage. I could hear it in the shower, I could hear it driving my car. I created my own masking mix with crickets and rainfall, but soon I started to hear it through that too. Turning up the TV volume appeared to just turn up the tinnitus volume too. My days became a long ride through many panic attacks where sometimes my legs would even stop to carry me and I would fall down on the floor. I got a permanent neck pain and headache and just felt sick and broken all the time. In my darkest moments I was cleaning up my house as much as possible, so that my family would have an easier time with it when soon I would inevitably die from the stress. Death seemed the only way out, yet I never became suicidal, I just hoped it would happen.
Searching
After three months I think I tried every single therapy or snake oil that I could find which promised to help with tinnitus. I tried to go to work as much as possible, forcing myself in every way. At home I kept searching for new things to try and got into a serious debt. Some therapies, like acupuncture, craniosacral therapy, body stress release, mindfulness, a diet from a natural doctor, I already was a no-milk vegetarian (no gluten, many vegetables, no sugar, no additives specially msg, no caffeïne, swapping grains for lentils and beans as much as possible and supplements vitamin b12, vitamin d, magnesium, curcumine, pycnogenol, probiotics) did help a lot to feel calmer and more in control. Most of what I tried wasn't a waste of time, I learned a lot, it was just too much for me but I kept forcing everything. At home I started to just sit in a quiet room listening to my tinnitus, hoping I would eventually get used to it. I also forced myself to do a lot of workouts. I tried to do everything I could, and while most of the things I did were good, it was destroying me because it was just way too much. I knew it was too much, but it was the only way I had left.
Insight
At about 3 months in I went to an audiologist for a therapy, based on TRT, to learn how to live with tinnitus. A multidisciplinary 3 times per week therapy. The concept of habituation was a new source of hope, and finally a direction in which to find much needed positivity. To that end I also created a collection of positive success stories from this website and others, the most positive ones to read in darker moments. In this period I also went to an ENT, Neurologist and had an MRI scan. I told myself that if nothing is found, I would stop the medical route and try to live healthy and go for habituation. Nothing was indeed found and two hearing tests showed my hearing was even better then average at my age. I also found out that for some reason my tinnitus seemed less loud in a fully sound proof room. When I googled this I found terrifying stories about reactive tinnitus and at that point decided to never again google anything related to tinnitus. When I started the TRT type of therapy I was told most information on tinnitus on the web is outdated or false. I also got information on what tinnitus actually is. How the hearing nerves are never inactive and the Heller & Bergman showed that most people can hear the sound from this in an ansolutely silent room. The sounds are just so unimportant that your brain would normally filter them away, like it does with a ticking clock. It's just that for me the sound became a threat which causes my subconscious to focus on it and make it even louder. My limbic system would then give my the sensations of stress which would in turn validate the threat and cause a vicious circle. The therapy was aimed to break that circle. I would stop masking at night and when I was bothered by the tinnitus (almost always still at this time) I would try to allow all negative thought, emotions and the tinnitus itself to be there. This was done with mindfulness type of excercises. It was hard (extremely so at the beginning), but it seemed to make tinnitus get less important bit by bit after a while. I learning to allow instead of fight.
Change
While I noticed that there were more periods of time in which I didn't hear the tinnitus, I also noticed that I was still depressed, very tense and anxious. Sometimes the physical stress related problems I developed seemed worse then the tinnitus. Much like the tinnitus, the symptoms of extreme tension, sick feeling, neck and back pain and headache, felt like a threat. So after the tinnitus therapy I started CBT based therapy. Again a multidisciplinary 3 times per week therapy. Here I was able to slowly get out of the tinnitus caused burnout I was in. Maybe I was getting into a burnout before the tinnitus already, and maybe the tinnitus anxiety is just another symptom. Now I sometimes remember moments from my youth, when I was crying, or when I was scared in a very silent place, in which I also heard a tinnitus sound. At the time I didn't really think about it, it was just normal. I'm very sure that the biggest problem of tinnitus is an automatic subconscious response that classifies it as a threat. As soon as you get that under control, it won't be as loud, you will notice it less and less, and it won't cause negative emotions.
Emerging
I never stopped trying to do the best things possible, despite that I forced too much on myself in the beginning, I eventually took a good look at every part of my life. I got into a habit of improving everything that was wrong. This is something I would never have done if it wasn't for the experience of tinnitus despair. It's also why, now that I'm habituated, I can actually be thankful for that one night that plunged me in to those many months of suffering. The road to habituation was a long one, and it had many relapses, moments of fear, doubt and hopelessness, but the process went on despite it all. I learned not to overanalyse everything anymore, it just doesn't work for some things. It's just something you need to let happen, experience and feel. I believe everything is connected and finding positive change anywhere will be a new step forward. You can't really track habituation, since it's there when your mind focusses on other, more important stuff. I do know that those moments became more and longer over a larger timespan. At some point I could look for my tinnitus, then quickly forget about it again, because it was just so important. I then realized that this is what habituation is. And it doesn't even feel like the ultimate relief I would dream about, when it's there it just feels normal.
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