Ringing seems louder again, I'd really love help and support

[Sahda]

Hi I've been hoping to find a tinnitus helpline but it turns out they only exist in the UK, because I desperately need someone to talk to right now. Basically I'm having an ear-ringing-increase attack right now after having to ride the bus 3 times back and forth between work and home because I left my keys at work, and something as simple as riding the bus once can make my ears ring a little louder when I get home. I'm miserably upset with myself for not waiting for a taxi and called my boyfriend crying, who is busy right now and couldn't say anything to make me feel better. I feel like my ears had calmed down a little over the past two weeks, but now I'm so upset with myself I just don't know what to do, and feel sad and angry and scared and hopeless, equally combined.
I've had tinnitus to some degree for two years, the initial arrival after an awful show that my boyfriend did lighting (and sound) for that he afterwards said was about 170 db for 5 hours, when I didn't think to bring/wear earplugs because I'd never had tinnitus. It was dumb because he does lighting for this venue that I hate on principle because its an overproduced dance nightclub, and that was the only night I went. I wanted to go just once because I thought it'd be ironic, and he is great at lighting and wanted me to be there sometime. It was also the only night the sound levels were allowed to be so loud, and everyone there made a point about it. I, meanwhile, cried and felt ruined for at least a good month. The ringing levels at the time were barely what they became though.
Especially in the last year its gotten worse and worse, and I only last month learned (from the third ENT in a month!) that the worsening ringing is in accordance the development of hyperacusis in both ears as well, as I and other people kept trying to tell me that things I was around weren't loud and can't make my tinnitus worse.
I'm just so sad, as I've been trying to keep things at a quieter level around me at work and at home (I work in design/retail so I'm around people and music often, so just recently have gotten everyone to keep music at a low level for me and its okay with everyone, and that I can't use a hammer or electric staple gun, and I've felt happier for the first time in a year or so). Since the ringing has increased again I feel like a failure and like I don't know if they've reached another new high level, which is my biggest fear, because it always gets worse. I feel like I did after I rode a very loud engined airplane and couldn't stop crying during Christmas at my parents house for days, and had to drive the 10 hours home in a rental car after all. I am terrified that I've hurt my ears worse and can't concentrate on anything.

I hate myself so badly when this happens. Unfortunately, or fortunately depending on how to look at it, I can't do things like cut myself or things like that because I'm too old and attentive to my looks now (oh, ha.) I also can't drink notable quantities of wine like I'd been doing a few months ago, because I'm such a naturally low-mooded person that after a few days I start to feel generally down, in addition to generally terrified of my ear noise. Also, I concluded that dehydration makes me notice the noise more acutely sometimes.

I joined this message board just now because I need help. I've learned everything I can about tinnitus and hyperacusis and am trying so badly to help myself, and to maybe eventually get my ears to calm down and heal to some degree. I feel so sad and hopeless now though, and since the sound is proof of what I've done by trying to use public transportation again (I've cut back for the past two weeks, when I was starting to have hope for living with tinnitus/hyperacusis). I've saved $15 and lost my life.

 

[Markku]

I'm so sorry Sahda that you have to through this. We are about the same age. Not that it matters, but always saddens me to see that this affliction is so wide-spread.

I actually could very well have talked with you on Skype about this, but my spoken English is somewhat lacking. It is mind-numbing if there aren't any tinnitus hotlines in the US. I guess the UK is the only English-speaking country with tinnitus hotlines...

What you have described sounds to me a lot like advanced hyperacusis. In things like this there are, unfortunately, never guarantees, but it's extremely unlikely that a couple of consecutive bus rides could make your tinnitus permanently worse. I just don't believe it.

I feel like my ears had calmed down a little over the past two weeks.

You today experience an increase due to bus rides, and it's clear you've got some sort of hyperacusis, so I'm sure your ringing will calm down again.

as I've been trying to keep things at a quieter level around me at work and at home

How much so? I hope you aren't trying to limit yourself to almost too quiet surroundings?

For many patients, the first reaction to hyperacusis is to protect themselves with ear plugs, muffs or other devices. There is, however, reason to believe that such strategies to decrease the intensity of sound entering the auditory system may further increase the central gain, exacerbating rather than improving the hyperacusis.

After audiological and medical evaluation, the protocol11 requires classification of the patient according to the tinnitus and hyperacusis state, and then 'directive counselling' about the auditory system, about mechanisms of tinnitus and hyperacusis and about the distress associated with them. Binaural sound therapy, from ear-level wide-band generators, is undertaken even when the symptoms are unilateral. Treatment is based on the notion of desensitization, and the sound intensity is increased from a low level gradually over time.
(source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539655/)

Wikipedia tells us the following about the treatment of hyperacusis:
The most common treatment for hyperacusis is retraining therapy which uses broadband noise. Tinnitus Retraining Therapy (TRT), a treatment originally used to treat tinnitus, uses broadband noise to treat hyperacusis. Pink noise can also be used to treat hyperacusis. By listening to broadband noise at soft levels for a disciplined period of time each day, patients can rebuild (i.e., re-establish) their tolerances to sound. Another treatment method is the Berard Auditory Integration Training. When seeking treatment, it is important that the physician determine the patient's Loudness Discomfort Levels (LDL) so that hearing tests (brainstem auditory evoke response) or other diagnostic tests which involve loud noise (MRI) do not worsen the patient's tolerance to sound. Steroids are used to treat hyperacusis within 72 hours of the onset of the condition.


Have you tried treating your hyperacusis with any of the above? If you go to http://simplynoise.com/ - and choose pink noise - does that make your hyperacusis act up badly? Could you imagine trying to listen to some pink noise every day? No need to have the sound levels loud.

Maybe try that starting next week or so, by which time I suspect the ringing will not be as bad as it has today been for you. Still, I would use some sort of sound enrichment if at all possible. It's not good to be at home listening to the ringing... Some nature sounds (e.g. I like personally raining) could work in your benefit. Our member Jim has made available some soundscapes, check out http://mytinnitusmasking.com/

I can't do things like cut myself or things like that because I'm too old and attentive to my looks now (oh, ha.)

I'm happy for you (I deciphered from that that you may have used to do something like that in your teens, maybe I got the wrong impression?), as harming yourself in any way isn't any solution at all.

Yes, I suggest you try everything you can to keep your mind off of tinnitus, but understandably with the hyperacusis it is tougher than for those who have not got that additional problem, as if tinnitus only weren't enough.

I am not much of help here though I'm afraid,

I've learned everything I can about tinnitus and hyperacusis and am trying so badly to help myself

as you basically knew all of this from before.

Very often hyperacusis gets better, it's nearly not as likely for it to be a lifelong problem as tinnitus itself is. After your hyperacusis gets better, you'll feel a whole lot better.

I don't know if they've reached another new high level, which is my biggest fear, because it always gets worse.

I'm just mumbling here, but I wouldn't be surprised if these high levels you mention would resume to those softer levels you were earlier accustomed to. It is rare for tinnitus to continually worsen without exposure to loud noise (which you really haven't had after the night club fiasco, 170dB, what the hell! I'm giving those organizers a virtual kick in their butts!), ototoxic meds or other things that might cause or worsen tinnitus. You have real hope to get better, I'm confident.


Do you have any anti-anxiety meds for situations like this? Xanax or Klonopin? I like Klonopin (Clonazepam) myself, it doesn't build up tolerance as quickly as alprazolam, and gives a nice almost day-length calming effect, for me at least. I wouldn't advise to lean on these drugs continually, but for infrequent flare-ups they can be great. I take maybe 2-3 of clonazepams each month.

I guess you have had an audiogram, do you have measured hearing loss?

What did the latest ENT suggest re: the treatment of hyperacusis?

I haven't myself suffered from hyperacusis. There are some people here who've battled with it so I hope they can chime in when they see this.

I hope your boyfriend understands the scope of the situation and that also he could give you the support you need. Sometimes people without tinnitus aren't just able to empathize well enough as they haven't got a clue what the torment can be like. It's not their fault per se, and of course most people try their best to help.

Let me know in a day or two how you are doing, I wish tomorrow is better for you already. Try not to think of the worst, i.e. the ringing being worse permanently.

Good night,
Markku

 

[Petloy]

It's probably just a temporary spike, it will come back down. Try wearing ear plugs in loud places, like airplanes or even the long bus rides, foam ones or ER20's will do. Hope you feel better soon.

 

[Fish]

How are you doing Sahda? Feeling better hopefully.

 

[Markku]

How are you doing Sahda? Feeling better hopefully.

Wondering the same. Wish she came around telling.

 

[carlover]

Markku ,can I say buddy that post of yours above ,well brilliant,By that I mean from the heart that typing came from didnt it.
We all want help but we all want to help each other as well and the sheer frustration of it all ,is for all to see in some of the posts.

Good luck Sahda and you Markku.

 

[Aisling]

Me too Markku thanks for writing that. I am 6 months into tinnitus and I had hyperacusis at the beginning but it got better. BUT now I have a cold my ears feel full and my hyperacusis is back with a vengeance. I just drove 40 min in the car and my tinnitus is the loudest it's ever been. Will it come back down??? I hope so I was just getting used to it. Or maybe I should go get antibiotics tomorrow incase I have an infection

 

[jazz]

Don't worry. Colds always worsen ear conditions, like tinnitus. Your nose, ears, and mouth are all connected and lined by the same tissue!

I'm less sure about infections. Obviously, ear infections might worsen your tinnitus and perhaps your hyperacusis. Throat infections are probably fine. If you get antibiotics be careful. Some are ototoxic. (Ciprofloxin and all the 'mycins' come to mind.) I believe penicillin is fine. But check on the board. There should be a list somewhere, if memory serves.

Good luck! You'll be fine!!