At the One Year Mark of Having Tinnitus — Feeling Despair Over Not Feeling Better

Hi everyone,

Just looking for some encouragement. I've been inspired by many success stories on here but starting to feel like they don't apply to me, and starting to feel discouraged at the lack of any sign of improvement in myself.

I got my tinnitus in December of last year during a cold. It started as a tone on a background of static and was pretty mild to start with. After the first month of dramatic panicking I found that I could only really hear it in bed, and shortly after that I noticed that the tone had disappeared and I only heard the static, which at the time seemed relatively benign.

Everything returned to almost normal for two months. Then I went on holiday to somewhere very very quiet, and out in the wilderness that static just slammed into me. I came on this forum for some positivity and instead read some negative comments that sent me into a tail spin. I think the flight made my tinnitus worse as well.

I came home and I could hear my tinnitus in the office, over the TV, and sometimes in the car.

After a few weeks of struggle and hope I lost my ability to sleep and was plunged into total despair. I had a few stretches of time off work and the doctor put me on reduced hours. I did 3 months of CBT and it did help.

Slowly slowly I started clawing my life back. I started cycling in the evenings, and cooking and baking again. I went on a few dates. My sleep was still tricky but slowly returning to normal. Some days the feeling of hope, and excitement that it would all be ok, made me euphoric. This hopeful period lasted 2-3 months, but now these last 3 months have felt less hopeful and more fearful.

Good news is I am finally working full time and most days I sleep through the night. I don't hear the tinnitus in the office any more, because it is quite noisy and I am very engaged in my work. But I still fear that the volume may have increased. I can often hear it in my car driving with the radio on. And watching TV has just become too depressing with the tinnitus screaming over the top. And worst of all in a quiet room e.g. at bedtime it's impossible to mask with a phone. I put rain noises on and that maybe takes the edge off a little bit, but also I get this weird high pitched whine when there's background noise and often that is worse. I'm fairly sure I used to be able to mask it with much lower volumes, and when I think about that I get really scared. The worst is when I hear it outside, which is often. The wind in the trees masks it fairly well, but still days are just terrible.

I am trying to do Back to Silence, and so I have tried to give up monitoring the sound, but every now and then I just worry about whether I'm inadvertently doing something to make it worse.

I feel that my progress has stagnated or gone backwards. I'm back to having days where I just sob. I am anxious all day every day.

I used to go hiking out in the countryside but I just can't face being out in the quiet with my tinnitus. I also used to travel a lot but I'm afraid of what flying could do to my tinnitus, not to mention fear of being in a new place where I don't know what the soundscape will be like and how noticeable my tinnitus will be. Not having these 2 things makes me feel like I'm wasting my life, although I feel fortunate to "have my life back" in the sense of work and socialising.

I'm feeling crap because I feel at one year I should be doing better, but then I remember it's only 9 months since the worsening, so maybe I should count it from there?

I'm trying to see the improvements in my work and sleep as a good thing, but I am impatient for further improvement. I despair of ever being able to relax again and I miss those early days of euphoria whenever I would have a better day. Everything has just turned into a grind, and I am deathly afraid of losing control again.

I started a anti-inflammatory diet 3 months ago, and I am about to start a course of supplements aimed at reducing inflammation and candida. Generally though I don't hold out much hope of a volume decrease and I'm mainly aiming for habituation.

I do yoga and mindfulness sporadically but most days I can't face sitting there quietly to do it. I fear I lack the discipline to make the changes I need to.

I'm probably feeling particularly bad at the moment because I have been ill in bed most of the last week and it is getting harder to distract myself. I'm actually impressed I've coped as well as I have – it's not easy lying here all day just trying to mask with my phone and it's too cold outside even to open a window.

Sorry for the wall of text, but it has helped me to get my story down. I really thought I was getting somewhere and now I fear it was just an illusion or denial.

I want to know if it sounds like I am on the right track at all? And any words of encouragement for me please? I just want to get to a place where this isn't dominating every hour of my life. And I want to go on holiday again without being afraid.

Please be kind. I need some positivity, not more fear.

 

HI @Hotspur2931

I read your post with interest. Although you might not see it and despite what you believe is stagnation I think you are doing rather well. I am not saying this merely to provide what you have asked for, which is positivity. I truly believe you have done well considering that you are working, socialising and going about life even in the face of adversity and not allowing tinnitus to hold you back. This is admirable so please do not be too hard on yourself.

Although your tinnitus started during or after a cold, I am wondering prior to the tinnitus onset were you a regular user of headphones or headset? Did you attend places were loud music is played: clubs or concerts? Have you been using headphones regularly over the last 9months or so even at low volume? I would like to know thanks.
If you have been using headphones or attending places where loud music is present, even wearing earplugs this could be a reason for your tinnitus being still noticeable. I am saying could and awaiting your answer.

My advice is try to avoid quiet rooms and surroundings especially at night. Although you have been using your phone for sound enrichment at night, which is better than nothing. This does not provide what I believe to be high quality sound enrichment. Unless you blue-tooth it to an external speaker or attach it to a docking station with speakers. I believe it's better to use a dedicated sound machine. I recommend the Oasis S-650 sound machine more is explained in the link below which I will provide.

The stress and anxiety you are feeling is quite understandable, so it's probably a good idea to have a word with your GP/family doctor on how you feel. Something may be prescribed to help with stress. Please click on the links below and read my articles. Take your time and read them slowly and thoroughly. Please do not skim through them.

Hope you start to feel better soon.
All the best

Michael

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/habituation-and-tinnitus-treatments.38091/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/
https://www.tinnitustalk.com/threads/sound-machines-and-tinnitus.12072/

 

@Michael Leigh

Thank you Michael! I read many of your posts with interest. I will go through all your links again. I have read several but may have missed some. Part of my distress is that I feel I have read everything and done everything and am still not making much progress. I understand the theory of tinnitus but I doubt my own ability to alter my brain's pathways.

I KNEW you were going to say something about headphones and noise!

My answer is that I have never been one for noisy places. I have been to a nightclub once in my life and never to a rock concert.

The loudest things I have done since work are as follows:

April – Went to an engagement party. It was very loud and afterwards I had the normal night-out type ringing. It went away in the morning luckily. I have never done anything so stupid since without earplugs.

June – Went to a wedding. It wasn't night club loud but I did wear earplugs on the dance floor. I felt good afterwards.

June – I used a wood chipper and an angle grinder. I used headphones but it was still really loud and I had some temporary extra tones afterwards. I have now sworn off power tools!

September – Went to a college reunion dinner where there were so many people in the room it was deafeningly loud. I didn't have my earplugs. I felt fine afterwards though.

October – Went to a small gig. Welsh folk music. It was a bit louder than I was planning on, so I wore earplugs for the second half and didn't get any extra ringing afterwards.

December – Work Christmas party. I stayed away from the live band and kept myself in an upstairs area where it was quieter. I still wore earplugs. Ears felt fine afterwards.

I occasionally use a blender. I always step back and sometimes cover my ears. I don't wear earplugs for driving or trains or restaurants.

I use earphones very occasionally normally when travelling. And normally only for 15 minutes at a time e.g. to watch a quick video on my phone.

I'm very wary of becoming one of these obsessive ear protecting people. And my lifestyle is not particularly loud in general.

I also HATE wearing earplugs for example on the train because it makes my tinnitus sound so loud.

Prior to getting tinnitus I don't remember having much noise exposure at all. Tbh this year has probably had more of that than normal, what with weddings and reunions. Previously I could go years without going anywhere as loud as that. I have never used power tools before either. I have had my hearing tested twice and they said it was fine.

I have always hated really loud places and tried to avoid them, so I will be pissed off if my tinnitus has a noise-induced component!

Anyway, thank you for saying you think I'm doing well. As another poster here said "I'm getting back to normal on the outside but it's still a daily struggle on the inside." I'm really anxious about new situations, especially about being out in countryside with no masking options. I think I'll feel a lot better once I figure out a way to get back to hiking without freaking out. Any advice on that would be welcome.

Thanks for everything you do on here, Michael.

Lizzy
Xxxx

PS I've seen people on here get very angry and shouty at other people for not protecting enough. I am open to advice but please don't be mean to me or try to scare me. I am already scared. I just need sensible advice and ways to move forward with this.

Also I have spoken to the GP a lot. I take the beta blocker propranolol when I get panicky and my heart races, but I have declined SSRIs because I am worried about ototoxicity and other side effects. The most useful advice my doctor gave me was exercise and socialise. These two things dug me out of the hole I was in but that initial relief has worn off a bit now! And I'm also having some doubts about just keeping myself busy the whole time. I don't want to be busy the rest of my life! I also do worry a bit about e.g. restaurants making it worse.

Thanks for the advice about the sound machine. I've tried a few but I'll give your recommended one a go.

 

HI @Hotspur2931

Your post was again an interesting read. I liked that part about you know I was going to ask do you use headphone? Drat, I don't like being predicted..lol. I think you are doing all the right things and can only say give it time. I might add, as you are in the UK, see if your GP will refer you to ENT and from there referral to a Hearing Therapist or Audiologist that specialises in tinnitus counselling. Contrary to what some people believe this can be of immense help. You have the right mindset and may just need talk face to face with someone that knows and understands tinnitus. Please consider it.

I counsel people with tinnitus but do so selectively and not just anyone. If you ever want to talk please send me a PM.

Take care and wishing you all the best
Michael

 

Oh wow I really thought you were going to say I was overdoing it with the noise exposure. You think I'm doing ok??

I'm having counselling with a psychotherapist, but despite having T herself I don't think she understands it very well. I have found her useful for helping to address other stresses in my life but I would LOVE some tinnitus-specific counselling. It is so hard to find, but I will try my audiology department again.

I may well send you a PM if I can figure out how. It would be so useful to talk to someone who really knows their stuff.

Thanks again,

Lizzy
Xxx

 

HI @Hotspur2931

I don't think you are overdoing things with the noise exposure. It is a good thing that you have mentioned you are having counselling with a psychotherapist for other stresses. It may not seem so but, I think it's these other issues whatever they may be, that is affecting your tinnitus. It seems that you have read a lot of my posts and articles. Therefore, you are probably aware that I say tinnitus is 90% mental?

A lot of people misunderstand what I mean when I say tinnitus is 90% mental. They believe I think they can control the volume or the intensity of the tinnitus by thinking positive, this is not so. As you have said you have other stresses in your life which your psychotherapist is helping you address. Because tinnitus is intrinsically linked to our mental and emotional wellbeing, whatever other stresses are in your life will have a direct impact on the tinnitus - in other words they will affect it.

Therefore, I don't think you will gain any benefit seeing a Hearing Therapist or Audiologist that specialises in tinnitus. I personally feel you are quite positive and picked that up immediately whilst reading your post - I have been doing this a long time and one gets a sixth sense about these things. Please stay with your Psychotherapist because that's all I think you need. Once these other issues in your life are brought under better control, I am pretty certain your tinnitus will recede further into the background and reduce significantly.

I don't think it would be of much benefit having a chat with you on the phone. It is the other issues in your life whatever they are that need to be addressed, and once this is done I'm confident you'll do just fine. You are 75% there already as you have the right attitude. Continue going forwards and you'll be okay...

Take care and keep in touch.
Michael

 

Thanks Michael xxx

 

Give it more time and be easy on yourself. Just because we made it one full circle around the sun doesn't mean anything special. I fully understand that this anniversary can put an extra focus on the tinnitus and make you re-evaluate but it's not worthy of your time and thought!

 

Thanks @Bartoli I really appreciate it.

Xxx

 

You may be suffering partly due to SAD (Seasonal Affective Disorder) because you said the past three months have been bad but that is only a guess. You may not be. One thing that helps my mood is Omega 3 fatty acids. If I hadn't taken them this year, I would have probably been a mess. It helps me have more stable moods and it has an anti-depressant effect on me. Lately, I have been taking them in the afternoon. I really hope things get better for you asap.

 

Thanks @JasonP

I am sure you are right. I have always struggled with winter. I hate the dark, and now with the T I hate the quiet as well. I'm taking various supplements and hopefully things will get better when spring comes!

 

You are welcome. According to Google, winter solstice was at 11:19 p.m. EST today so if that is correct, the days should start getting longer. However, it's still winter and you might want to look into SAD lamps for depression. Basically, I think they are used in the morning but never at night. From what I understand, it's best to have at least 10,000 lux for a SAD lamp and Amazon sells them along with other retailers. Or you could see if fish oil or some other supplement could help you. Treating my depression is half the battle for me. Whatever you do, I hope you get better asap.

 

I feel like I've been a bit needy on here recently so apologise if this is too much, but I'd really appreciate input on some decisions I need to make, and hopefully the discussion can help others too.

Quick background: I got mild tinnitus (single tone, mainly quiet rooms only) during a bad cold in December 2018. In March 2019 I went on holiday. On my return the tinnitus had gone up to moderate (static, maskable at times depending on how much I focus on it – fridge computer fans etc can hide it reasonably well if I don't listen out for it, BUT on a bad day I can hear it in my car on the motorway with the radio on).

April–July 2019 I had a total meltdown, took lots of time off work, was pretty depressed and severely anxious.

CBT and staying active helped me get control back of my life, on the surface at least.

Today I am now able to work full time, socialise, and the majority of the time I sleep through the night. On the outside things are back to normal but I am still anxious pretty much 24/7 and I live in fear of new situations where I might not be able to cope. The worst thing is not being able to go for walks on my own in my neighbourhood because I find the tinnitus too loud and distressing outside.

Anyway, I'm really trying to get my life back to normal and that means getting back to travelling. I really need to do that in order to feel like me again. But it just seems fraught with peril and I'm scared. So I'm hoping you guys can help me troubleshoot some things that I'm worried about:

1) Driving alone. Hours and hours alone with my tinnitus, with nothing to do but drive and no-one to talk to is kind of my nightmare. I can do 2 hours from my house to my parents' but that's my limit atm. Sometimes my tinnitus is kind of loud the whole trip. More often I can cover it up with the radio (not too loud, obvs) but I can tell it's still kinda there and I spend the whole drive being SUPER anxious about hearing it. I particularly object to hearing it in the car because it seems to indicate that my tinnitus is BAD and that makes me panic. So I just get in a bad headspace with it.

A good friend has recently moved away and invited me to visit him. It's a 4.5h drive (assuming no stops or traffic, so probably a good 6 hours in total).

I really want to see this guy and I think it's a good opportunity for me to face my fear but I just don't know if I can do it and I don't want to traumatise myself. Also I would only go for a weekend so having driven out there I'll have to turn around and do it all the other way only 2 days later.

I do have the option of taking the train but it's very expensive. And I would like to get over this fear of driving if I possibly can.

(For the record my tinnitus is not noise-induced and doesn't seem to get worse with noise. I have no hearing loss. I have no history of clubs or concerts or headphone use. I am sensible but I don't believe in protecting against everyday sounds. So please don't get on my back about the dangers of driving noise.)

Anyone have any tips or advice? Any ideas on how to make it less stressful/anxiety-inducing? Am I right or wrong to push myself?

2) Being in nature. This is a HUGE problem for me since I can hear my tinnitus loudly out of doors. Loud traffic noise, crickets, and wind in the trees all cover it up, but that still leaves a lot of times where the tinnitus is very prominent (e.g. on still days and/or in winter). On those days I can't bear to be outside on my own. At least when I'm inside there is the noise of appliances and music or radio or my sound machine. Plus I can always kid myself that the buzzing I'm hearing is not my tinnitus but the fridge or the TV. It's not great but I cope. Outside, especially in quiet countryside, it is so so distressing and it feels like there's no escape.

Any words of encouragement? Will this get easier? My favourite hobby is hiking – any tips for helping me get back to that as soon as possible??

3) Flying. Ok this is a big one because my tinnitus permanently increased after my holiday last March that involved 2 flights. My ears have always responded badly to pressure changes, and they were particularly painful on this trip and I had lots of weird noises on landing. It's been nearly a year since I last flew and I'm very scared to try it again but I also don't want to be grounded for the rest of my life. I have got some of those EarPlane thingies to try, and I'm also prepared to wear regular earplugs for the rest of the flight in case the noise is an aggravator (as I said, I don't normally have a problem with noise but I want to minimise aggravation). Do you think earplanes are enough to stop me having more trauma? Should I try a very short flight to start with (they don't go as high)? Should I wait a bit longer? Should I give up flying altogether?!

Any advice or support would be much appreciated. Love to everyone on here.

Xxx

 

Hi there - sorry you’re having a rough go of it. Your tinnitus sounds a lot like mine, minus the airplane issues.

My idea:

How about instead of the radio or podcasts in the car, stream some more effective masking sounds like white noise or train sounds or whatever works best for you. Mask your tinnitus just enough to take the edge off but not fully, and blend the streaming sounds on a low volume into the traffic noise. Or perhaps combine that with music or podcasts on a Bluetooth speaker with whatever you like to hear in the car, so you can become engrossed in that instead of the sound. Use your journey as a space to practice managing tinnitus instead of fearing it. It’s annoying you have to deal with this, but don’t let it stop you from seeing your friend!

Also, can you break the trip up a bit? Maybe on the return visit someone else so it isn’t a straight drive?

 

Thank you so so much for replying. I love "Use your journey as a space to practice managing tinnitus instead of fearing it." I think this could really help.

I'm feeling a bit more optimistic today and even before I saw your post I was starting to psych myself up to just do the drive. I do have the option to take a train, and my friend has also offered to let me bring another friend with me for company, which is very kind. But honestly I do think that this is something I really just need to do, and prove that I can.

Unfortunately today something has come up that I am even more worried about!

My boss has asked me to go to Philadelphia (I'm in the UK) for a conference in late March. I am TERRIFIED. I am planning to fly again one day, but considering what happened last time I was planning to make it a short one, and save it for the summer when hopefully I'll be doing a bit better.

I really don't know what to do. Again, if I can do this, with no ill effects, it will be a huge confidence boost. But if it screws up my ears even more I will never forgive myself (or my boss).

I am feeling huge anger towards my boss for even asking me this. It's not his fault of course - he knows about my T and my anxiety, and he has been supportive, but obvs he wasn't aware of my specific concerns around flying. I can say no if I want to, but I'm going to have to make a decision this week, and that is stressing me the hell out.

ETA: I should add that the increase in my T the last time was not OBVIOUSLY caused by the flight. On the outward flight I had some ear pain and some whooshing noises on landing, but this quickly resolved and I'm pretty sure everything went back to normal. I only really noticed any trouble with my tinnitus later in the holiday when we were out in very quiet snowy wilderness (plus I was wearing ear muffs and a hat). At that point I panicked because at the time I wasn't used to hearing my T out of doors. Tbh I don't think the T had actually increased, because at bedtime that night it was the same as normal. I think it was just the silence made it more noticeable.

After that I got in a bit of a state, and I went on this forum and read some horror stories that really sent me into a spin. It was on the coach back to the airport at the end of the trip that I first noticed a new "tinnitus level" - I could hear my T on a coach for the first time. After the second flight I was feeling pretty jumbled up from all the noise and pressure, but I'm not convinced there was any definite difference in my T from before the flight to after the flight. It was only after I returned to my regular life that I started to notice the T more and more.

I should also add that the T I have now is static. The first T that I had (back when it was mild) was a tone. When I first noticed that I couldn't hear the tone any more and I was only hearing static I was elated. It seemed like an improvement, even though I was a bit worried that it was just that the static had increased and overpowered the tone. I also found the static a lot more benign to start with - it sounded like a computer or a fridge, and therefore kind of normal. It was only when I was in the wilderness that I discovered it was not normal, and that it had the power to "ruin" things like wilderness for me. And then yeah I got into a huge state of anxiety about it.

So it's honestly possible that the T didn't increase at all - it's just that the trip brought it more into my awareness.

I'd be interested to know what people think. Also if anyone has had experience with Earplanes and did they help?

 

Glad my advice helped you think through this. Re: your Philly trip. Resist your urge to tell yourself stories about this! We all do it.

Your boss probably knows very little about tinnitus and didn't know that asking you would cause a lot of stress. We all want to stay on the good side of our bosses, but if you think you're medically not up for it, then that's cool just tell him, or get a Doctor's note. If he is cool, and I'm going to err on the side of him being cool, then they'll likely say "Oh wow I'm so sorry, I didn't even think of this. Skip the conference, and let me know when you're feeling better for a future one." Or if you're feeling stress about making a decision this week, just openly tell him what's up about your apprehension, and ask if we can make this decision in a few weeks. That will give you time to navigate the road trip, see how you feel, then make a decision. Who knows, after the road trip, you may WANT to push yourself for a plane trip.

Don't make decisions when you're Hungry, Sad, Angry, Lonely or Tired.

 

Gosh thank you so much.

I'm still stressing about the concept of flying ever. But I'm feeling quite strongly that if and when I do I want it to be on my own terms, and I don't want to make a rushed decision when I'm feeling fragile.

I tried playing rain noises in the car just now and it helped me relax a little bit, so thanks for that suggestion. Xxx

 

Today (01/06/20) at this exact time (2:10 P.M.) marks my six year anniversary of "receiving"this condition.
Or should I say that was the nightmarish demarcation between not even ever having heard of such a state and having this for every second afterwards 24/7.
I unconditionally stop myself from recalling how many events, experiences, etc. that this condition utterly ruined.
My six month appointment with my audiologist / ENT doctor is scheduled for 01/16, and they should be able to generally predict when Lenire and/or Susan Shore's device will be available.

 

[QUOTE="DaveFromChicago, post: 495560, member: 35821"
My six month appointment with my audiologist / ENT doctor is scheduled for 01/16, and they should be able to generally predict when Lenire and/or Susan Shore's device will be available.[/QUOTE]
How will they predict this, are they involved? I trust you will let us know what they predict? ;-)