Am I the Only One — Everything Increases My Tinnitus!

[Shadgirl]

I'm convened my tinnitus is a curse from God. Its been getting louder weekly sense it started in January. It sometimes shows up in my dreams, and sounds the same as its dream form when I wake up, and it went from mild to moderate in only one mouth. I'm scared to death that it will keep going and going until its louder then the loudest sound on earth! There are other symptoms too. Fullness in the ears, they get hot or cold randomly hen the rest of me in fine, head presser that changes sides, they hate all medicine even the non ototoxic kinds, and spike for hours with any treatment given for anything, and to top it all off just starting last night, the worst ear crackles every time I swallow and with certen head movements. My jaw is reacting to this crackling too. I saw an ENT Wednesday who looked at my records and barley did anything else and called it tinnitus with maby an unrelated Eustachian tube disfuntion. But he couldn't tell me why the sound keeps increasing in volume! It increases when I'm stressed, relaxed, happy, sad, everything increases it! It even increases when I do nothing! No medicine, trying to ignore it, surly I'm not the only one right!? Tell me someone knows something about this!!

 

[linearb]

you are definitely not the only one to have these thoughts as a result of having this condition.

 

[Shadgirl]

But what IS that condition? It keeps getting worse!

 

[Shadgirl]

Its afishel. My tinnitus is one of a kind. Straight out of a horror movie. And God hates me even though I said I was sorry.

 

[Stink]

Its afishel. My tinnitus is one of a kind. Straight out of a horror movie. And God hates me even though I said I was sorry.

think positively. it can't get worse PAST A CERTAIN POINT.

it can't be a continuous and infinite worsening! what do you think tinnitus boards can do for you? there is no cure! you have to be strong and patient!!!

 

[Shadgirl]

Dont want a cure. Just want someone to relate too...Mines been proven one of a kind so far...

 

[Karen]

Hi, Shadgirl,

Did the doctor actually say your tinnitus is one of a kind? And did he say in what way? Do you have a damaged ear drum? Maybe that will heal in time. All of us here really do understand what you're going through, even though ours may not be increasing right now. Mine used to roar when it first started, but it finally settled down, and is a steady, high-pitched hissing now. Maybe yours will eventually do that, too. In the meantime, you might want to try some of the suggestions we've made that have worked for us. I've recently started taking NAC, and that seems to be helping my tinnitus calm down a notch. Others here may have additional suggestions.

I'm so sorry you're having to go through this, but at least here at Tinnitus Talk you have a lot people who understand.

Hugs,
Karen

 

[Shadgirl]

That ENT did next to nothing. And the jaw crackling just started for the first time last night. Something is going on and no one can tell me what!

 

[linearb]

Lots of ENTs don't actually know much about this issue because it has more to do with brain and nerves than it does with ears and throats.

I have all the symptoms you describe. Fullness, ringing, pain, crackling when I swallow, jaw pain, hotness, coldness, etc.

I have all those symptoms, but I still say "hey my life is pretty awesome! I have many, many awesome things in my life that I am grateful for on a daily basis!" The ear shit is annoying and I wish I didn't have to deal with it, but no one ever told me life was gonna be perfect (and if they did, they were lying through their teeth....)

 

[Shadgirl]

But my problem didnt start out this way, new things keep popping up!

 

[Karen]

The first ENT I went to didn't do anything to help me, either. He just referred me to a specialist (a neurotologist), who ran some tests. But I had those tests because I have pulsatile tinnitus --- and nothing was found. Eventually, I went to another ENT to get a second opinion. He was very kind, and did order an MRI/MRA for me (also because I have pulsatile tinnitus). Nothing was found then, either. After many tests and visits to many practitioners, I've stopped going to doctors for now, and am just treating my tinnitus in my own way.

 

[Shadgirl]

My symthems keep gettig worce over time, the guy didt do the Eustachion tube test through the nose and with what else is going on Im more then possitive me head isues are more the just tinnitus. Theres too manny symtoms and more pop up all the time!

 

[Karen]

Shadgirl, another thought:

Do you have any history of jaw problems? Maybe you could see a TMJ specialist or a dentist in your area, to see if you might have a jaw-related condition. That could explain the crackling sensation you hear. The dentist will also ask you if you grind your teeth at night. They can provide you with a device that you put in when you're sleeping. That might help.

 

[Shadgirl]

All Iv seen is one ENT who didnt do much of nothing. I dot know where to turn, and my dad set up a new ENT appoitment in the Clevelend Clinic.

 

[dboy]

@Shadgirl, I have had temporary tinnitus spikes from eardrops that doctors give out. I think that for some people with sensitive skin in their ears they can cause irritation. If that affects the eardrum then it makes sense that it would increase the volume of the tinnitus for as long as the eardrum is irritated. And further interventions might irritate it more. And the stress this causes might further aggravate things. That is why I suggest backing off on all the meds for a while to try to let your ears settle down a bit after everything you have tried. If I remember correctly you had a mild tinnitus that was fairly stable until doctors started prescribing things for you... is that correct? It is quite possible that it may go back to that mild level if you give it chance. This could take a few weeks though so try to be patient, try to relax as much as you can, and don't mess with your ears unless a doctor can tell you he really does know what the problem is and how to fix it.

This is only my take on the issue. I cannot promise that the T will go back down. I have also experienced some real damage from ototoxic meds as well as the temporary spikes I described. But I'd give it chance. Best wishes.

Correction: just seen that you said the T has been getting worse every week since January. Is that before you tried any meds or anything else?

 

[Shadgirl]

Oh my gose thank you. I was REALLY starting to think I was the only one who's t hated meds of all kinds! I feel a bet better about THAT now. Not to the part about figuring out whats wrog...New ENT with the Clivelend clink on the 31st. She's won an aword for being there best severel years in a row. And there one of the best clinicks nation wide too.

 

[dboy]

I was REALLY starting to think I was the only one who's t hated meds of all kinds!

You certainly are not that. My T hates meds with a vengeance and punishes me cruelly if I let them near my ears. I do have psoriasis and inflammatory arthritis though, so those conditions may be involved.

I think that when you see a doctor they feel they have to prescribe you something before you leave. Often they seem to do this without considering that the side effects might actually make things worse. The best GP I ever had was often really resistant to providing interventions. When you went to see him, he would quite often just talk to you about whatever your issue was, and explain why he thought it was best to not do anything. Having moved on now to another GP and suffered a few times with damaging interventions, I really wish I'd been able to stick with the other guy. Now I've learned how to 'just say no' to a doctor. I see them as a resource that you can use, but as not necessarily having the kind of knowledge and power that they sometimes pretend. So good luck with the new ENT; my advice would be to educate yourself as much as you can and approach her as a potentially valuable source of information to take into account on your journey to mastering your problems yourself.

 

[Shadgirl]

Thanks again. I really am glad that there are people out there with the meds problem at least. The lady is linked to a clinic that claims to have a tinnitus management group (booked soled till JULLY) in it somewhere so Im gessig they know a bet more about it then most places do. The group first has you meet other pashents with tinnitus, then you talk with four or five diferent doctors about your case includig one for hearing, a dentest, a psycholigest, and I forgot who the others are. Then they start treatment with the next viset. Sound tharipy, masking, emotion controle, eve retraining tharipy so I think they might know more then me if Im lucky. I still think theres something causeing mine to worcen though. Im not around loud noice ever, and I stopped useing any meds that are ototoxic before any damage could be done. But Iv still got a slew of symtoms besides the tinnitus and the worst of them afect the ear that keeps getting worce over time.

 

[dboy]

That does indeed sound like an impressive range of services they offer. I really hope they (and you) get to the bottom of what is going on. You have had a rough ride so far. Best of luck.

 

[Shadgirl]

Thanks...though luck is something I don't have...

 

[linearb]

Thanks...though luck is something I don't have...

that's a matter of perspective, though, isn't it? Your mind is working well enough for you to clearly communicate in text, you're not homeless, and you're not insane. There are probably people in all three of those groups within a half mile of where you're sitting.

 

[Shadgirl]

I know. I had a rough life though. Its too long to share.