What Tinnitus Milestone Do You Hope to Reach?

Hello, hello! It's Beau!

I was speaking with a friend of mine, mostly commiserating our recent tinnitus spikes and just tinnitus in general. I know many of us here hope that one day our tinnitus might vanish or that a suitable treatment will be made that will soothe the noise but for me these are very far off wishes that I feel like make me more depressed when I think of the distance between me and that (hopeful!) scenario.

Instead I decided to mentally set myself some ~tinnitus milestones~ things that I hope to achieve or hope to have happen in a matter of weeks or months instead of years and I was curious if anyone else had any goals or milestones they hope or are trying to achieve themselves?

Mine are:

1. Be able to sleep on my side(s) again. My latest spike has just made covering either ear with a pillow too unbearable and sleeping on my back is incredibly uncomfortable. I've manged some fitful 20-minute naps here and there but I am hoping soon I'll be able to get better rest.

2. Be able to read again! Ugh I miss doing this so badly. But I've just found it so hard to focus on the words and not the hissing and humming in my head, putting white noise helps a bit but I still find myself distracted. There's a ton of books waiting in the wings for me to read and it brought me a lot of joy when I had insomnia (not-tinnitus related) or just wanted to relax. I'm hoping to be able to do it again in relative silence soon!

 

@pastelbeau, have you considered using a pillow speaker?

 

Hey @pastelbeau - That's a good idea. We're often looking at some far off idealized end state. I like the idea of picking more near term possibly achievable milestones.

For me, I'm a lifelong side sleeper since I have sleep apnea. However, I got a CPAP machine and found that I can now sleep on my back, which I'm finding to be more comfortable overall. With side sleeping, I find myself tossing at night because my shoulders and hips get sore from lying on them.

But whether I sleep on my side or my back, one thing I've become aware of is that I tend to wake up with a stiff neck. On my bad tinnitus days, my neck is more often very stiff. This is leading me to believe that my neck posture while I sleep is a factor in my tinnitus experience. So, my next milestone is to find a good sleeping solution so I don't wake up with a stiff neck (I'm saying stiff neck, but it's actually more like stiff neck + traps). I'm researching cervical pillows to see what might work for me.

 

I'm curious how you plan to achieve these milestones and what timeline have you set for them?

I don't have any tools or abilities to affect my tinnitus (I've tried, but nothing works) and I've found that acceptance of the present is the best I can achieve.

 

My milestone would be same tinnitus loudness but threshold shift for sounds that cover the tinnitus. So that a movie, people talking etc. would cover it. Before my SSRI induced worsening this was always the case.

 

I have looked into it! It's something that I intend to consider more seriously if I find my current methods aren't panning out.

I agree! I found that I have such aching neck & shoulder muscles from trying to sleep on my back without letting my ears get occluded by the pillow. I'm really hoping you are able to find a pillow (or pillows!) that are able to help you get a more restful & painless nights sleep! as I agree -- having tight neck & shoulder muscles surely cannot be good for your tinnitus. I have been doing some neck and shoulder exercises when I wake up in the morning to try and mitigate the soreness .

My hopeful timeline is by springtime! Around 3~ months or so. I have a lot of things happening during April-May and honestly it would just be such a weight off my shoulders if I was able to not worry about this on top of everything else I will be dealing with around that time.

I've been attempting to protect my ears against loud noises that I feel may be too much for me so for example I use earplugs when I vacuum or when I walk the dog (we live by a busy road and have neighbors that love yard work). I also have been following @I who love music's Back to Silence method of dealing with my tinnitus on a emotional/mental level. It worked for me the last time my tinnitus spiked back in September so I am hopeful it will help me again this time around.

And of course I mask (just under the tinnitus as is recommended) and use a combination of cricket/nature sounds & hilariously enough... 8-bit music! It's kind of like neuromodulation music/tones but less grating on the ears, really helps when my tinnitus seems unbearable at night.

 

I hope you're able to get sore-free sleeping too @pastelbeau.

There are so many pillow varieties out there, it's dizzying. My chiropractor suggests getting a Core Product pillow, like the one that the sides thicker then the center. So I'll be looking for one like that they hopefully didn't have a Prop 65 warning.

 

@pastelbeau, I read your introduction post so I know you've had tinnitus way longer than me (I'll be at a year in a couple of weeks), but reclaiming my reading has been a huge relief for me. I didn't start reading again until about two months ago. I couldn't focus either. I actually started to read again in the bath. I put on some violet noise mix on my phone and soak in a hot epsom salt bath and read my Kindle before bed while sipping chamomile tea. I think the combination of all those relaxing things helped and now I think I sleep better too. I find myself looking forward to my reading/relaxing time every day and it helps me make it through. So maybe try that? I actually stay up late to do it after my family is asleep as its the only time I can take for myself but it is worth it! Bonus is it might help calm down your system from your recent spike/worsening.

 

Probably driving. I haven't driven since I got tinnitus due to sleep issues, plus I didn't need to drive where I lived due to availability of decent public transport. I just learned driving about a year earlier so I would not consider myself an experienced driver though I did errands on my own etc. I moved during the pandemic to a new city and the public transport is bad. My sleep is much improved now but still not as good as pre-tinnitus. I believe I am fit to drive now but concerned if my tinnitus will be distracting, and my sleep isn't as good as pre-tinnitus, etc.

Does anyone have advice here on how to drive with tinnitus?

I am able to sleep on my side (I have very loud tinnitus), with my ear pressed to the pillow. I read somewhere awhile ago about focusing on your tinnitus while trying to sleep. I trained myself to do this. Sometimes I also focus on the white noise machine which I need for sleep.

 

Driving with just tinnitus can be nice as the broadband noise from wheels on tarmac makes for an effective masker. But if a person has hyperacusis too (like I do albeit in a mild version) driving can be extremely challenging.

I've noticed on numerous occasions how the road noise really spikes my tinnitus to the point where it's almost the only thing I can hear. A real pain but thankfully it always returns to baseline afterwards. And then some days the road noise doesn't affect it all. Go figure.

Tinnitus/hyperacusis (in its milder versions obviously) should never prevent us from doing stuff so my advice for drivers, is really know your tinnitus. Know when you're having a good day, know when you're having a bad day. And if you really need to drive on a bad day, be sure to take breaks.

 

You can get pillows with a 'hole' through them so your ear doesn't press against anything while lying on your side.

 

I've had the same kind of problem for years because of a slip disk, well, three but who is counting What made a difference to me was a memory foam pillow. At first I balked a bit because of the price but decided to get it anyway, and I have to say it has been worth every penny. It was by Tempur and has lasted for years and years.

I've tried getting a cheaper, no-name substitute a while back but they have all been packed too tightly (or maybe the material simply was of a lesser quality).

If you decide to give it a try, I would recommend you leave your pillow in its plastic cover for a trial period (you'll notice very quickly if it's the right kind of pillow for you), so that it can be returned in case it doesn't work for you. The one I felt was most comfortable was about 40 x 80 cm and 10-15 cm in height. The big and fluffy ones were the ones that gave me a crick in the neck because they wouldn't adjust properly to the weight of my head, so that I would sleep at an odd angle.

As for milestones, I'd love for my hyperacusis to not react to so many of my friends' voices, so it would be possible to be more social again.

And I miss music. LOUD music... sigh!

 

While I hope 2023 could bring a miracle of no longer living with tinnitus, I’m realistic any milestones this year will be achieved through sound therapy and managing stress. I’ve lived with tinnitus for over 23 years now. Only in the past 5 years have I tried to manage its reactivity better and this was because it was impacting on me functioning during the day and giving me some scary nights.

MS1. To try and understand how to reduce the impact of tinnitus without making tinnitus overly important in my life.

Achieved - if I avoid any mental health crises.

MS2. Participating in local University research. This is using sound and a prototype digital polytherapeutic app?

Achieved - not sure if I am on this trial yet but I hope to know soon and keen to share this journey. Any suggestions how to do this? What would be of interest to people?

 

After a recent setback, I did the exact same thing recently. Set some 2023 milestones.

I hope to get there by living almost as a recluse (which I have been doing for 1.5 months now) and seeing if healing is a reality. Unfortunately, after a recent bad ridiculously rare 110 dB setback at home, my reactive tinnitus has reached levels at times that I can either hear it at about 50 dB-60 dB or I can't even hear it but can feel it (like ultrasound) and it's not comfortable and a little painful. The OK days I used to have every once in a while have now disappeared.

I'm worried that the tinnitus is just too far gone now, but unless I do this, and set myself some small goals and challenges, I may as well give up now.

January:
- Take a walk at sunset along the beach (achieved this week with Peltors).
- Photograph the 'green' comet currently in the skies (short drive away in a very quiet location, and will have ear plugs and Peltors).

February:
- Make all attempt to keep my work from home job. I haven't been able to work since October. I have an amazing supporting company, and want to pay them for the incredible support they have given to me. I also don't want to lose this really good job despite how bad I have been, as finding another job after with this condition will be next to impossible. I can do this without any audio, at least for a while.

March:
- Take other half for a one or two night break somewhere remote and quiet like a cabin in the woods.

April-November:
- TBC

December:
- Depending on progress, a short haul flight would sound like a dream right now (even just 1 hour). I am very risk adverse (hence deciding to live like a recluse) so this would not be done unless I felt 99.9% comfortable. I just wanted something big to aim for... but no intention of doing this to achieve a goal and get a setback.

I'm going to have many ups and downs, and will for sure have more times of wanting to end it than continue but I need, and have always needed, goals to achieve.

Oh and also my 2023 mission is to give up trying to book consultations with so called experts whose names float around on the internet to help fine tune my knowledge and research. I have booked private (expensive) appointments with almost all of them now. I never expected any of them to give a cure but they have no more answers or suggestions than you already know, or can read here. Some are actually quite dismissive of severe sufferers too.

 

I know what you mean about sleep and pillows. I sleep on the edge of mine, that works fine. As for tinnitus goals, I don't set goals about things that I have no control over, but just generally focusing on enjoying my life and doing things that are fun and/or rewarding works wonders. A pet is good too, we can get too focused on ourselves, and a pet allows us to get out of that trap, as does pursuing the things we're passionate about. Go volunteer at a homeless shelter or a hospital some time, you get to see people in much more desperate conditions.

 

In my 35+ years living with tinnitus, I never set a milestone. I just took it day by day and did my best to manage.

In my early days (mild - only heard at nights in a quiet room), I did my best to just try to understand what I was dealing with. I did my best to manage my situation.

These days (Hell level) I still do my best to manage my situation. I take it as it comes. I don't think of the past. I don't think of the future.

I focus on now.

Learning how to manage my thinking (in early days at MILD levels) has been key for me in dealing with the horrible, multi tone, and beyond hell level tinnitus that I live with each day.

My thoughts and perceptions have been key in dealing with what I face each day and still are.

 

Excellent advice @fishbone. Your post is the key to learning to live and habituate to tinnitus.

Take care,
Michael

 

I deal with it and life my life to the best of my abilities.

 

That's quite a solid account of what can be achieved. You appear to have endured the full spectrum of suffering.

Why do you think it got worse over these 35 years and not better? Did you decide to live your life, irrespective of your tinnitus? Do/did you have a noisy workplace?

Any regrets? I mean, what would you do differently if you could go back?

 

I'd love to be 100% habituated, but that's not my case at all. I just try to handle what I face and do my best to keep moving forward (as I say In all my posts).

 

Yes, it's been a roller coaster ride indeed.

In my early days, there was no advice, mentors to guide me. My lifestyle was very social (so It had an impact on my ears). My posts/stories share my experience and hopefully it helps people move forward and take care of their ears.

Being able to help even one person is a blessing. That's why I share my stories.

 

I appreciate that each person will have their own definition of habituation @fishbone and therefore, I respectively disagree with you and believe that you have fully habituated to tinnitus. I have explained this in my threads: The Habituation Process and How to Habituate to Tinnitus.

Briefly, it is about being able to live with tinnitus and accepting all of its foibles and little eccentricities that plague this condition. This doesn't mean one will not occasionally find it problematic which can be brought on by stress for instance. However, someone seasoned to tinnitus or veteran such as you, has learnt to adapt to these situations and finds a way to overcome them. This may require self-help or seeking professional medical treatment.

All the best,
Michael

How to Habituate to Tinnitus | Tinnitus Talk Support Forum
The Habituation Process | Tinnitus Talk Support Forum

 

What would your advice be so we slow down our progression with tinnitus? Avoid social situations, protect when taking the car/tube/train/airplane, protect only when the environment feels painfully loud?

Thanks a lot for your contributions to the forum.

 

I too tend to stay up later then my partner! Mostly because I have insomnia (not related to tinnitus) but there is something so calming about just being able to be alone enjoying whatever you want that I don't mind most nights. Within the past week I managed to get some reading done through sheer overwhelming multitasking haha. I'll stay up at night and do stuff on my computer and in-between will get a few paragraphs of reading done, rinse and repeat.

I'm glad to hear you were able to get back to reading! There's nothing quite like losing yourself in a good story!

 

I feel you on this. It's a bit of a tightrope walk sometimes. It's very easy for someone to tell you to just live your life and keep going as if it's not there but it can be difficult, especially if you have other conditions that can exacerbate the situation (ADHD, OCD, etc). Despite my current spike/worsening, I had been there and it's a place you can get (back) to. Every day you get up in the morning and every night you close your eyes to sleep is a day you win and your tinnitus loses. You got this and I believe in you!

 

In all honesty, there is no simple answer to this.

Majority of my tinnitus afflictions have been sound induced.

I suggest that folks do protect their ears in loud known spots, and places. Over-protection could possibly lead to further sound sensitivity. From my decades of living with this condition, I have learned that there needs to be a balance.

Both sound and stress can possibly annoy the tinnitus.

All in all, I just take it day by day. I try to see what can possibly help my situation.

That's my outlook.

 

I would like to be able to travel to several different countries despite having a fear of new places due to my tinnitus. I’d also like to possibly have a dog one day.

@fishbone, I saw on one of your other posts that you decided to have a pet (or two) and I’m just wondering with how that really works. How do you protect yourself while having a dog?

 

Same. My biggest dream in life was being a vagabond and I feel like it's over now.

 

Don’t give up though. I’ve traveled a lot since getting tinnitus. I’ve been to the Bahamas and I’m about to hop from Seattle to spend time in Alaska and Canada. I think the best thing would be taking some time to address the things that you can control in your life. I’m sorry if that sounds cheesy or dismissive.

Just take some time to really think. I see you live in Vegas. A month ago I went out to Mt. Charleston to clear my head a bit. Me and my best friend ended up having the best time. Maybe explore nature and cities on the west coast. I’ve been to probably every major city in California. There’s a lot more to enjoy in life so don’t give up.

 

Hey, I have a question. Have you taken the RTC bus since you've gotten tinnitus or what do you think of taking it? I don't have a car and even when I use earmuffs + earplugs outside, my tinnitus seems to spike/worsen, so I'm stuck basically. I was considering getting a bicycle but not sure if riding a bicycle along traffic would be any less risky than just taking the RTC bus.