New and Needing a Little Support: Tinnitus and Hyperacusis

[kmohoruk]

Hello Everyone!!,

I'm new to these boards but figured it would be worth a go because there isn't really a support group near where I live (Vancouver).

I am once again caught in that cycle of trying to stay active and busy, but am also experiencing frustrating setbacks, sadness and fear of causing further damage to my ears.

Backstory:

This past summer, I was exposed to some gun fire (Had some hearing protection but not enough) and it aggravated my tinnitus (which I had been perfectly fine with for 8 years before).

About a month and a half later I was blasted with a car horn at a mall parking lot and have been dealing with hyperacusis in my right ear ever since then (Every day sounds seem to be ok, but any sort of horn, bell or beep from electronics can cause uncomfortableness and pain).

Now since that time I have had to drop out of school and am waiting for an apt at an ENT doctor, with hopes of then starting Tinnitus Retraining Therepy a couple of days later when the next in take at St Pauls Tinnitus/Hyperacusis clinic in Vancouver is. My appointment is in about 20 days (have been waiting for 3 months...so I'm almost there!)

Trying to stay positive

I'm not trying to complain. But I can't help but be upset, frustrated and fearful of the future. My right ear used to be my good ear, and now it's my bad one.

I try and stay active and at least get out for walks and drives in the car to expose myself to noise. But every week I have had a situation where I am exposed to something loud and it seems to make my T worse.

Since I got blasted with that car horn at the end of August, I now have a ringing that goes along with my regular hisssss in my right ear, and after each noise exposure it seems to be getting worse and worse (ex: A bike bell on my moms bike that went off by accident right next to me). It usually settles down by the next morning, but then when I'm exposed to any sort of noise it gets louder and usually stays like that for the rest of the day. It just seems to be settling down less and less and is getting more and more reactive and louder.

I thought that maybe I had some sort of a ear infection, since It feels like I have water in my right ear, some pain and itchiness. But nope, doctor said everything looks fine (Might try looking for a second opinion).

I know lots of other people have tinnitus and hyperacusis way worse. I'm really trying to put on a brave face and make it through these next 20 days, where i'll finally be able to see a couple specialists and start on my TRT journey and finally deal with this hyperacusis and new spike in my Tinnitus. I habituated to this before 5 years ago, and I'm really trying to stay positive and remember if I did it once before, then I CAN do it again.

Right now I don't feel really stressed (besides some TMJ), just sad and afraid. Afraid that some of the sounds that make me uncomfortable like the bike bell that rang - are instead making my tinnitus permanently worse. I can deal with the hissing, but this new ringing is just really scary.

I wish there was just more firm data for people that have tinnitus and hyperacusis. Between some of the stuff that I read online and some of the new research thats being done (Which I'm happy about), I'm just not sure on what to do. Is it worth it to just try to lay really low for the next 20 days?

If anyone has any words of advice or support then that would be much appreciated.

Ending on a positive note...

Like I said, I'm trying to keep on a brave face. But I would also like to offer support to some people who are going through the stresses of first realizing that they have tinnitus. I remember when I first realized it, it was really scary, but after I got used to it I literally never really thought about it. To the point where I lived with a girl friend for a year, and SHE didn't find out that I had it until a year later when I mentioned it without thinking.

Just thought I would pass along that story as a reminder to everyone and myself that habituation can happen.


Thank you,

Kris

 

[Jay M]

Hey buddy.
You will be fine. The H is a bitch but it will take time to get better. ALA (alpha lipoic acid) 200mg and NAC 600mg daily w an emergenC drink have helped soften my tones and improved my H.

 

[kmohoruk]

Thanks @Jay M I really appreciate the positivity right now! Some day I notice that my H is better, and some days it is worse. I'm just trying to take it one step at a time, rest my ears and still stay active.

Looking forward to hopefully sharing some good vibes myself on this board.

 

[Rube]

Thanks @Jay M I really appreciate the positivity right now! Some day I notice that my H is better, and some days it is worse. I'm just trying to take it one step at a time, rest my ears and still stay active.

Looking forward to hopefully sharing some good vibes myself on this board.

@kmohoruk i have the same thing with my H. some days feels better for a bunch of days and then back to where it was. i hope that means its starting to get better.
@Jay M i take NAC 1200mg per day, is ALA and emergenC good to take? i guess i have nothing to lose but a few bucks! how about any B12 vitamins, my reg doc suggested lipoflavanoid which is a bunch of B vitamins and also some members here take magnesium.

 

[Ilija]

Hang in there man, yes I've had experiences like that, I had a big spike during my cold, I got a ring instead of a hiss and increased hyperacusis, but it went away.
Perhaps it's just a phase?
I'm not sure man my Tinnitus is pretty rock hard, haven't had anything really unsettle it. I hope you get back to baseline and resume a happy life I'll pray for you even though I'm nor really a religious person just for the sake of it.
I wish you a quick recovery and the best of luck

 

[billie48]

Hey Kris, you are doing just fine by keeping things positive and living life. As we have talked over your T & H condition in the conversation mode, your T got aggravated by the acoustic trauma of the gun sound, so you will have to mentally budget a period of unstable condition of the T & H. The H coming after T usually fade over time for many people, mine included. Mind you during the worst time, I couldn't stand most normal sounds, those from TV, restaurants, parties, dishes, movies, not even the soft voice of my wife spoken close to me. That was some worrisome time for me too. But it gets better. So don't worry about it. Your T may seem like to react to or get worse when exposed to loud sounds for now. I used to think I had sound-reactive T too in my young T life a few years back. This may be a result of the H. So once your H fade, the T should settle down a bit with normal sounds. If you decide to try earplugs for H, make sure it is not for normal sounds, as over-protection can lead to sound sensitivity. Hope you get some help from the audiologists at St. Paul. I didn't know they offer TRT now. They didn't back then. And my waiting time for the audiology lab there was close to a year back then unless I pay some fee. LOL. Good that they have improved on their waiting list time.

 

[Gio Makyo]

" If you decide to try earplugs for H, make sure it is not for normal sounds, as over-protection can lead to sound sensitivity."

I'm going through this struggle (with H and T) now. Was trying not to use earplugs at home or in my neighbourhood, grinning and bearing it when washing dishes or something "normal" would make me twinge. But I had to use earplugs for downtown (Tokyo) with blaring announcements, train brakes, beeping electronic alerts everywhere. How to strike the balance between protecting against sudden sounds and accepting "normal" ones? I was out walking the other night without ear protection and someone slammed down a steel shutter right as I passed and my right ear just freaked, it was like I felt the shock all the way down my spine. H got ramped up much much worse after that, and hasn't come down yet. I have EAR professional moulded earplugs that I used to use to protect my ears at concerts prior to getting tinn, and I find the strongest setting at -25 dbs just barely makes street noise bearable now, which is frightening since in the past, I considered that setting too strong for almost any occasion; I usually used -15dbs. Foam earplugs no longer do the trick after that last blast.

At any rate, I get how constant earplug use will lead to over-sensitivity. But there is also the reality that exposure to sudden loud noise can clearly make the H go berserk. How to balance between protection and going plug-less? Any advice?

 

[Telis]

Is it not smarter to use ear plugs every day (say in the city) and desensitize your ears in a controlled environment with sounds that are not harsh?? I think this overprotecting thing is BS, seriously. I have been in quiet environments before for weeks at a time prior to T, yet I could hit a nightclub or concert after that nooo problem. If this were true (overprotection) H would be common in everyone that was exposed to a quiet environment.

Protect your ears if thy hurt, your body is probably telling you something. I did what you did and forced myself out, exposed myself to whatever, I had so many spikes that are still with me today.

If you want to desensitize do it with smooth sounds gradually, not by walking around the city exposing yourself to loud blasts of noise. I say keep protected if your ears hurt. And expose them in a nice gradual way.

@Zimichael has had T and severe H for decades...he seems to be very knowledgable in this regard, well in many others as well! Maybe he can chime in on this one.

 

[Zimichael]

Hey saw @Telis tagged me...

@kmohoruk I have written up a number of times about the combination of Tinnitus and Hyperacusis, and the difficulty of knowing exactly what that means too. After all this time (see my Profile if interested) I still don't know for sure what the difference is between "Reactive Tinnitus" and "Tinnitus + Hyperacusis".
However, I have had unfortunately quite a lot of experience with both and my viewpoint is a little different from the 'mainstream' approach about "sound exposure". I'm with @Telis on this one.

Please see this thread and some of the followup for my take on the T + H combo...plus some of my recommended "do's and do not's". https://www.tinnitustalk.com/threads/tinnitus-vs-tinnitus-hyperacusis-some-basic-differences.5110/
In fact soon maybe I should write up a new post of something like "Practical tips on how to deal with T +H" or whatever, as this question comes up repeatedly.

Best and good luck...If you stay "safe" it should get better! Really... Zimichael

 

[kmohoruk]

Hello @Zimichael and @Telis Thank you both for your replies

Thats how I kind of feel right now. It's not that I doubt certain doctors advice or anything (Most of them mean well and I appreciate it), I just feel that there may be different types of Hyperacusis and that the research hasn't caught up to it just yet. I mean, some of the research that Hyperacusis Research has done is just starting to scratch the surface and maybe show that some of the stuff that was previously thought about it my be indeed wrong.

Example:

One example that I have, is right around the time when I realized that I may have hyperacusis. I was at the mall with my girl friend and someone auto locked their car while my girl friend (Who has T but no H) and I were in front of it, and we were BLASTED with a loud honk. Like it was way louder then the average horn (To the point where my hearing shifted and then came back after 15 sec). Since then I now have a fluctuating ring in my right ear that sometimes gets low enough below my regular hiss of my regular T - and other times it gets so loud that it feels like my face is vibrating.

I think my T has gotten a bit worse since my initial noise exposure back in July, but its just hard to tell because obviously you can't go back and comepare. I also have been dealing with TMJ from the stress of all of this. So I'm sure that causes my H and my T to fluctuate as well.

My Thoughts:

The problem that I'm having is that I'm trying to get started with TRT. But with the Canadian medical system it takes so long to get seen and get the process started (Going on 4 months now). I recently just took the first step in going to the clinic, but it may take a month or two before I'm able to even able to start the noise therapy part of it.

So while waiting I mostly spend a lot of time in and around the house, but sometimes I have to leave for doctors appointments or when I go to a local park by my house and go for a run - Its one of the few outlets that I have right now.

Since then I have tried to be careful and exposure myself to safer noises. I haven't really used ear plugs all that much. If I need sound protection then I usually pull out my big ear puffs and cover my ears that way when I'm at home.

I would say that my H is more mild - moderate. I can have conversations with my parents, drive, play music from my iPad and it seems to be ok. But I have been exposed to two more (not as loud) auto lock horns when I've been in the parking lot coming back from my run and that has jarred me a bit every time and is obviously very unsettling.

Questions:

- May I ask if yours guys H has gotten better over time?

- Did you try any sort of sound therapy or anything?

- Any other quick Do's or Don'ts? (Thank for you the links ZiMichael, they really helped!)

- Have you been able to get a sense of normalcy back to your life?

Summary:

If my T stays the way it is now then fine, I can deal with it. I habituated to it once before, and I'm going to try like hell to do it again! It's just this H that is bothering me, and the fear that I am just one loud sound away from making my T and H a whole hell of a lot worse (I know compared to other people, my H isn't that bad which I am thankful for)

There have been some dark days, but some better days as well. I am living with my parents and they have been extremely positive and caring - which is really important right now, and I am very thankful for that. I owe it to them to keep on pushing even through a setback or two.

Oh...and Netflix...thank god for Netflix and 11 seasons of Fraiser! (I still try and laugh and stay positive. Even through out all of this)

(I apologize if that was a bit of a ramble there haha)

Thanks guys, I really appreciate it!

 

[Zimichael]

Questions:

- May I ask if yours guys H has gotten better over time?

- Did you try any sort of sound therapy or anything?

- Any other quick Do's or Don'ts? (Thank for you the links ZiMichael, they really helped!)

- Have you been able to get a sense of normalcy back to your life?

@kmohoruk ...I am just going to cover your questions here not your whole reply post.

- Yes, I have found that my H calms down about 10% per year no matter what, EXCEPT for if more permanent damage! So in simple English, if I do not get zapped badly the initial H goes down and gets easier. *(See in my Profile description for an example...That would be from 2006 to 2102, where I went from unable to ride in a quiet car on the freeway with all windows closed + full earplugs, to being able to dance in a show again). However, the T did NOT go down in volume at any step up. Thus my emphasis on protection to avoid further damage, as a little longer perhaps with H is a helluva lot better than forever permanent louder T!

- Yes. Any sort of "sound generation" was impossible for me. It aggravated both my T and my H and still does over and above very low volumes. I think it is partly a "proximity" thing, as if I am further away from the sound source it is easier. Having it right on my ears is a NO-NO. I do use quiet "gurgling brook/stream sounds" and "crickets and tree frogs" CD's I burned way back, c/o speakers either side of my bed at night. Softly, and not all the time as sometimes get tired of that too. *(Do a search for 'Eyes Like Saucers' under my username for more recent try at sound generation for residual inhibition and 'masking', etc.).

- Yeah, if you can do all those things you mentioned you are in a lot better shape than I am! However, you are learning that getting "re-zapped" is not a good idea...and it is NOT. See my history. This assumption that T is maybe a one time deal for everyone is just bullshit. (However my brother has non affected T, so it does exist - he is unafazed by sounds but has pretty loud T from gunshot. His T has no effect on his 'quality of life'). See my Profile.
Advice...I would suggest a fast track education in "external observation" + pre-designating danger zones, and putting in "half plugs" (I use Etymotics @ 25 dB's) as a precaution in those situations. Parking lots are up there for me just for the reason you stated and also starter motors switched on unexpectedly. Especially darn Dodge Ram trucks! I want to nuke those things!

_ "Normalcy"??? I don't know what the word means any more. However, I do vaguely remember that after 6 years (2006 onset) I felt happy again for the first time in 2012 before I got zapped again. Certainly after my first bad T and temporary H in 1980, I went on to have a great life and was almost totally "normal", apart from being careful to avoid loud machinery, discos and concerts, etc. without ear protection. It was no big deal.

Sounds to me like you will be fine if you avoid further serious damage.

Take care, Zimichael

 

[Nick the Swede]

@Zimichael, I must say that you are a true hero. I really like what you write in this Community.
Just so you know.

 

[Zimichael]

@Nick the Swede ...There is no "blushing with embarrassment" emoticon! However thank you...Of course I wish I was not so experienced and self educated regarding T and H, as I would not have had them in the first place! However, those pesky "Gods" have their own agenda, and we mortals are but bowling balls in their alley. [Though they better watch out when I have a face to face at some point!].
Best, Zimichael

 

[kmohoruk]

@Zimichael

Thank you for all the help and advice my friend. I am holding on with hope that I will be able to get some sound therapy and hopefully get this corrected somewhat.

The couple times that I have to go somewhere like a mall or a doctors appointment. I take my regular Bose head phones since they give me a little protection but still allow me to hear somewhat if I have to talk to someone. Haha, I may look like I'm being rude, but right now I need it.

I'm trying to not give in and let this win. It's just been a lot to take in. I'm not really leaving the house, had to put my car into storage, I can't work, can't go to school and my girl friend lives a fair distance away from me. It it wasn't for my parents and the support that they've given me, then I have no idea what I would do.

Theres some dark days, but I'm also trying to have more positive days as well.

 

[Zimichael]

@kmohoruk ...Yeah, it's a battle to stay positive sometimes but sounds like you are on track. Don't beat yourself up too much if you fall down into the mud every so often. After a while you may just say to yourself: "This bloody mud mess place again. Oh well, I guess I should use the escape hatch and read a good novel, or watch a series of movies (with subtitles inf necessary), etc."...Whatever works.

Yes, if you use ear protection and don't mind the 'looks' you get, over-the-head earphones/earmuffs are better as they keep the ear canal 'open'. To me at least, that reduces the "internal feedback loop" that makes the T ring louder after a short while of plugs in. It goes back down in a while after I take them out as it's an "internal perception" but it can get too darn loud for sure. Over head muffs avoid most of that it seems + better for potential H as well I should think.
Incidentally I would definitely adopt the "don't give a damn" approach to what people think. It's your ears you are protecting, plus I have no qualms about "educating" people when they ask me why on earth I am wearing ear protection in public like this. "Because you may cough, or yell at your dog, or laugh out loud suddenly!" That gets them either freaked out, or I have their attention...1 out of 10 may have a real "OH!!!" and get it. But who knows, may as well be an emissary while looking goofy. They may not come out of the disco next time thinking it's so cool to have their ears ringing, as they will see you with those headphones on and go..."OH!!! No way!".

Lastly, please post your experiences with TRT and how you relate to it with your level of 'reactivity' or H, as there is a bit of a dearth of reliable info on that v. just letting the 18 months or whatever do it's own thing. [The second time I got an increase in volume of T in 1980 I actually had H but did not realize it until much later, because it resolved on it's own within about a year I would guess. Thus it is questionable to me whether any 'sound therapy' would have been quicker or better than just what I did...which is as we have discussed already, etc. This is especially so if not part of a national health system and one has to pay for it with own $$$].

Best, Zimichael

 

[kmohoruk]

Thank you @Zimichael !

I recently started a blog called The Tinnitus Project (Story of my journey, raise awareness and hopefully where I hope to fundraise in the future) where I will be talking about my TRT journey once it gets going. As well as just sort of talking about my thoughts on the subject.

The link is:

http://thetinnitusproject.wordpress.com

Thanks again my friend. Like you said, people with H and T need to stick together and share any kind of information that you can. I really feel like in the next 10-15 years Tinnitus and Hyperacusis are going to be very researched conditions as my generation is really abusive with their ears. iPods, concerts, super loud clubs etc....

 

[billie48]

This site may give you some more info on hyperacusis and sound sensitivity. Remember everybody is different in sound tolerance. The so called LDL or Loudness Discomfort Level is different for different people. So use your wisdom when it comes to sound protection. Good luck with your TRT treatment.

http://www.hyperacusis.net/hyperacusis/4+types+of+sound+sensitivity/default.asp

 

[SteveToHeal]

Good work on your site. Never truer words spoken:

But I will tell you one thing. A lot of things in my life have now been placed into a new perspective. While I have always liked to consider myself as a genuine, caring, mature and loving person (especially for a guy!). When you develop a condition like this – it changes you. You're simply not the same person that you were before. As I always say to my family:

"If I somehow make it through this dark void that is my life right now – then I will be unstoppable."

That is how I feel. T has changed me. In the PIT right now. I don't want to accept this version of me (despite help from ppl on this forum - maybe one day). I am hoping that I come out the other end. If I did, I could do anything. Really sorry to hear you have had it so long at such a young age. Brave soul. Good to hear you have support at home and your gf.