My alternative approach to acceptance/habituation and "making friends" with Tinnitus

[daverussell]

I know how difficult it is to habituate. I'd achieved this but with the help of Sertraline. I'll spare you the details, but in short I recently suffered a horrid spell of vertigo and a spike in my tinnitus, which was diagnosed as PPPD (Persistent Postural Perceptual Dizziness). This was related to the stress of trying to get used to hearing aids (again) and workload. I was given 3 weeks sick leave.

During my time off work I accepted my tinnitus might spike, but I'd habituated before and could do it again. It's been difficult as I've returned to work and I still have to face the workload. The vertigo has almost gone but the tinnitus has continued to spike. So how I cope depends on it's volume that is related to my levels of stress and so it just spirals.

So I've recently decided I'm taking an alternative approach to "making friends" with Tinnitus.

Tinnitus is like people and no matter where we go in life, there's always some tosser that gets on our nerves. Personally I'd rather NOT be friends or make the effort. What are the other options? Well I can get angry or walk away. Neither really solve the problem; I can become the tosser for getting irate or I sacrifice the things I enjoy and those people I enjoy being around, if I walk away. Furthermore, there will alway be someone else, or worse, wherever I go. I've found this in all workplaces - colleagues, clients, management. It's just part of life after all. We can quit and change jobs but end up repeating the cycle.

So why should we walk away? Why should we detach ourselves from our friends (or colleagues or both); those positive things around us?

Eventually we get used to having to ignore the tossers and just be mindful of those things around us that matter. We can find someone more pleasant to be around and with whom we share our grievances with. It doesn't mean that tosser isn't there, but we've found something that relieves the frustration.

Ultimately we accept they're just there even if at times there might be something they do to annoy us. So what! We have a job to do and we have a life to lead. We even learn to just listen to them go on and on and just laugh at how ridiculous they sound. Ultimately we feel better for learning to ignore them and not letting them upset us. We are and have to be the stronger people after all.

[Sassyjax1]

I admire your ability to get on with things inspite of the difficulties you are faced with. For me, I don’t even know if the constant, 24/7 whistling/static sound is even in my ears. Feels like it’s in my head. I can’t pin point it. I think it unlikely I will habituate as I fear tinnitus so much. Then I hear repeated horror stories and realise that habituation may only be temporary and I may actually get louder noises, etc long-term. I’m only 10 weeks in and I can’t even function most days. I am really in awe of your ability to carry on regardless. I am fortunate enough currently not to have hearing loss. I do suffer with hyperacusis.

[daverussell in reply to Sassyjax1]

I don't always get on with things; I just have to remind myself often there is no other option.

There is nothing to fear. Yes, it's probably in your head.. That's doesn't mean it makes it less real or that it can be ignored with the flick of a switch. but you have to learn to face your fears, if they impacts your life.

I trust you have seen your GP and eliminated any concerns. If not so do soon. You can't and shouldn't do it alone. But, only you can control the outcome.

You must change your mindset. Again you don't have to do this alone

[Sassyjax1 in reply to daverussell]

Been a very difficult time of late. This nightmare started in March after I had an op where I had a cerebral fluid leak. 9 weeks later I self diagnose with yet another cerebral fluid leak. They operated sheik 3 weeks ago, These leaks are known to cause tinnitus. Two major spine surgeries later. I still have tinnitus.

[daverussell in reply to Sassyjax1]

Tinnitus is made worse by stress. So after your surgery this must have had a major impact on your mental state. In turn, a physical stress on your bodyDealing with the underlying cause is the most significant step you can make right now.

I can take a while to get used to it.

[Sassyjax1 in reply to daverussell]

Thanks for your support. I had a brain scan to check fluid levels. Ok so far. They can happen at any time. Surgeon caused the leaks during initial surgery and so I was weeks with the awful side effects before anyone listened to me. Don’t think scan showed anything else. All surgeon said was that “maybe the 8th cranial nerve is irritated”. “Maybe” that doesn’t show on a brainscan.

[Karlos99 in reply to Sassyjax1]

I’ve got an appointment at the doctors Tuesday do discuss a possible CSF Leak. I have all the symptoms of one obviously including tinnitus. Clear fluid from the nose, water in my ears, constant headaches, pain in the back of the scalp, stiff neck, pain when I move my eyes and a feeling of huge pressure in my head. Do you kind me asking if you have any of these symptoms please? All the best.

[Sassyjax1 in reply to Karlos99]

Hi, what is the tinnitus like? Mine started in my left ear as heavy droning, banging. That went after a few weeks. It’s now settled to a whistling, electric sound 24/7 that seems to be both ears/head. For me, the leak was initially caused by my surgeon operating on my spine. I did have the headaches initially but they ignored me. 9 weeks later, my surgical site was the size of a small football as there was still a fluid leak. They took me in two weeks ago and had to re-operate. It was so traumatic. They confirmed cfs leaks do indeed cause tinnitus - however, mine has not resolved. I went to A&E as doctors and surgeon ignored my pleas for help. You must get urgent medical help. DO NOT WAIT FOR GP. Please update on here if you can so we know how you are.

[Karlos99 in reply to Sassyjax1]

thanks for the information. My tinnitus started originally about 6 years ago. Was high pitched whistle on my left side. The volume was low so I only noticed it when I slept. Then January 2022 I woke up and my tinnitus was chronic. The volume was through the roof and I had 3 different sounds in both sides. Also I had all the above symptoms. To be honest I’ve habituated now so my tinnitus doesn’t bother me like it used to. I’m just in constant pain and discomfort with my head. Which also makes it impossible to sleep. Apparently the leaks are often misdiagnosed as the symptoms are similar to other things. Hopefully I get done answers soon. Thanks for your help.

[Sassyjax1 in reply to Karlos99]

I’m pleased you have habituated. Do you know what caused your tinnitus initially? I notice you say there was an ear drum issue that went undiagnosed. I’m hoping you are not suffering from a cfs leak - but if the tinnitus has changed since the possible cfs symptoms started - then it is possible.

[Karlos99 in reply to Sassyjax1]

I was on 200mg of sertraline for over 20 years so I suspect that may have caused it initially.

Yes my tinnitus changed when the other symptoms started. Also when I press the back of my head, near the occipital nerves, my tinnitus volume changes.

[Sassyjax1 in reply to Karlos99]

Theres so many reasons that T arises. I’m hoping it wasn’t the Sertraline as it’s still used a lot these days. My gp told me it usually causes the tinnitus whilst taking it as opposed to coming off of it. I don’t know, can only go by what he said and it’s not a comprehensive opinion or answer. My surgeon was interested to know if my tinnitus changed at all from head/eye/neck movements, etc, so that’s interesting to note you are having such symptoms. I’m really hoping that things improve for you very soon.

[Karlos99 in reply to Sassyjax1]

yes it also changes with neck movements.

[Sassyjax1 in reply to Karlos99]

Try keeping a diary of everything that’s affecting the T. It’s a useful tool to be able to explain to any drs or specialists.

[Rustreloaded in reply to Sassyjax1]

If you are 10 weeks in you are probably expecting too much of yourself; of course you fear Tinnitus but you won't always or at least not as much as you do now because you are not just dealing with the unwelcome guest that is Tinnitus but you're also not sure how that unwelcome guest is going to behave over the longer term. Give yourself time, allow the fear because that's often a close bedfellow of the unknown, but your knowledge of how you are able to cope in particular situations will grow and your strategies to deal with it will become honed and once you've achieved this, whilst your guest may remain unwanted and disruptive in nature, you'll know how to reduce the impact. In time, whilst you might still be uncomfortable with the thought of your unwanted guest, the knowledge of how it behaves and what you can do about it will have driven away completely or at least to a large extent that pernicious ghoul we know as fear.

[Sassyjax1 in reply to Rustreloaded]

Thanks for your reply. It’s devastated my life. Friends and family have seen me just hit rock bottom. They 100% do not understand. The nature of how the tinnitus came was incredibly traumatic. I can’t seem to function and it’s very hard trying to get things done. I’m a single parent and it’s very difficult to cope with life, children & tinnitus. I fear it so much now that I can’t even bare to be on my own. I’m convinced I must be the only person to react this way to it. The people who I do know who have it only have it very mildly, aren’t kept awake by it and don’t have it 24/7. They report no such thing as “spikes”. I honestly can’t accept it and the fact it may be for the rest of my life just makes it all so much worse. I don’t even enjoy my home anymore as it was my escape place. Not anymore. The constant having to find noise masking things irritates me. It’s exhausting. I have some sound sensitivity/hyperacusis which doesn’t help. I hope that drops out soon too. I don’t want this. I can’t imagine it getting better. Nothing has changed in 10 weeks and I suspect the major ops haven’t helped as tinnitus alone is too much to cope with. I’m missing my little girls first ever singing concert in 4 weeks as there’s no way I can risk making my situation worse. She’s lost her mum because of this. I don’t even have hearing loss. Regular hearing test was normal. Waiting for audiology.

[Rustreloaded in reply to Sassyjax1]

So sudden onset T then caused by surgery. Sudden onset is the worst to deal with, you can't prepare yourself for it and my audiologist says it can take much longer to habituate to sudden onset T so 10 weeks is way too soon to be hoping for some relief from the effects of T but hang on in there, it will come, more because you learn what you can and can't cope with and manage your lifestyle around that, no point fighting it like I did in the early days. I too had sudden onset caused, I believe, by Citalopram. I also guess that if you've had surgery you're coping with the recovery from that too and whilst T by itself can be a tricky so-and-so to deal with, if it arrives on top of other health conditions with which you are already struggling it can be the straw that breaks the camel's back - as it was with me and I had to give up work; acquired cognitive impairment, arthritic pain and then T on top was too much. On top of all that I beat myself up for doing what I felt at the time was "giving up" - but it was the best thing I did, after 3 months of barely being able to get up in the morning and crying all day I'm now able to manage my life albeit in a much more limited way and at a lower level but there's still joy even though I can't lead the life I lead before - I've found that whilst there are things I can't do now there are things that I can still enjoy and perhaps enjoy more as a result but that didn't come quickly. Please hang on in there, you really are in the early stages in which you are grieving the loss of things you used to do so easily you didn't even think about it and you are currently bumping so painfully along the bottom but it will get better, please just hang on to that for the time being. Wishing you all the very best x

[Sassyjax1 in reply to Rustreloaded]

Thank very much for your support. I had major spinal surgery, the T hit because of the cfs leak they caused, then I to go back again for a second emergency op because they hadn’t fixed a second leak they caused - well that was hell. I wonder if the T/hyperacusis might settle a little once I start to recover physically? I’m not even allowed to drive and that was my therapy. I have a rare spine condition called Cauda Equina Syndrome. I’m lucky to be walking. I have spinal issues from my c5/6 to my sacrum and bilateral hip impingements with arthritis. Yet, worryingly, it is Tinnitus that has devastated me and seriously affected my mental state. I got up one morning, (my birthday), and suddenly I heard voices as robotic. TV was sounding horrific. It wasn’t until 2 weeks ago that my surgeon explained this was probably the start of hyperacusis. Great!!! I live in a noisy city so I can’t escape excessive noise, however, audiology told me that you don’t cover hyperacusis with ear protection - you face it or your hearing becomes far more sensitive. I would cope far better if the T wasn’t 24/7. Friends and family literally don’t understand. They don’t want to know really. “Give it time” that’s what they say, Then hop off into their happy little lives where they can quietly fall into sleep. Lucky souls! Thank you for supporting me, I hope things improve for you too.

[Happyrosie]

Dave, your positive thoughts are inspiring

[Beesmac]

Hi Dave just wanted to say I enjoyed your post and it’s good to see that despite everything you are able to get on with life. Agree totally that stress plays a big part in how we get through our days and your reference to “tossers” made me laugh as it’s a word my husband frequently uses, I don’t actually say the word, but quite often think it!!! Unfortunately these people are everywhere to annoy us but I have generally found that colleagues, friends etc are thinking along the same lines as me.

I hope your dizziness has subsided - I can get this just walking in to a busy environment but I just tell myself it will pass. Have a good day.

[daverussell in reply to Beesmac]

Busy environments are awful and my worst trigger - it's that or phone calls and online meeting (depending on sound quality). I'm a teacher, so stress is part of the job, and I've considered quitting many times especially over the last few weeks. This mindset made me feel worse. However, I have a very supportive manager who has a husband who has hearing problems and Tinnitus. Thankfully she isn't one of those tossers.

All the best.

[Bellyboo]

Hello Dave. Im resigned like you to living with T. There’s no real meaningful support from my GP , I tried sertraline but it stated on the accompanying leaflet that it may cause ringing in the ears so I never gave it a chance. Can you pls tell me what mg % you take ? Also does it calm you down. Im constantly in terror . I controlled evenings with alcohol but for the past year haven’t had a drop as I learned it is oxytoxic and not good for T. I agree 100% with your comments . Good luck

[daverussell in reply to Bellyboo]

Sertraline has been fantastic for me. Yes it stops me punching the wall and kicking the kitchen cupboard doors, or laying awake at night slapping my head.

As side note I should point out antidepressant are different for everyone. What works for some people doesn't work for others. I tried fluoxetine and it was awful; actually, the side effects were quite terrifying for me. I refused any ADs for about two years after that experience.

If only short term. I'm on 100mg. I was on 150mg prior to my episode. I was referred to a neurologist who advised 50mg but I found this too much of a drop. All the staff at my surgery have been very supportive. I think the trick with the GPs (and more importantly yourself) is to have your strategies prepared for coping with t

Tinnitus. What you're asking them to do is relieve the underlying or resulting symptoms. Things like CBT may help (I'm still waiting for a referral). YOU need to change or be prepared to change your mindset.

[Masterfox66 in reply to daverussell]

Sertraline has been a huge asset for me as well, also on 100mg. I got suicidal levels of anxiety from my new heightened tinnitus and it’s been a literal life safer so far, fingers crossed it continues to work.

[Bellyboo in reply to daverussell]

Dave. Thank you for your positive reply from which together with others have convinced me the only way through this is to change one’s mindset (like you said . For the past nine hours I’ve managed to convince myself that the T doesn’t matter as I’m keeping the enemy within in a file that has no key to unlock. For now it’s working. I don’t intend relapsing any time soon if I’m able to keep my mindset on the same positive path? There’s no alternative if one wants to get through this. I live 15 yards from a busy motorway, I can hear cars as I type this in the distance and it’s 3 am !not even rush hour yet and this hasn’t bothered me in 17 years of living here so there’s the rub. Don’t think about it.

[daverussell in reply to Bellyboo]

It's true, you can't say that you won't have a relapse, but as you say "I don't intend to have a relapse". The important thing is that YOU have now formed your own strategy, along with comparisons and analogies that you can relate to personally.

During times of stress or anything else that triggers any anxiety, be mindful of this moment.

Well done, you should be proud of yourself.

[Suz_2 in reply to daverussell]

Dave - there is CBT for Tinnitus with Dabbie Featherstone offered through the BTA website ( if u join BTA then there is a discount on this 12 stage course ) I was referred to NHS psychology but never heard anything . I started this CBT for tinnitus which is probably better than anything else as its specifically designed for T sufferers

[daverussell in reply to Suz_2]

Many Thanks. Sounds good.

My biggest challenge is overcoming my Hyperacusis, and possibly getting used to hearing aids. Although, I don't think hearing aids in the workplace where I'm surrounded by different noise levels and situations are helpful. In fact, they attributed PPPD. I'm now awaiting an MRI too and ENT appointment I had it I'm mind to discuss CBT as a next step.

I will investigate and discuss your suggested option with the BTA..

[Suz_2 in reply to daverussell]

The CBT for Tinnitus is an online 12 stage course with video consultations with psychologist, Debbie Featherstone . I cant imagine NHS psychology providing better than this .

had app last week with NHS Audiologist , who said i should try hearing aids again . After the first attempt ( 2 yrs ago) i gave up after a few days ( of wearing for half days). At that time my T went ballistic and I lost weight and couldnt eat and couldnt sleep for weeks after this.

I have hyperacusis as well - which has become more senstive today after noise incident yesterday . I really cannot see how I can wear hearing aids again . Audiologist is sort of dismayed that i am not doing what they are telling me to do , but with my rare very reactive T i cant see how i can wear them - they dont seem to understand this.

possibly a Low level sound therapy ( to treat the hyperacusis first) would be a better option and then move onto hearing aids? This is what the Tinnitus clinic suggested to me in a phone consultation

It seems my T is a rare type as it changes and spikes often after noise incidents , which are very brief ( for a few seconds) and not even that loud

[daverussell in reply to Suz_2]

Thank you. I purchased the seminar yesterday. I plan to start it tomorrow through good quality speakers. The captions are difficult to follow for prolonged periods.

Ironically I need CBT to be able to tolerate online meetings audio due to hyperacusis 🫣.

My Audiologist said, "stick with them". I'm sure it may have been the wrong time with other work pressures. I'm not they added much value. Maybe when it becomes necessary. Otherwise, I just keep asking people to repeat themselves or ensure I'm positioned correctly.

[Suz_2 in reply to daverussell]

hi Dave - i often use the Flare Audio Calmer when on video or just audio calls - these can reduce the higher frequencies (to a certain extent), getting through ear canal . These are useful as i often find my T and Hyperacusis can be aggravated by artificial sounds, especially during calls. These just sit easily on exterior part of the ear canal and dont fall out

I use the night ones for max effect during mobile or online calls , but i dont wear at other times during day . They work for me - maybe worth a try for yr online meetings.

"A worlds first in audio technology means that Calmer dampens unpleasant frequencies in sound and results in lower stress levels , without blocking sounds you want to hear".

flareaudio.com/collections/...

flareaudio.com/blogs/sound-...

[Suz_2 in reply to daverussell]

I had phone consultation with another Audiologist from a private clinic, more than 1 year ago - and they suggested gentle sound therapy for Hyperacusis and Tinnitus desensitisation first of all , rather than the Hearing Aids ( which are a shock to the brain , initially).

My Hearing Aids were reduced in volume by 20% , after my initial 'very traumatic' reaction of 2 years ago. I have got by without wearing them

[daverussell in reply to Suz_2]

Suz_2 thank you for your help. It's given me a lot the think about. I'm coming to a realisation, that without your help I couldn't have done alone.

I staying with my plan and I don't think hearing aids are solving a problem, rather they are creating the problem.As with most things in life you solve one problem to create another. To use my own analogy: I'm running away from one problem to be faced with another (or several others).

I've listened to some of the Debbie Featherstone seminar. I'm not sure I'm going to benefit. I think I may need to look at strategies for phobias. I know it irrational to be afraid of phone calls.

I need to focus on one problem at a time which is my Tinnitus creating insomnia. Maybe I've answered my own question here. My low tolerance levels are being aggregated by insomnia.

This shows the wonderful strength of OUR COMMUNITY. In my OP I hoped my strategy was worth sharing, in that it might help others. Yet, here you are helping and giving me advice. It has allowed me to contemplate my situation to rationalise or help normalise it. We all have to come to our own realisation and take control of the problem for ourselves. Thank you so so much. I'm not dismissing or disrespecting your advise; quite the opposite.

If my strategy doesn't work or when I'm ready, I know I have other options.

[Darren6 in reply to daverussell]

i very much agree with this approach. The world is an easier place to navigate when you manage to get some sleep. If you can find a way to get this rest with all you are going through it will make a huge difference.I had very bad tinnitus and hyperacusis a lnd followed a path of sleep priority, CBT and low level sound therapy via hearing aids to achieve my habituation

[Suz_2 in reply to daverussell]

yes i agree with you, we have to find what works for us and then share that with others on this forum ,which may or may not work for them

[D-w-L2023]

Dave, it's good to read a positive post and I like your analogies with friends.

I've had tinnitus for over 30 years now (playing in rock bands and riding motorcycles) and very early on the audiologist I saw at the hospital (remember those?) was running what I can only call a "Make Friends With Your Tinnitus" course.

I can't remember what we did but it helped to normalise something that is not normal.

I had to give up playing live gigs even with ear protection as the following days were so unpleasant (not the sort of friend you'd choose to have).

It's a constant part of my life and although I largely manage to "get on with things" it's frustrating as a musician not being able to hear high frequencies as the tinnitus masks them.

Good words Dave, I think we all want to find some positives so thanks.

Dick

[daverussell in reply to D-w-L2023]

It's whatever works for us as individuals. I'm not dismissing the "make friends" strategy. It just didn't fit with my values. My inspiration was two-fold. Firstly, I remember a forum member saying I don't want to make friends with it, which kind of gave me inspiration and my second but main inspiration came from a very popular book at the moment called The Subtle Art of Not Giving A ****. I read this during my time off. Yeah, maybe we need to learn to not give **** about it, but the point of the book is choosing something to give a **** about. There something more to it than that, hence "The Subtle Art Of" bit.

One of my childhood heros Craig Gill, the drummer from the Inspiral Carpets, took his own life due to Tinnitus in 2016, at the age of 44. Purely coincidental but I have the Inspiral Carpets Cow tattooed on my arm several years before this, and before my Tinnitus became intrusive. So it has a far deeper meaning now, despite being coincidental. Another strategy and reminder of what this awful infliction can do to us.

theguardian.com/society/201...

"In a statement issued after the hearing, [his wife] said [Craig's] tinnitus became “so unbearable he felt there was no cure” and urged more awareness of the problem and men’s mental health."

[777john]

I like your approach to T, sorry about your spike. When my T hit the roof over 2 years ago it all most destroyed me, i let it take over my life, i even stopped eating or had very little for weeks, i went down to skin and bone, i was so tired and worn out, i just could not cope with the noise, it was overpowering, and all the medications were making it worse, then finally after asking for help for so long and getting nowhere, along came a great Doctor, i was put on a different cause of medication and he some how got me thinking straight again, and from then on i started getting my life back again, and now for about the last year iv been ok, yes i get spikes and yes it still gets me down sometimes, but i am on top of the T, i enjoy my life now, i got a new job 10 months ago and that's been great, i eat and drink what i want, i make sure i am active every day, i am aware of loud noises but only shy away from them if they are constant or ear piercing, and i watch a lot of tv at night and i haft to have it fairly loud so i can hear it and that sends my T realy high and is very loud when i get in to bed, but that does not stop me sleeping well because of my habituate and it calms down in the morning. I know there will be some tough times ahead, but i know i will be ok with that and i always have this site to talk too I dont know about making friends with tinnitus, i think i have just excepted it in to my life

[doglover1973]

Great post Dave. You made me laugh 🙂

Just thinking over what you say .. I don't know if T will eventually be my friend but it's not yet. More of a teacher or a guide at the moment. My T warns me when there's a problem. If I get anxious or upset my T gets louder , more intrusive. It's telling me I need to deal with the root cause of the problem. Not bury my feelings and carry on as usual. This is helpful in a way but still uncomfortable.

[Kellythecat-74]

love how positive you are . Thats half the battle.

[daverussell in reply to Kellythecat-74]

It is indeed. What choice do we have?

Remember the times of resilience and strength. They make us stronger. So if you can do it once you can do it again.

[Kellythecat-74]

I remain hopeful. Just cant remember how long it took .

[daverussell in reply to Kellythecat-74]

Bloody well annoying init. You might be able to solve other problem or redefine those problem; maybe they aren't problems after all, or at least they're somebody else's problem.

[Kellythecat-74]

that made me laugh.

[Tlflom]

I found chiropractic is super helpful. No crank and yank type practitioners, so get referrals from people in your area.