Please Help Me — I Can't Cope!

Hi there. I'm in such a terrible state. I cannot cope anymore. It's affecting my whole life.
I've had tinnitus for years and years. (Doctor said too louder music and going to gigs) and I've had ear infections since I was knee high. They all seemed to clear up and then in my teenage years the tinnitus started which I've always managed to cope with quite easily. I've been able to know what causes it to get worse and could manage it.

About 5 years ago I had quite a serious operation for a cholesteatoma (I think that's the correct spelling). It's quite unusual for someone who was 25 at the time and took an age to get diagnosed. The operation was successful, although a shambles, and almost complete hearing was restored in that ear. The tinnitus was slightly worse but not so bad. I've had no infections or problems since then really. A couple of scares about the tumour returning but MRI scans were done and found nothing.

In the past 6 months I've started to experience pulsation tinnitus and it has gradually got worse and worse....I don't know where to start!!!

I get a few days where I feel like I have an ear infections coming on. To the point where my jaw aches and I feel like my glands are swollen. The pulsing is worse and I get discharge.

Then nothing happens and it disappears. This happens about once or twice a month. I have a constant feeling of 'something in my ear' like a feather or hair tickling. And this is how I felt before I was diagnosed with the rumour so you can imagine the stress...particularly as no one believed me the first time!

I have been to gp and referred to a ' very good' local specialist in ENT. All tests were run because of my previous condition. MRI, CT and blood tests for thyroid and diabetes.

All came back clear. My hearing test was the same level it was after my op.

The doc said he would see me back to discuss but instead sent me a letter saying he has discharged me as nothing he can do and referred to audiology for help with it, although 3 months on I still haven't heard anything from them.

The pt is constant however and getting worse. I can't zone it out AT all. The only relief I get is while at work, driving around and visiting customers. As soon as I get home I'm in utter despair again. The to doesn't cover it anymore. I can sit and watch tv in the evening at a fairly loud level (I have surround sound too) and I can still hear it over everything.

I go to sleep and it's there, I wake up in the morning and boom, it's there and I can't get back to sleep. I can wake at 2am and it kicks in (I don't know if it's the cause of me waking) and I cannot get back to sleep! I have a headache all the time, I'm constantly tired and miserable!

I just can't take it anymore...the sound therapy is all well and good when you're trying to sleep but what about when I'm sat in the evening with my partner watching to. All I want to do is sleep because it's the only way I know to make it stop. My partner sees how unhappy I am, I try my hardest to forget about it and try to be normal. In only 30 and to be told I have to just 'cope' is just unacceptable to me! Id rather have the whole lot ripped out of my ear and be stone deaf in that ear than continue like this! I'm crying as I'm writing this as it really is changing my life and making me so so unhappy. It feels like I have nowhere else to turn. Someone somewhere must be able to help me! I do t want a magic wand waved I just want someone to understand and try and help.

Is there an op I can have to have my hearing essentially cut off and remove the or?!? I'm that desperate.

I'm sorry to go on.

 

I'm by no means an expert on Pulsatile Tinnitus but I'm sure someone here more knowledgeable will be along soon.Dont despair and find a neurologist who actually wants to help you.I recently read a story online of a man so desperate with Pulsatile Tinnitus that he sent all his scans to a neurologist in America.His doctors had given up on him but the neurologist was able to detect exactly where his problem lied and forward it back to his doctors.The man has since been relieved of his Tinnitus.Im not good at posting links so maybe someone else will but it's a very interesting read.Dont give up yet,your first port of call is finding someone who genuinely wants to help you.
Best Wishes
Bill.

 

Search"Man on verge of suicide with Tinnitus finds his own cure"on Google.
It's on the Daily Mails web page.

 

Removing your ear is a probably a bad move. There is a good chance you will notice your tinnitus more. Having no ear equals less external auditory input - less masking that is.
Van Gogh had a similar idea, look how he ended up.

 

I meant the hearing, not the ear...I have read the article and sent an email to the doctors surgery. I dont hold out much hope but it's a start. Thank you

 

Never give up hope Short cut
The man in the story had nearly given up but hope and a lot of work got him what he wanted,relief.I'm not saying it's going to pan out the same way but who knows,maybe the next doc you see will be the one to help you

 

Uh, that's even worse.
That would mean zero auditory input = all you would hear is your tinnitus.
If you plan on embarking on such uncertain waters, you have to make sure that your tinnitus originates 100% from the ear and not your brain or any vascular or somatic origin.
And as far as I know, there is no test that detects the precise source of one's tinnitus.
Plus you'll be deaf for life, cutting the auditory/vestibular nerve means there's no re-attaching it, even if a cure for tinnitus is ever found.

 

Cut your auditory nerve and you will be deaf in that ear and you would still here your tinnitus. No doctor or surgeon in there right mind would do that. Complete madness even thinking of doing this.

 

Tinnitus - The Loud Silence

 

Hi @Shortcut69797 ,
I understand what you went through with your operation as my son had the same problem when was 7 and had a mass and ear bones taken out and a new drum and when he was 16 needed a mass removed again and a new drum.
He is 21 now and just had another MRI and CAT scan done.
His hearing in that ear is 40db.

If you have any hearing loss you might be picking your pulse up from your carotid artery that's right by your ear.
A masker or hearing aid might help you....lots of love glynis

 

Really? Why has No one mentioned this as an option? I just want to to go away. I'm not fussed about wearing a hearing aid or whatever, I just want it gone. I cannot cope! The bones in my ear had all been eaten away and were rebuilt using cartlidge and skin from my ear probably just like your son. I've never met anyone else who has had that op before.
I was under the leading ENT in the area but he doesn't really seem to take it seriously even though every time I go in there I end up in tears when talking about. It's so distressing and worse that no one seems to want to help. I'm glad I joined the group.

 

I suddenly lost all hearing in my left ear three years ago and the hearing was replaced with constant noise, ear fullness and discomfort. I don't think deafness is a cure for tinnitus.

 

@Shortcut69797 ,
My son could not have any new bones put in duee to the nerve damadge and casing missing from his facial nerve so his hearing in that was is 40db.
He copes ok without a hearing aid as the other ear is fine.
I'm sure you will find a hearing aid helpful .
We have a lady with pulsitile tinnitus who attends the group Dot and I run and she wears a hearing aid and said she finds that the betablockers the doctor out her on has helped lower the pulsitile tinnitus....lots of love glynis

 

I had raging pt for 2 and a half months. I sat in bed with heating pad on my head. And kept everything silent. I took ativan for anxiety. Every two weeks or so the all over pt would move closer and closer to my ear where it finally shut off.

 

Nonna, I sure hope T does not make you angry!!!

 

I am new to this forum and I just cant take this T. It started in Nov. my ent put me on valium and i got addicted. It finally stopped in february but I was just in the hospital to get off of the valium and the T started again. Im on all kinds of new meds for my anxiety i wonder if they could have started it again

 

I have profound distaste for ENTS! PROFOUND! Yeah its not their fault that they cant help but they dont gotta be so fucking heartless!!!

 

I agree with you about ent being heartless. I went to mine 2 months ago with a bad tinnitus /hyperacusis crisis and he was totally dismissive. I was very dissapointed. He didn't do much for me. Told me to take prednisone for 10 days and see him in two weeks. We'll the prednisone didn't do a thing and now I'm going on 3 months and getting bad anxiety.

 

Well, I've met ENTs who were sympathetic and ENTs have were real pieces of feces.
One might say that the first group were kind, the second group realists.
Who cares. Bottom line is there is nothing either group can do for you and even if your ENT is the coolest person on the planet, it makes zero difference concerning your condition.
I mean what did you expect. The ENT sitting by you, holding your hand and telling you "Sorry, nothing I can do" while you rest your head on his bosom, crying together? Come on.