Paradox

[Maxi80]

Hey guys.

How do you unnotice the noticeable? It all seems a strange paradox!

People have advised to lesson my emotional response to T. How? It’s loud and it’s annoying and it’s 24/7!

I’m full of questions.

Thx in advance!

[Happyrosie]

Well, Maxi80, you don’t actually ‘unnotice’ the T. It’s just that you habituate to it. Eventually.Stuff comes along and you notice the T - it’s always there, waiting for you - but you eventually ignore it.

Just as an example: when you were younger, something nasty happened (whatever it was) and at the time you were hurt and thought you would never get over it. But you did! Life consists of good things and bad things. You get used to them.

I wish you all the best.

[Maxi80 in reply to Happyrosie]

So habituating means still hearing but having no emotional response?

[_Barnabas in reply to Maxi80]

In my experience with habituation the noise of tinnitus appears to be much less and it fades into the background with other noise but sometimes you just catch it and remember you have tinnitus. I am now habituating for the third time and it’s getting better each day. Three weeks ago I was in a very dark place in my struggle with T but life is getting better.

[Maxi80 in reply to _Barnabas]

So habituating is just about getting used to it? It can’t just miraculously disappear??

[Happyrosie in reply to Maxi80]

I suppose you might be lucky and it just goes away. My experience is that you get used to it and just don’t notice it unless it’s brought to your attention.Whilst I can hear mine over the noise of a car going at seventy on a busy motorway, I don’t actually notice it unless I’m having trouble hearing, like in a noisy environment somebody speaking. Or indeed whilst I’m writing this.

[_Barnabas in reply to Maxi80]

No it never goes away but you learn to forget that it is there.

[Happyrosie in reply to Maxi80]

Whether you have an emotional response to it is probably down to your personality.

[bantams in reply to Maxi80]

Hi Maxi80, Yes I agree with what you say about habituating is just about getting used to it and not annoying you as much, as it will never go away.

[wish2heal in reply to bantams]

Hi Max , It is a constant challenge . I have been suffering now 3 years. I’m very active person, jogging , gym, good circle of friends. How many times I have convinced myself , oh yes finally I have manage to live with it. But it always brings to that point again where I feel so helpless and desperate and not willing to live . And constant struggle starts againWish you and everyone well 🙏🏼🙏🏼

[Xene]

Acceptance

Nicu09

Nicu09•

2 years ago•12 Replies

Hi

I haven’t posted on here for a long time, over a year I think. I wanted to try to completely blank out my severe tinnitus, in the hope that not talking about it or thinking about it might allow me to habituate more

Unfortunately that didn’t work, I’ve had it now for over 2 years and over time it had just increased in severity gradually. It has robbed me of the many relaxing times I used to enjoy. For example I was a keen rambler, used to go walking all over England enjoying the stunning peaceful countryside listening to the birds and the wind blowing and trees rustling. It used to be so lovely. I don’t do that anymore as I can’t enjoy the peace and quiet of the Yorkshire dales or the Peak District due to my world being disrupted with extemly high pitched loud hissing combined with even louder buzzing, humming sounds that echo throughout my head. Nothing masks the high pitched screaming that resonates 24/7 in my head and the quieter the environment the louder it becomes so the peace and quiet of the beautiful outdoors is now lost

Other enjoyments that Iv lost are things like reading a book. Nothing nicer than curling up with a good book and relaxing. I could only do this if I had The Tv on full volume or loud sound therapy blarting out in order to attempt to slightly mask the sounds in my head. This defeats the object of the enjoyment, I also no longer enjoy my garden which used to provide a lovely peaceful oasis on a summer day but is now an area where it just serves to heighten the tortuous noise that blasts down my ears and echoes through my head in short tinnitus takes away any relaxation method whatsoever relaxation for me means peace and quiet and tranquility and that disappeared long ago

Yes tinnitus has taken a lot from me and it makes me so angry some days, what makes me angrier though is the suggestion that if you stress it will become worse. NO IT WONT. Tinnitus is a real physical condition it is not psycho - sematic and is not dictated by ones mental outlook. The suggestion that if you chill and relax ( which in itself is impossible) you will habituate and the tinnitus will get better simply isn’t true. Tinnitus creates stress, stress DOES NOT create tinnitus. There are so many suggestions that tinnitus can be helped or made worse by ones state of mind. If you’re tinnitus suddenly gets worse it is a real physiological deterioration in your condition not an imagined interpretation to stress or anxiety. If you had for example a chronic ailment with your eyes or throat or kidneys even, and it became worse you wouldn’t put it down to anxiety you would recognise it as a physiological change for the worse in your condition. This is the same with tinnitus. To relate tinnitus with anxiety, stress depression trivialises it to the medical world and I believe as such this is one of the reasons it has a very low profile, has little research invested into it, and very few specialist minds interested enough. Because tinnitus is not generally painful, doesn’t kill you ( other than by suicide) can’t be seen or x rayed or scanned (unless of course underlying cause is identified) then it is not viewed as warranting much intervention or recognised as the devastating debilitating condition that destroys lives instead it is far easier to link it anxiety and suggest that ones mental state or outlook can control it or effect it I can absolutely categorically state that my anxiety levels (or lack of) have never ever impacted on my tinnitus level my tinnitus has grown worse over time, it is completely beyond my control, it is independent of how happy sad angry frustrated I am feeling. it’s deterioration over time has resulted from the progression of a chronic physical ailment nothing more

Over time I have tried it all, hearing aids tinnitus maskers sound therapy, ENT consultants etc yet it continues to worsen. I am accepting of it now, there is nothing that is going to remove it so I have to accept that this constant racket through my brain is part of me , I have accepted that enjoyable pastimes have gone and won’t be enjoyed again, I accept that the word “relax “ will always have a very different meaning to me than to others I accept that my once lovely life is now a very different one a darker one and a sadder one. However im alive, living this life waking each day and going through the motions I suggested to my ENT consultant that I have both my auditory nerves surgically severed as complete deafness would be preferable to this but he explained this wasn’t an option as the tinnitus may still continue. once told that I then quickly came to realize that the only option that may help me slightly was to give up searching for an end to it, to stop discussing it, to try and stop thinking about it and just reach a state of acceptance This is what I have done hence why I haven’t posted on here for so long. has it made my tinnitus better?? Absolutely not. it continues to wreak havoc throughout my head every hour of every day but at least I no longer waste energy searching for treatments or therapies that will take it away I just accept that my life is different now

So in short I just want to say that whilst tinnitus isn’t recognised or described as a disease as such it behaves in exactly the same way in terms of its impact on lives but please please avoid linking it to anxiety/stress as this is not helping its recognition as a chronic physiological ailment that is crying out for research and funding to pursue progress towards treatment. it is not psycho-sematic it is not caused or made worse by stress, it acts independently due to its chronic pathological progress. “mind over matter” theories are only serving to demean this dreadful ailment in the eyes of the medical world and the public in general which is not going to help any of us

To people with long term severe tinnitus like myself Accept that you have a long term chronic condition that is a physical and real condition for which there is currently no cure and little in the way of treatment. If it should become worse it is not made worse by your stress levels, it is not because you are anxious or depressed it is because your condition had worsened. Oh yes you may very well feel anxious or stressed but remember it’s your tinnitus that is responsible for that and NOT the other way around

I wish everyone all the best and hope that you can all gradually move towards acceptance as I have once you do accept at least you can attempt to move on with life, just knowing it will be a different one. one in which a part of you will always grieve the lovely things of the quiet relaxing and peaceful life that you once took so for granted.

Yay Maxi80, hope this might help maybe, maybe not! Personally I feel acceptance goes a long way to help but we are all different.

Best wishes

Xene

[rabbits65 in reply to Xene]

Dear Xene,Hi , my name is Penny

What an absolute excellent

post , very well put and said.

I have severe tinnitus since

last March and my daughter

keeps saying to me , mum you’ve

got stress, I tell her “ no” it’s not.

How good to read that you agree

with me . Alongside all the noise

in my head I also have extreme build up of pressure continuously . I’m so pleased that I am not alone . I hope you get to read my reply to you as your excellent post has helped me at least put my mind at rest , thank you

Take care

[Xene in reply to rabbits65]

Yay Penny, unfortunately I cannot take the credit for writing that post as it was written by another member Nicu09 two years ago although I could totally relate to it and still do. I thought it might help Maxi80 but I appreciate that T is unique to the person that experiences and perceives it. I've had my T extremely loud 24/7 for over 30 years now and hard as it maybe to read for some new to T imo acceptance can go a long way to help deal with it but I am only a small fish in a big pond and people will either agree or disagree and that is their choice. Once you've been down the medical route and checked there are no medical underlying causes and tried all the usual possible remedies that help many I found that I had to learn to get on with it. I hope you manage to find some relief for your T and the build up of pressure in your head. Always try to remain optimistic as sometimes that's all we have.

Best wishes

Xene

[rabbits65 in reply to Xene]

XeneHow kind of you to write back again to me. What a great comfort this is to read at 7.15 this morning. I’m in the U.K. I take it you might be in the USA as you wrote your reply about 4am British time.

Can I just say that what really concerns me the most is my noise going on in my head really does frighten me and I feel the pressure is going to explode. I paid nearly 1000 pounds to see a private ent specialist and mri scan , which came back clear . I then went on to have a CT scan fortunately on the NHS that time. All came back clear. Anyway I am very scared and it feels very isolating my head trapped in this almost electrical fan oven noise description.

I wish you very well and also it will help if this Corona virus would go away for everyone .

Bye . From Penny. rabbits65

[bridgeit in reply to rabbits65]

Hi Penny, I read your post with empathy and interest. This is just a quick reply to suggest, if you haven't already, that it might be worth looking up "intracranial hypertension" online to see if your symptoms fit the general pattern described.

Read on if this is new to you.......

If you feel that this condition might be what's happening to you, I recommend that you obtain a referral to a neurosurgeon so that s/he can refer you for a comprehensive MRI/venogram of your head/neck which takes about 45mins to complete. Any less time in the MRI scanner and it isn't the correct type of blood flow scan. Make sure the referring specialist sends the scan on directly to a specialist interventional neuro-radiologist for examination of the results, particularly focusing on the internal jugular vein/sinus outflow from your head to see if there's any blockage/signs of intracranial hypertension. This is a rare and often missed condition. Accurate diagnosis requires a particular type of scan and the radiologist has to know what to look for to find the problems. Many simply don't know enough to identify this condition and often the scan is too basic anyway to pick up the problem. The 'pressure' you sense is a big clue about what might be happening inside your head. A blood coagulopathy test might also be worthwhile, if not already done.

Be advised that if a cranial high pressure problem is found, intervention treatment from this point on may be available privately but may not be available on the NHS, although some kind of medication may be offered to you.

Good luck to you!

[Maxi80 in reply to bridgeit]

Hi guys. Could you possibly start a new post as I’m missing the messages that are meant for me. Thanks.

[rabbits65 in reply to bridgeit]

Bridgeit Thankyou for your reply regarding intracranial hypertension . Gosh sounds quite complicated. I will look into this , thank you . Your very knowledgable , it’s interesting too how we end up sometimes having more information to our fingertips than the doctors. I must say I read your post with great interest.

Thank you very much

[moi_itou in reply to rabbits65]

Hi! ... Penny. rabbits65,

... another rare and often missed condition: ... '' Paroxysmal_staccato_tinnitus_A_carbamazepine_responsive_hyperactivity_dysfunction_symptom_of_the_eighth_cranial_nerve ''

researchgate.net/publicatio...

Bye!

[rabbits65 in reply to moi_itou]

Thank you for your help, very kind of you .

[Xene in reply to rabbits65]

Yay Penny, No I'm in the UK just don't sleep at night so I just go with the flow and sleep when I can. You seem to have had some very interesting comments to look into. I find it interesting that sometimes you can learn more on here than some of the so called experts! I do hope that eventually you manage to get some answers for the pressure in your head as living in fear is not good for your overall health and can trigger other health issues! Look after yourself and take care. In the face of adversity fight on!

Best wishes

Xene

[rabbits65 in reply to Xene]

Good evening Xene,Thanks once again, I have always believed deep down that there is more to my tinnitus . You have taken more interest than anyone I know. It’s difficult today to get much help when we are going through such difficult times with this Covid , but I will keep going. I’m sorry your having difficulty sleeping. Mine is poor sleep too and I snatch a couple of hours sleep here and there . This site has been very supportive , I am 68 years old and it’s a bit late in my life to suddenly be facing all this head/ear trauma. I will just have to keep going like all of us do . Please keep in touch, from Penny. rabbits65