It Could Be Worse... I'm Probably Able to Endure Until Better Tinnitus Treatments Are Available

I've been extremely hesitant to make a thread like this. I didn't want to post anything here until I was completely cured/fine again. But recent events have put some things in perspective for me and I feel like it's important to highlight it. I've begun to realize that as long as things don't get worse than they are now, I will probably be able to endure until there are better options on the table. There's nothing I'd want more than silence again, but yes... things could be worse. So I wanted to compare the good and the bad just to put things in perspective.

THE BAD
* Sleeping or taking a nap is still very difficult. I don't get nearly as much sleep as I would like. It's very frustrating and I often feel tired in the morning, tired in the midday, tired in the evening etc. Hearing about people who say they slept wonderfully for 8 hours etc makes me jealous and upset.

* Just knowing that I have tinnitus creates some tension and fear that it could always get worse. I've become very protective of my hearing since I got tinnitus.

* Occasionally I get spikes and they are hard to deal with for me.

* I have suicidal ideation sometimes. A lot less lately, but during 2020 it was like... every day.

* I feel like my soul is not at rest with this stuff. It's just an extremely annoying thing to have to deal with all the time. Body feels like a prison and I've more or less given up on becoming a writer, since the tinnitus fucks with my creativity and idea process.

THE GOOD
* The nature of my tinnitus is quite benign. I mean, the sound that I'm hearing is tolerable most of the time. I've heard about people who have a "tea ket pottle" type of tinnitus, I would never have been able to endure that. I have a whooshing type of tinnitus, a kind of electrical hiss in a way.

* Lenire helps. It makes it possible for me to go through the day without too much problem. I've recently begun using it again, but I'm restricting it to 3-4 times a week now.

*I only have tinnitus in my left ear. My right ear is dead quiet (normal). This makes me feel like I only have one foot in the twilight zone, the other foot is still in the normal world and it keeps me somewhat sane. It helps me remember what life was before tinnitus. It gives me a feeling that it could go back to normal one day. Occasionally I will get extremely mild tinnitus in my right ear after taking a nap or using Lenire. It lasts for 1-15 minutes, then goes away. To this day, it has always gone away. I have an enormous fear of developing permanent tinnitus in both ears, but I try not to worry about it.

* Video games is a tremendous help. I'm mostly able to forget about the tinnitus, even though it's always there.

* When I first got tinnitus in 2018, I had hyperacusis for 5 months. That was a freaking nightmare. I don't have that anymore, so I'm really glad.

* All in all, I still have two arms, two legs, two eyes that works fine, mental health could be better but I'm mostly fine. Tinnitus is just something I have to deal with for now.

There's something else that I also wanted to mention. The last few days I've made some "controversial" posts on my Facebook wall, something I would usually never do because I'm pretty sensitive to "judgement" from other people. I've begun to care a lot less about that, in fact, I've begun to see that my old personality, the one from pre-2012, when my life went to shit and I began to isolate, has begin to emerge again. I'm beginning to feel comfortable with confronting things head on again and I'm starting to feel proud of who I am. For a very long time it was imprinted on me that if you have "conservative values", you must be a piece of shit, an asshole by nature, because you don't get with the plan, the politically correct idea that society wants to imprint on you. So I mostly kept my mouth shut, even though I had some really different ideas about what's morally right and what's reasonable and true. After the firing of Gina Carano and noticing how the far left in the USA really operates, some very long discussions with friends and my brother, I've begun to realize that the unethical, immoral people are on the far left, not the right. The right also has problems, but I don't like extremes of any kind, so I was always opposed to both polars. I've begun to see there is a lot (a LOT) of people who think as I do and that makes me feel unafraid to voice my opinion, because I know they are not unique, snowflake ideas anymore. I met another girl from the Netherlands who also has autism like me and she is also a centrist politically, we discussed for hours and found that we agree on almost everything. That was extremely liberating and it made me feel that I'm not so out of place with my opinions anymore.

I hope this is going to help me focus better and maybe in turn it will help me forget about tinnitus. Strength of character is important and feeling comfortable with who you are is important. Maybe not a cure for tinnitus, but it definitely helps. I'm tired of being an emasculated, scared and anonymous nobody. I'm starting to find my strength again, my will to live and the power of my personality. Maybe I'll even try writing again.

 

This is a fantastic post, Lurius.

I've had the same fears with writing anything in this category because I'm still chasing the idea of a total resolution in my heart - but as you've said, it's important to put things into perspective regardless. I resonate with the feeling of your soul not being at rest with this symptom, I understand that all to intimately, as well as the tension and stress from fearing any worsening in the future.

I'm a writer as well, and this symptom deeply impacts my willingness to sit down and focus on creativity and ideas; the impact of the last four months has been tremendous on my mental health and I'm only now moving away from the worst of it and coming out the other end. I haven't had tinnitus for nearly as long as you, but this post is inspiring to me. I hope I'll at least be partially tolerant of this with time.

You've begun to find your strength again, and that's amazing. I sincerely hope you only progress onward and upward from here. Unapologetically being yourself is one of the greatest things you can have in this world, and you're getting there.

(PS: I have autism as well, and it really doesn't help at the best of times, lol.)

 

Thank you That's very kind of you to say.

 

Well written @Lurius!

Key factor for your progression I would say is, except time, acceptance. Acceptance that it is there, but that you could be worse of... and the fact that you tolerate it on an everyday basis - even though life isn't perfect.

Do not underestimate "good enough".

Indeed!

GOD PAASKE!

 

While I agree that acceptance can be a part of recovery, I will never stop trying to get total silence again. It's important to me that this acceptance thing is not the same as giving up. The reason I didn't want to make the post to begin with is that I'm a little sceptical of this mindset where you passively begin to accept stuff that reduces your life quality and you just succumb to "mediocre". I just wanted to reflect a little bit on this and considering my situation, yes, things could be worse. I could have ALS or MS or something like that. I could be completely blind or had a traffic accident, so I was confined to a wheelchair. Maybe I would be a total vegetable.

I'm willing to accept things as they are for now, but longterm I want things to be "good" again and not just "good enough". I'm sure you can understand.

And yes, God påske

 

I do understand @Lurius.

But my point is that acceptance, and being able to "going on with life", is half a victory. For many that would be good enough, especially in regards to chronic tinnitus as most people do not "get cured" (experience pure silence) so to speak.

 

I have to say I disagree extremely strongly with this. We don't really know that for a fact. My impression is that a vast amount of people do get silence again. If the majority of people who got tinnitus did not get well again, the number of people with chronic tinnitus would be way, way higher than the 10-15% I've heard about (I've heard 20% as well). I do know some people with chronic tinnitus, but I've also spoken to a large number of people who had tinnitus for a period in their life (a few months to a few years). Saying that "most people do not get cured" just do not sit well with me at all, I do not believe this to be true.

 

Disco tinnitus is very common and it goes away most of the time within a day or two.

But if you've had tinnitus for more than a month, then it is more likely to stay for good than go away.

 

@ajc, agreed.

@Lurius, agree to disagree. And as @ajc also points out; there is a big difference between the typical party tinnitus that for most people tend to ease off quickly (but may become permanent if you damage your hearing), and chronic (more than 6 months).

If that is what you are referring to Lurius, I do however agree. Most that get a sudden tinnitus for a day or two after heavy partying, loud concerts/festivals, bad sleep etc. do go back to normal again. I am referring to chronic tinnitus - meaning having had tinnitus for more than 6 months.

For most people that get bothersome tinnitus, it has come to stay - one way or another. That's my opinion. But that doesn't mean that there are "tools" that can be useful in order to habituate - or whatever you may call it.

To me, after 15 years with tinnitus, silence (in this matter) is if I manage to go days without thinking of the tinnitus. That's what is the most important to me. But we are all different.

 

It's not what I'm referring to. Millions of people have tinnitus for anywhere between a few months and a few years. They make changes to their lives, they improve their health in general, they try different things. They develop a new mentality, a mental fortitude, they manage to stop thinking about it. Sometimes it just goes away eventually. I'm never going to believe that "most people never get cured". It doesn't line up with all the stories and evidence I have seen. However, after 5+ years, I have to agree that it's starting to look rather bleak, or at least, that you're going to have to make some pretty extreme efforts. But even then... I've heard about people who've had it for 20+ years, and it still went away.

I'm also a little sceptical to this "habituation" thing. Because I constantly see people in this forum making threads where they are panicking, they had habituated in the past and then something happens, their tinnitus spikes like crazy and they are extremely bothered by their tinnitus again. Then they come here to find help and support. That makes habituation seem a little useless to me, or rather, that it's a mirage. A safety net that could break quite easily. It's better to focus on getting rid of the tinnitus once and for all than to go for habituation, then. But I realize that could get quite tiresome after x amount of years. So habituation is a tool even I would use as a stepping stone to the ultimate goal.

 

Every time I get a spike of fleeting tinnitus I think about how it can be this way forever... Then it goes back down to my screeching baseline tone and I don't feel as bad. I've been dealing with tinnitus for about 2 years and the only thing getting me through is remembering that some days are good and some days are bad. My tinnitus is loud, intrusive and severe, but my mood is affected by it differently each day.

Lately I've been realizing that my tinnitus has been draining my sleep and energy.

I'm currently looking for a sleep med that can help me wake up feeling rested.

 

@Lurius, thank you for sharing both good and bad sides of your story!

 

How much and in what manner does Lenire help you? Thanks!

 

In what manner it helps? I have two distinct sounds. One is a sort of "crackling", this is very mild and it doesn't bother me very much at all unless I'm going to sleep. The other is a high pitched electrical hiss and it bothers me extremely much. On good days, the hiss is completely gone and I can only hear the crackling.

Lenire gives me more good days. That's how it helps.

 

Thanks, that's very valuable to know.

 

It sometimes does help me to think of how life could be even worse... There are diseases out there that can cripple you arguably even worse and which don't have any chance of getting better.

 

I love this post. Video games are great for tuning it out, I remember the first week I had tinnitus I decided to buy Sekiro: Shadows Die Twice to take my mind off it. When I was in the middle of a boss battle on the verge of either winning or dying for the 10th time, the tinnitus was not even in my awareness.

I really agree with this sentiment that "It could be worse" can be pretty helpful. This winter my car died, my tinnitus spiked, and I had a COVID-19 scare all in the same week. When I'm feeling anxious about my tinnitus I'll think back to that week and take comfort in knowing that, if I were to go back in time and be in that headspace, I would kill to be where I am now where the temperatures are getting warmer and I'm not dealing with car problems. I still have the tinnitus, but I can lie in my bed and feel like everything is that much more in my control.

We'll get to that point of true lasting comfort some day, but we have some stuff to take solace in now too.

 

Cruise - may I ask how long it took for you to habituate?

 

I'm not entirely sure where to post this, I didn't want to make a completely new thread about it so I thought it would just fit here, since I made this thread anyway.

I just wanted to tell you about my discovery.

This week has been very strange. Monday through Wednesday I had quiet, peaceful tinnitus. Thursday and most of Friday was back to annoying, loud tinnitus. However, I felt so extremely defeated by the tinnitus, around 22:00 I decided to tuck myself in bed, mostly to feel sorry for myself but I was also hoping to just zone out a little bit. I was very tired. I usually don't do this because I know that taking a nap comes with a huge risk of increasing the tinnitus.

I didn't fall asleep, but I remember distinctly that at some point, I lost track of the tinnitus because I was so tired. I stopped paying attention to it completely, just a trick my brain pulled I guess. I didn't want to fall asleep because then I'd never sleep during the night. So I didn't allow myself to do that. After a good, long while of snoozing I got up again and I suddenly realized my tinnitus had reduced extremely much. It has never happened before from taking a nap, its usually the other way around.

This makes me think that @norwaygirl was on to something. If you somehow manage to pull your attention away from the tinnitus, I mean really pull ALL of your attention, the brain could "deprioritize" the tinnitus or something like that. I play videogames a lot to distract from the tinnitus and that doesn't reduce it, it just helps me not to focus on it. So you need something more powerful than that, I think you need something you're passionate about, something that makes you lose track of time. That kind of thing. Or you can just try to zone off in bed like I did.

Anyway, here I am at 10:45 the day after and my tinnitus is still very quiet. Don't know how long it's gonna last this time and to be honest, I didn't sleep at all this night, so I'm super tired now. I just wanted to tell you about what happened.

 

I think I was over the worst part of unhabituation around 4 months. The turning point was when I realized that my sleep was no longer affected. From there it was up and down but the ups became longer and the downs shorter.

I guess that at around 8-12 months I was over it and felt confident that whatever comes I will be able to easily deal with.

 

You basically summed up what I think the tinnitus problem is: prioritizing attention to internal sounds. Once the priority is gone, the problem is gone. The tinnitus might still be there but the problem is not.

 

I remember your story from years ago, I’m glad to hear you’ve found a tenuous peace. I was there, too for about a year before I started struggling again.

 

Yes I'm 100% prepared that things can get significantly worse again. But right now I'm enjoying the shit out of this. Thank you for your words.