Frustrated!! : Hello Everyone I have... - British Tinnitus ...

British Tinnitus Association
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Frustrated!!

Pepper2020
Pepper2020

Hello Everyone

I have just joined this group today as desperate to talk to people with the same problem I am having.

I started suddenly with unilateral tinnitus about 7 months ago after seeing gp and explaining that I was also having headaches previous to this with slight unexplained Nausea and a feeling of being off balance and my ears felt full and blocked, I was sent to ENT, the consultant was not in the least interested in anything other than the tinnitus but sent me for MRI, the result was clear (big relief!!) however I have now been referred to Audiology and for Tinnitus Therapy, whatever that is?

I am glad something is finally getting done as the tinnitus is unbearable sometimes, but I'm still concerned about the other symptoms. Nighttime is the worst as I also get a strange feeling that my whole head is pulsating and it goes through my whole body like a fever, a good night's sleep is a distant memory!!

Has anyone else had these symptoms with tinnitus? Is it normal how I'm feeling?

It's effecting my whole life, but feel no one will take me seriously.

Any advice would be greatly appreciated as feeling quite isolated

14 Replies
oldestnewest

Yes i have all of that and numerous scans,exhaustive tests ENT,private consultants the lot,all suggest nothing wrong.I do have hearing loss which is a factor,so wear hearing aids with ‘white noise’ masking,helps a little.

I now have to deal with it with anti depressants that do help me sleep,anxiety ‘diazepam’ helps but get less effective over time.

I use nature sounds,rain/babbling brook etc through ear pods help me sleep.

Its a horrible illness but you find ways over time.

Pepper2020
Pepper2020
in reply to Lioned

Thanks for your comments, its nice to know I can share my concerns with people who understand.

I already try to sleep with natural white noise sounds of the sea, which does help to some extent, but it doesn't help with the strange feeling in my head when lying down.

I too have been told I have hearing loss, although at first did not belive it, but over last few months have noticed I am saying pardon a hell of a lot!!

Here's hoping the Audiology department can be of help, I would never have thought this would make me feel so horrible.

Thanks again

Hi. I have had one sided T. now for a couple of years. Same as you all they were interested is was looking for a neuroma. I also have some light headedness and giddiness. I have been to private ENT and Dublin to see the Neuromod folk. Dublin suggested sound therapy first. It made my T. worse. Frankly it is very hard to find anybody who is interested in helping, the folk in Dublin were easily the most knowledgeable . I personally am waiting until there is a body of evidence for Neuromod before going forward with it. Has your consultant definitely ruled out Ménière's?

Yes I get the same symptoms, headaches, nausea and dizzy, with the feeling that the room moves a millisecond after I do! I've had it for a few years now. Don't give up! I think you should go to the Tinnitus therapy, I was given hearing aids which help a little but at least you know that you are not alone.

Some similarities to my T story. I started to have occasional loss of balance/dizziness and then started to get headaches before having flu like symptoms followed by T. Dizziness, headaches & flu thing all went away, unfortunately T remained. That was almost 19 years ago. Didn't think for a minute that I would put up with T for that long.

You're not alone, and at least you have found some methods to help. I've had my pulsatile tinnitus over a year now in my right side. I can't get any sleep and sleeping tablets don't have any effect. If I do manage to get any sleep it wakes me up. During the day it's annoying but I find listening to music helps and sometimes this temporarily stops it, even if it takes 3 hours.

It was all following some wax in my ear and after it was removed over 2 weeks using olive oil I had a range of the problems you've described. I still get a few of these with unbalanced pressure in my ears and bad headaches.

I've tried white noise apps but they don't help due to my throbbing sounds not being a constant drone and the apps don't go deep enough soundwise.

I've been to ENT and had a hearing test which was fine and got MRI scan to look for neuroma but nothing was found and my hearing is ok but I was made to feel really belittled by the doctor and just essentially told to put up with it and not get stressed (as I had been 6 months beforehand).

I've just gone back to my doctor to get referred to a different hospital preferably one that knows about pulsatile tinnitus as it is different. Again hearing test confirms ok within speech range and I've requested an MRA to check blood vessels in my ear as pulsatile tinnitus is often caused by underlying problems. Scan is coming up at end of the month so I'll post if anything found or suggested in case useful to anyone else. Also getting referred as I have TMJ issues jaw pain which often refers headaches and toothache as that doesn't help and sometimes it can set it off but personally I don't think it has caused it.

Don't be afraid to go back for other tests, especially not if it's pulsatile tinnitus as many people have suffered for years and then been cured after operations from different scans showing blood vessel problems.

Gwynydd
Gwynydd
in reply to Destructor

Following hearing loss and a heartbeat in my right ear only at night and a feeling of fullness in the ear; saw a number of specialists and had all the tests. During that time it went away for a month. I did everything, sucked Jacksons Lozenges, sniffed Olbas oil, used earplugs surface only and Nasonex which helped my Rihinitis only in my right nostril. All the specialists were kind. Finally I saw someone who said I was wonky (teeth not aligned) and said see your dentist. I had a chronic infection and had the tooth removed. Since the last week in May 2019 the noise has gone away. I still feel a slight fullness and I am aware that my jaw is not perfect but I do believe that I am not unique and others may benefit from my experience. I did not need to habituate and just needed a solution. I have now been noise free for over seven months and pray this will be forever.

Pepper2020
Pepper2020
in reply to Gwynydd

That's Intersting, I suffer with a stiff painfull neck with pain going into the back of my head all on same side as T. some times I can even see my neck pulsing especially when my ears feel full. I have read that neck and artery problems can lead to T, so thought I might go and see a chiropractor. What do you think?

Gwynydd
Gwynydd
in reply to Pepper2020

I tried everything to help myself. I have a head and neck massage every month and always feel good afterwards. Its worth a try. Find a good chiropractor or someone who is good at massage. I first met mine at Nuffield when she was doing sports massage,

Destructor
Destructor
in reply to Gwynydd

Brilliant! I pray that it doesn't return

Thank you all for your replies and comments, it's such a relief to hear from people in similar situations, and I don't meen that in a bad way!!

I have had only one meeting with the ent consultant, who couldn't get me out fast enough and would not let me speak, it was a case of I have tinnitus will send me for mri and know that the results have come back clear I am packed off to the audiology department!! no one has discussed the possibility of other causes or asked about the other symptoms.!!

I am hoping audiology will help.

I am pushing for another appointment with the consultant but not holding out much hope!

Thanks again and good luck to you all in your endeavours against the T x

I know how you feel. I have been going through the same thing. I too had an MRI where they said I have an artery that courses very close to the 7th and 8th cranial nerve. Sent me to a neurosurgeon who said it was normal "for me" and should not be causing my symptoms. I find it very difficult to sleep and being is quiets rooms. I pray for silence. This has been going on for just over a year. I can tell you, it has become less stressful knowing its not going to kill me. I have a noise machine in the bedroom and take it with me when traveling.

I really hope you feel better and believe me you will find peace. If you'd like to talk more its ginnymginny@hotmail.com

I developed tinnitus after botched hopi ear candling 10 years ago, up to 2 or 3 years ago I was with the NHS, and managing it, then it got worse, and I decided to go to the private Tinnitus Clinic, their hearing aids helped for a couple of years but the T has got louder, and I'm hearing it all the time, already on medication for anxiety and depression, and this has made it a whole lot worse. It is tonal T so probably not as irritating as pulsatile, but irritating and relentless, just the same. when I was with the NHS at the ~ENT hospital, Grays inn road London, I put my name down for tinnitus therapy several times, and it was never followed up, maybe I didn't pester them enough, or shout loud enough. Does anyone know of anywhere in the London region where I can get tinnitus therapy?

p.s. the raised volume of the T was concurrent with the onset of headaches and nausea, usually earlier in the day, I am in my 70s and feeling it at the moment. Think I may have an ongoing virus, just don't know.

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