MemberOne year ago this week my first ENT told me I probably had permanent tinnitus. It was enough to start a cascade into a very dark place. One I've slowly but surely crawled out of, even though at times it seemed impossible. I went through several stages of grief, which id like to share so others may recognise them as well.
Shock
My tinnitus started out very mild. Not enough to really bother me, not enough to go to the GP. From February until June 2014 I ignored it as much as I could. This all changed when I went to the GP, who referred me to an ENT. He told me I had some minor, but permanent hearing loss, and my tinnitus would most likely not disappear. "You just have to get used to it". Oh how Ive wanted to hit everyone that ever told me that, especially ENTS. Knowing it was permanent changed everything. My tinnitus went to 11 overnight, from barely audible, to barely liveable.
Depression
I found myself unable to function in daily life. I had to stop working, which is something I had never done in the 20+ years I've been with the company I founded. It felt terrible, but I couldn't concentrate on anything. At the same time I suffered an achilles tendon injury, leaving me unable to run, something I did almost every day.
My doctor prescribed me Paroxetine, but it backfired and caused suicidal thoughts. I had really hit rock bottom. I went through several other anti-anxiety drugs, but none of them worked for me. Im probably very sensitive to psychopharmacological drugs. Eventually I decided to research these drugs myself to try and find a combination that would work for me. I proposed a combination of alprazolam (0.25mg) and mirtazapine (15mg) to my GP who agreed to let me try them. Alprazolam to get through the day, mirtazapine to sleep.
A word of caution though, alprazolam can be very addictive, and for this reason I never used much of it. But even though many people on this and other forums warn against them, looking back the use of alprazolam (or another anti-anxiety drug) was vital. I had to be able to somewhat function, to pick up the pieces. To feel like there is light at the end of the tunnel, even though that feeling was chemically induced.
Denial
Pretty much everyone with tinnitus goes through this stage. I call it Denial, because thats the word being used in literature, but other words could be used. It's the phase where you dont believe your tinnitus is permanent. It's the phase where I went to see 4 ENTs, a pain specialist, an acupuncturist and some kind of magic wand waver (im only somewhat kidding). Where I took all kinds of supplements and OTC medication, because someone on the internet said it could work. I should and do know better, but desperation gets the better of us.
I am personally absolutely convinced people should give this stage all the room it needs. Some people will try to make you skip this stage. "Just listen to me, all you need to do is to accept it". They're probably right, but im not wired this way, and chances are, neither are you. My mind wanted to be sure I tried everything possible. I left almost no stone unturned. If you want to see how far I went, just read this post
The only stone I left unturned is Retigabine. I could most likely have gotten it, as my GP is awesome and was very interested in everything I knew and written down about it. But it felt to me like a big risk, at a time I was starting to see some minor progress.
Reconstruction
After about 6 months, I figured I had done enough therapies, doctors, supplements and other stuff. It was time to get my life back. First things first, I had to get off the alprazolam. It is a potent drug, and I felt it had done enough and was probably hindering progress at this point. It took me about 4 weeks to wean off it from 0,5mg a day to 0. I haven't felt the urge since.
To this date im still taking mirtazapine. I see it this way. I have a permanent disease, and mirtazapine is a daily medication I need for it. It makes me sleep much better, is not truly physically addictive, and I dont see the harm. I have gone down from 15mg to 7.5mg on most days.
I didn't really change anything over night. Just day after day, week after week, month after month, I started to work a bit more, took up wall climbing next to running, got a puppy, and started picking back up some things that I stopped doing like going to the cinema.
Acceptance
The holy grail, acceptance and habituation. Im sad to say, im not quite there yet. But in a year I've come a long way from not wanting to live like this, to somewhat being back to normal. Something I did not think was possible.
Over the months tinnitus started to move to the background. During the day I hardly notice it anymore and at night, when it's still there and at times very loud, it doesn't invoke much of an emotional reaction. The only time tinnitus still beats me is when I want to focus on something for a few hours. It brings up bad spikes and this tells me I haven't quite habituated yet as i let my emotion take over and be angry at my tinnitus for not letting me do those things for very long. But knowing your enemy is half the battle and im fairly sure i'll eventually win the war.
ps.
Even though habituation was and is my goal, im a firm believer that the progress currently being made regarding Kv7 modulators is a huge step towards a real treatment for tinnitus and I follow it closely. I will probably at some time in the future try one of the eventual medications coming out of this research.
Shock
My tinnitus started out very mild. Not enough to really bother me, not enough to go to the GP. From February until June 2014 I ignored it as much as I could. This all changed when I went to the GP, who referred me to an ENT. He told me I had some minor, but permanent hearing loss, and my tinnitus would most likely not disappear. "You just have to get used to it". Oh how Ive wanted to hit everyone that ever told me that, especially ENTS. Knowing it was permanent changed everything. My tinnitus went to 11 overnight, from barely audible, to barely liveable.
Depression
I found myself unable to function in daily life. I had to stop working, which is something I had never done in the 20+ years I've been with the company I founded. It felt terrible, but I couldn't concentrate on anything. At the same time I suffered an achilles tendon injury, leaving me unable to run, something I did almost every day.
My doctor prescribed me Paroxetine, but it backfired and caused suicidal thoughts. I had really hit rock bottom. I went through several other anti-anxiety drugs, but none of them worked for me. Im probably very sensitive to psychopharmacological drugs. Eventually I decided to research these drugs myself to try and find a combination that would work for me. I proposed a combination of alprazolam (0.25mg) and mirtazapine (15mg) to my GP who agreed to let me try them. Alprazolam to get through the day, mirtazapine to sleep.
A word of caution though, alprazolam can be very addictive, and for this reason I never used much of it. But even though many people on this and other forums warn against them, looking back the use of alprazolam (or another anti-anxiety drug) was vital. I had to be able to somewhat function, to pick up the pieces. To feel like there is light at the end of the tunnel, even though that feeling was chemically induced.
Denial
Pretty much everyone with tinnitus goes through this stage. I call it Denial, because thats the word being used in literature, but other words could be used. It's the phase where you dont believe your tinnitus is permanent. It's the phase where I went to see 4 ENTs, a pain specialist, an acupuncturist and some kind of magic wand waver (im only somewhat kidding). Where I took all kinds of supplements and OTC medication, because someone on the internet said it could work. I should and do know better, but desperation gets the better of us.
I am personally absolutely convinced people should give this stage all the room it needs. Some people will try to make you skip this stage. "Just listen to me, all you need to do is to accept it". They're probably right, but im not wired this way, and chances are, neither are you. My mind wanted to be sure I tried everything possible. I left almost no stone unturned. If you want to see how far I went, just read this post
The only stone I left unturned is Retigabine. I could most likely have gotten it, as my GP is awesome and was very interested in everything I knew and written down about it. But it felt to me like a big risk, at a time I was starting to see some minor progress.
Reconstruction
After about 6 months, I figured I had done enough therapies, doctors, supplements and other stuff. It was time to get my life back. First things first, I had to get off the alprazolam. It is a potent drug, and I felt it had done enough and was probably hindering progress at this point. It took me about 4 weeks to wean off it from 0,5mg a day to 0. I haven't felt the urge since.
To this date im still taking mirtazapine. I see it this way. I have a permanent disease, and mirtazapine is a daily medication I need for it. It makes me sleep much better, is not truly physically addictive, and I dont see the harm. I have gone down from 15mg to 7.5mg on most days.
I didn't really change anything over night. Just day after day, week after week, month after month, I started to work a bit more, took up wall climbing next to running, got a puppy, and started picking back up some things that I stopped doing like going to the cinema.
Acceptance
The holy grail, acceptance and habituation. Im sad to say, im not quite there yet. But in a year I've come a long way from not wanting to live like this, to somewhat being back to normal. Something I did not think was possible.
Over the months tinnitus started to move to the background. During the day I hardly notice it anymore and at night, when it's still there and at times very loud, it doesn't invoke much of an emotional reaction. The only time tinnitus still beats me is when I want to focus on something for a few hours. It brings up bad spikes and this tells me I haven't quite habituated yet as i let my emotion take over and be angry at my tinnitus for not letting me do those things for very long. But knowing your enemy is half the battle and im fairly sure i'll eventually win the war.
ps.
Even though habituation was and is my goal, im a firm believer that the progress currently being made regarding Kv7 modulators is a huge step towards a real treatment for tinnitus and I follow it closely. I will probably at some time in the future try one of the eventual medications coming out of this research.
