Tinnitus

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Tinnitus

Postby Brimstone » Tue Feb 23, 2010 1:49 am

Can anyone who suffers from Tinnitus please describe what happens? I know it is hearing sounds like ringing or buzzing inside the head but I would be interested to learn some specifics. Is it constant and if not does it occur at any particular time of day, whether you are indoors or out, or during any particular activity? Is it always the same kind of sound or does it vary – buzzing one day, ringing the next? Always the same volume or does that vary also?

Gill (gillshutt) I think you mentioned you experience this a lot. I’m sure it must be maddening. The nearest I’ve come to it was when I could hear a mild sound like the wind whistling in my head, usually in the quiet of the night. That was many years ago and I knew that such a sound could be the harbinger of a brain tumor but fortunately it went away. I’m not suggesting that when linked to FM it has this implication, but just for the record did anyone's doctor recommend a brain scan?

I’ll explain my interest in this later, but I’d just like to fill in some details first. Thanks.
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Re: Tinnitus

Postby gillshutt » Tue Feb 23, 2010 7:56 am

I have tinnitus 24/7 I get a constant high pitched whine in both ears which is like an old fashioned radio not tuned in. I also get clicks and bird noises and sometimes I get a noise like an ambulance siren but a long way away. I've learnt to live with it really. It's louder when I'm tired or in a flare... but every day it's loud enough to interfer with my hearing. I've been checked for Menieres as I also get balance problems but they say I'm fine and my hearing is great :?

I have had 3 MRI scans and 2 CT scans and my brain is fine, also my neck and spinal column are ok too. I'm just glad they found a brain at all! :lol:
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Re: Tinnitus

Postby little_mima » Tue Feb 23, 2010 12:32 pm

I get it, but I've also got TMJD which can cause it as well. Makes sense, considering the ringing gets worse when I click more.
Mine is a high pitched ringing, almost like when you turn music up too loud on the high notes.
Gill, how did you learn to live with it? Is it just one of those things you get used to? I've complained about it a few times and it just gets shrugged off.
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Re: Tinnitus

Postby wanda » Tue Feb 23, 2010 12:43 pm

Hi All

All my problems started with this. I felt like my ears where full and that everything was really loud. I was tested and told had menieres and that i had lost some hearing in left ear and was the cause of my balance. On check up I was told that it couldnt be menieres as i would not have it every day at different times and again that it wouldnt affect my balance as many times as it did. I was discharged. I was crying my eyes out as having a really loud roar in your ears 24 - 7 is a nightmare . On top of that high pitched noises are unbearable, really bassey like hard garage bands too. I can hear people talking 3 shops away and people cant believe that. I also shout a lot apparantly because everything sounds so loud i shout over it. This is my biggest bug bear as i have a child and shout at him and my friend and in the playground. Its starting to make me want to stay in as i get really stressed and then the adrenalin kicks in so feel like my heart is going to explode. Then after 15 minutes i feel faint, then i have the runs. This has been going on for 2 and half years and have to say i have felt pretty bad. I have read a few stories of people killing themselves with this ailment. I am not surprised its unbearable on top of all the pains, paralysis,sleep dep, etc etc.
Hope this helps- Its difficult to plan life- i cannot drink in Cafe Nero, Starbucks, Costa as the coffee machines set it off - background music- patterned floors- people chatting- Its making me feel sick thinking about it.
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Re: Tinnitus

Postby *Lisa* » Tue Feb 23, 2010 12:59 pm

If my neck & jaw are very stiff this can trigger the tinnitus as it restricts the blood flow...

I also get a pulsating tinnitus like a pounding heart beat/wooshing sound.

I can also have restricted hearing beacause if the stiffness.

I wear a mouth guard and have physio plus the odd hopi candle to help stop this
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Re: Tinnitus

Postby gillshutt » Tue Feb 23, 2010 3:02 pm

Learning to live with it? I don't know, I listen to mine... I know that sounds weird but I found that if I tried to block it out I would get stressed and angry... especially at bedtime when it's quiet so the tinnitus sounds a lot louder.

I would try and ignore it but it refused to shut up and, a bit like noise coming from outside, you start getting very annoyed and there's nothing you can do about it so... I listen to it, try and see if it's different in each ear or... when I get the dawn chorus try and see if I can tell what birds it is etc, that way I don't get stressed.
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Re: Tinnitus

Postby Brimstone » Wed Feb 24, 2010 2:46 am

Thanks everyone for that. My heart goes out to all of you. Wanda, that long description must have been quite an effort. Gill, your brain is definitely there and working well judging by your clear and analytical observations in some of your posts. Ever thought of becoming a computer programmer? :)

I was interested in this topic because I was toying with the idea that what you all perceive as hearing is in fact smell or taste or some other sense. Let me explain. As humans diverged from our animal forbears our sense of smell declined. The upside is that we no longer feel the need to pee all over the place to mark out our territories, or on our hands like bushbabies to establish our credentials as we swing through the trees! The downside is that we can no longer differentiate the subtle differences in smells or are aware of all those around us.

I think we have reasonably established that FM causes the system, which almost certainly means the subconscious part of the brain, to go into alert mode against perceived dangers. (I’d like to go into this a lot in another topic if you’ll allow me.) My proposition is that, knowing that the sense of smell is not too bright, the brain rewires itself to redirect those incoming olfactory sensory impulses. Instead of processing them with its own smell decoders it does so with its hearing decoders. The purpose is to make the most of perceived danger signals coming in from the environment. I use the example of smell, but it could be sensory input from taste or touch. (Sight is unlikely because then you would just have to close your eyes to make the Tinnitus go away.)

If you feel that this sounds far-fetched, I would point out that this is exactly the effect a psychedelic drug like LSD has. LSD acts on the higher part of the brain to allow the taker to hear the sounds of colours or smell music leaving other functions like walking unaffected.

Remember also that when we have a heavy cold we can’t appreciate the taste of food as much, because the senses of taste and smell are so closely linked, so why not hearing as well when something goes wrong.

Some of you may also be familiar with the experiment where the subject is made to wear goggles that invert everything. Within a couple of days the brain corrects this effect and the subject starts to see everything the right way up again. Then when the goggles are removed the subject sees everything inverted again, until the brain goes back to normal. We cannot underestimate what the subconscious part of our brain is capable of doing!

OK, for now can I ask you to be aware of any other senses that might be translated into sound. Experiment a little. Wear a clothespeg on your nose for a few hours to cut off any smells. I notice many of you have pets. ‘But my pets don’t smell!’ do I hear you cry with indignation? Believe me they do and even if you can’t perceive any smells they are there and your subconscious will pick them up. Does eating make any difference? Experiment with tastes, gargle with hot salt water or rub your skin and see if that has any effect.

If there’s no change then it’s back to the drawing board for me and no harm done.

Good luck

PS By the way did you know that there is an equivalent to Tinnitus in smell? It’s called olfactory hallucination or Phantosmia, and is when someone can smell a smell that isn't there. It's generally linked to brain damage or psychosis though, not autoimmuniy.
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Re: Tinnitus

Postby gillshutt » Wed Feb 24, 2010 11:23 am

Smelling things that aren't there seems to happen to a few FMers as well.

Devil's advocate here...

I would have thought that if t was conected to smell or taste then when we had a cold it would go away or change in some way. I also can't see how being tired would make it louder which it does if it was taste or smell... if anything it would get quieter. Also, when you ate something strong, like when you have a cough sweet or hot chilli it alters your sense of taste/smell and numbs it but it makes no difference to the tinnitus.

Again... why would it translate another sense as the same noise constantly? Taste, smell, touch etc are all changing constantly so wouldn't it translate the differences as different noises?
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Re: Tinnitus

Postby deborah123 » Wed Feb 24, 2010 1:05 pm

hi everyone..iv had tinnitus from i was a child,,all the women in my family have it?my mum and 3 sisters,yet my 2 girls dont seem to have it..thankgoodness!...but i notice that mine gets very very loud and bad when i take medication???..mostly when i take painkillers,and it doesnt matter what type?they all seem to make it worse...does anyone else have this problem?..i also have hearing loss in both ears and have hearing aid for my left ear.was told my loss is from having so many ear infections when i was a child.witch is something i am still getting,as past 2 weeks now iv been on antibiocts for sore ear..cracking me up as tabs run out today and its feeling much worse again from yesterday and i dont want to have to end up taking anymore anti's as i dont feel there good for u....sorry everyone i seem to have gone of the subject.lol..opps...rambling on here.. :crazy: ...deborah xo :grouphug:
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Re: Tinnitus

Postby Mr.A » Wed Feb 24, 2010 1:21 pm

Brimstone wrote:I was interested in this topic because I was toying with the idea that what you all perceive as hearing is in fact smell or taste or some other sense.


Isn't that Synesthesia?
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Re: Tinnitus

Postby gillshutt » Wed Feb 24, 2010 8:46 pm

Yes it is synthesthesia which is why it doesn't make sense for the tinnitus as your brain would interpret different things as different sounds not as the same constant sound and, when there wasn't a stimulus it would turn off.
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Re: Tinnitus

Postby Brimstone » Thu Feb 25, 2010 2:05 am

Gill, you should play devil’s advocate as much as you want. You have brought up some valid points and it’s important that any doubts in your mind are dispelled.

Experiments show that without the sense of smell, taste loses its potency, so it’s mainly down to smell. I don’t think the loss of smell when you have a cold is due to the sensors in your nostrils ceasing to work. That part of smelling is a fairly straightforward process of receptor cells in the nostrils sending impulses further along the chain. (Receptor cells are highly specialized and each cell is designed to process only one type of smell, the output from the same smell cell types converging in the next link of the chain.) The final interpretation (and mixing) of the various smell impulses takes place in the brain cortex from where the sensation of smell is conveyed to the conscious mind (and to memory).

The loss of sensation during a cold is more likely to be because the subconscious brain has decided to shut down the processing centres for those relatively unimportant impulses because it has more important things to deal with i.e. the cold infection.

With Tinnitus, cold or not, I’m proposing that the subconscious brain still continues to monitor the smell types it has already labelled as suspect or dangerous, processing them as sound because its processing centres for sound are more developed. In your case, these smells may always be present, like formaldehyde or pet smells or whatever may be causing it, creating a sort of unchanging white noise in your head. And don’t forget that smells linger a lot, even when the source of the smell has gone, suggesting that the receptor cells continue to fire. That’s why to test this out one would have to block all smells for several hours.

I was interested to learn it tends to be the same kind of sound, but not too surprised. In fact I should have predicted this. Since the hearing processing area in the cortex is handling a type of input that’s not what it is designed for (i.e. smell), the best it can do is translate it into a sound that it probably borrows from your memory bank that you associate with an alarm. Hence the ambulance siren, and when you were very little you could have heard the whine from a radio that alarmed you. It’s like if a group of people spoke to you in many different languages, the best you could do was pick up on their mood rather than what each individual was saying. (Sorry, it’s late and I can’t think of a better analogy right now.)

Your point on tiredness is also very relevant. Tiredness that’s not a result of heavy physical exercise is due to the body not creating enough ATP, the stuff that is the cellular energy source. My hypothesis here is that the subconscious has detected a higher threat level (you’ll have to work out what that is for yourself) and by cutting the production of ATP is forcing you to retreat and take shelter. (Think cave woman!) At the same time it is enhancing your defensive sensory perceptions (in Tinnitus sufferers it’s hearing). This enhancing would also account for the acute hearing experienced by Wanda and others.

One of the things I’m picking up from my research is that a sufferer understanding how FM works has been known to help ease the pain. That’s why I’m presenting you with all the possibilities. It is for each of you to consider them and say, yes this could be what’s happening to me, or not. But it’s important to not close your mind to any possibilities because the solutions are unlikely to be simple or orthodox. If they were they would have been discovered long ago. Sometimes they may even be downright inconvenient!

Very soon I’m hoping to start presenting the Forum with some ideas that need an open-minded approach. My problem is how to present them in postings. My detailed analysis is already almost at 3000 words!
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Re: Tinnitus

Postby wanda » Thu Feb 25, 2010 12:30 pm

Hey Deborah

I cannot take nurofen, painkillers, etc. They really do make my ears worse than ever. mines all started after I had operation, so anasthetic, blood transfusion, then infection 5 lots of anti biotics then got shingles and secondary chicken pox so got anti virals, this is when my ears exploded and i have told every doc the same, they just dont listen. So every time i get a prescription I am like- aargh they dont agree with me.

I have been taking calms.Anyway for about 2 months i forgot to take my calms and the ears been worse. They are also helping sleep, not any better but a bit longer before all the crap kicks in with paralysis and nightmares etc etc.

Hope this helps, when i get hormonal though everything really goes off the rictar scale
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Re: Tinnitus

Postby FluppyPuffy » Thu Feb 25, 2010 1:02 pm

wanda wrote:Hi All

All my problems started with this. I felt like my ears where full and that everything was really loud. I was tested and told had menieres and that i had lost some hearing in left ear and was the cause of my balance. On check up I was told that it couldnt be menieres as i would not have it every day at different times and again that it wouldnt affect my balance as many times as it did. I was discharged. I was crying my eyes out as having a really loud roar in your ears 24 - 7 is a nightmare . On top of that high pitched noises are unbearable, really bassey like hard garage bands too. I can hear people talking 3 shops away and people cant believe that. I also shout a lot apparantly because everything sounds so loud i shout over it.


This is very very similar to how things started for me as well. I had repeated tests for menieres, but it was only when the audiologist that did my initial test came in and remembered me that the dx was finally deemed to be the wrong one. I constantly suffer with it, my noise sounds like the static noise from a badly tuned tv or radio (always makes me think of the scene from poltergeist when carol-ann announces "they're here!!!) and makes going anywhere an absolute nightmare :x As a distraction I always have either the tv or some music in the background, at least it stops me dwelling on it quite as much.
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Re: Tinnitus

Postby lorna07 » Thu Feb 25, 2010 4:07 pm

Hi Brimstone,

I have been suffering from Tinnitus for 7 years at a level I could cope with. The doctors in ENT tell you there is no cure and that you just have to live with it! In November, the volume of the Tinnintus in my left ear became much, much louder and I thought I was going to go out of my mind. The sound I hear is a high-pitched noise which is there constantly 24/7. Many years ago when the television closed down at night and the screen went black they played a high-pitched noise to warn you that your TV was still switched on - mine is the same sound.

There are different sounds that people hear and with some people they come and go. You can listen to a sample of these sounds on an internet Tinnitus site - it might be the British Tinnitus Assocition site.

There is a lack of awareness in the health service with Tinnitus. I was so distressed in November that I phoned the RNID (Institiute for the Deaf) to see if they could help me (suicide had crossed my mind). They put me in touch with the only support group in Scotland and I phoned the contact number. I spoke to a woman called Betty and she was wonderful. She told me that Tinnitus clinics were opening up around the country and sent me the details to take to my GP. I had been to ENT in a Glasgow hospital in January last year but a Tinnitus clinic had since opened at the Royal Infirmary in Glasgow and my GP referred me there. He was totally unaware that such a place existed!

I attended the clinic on 12th February and they checked my hearing to make sure there was no sign of a tumour or blockage (which in rare cases can be the cause of Tinnitus). They have given me a sound machine to play at night to help me get to sleep and to use when it is quiet/trying to read. The idea is to train the brain to listen to that noise rather than the noise from the Tinnitus. You have a choice of sounds i.e. waves, birds, stream, heart-beat etc. I have an appointment to see a specialist in a few weeks time and if this isn't helping they have other things to try. The doctor explained that it is really important that GPs know that these clinics are there and that anyone suffering from tinnitus should be referred to them. In the meantime I now have the support group to lean on and they have meetings every two months or so. Gradually I am finding that I am coping better.
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