Constant Ear Pain

Discussion in 'Support' started by Telis, Dec 30, 2015.

tinnitus forum
    1. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Anyone have non stop ear pain that fluctuates in intensity? By the end of the day after listening to sounds my ears become totally exhausted. I'm not talking a dull pain, I'm talking like someone sticking an ice pick in my ears. The ringing gets more intense with the pain, also my H gets to the point that I can hardly move, any sound is too much. I don't over protect, but I'm thinking that this may help. My ears take a lot of beatings during the day, TV, people talking loud, dogs barking, car drives, dishes clanging etc etc etc. I take the hits and try not to let is faze me and stay tough.

      Just wtf is happening? I've lived in pain with loud drilling for 2 years now. Who the f//k would want to live this life. It's complete misery. every time I go to do something I feel like I'm being assaulted. I'm a tough guy and can take a lot but I know I can't do this forever, there is no chance. H goes away? Mine does not!!!! I've done it all, every type of sound therapy, no sound, a mix, I'm at my wits end, I'm starting to become a very angry person. This pain is wearing me down.

      I don't know what to do anymore, the amount of pain that I take everyday is not normal, it's too much.

      I'm starting to think that I will be isolated and caged at home like some freak. The real world is beating me down so badly and I'm not cool living in isolation. Everyone thinks that I should just keep taking pain and be positive, I would seriously like to see these people do it. I have to start to make excuses other than my ears so I don't look like a pussy. You can tell people that things are loud but they don't believe you and think that you are just being weak.

      How do I live like this? Please help me learn to live in pain, isolated and lonely. I don't know how to do this. How do I come up with the will/strength to live this type of life?
       
      • Hug Hug x 2
    2. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Telis . I normally only recommend a person to use "noise reducing earplugs" in noisy situations. Since it might take you a while to be seen at ENT. Perhaps you could try using them on a temporary basis. Say, couple of hours a day. They are quite affordable and effective and will lower surrounding sounds. Give it a try as you have nothing to lose.

      I know you using headphones/earbuds and playing music through them to give you some relief. As you know I don't recommend anyone with tinnitus and especially having hyperacusis to use headphones/earbuds even at low volume. I personally feel that it is making your tinnitus and hyperacusis more sensitive. I used to have very very severe hyperacusis. It was so bad, if I were talking to someone and they slightly raised their voice, I quickly asked them if they wouldn't mind speaking more softly. My hyperacusis was cured using white noise generators. If you must use headphones try keeping the volume very low, preferably below the tinnitus. I would recommend using white noise instead of music.

      If you decided to try the noise reducing earplugs, remember not to wear them for long periods.
      Michael

      PS: I know someone that bought blue-tooth ear pieces to play music through them to mask his tinnitus. I warned him that it wasn't a good idea as the tinnitus could become more intrusive. He wouldn't listen. At first everything was fine and now this tinnitus has become worse.
       
    3. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Just as a rather obvious point of interpretation for anyone reading, this story does not establish cause and effect. The worsening tinnitus could have been because of other reasons, or from listening loud. The person in question is not available to give his own version of things, so the story might possibly be subject to unintentional distortion ('hearsay'/'chinese whispers'). It is interesting that in the thread on headphone use the only anecdotal evidence for headphones causing problems was similarly secondhand. Nobody came forward to personally say that they only ever listened at low volume and that they suffered damage.

      I don't mean to be a dick about this, it is just that we need to be careful about standards of evidence for what we accept as true.

      Sorry to hear about the pain you are in Telis. I wish I had something more useful to say.
       
      • Like Like x 1
    4. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I have custom moulded plugs for social gatherings, I just started wearing these recently.

      I'm not sure about the head phone thing, I play them at as low as I can for an hour here and there when things get totally out of control and I need to concentrate. Im sure the barking dogs at the park, the construction that I walk by, people yelling, sneezing, laughing, eating carrots, car door slamming etc would surely be worse for the ear than extremely low cricket sounds from headphones. These other noises cause extreme pain and immediate worsening, the head phones I don't really think that I have found a conection there.

      I will try the white noise again. I used it A LOT in the beginning before my T was worsened. The problem that I find is that it really gives me zero relief, like nothing. I can hear my tinnitus right through it as if nothing were there. The crickets act as a distraction for my brain, but just like the white noise, the crickets do not mask but Will at least distract me slightly. Im telling you, the TV, people talking, soft music in the background, a fan, none of it do anything. I sit in silence a lot (like right now) it doesn't make a difference to me unless of course my ears are completely plugged (this is a nightmare).

      I will try white noise for my H but I really don't know about this. I have nerve damage, my ears hear like broken speakers. My dog breathing next to me right now sounds like tinnitus (high pitched sounds) raising and falling as she breathes. louder sounds go from distortion to pure shocks of pain. I honestly feel like the white noise thing is a little hokey given that I have permanent nerve damage, this seems a little too good to be true if you know what I mean, but I will try it out.

      I guess you will tell me not to sleep and sit in silence as well. It just feels good at times to give the ears a break. My T settles slightly and doesn't compete with external sound and I don't have to deal with bizarre distorted hearing messing with my brain but I will try more sound enrichment as well. I mean I watch TV for like 7-8 hours a day, I'm not sure how much my ears need, they feel totally exhausted after that.

      I'm sure I'm doing everything wrong but I'm sure I've also done everything right at one point as well, I feel like I'm trying the same shit that does nothing for me over and over. Round and round I go.
       
    5. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Telis You have explained at length what you're going through. It reminds me of the difficulty I once had with my tinnitus and severe hyperacusis. I don't think you're doing anything wrong. If listening to crickets through headphones helps you then carry on with it and forget about using the white noise. If you don't mind, I will sent you a private message regarding the person that used bluetooth earpieces. Someone on this forum knows this person too but I prefer not to mention their name here.

      All the best
      Michael
       
    6. MJC
      Depressed

      MJC Member

      Tinnitus Since:
      April
      Hi @Telis
      Sorry to hear you are in pain.
      It has been 9 months since I suffered acoustic trauma from being at a work event in a club.

      I suffer from Tinnitus in both ears, blocked ears and a constant pain in both ears. The pain fluctuates but mostly it's painful 24/7
      like stabbing or the eardrum is about to burst. I know how you feel and im at my wits end too:

      I've seen two ENT doctors and they can't see anything - even the pressure tests reveal nothing. I've asked them what else it can be and the attitude from the the NHS in the UK is live with it and I don't know to you're making it up.

      I've done a lot of research in Google and forums and it may be the case that what we have is Tonic Tensor Tympani syndrome or
      Endolymphatic hydrops. I believe in my case it's TTT. So far I can't seem to find a lot of info on how to solve TTT.

      What did you doctors say about your pain?
      Pressure readings in ear? Any visible inflammation?

      Wishing that your pain gets better.

      Thanks
      Mary-Jane
       
    7. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Look up the threads that discuss cutting the tendons of the middle ear muscles to stop their chronic spasm. Search terms may include tenotomy, myoclonus or just plain cutting. If you are in America you may have some chance of finding out more. No-one will discuss it let alone do it in Australia where the Audiologists rule the roost.
       
    8. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I haven't had my ears checked in a couple of years (since onset). I'm going to try and get in in the new year.

      Your symptoms do sound similar to mine. I was told I had nerve damage at onset, that's it. The ENT was not interested in how or why I had ear issues. She looked in my ears and said everything looked fine and that I would have to live with the tinnitus. Since then my condition has worsened, maybe something has changed, I will go and find out I guess.

      Hope you find out what is causing your issue, keep me posted.
       
      • Helpful Helpful x 1
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    9. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      ENTs aren't worth pissing on, but our trouble lies in the fact that there is a gap between ENT and Neurology (eardrum and brain) which is where most of our issues lie. I've been in the position where neither wanted to deal with me. The ENT was full of what wasn't wrong with me, but then said how little they knew about the symptom of tinnitus (I wouldn't let them get away with calling it the disease), and neuro simply refused to accept a referral (after I reminded ENT they'd promised to do it, only to not do it).
       
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    10. Yo-Han

      Yo-Han Member

      Location:
      Belgium
      Tinnitus Since:
      2011
      @Telis About the same here... After work (have an IT office job wich is getting harder and harder at times - music, phones, 4 collegues in a tiny space, people walking in, off desk interventions) my ears just feal exhausted and i want a bit of silence. When at home i try to find the balance. I don't like noises at night too, i want my calm after hours and hours of noise.

      I don't like white noise too, and prefer nature sounds or a bit of soothing calm music when i can manage that(mostly over tiny speakers), should be the same. Nothing that irrittates you should be used for desentisizing(what's the point otherways) The point is to stop experiencing irritation (and pain and bad ear sensations) And build up tolerances step by step (each his own pace)

      White noise is used a lot because it's 'a broad band of many frequencies'

      About treatment
      Same here, had no hearing test since 2013 (onset T was late 2011, test showed mild hearing los) and december 2014 was the onset of more serious H due a large firecracker exploding closer then 3 feet to my ears at old years day -the 31st december (surprised by some dipsh*t throwing heavy firecrakers on the boardwalk somewhere around noon.) I'm celabrating it's birthday today yay, not.

      The whole year was an acoustic nightmare to me. Had some very mild H and mild sound reactive T at bad days wich didn't last more then a day or a few days mostly. Now the devil is out of the box for both of these and reversing the problem became just a pain. The physical pain is a dull one mostly, like i been in a boxing match some days, a combo of TMJ and muscle cramps i geuss causing ear spasms when the sound levels get challenging or busy. Mostly some startle effect too with noise, that's what i dislike most since my pain is bearable (nevertheless its no fun)... no rest around noisy areas, feeling hunted and jolted. Fight or flight in charge :( .... hard to get out of it.
      Tried TRT group sessions with a psycho therapist and an experienced audiologist, but i need more time alone with the audiologist i geuss. The other 7 from a group of 8 had plane T, no H. Had an hour with the psychotherapist alone, but al she could say was to deal with my anxiety issues. She was fine doh and kinda right. Stress and TMJ has been a major factor the last 5 years for me. I just want more guidance and follow up. So yes lets start the year be making a tight plan, or adjusting our existing strategy.... we can only try and not give up (not an easy task)
      Cheers to that and i wish you all a better year.

      ps. at least the audiologist was very well informed and knew TTTS and Hyperacusis. That's why i want to go along with her. She met Myriam Westcot and talked to her professionally for ex. And since they offer induvidual trajects too ... the group session was nice to share some stuff, but too shallow for serious H sufferers IMO.

      I own some musician ear plugs too, the custom fit is what i like most.

      Aarh took me a lot of effort(and edits) to type this, i'm a cognitive disaster the last month ...
       
      • Helpful Helpful x 1
    11. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Thanks for sharing your story and I'm sorry to hear you are going through this BS as well. I think it's great that you are still able to work. I go insane sitting around with this, it's been pretty isolating so far. Take care man.
       
    12. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Yo-Han
      Your situation reminds me of when I had very severe hyperacusis. Although it can get better on its own without treatment there is no guarentee. The only other way to cure it is by using sound enrichment. It can be administered in different ways. One of the best is using white noise generators as part of a TRT, which will also treat the tinnitus. This treatment may not be available in the location where one lives so travelling might be necessary but worth it in my opinion.

      If hyperacusis is left untreated, there is a risk of the tinnitus always being a problem meaning; habituation is unlikely to happen, due to the sensitivity of the auditory system. In addition to this, there is a tendency for the hyperacusis to get worse, which can lead to phonophobia (a fear of sound) if one keeps themselves away from everyday sounds.

      When I was a tinnitus support contact for a well-known tinnitus organisation, I was counselling someone with tinnitus that also had severe hyperacusis. She was prescribed white noise generators but wouldn’t wear them and kept away from everyday sounds by staying in the home. I advised that it wasn’t a good idea and suggested going out for a walk every day for at least 15minutes, to allow the auditory system to get used to environmental sounds. I also suggested wearing noise-reducing earplugs temporarily. Unfortunately, this person wouldn’t listen to her audiologist or me and now finds the sound of the fridge, washing machine, and microwave almost unbearable to listen to.
      Michael
       
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    13. Yo-Han

      Yo-Han Member

      Location:
      Belgium
      Tinnitus Since:
      2011
      @Telis
      Thx, take care too! Hopefully we can see some better days in 2016.

      @Michael Leigh
      Thx for the advise. The TRT centre is 3 miles from my home in my hometown! I am defenatly going to contact them again the following week for a new appointment. Last time i was there was early June i geuss (last group session). Their idea of threating H is simular to what you said here i thought (should be IMO, it's the Jastreboff model being preached there) Well see the next appointment. I'll make a few with her for follow ups.

      ps. these walks i do cause i felt the effect of locking oneself up for days, both to the ears(increased sensitivity) and mentally the isolation is indeed a huge drag . On a non workday i'm out for at least 30 minutes (groceries and stuff) I'm trying to keep the earplugs more in my pocket the last few weeks.

      My best wishes for 2016.
       
      • Like Like x 1
    14. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Yo-Han
      You are doing all the right things. In my opinion, I think TRT will be a good for you providing you're suitable. I have had TRT twice following the Jasterboff method with good results. Please keep in mind, it's important that you have tinnitus counselling with this treatment, otherwise it is not TRT. Some people can still benefit by wearing white noise generators alone, however, it is more effective with good quality tinnitus counselling with a Hearing Therapist/Audiologist trained in this field. Many that practice it also have tinnitus. It is important to use a sound machine at night by the best side, or use a pillow speaker for sound enrichment, when having this treatment. Please click on the link below, as there is more information about TRT and tinnitus that you might find helpful.

      Michael
      Wishing you all the best for 2016.
      https://www.tinnitustalk.com/search/member?user_id=3134&content=thread
       
      • Like Like x 1
    15. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      And if she listened to you she would be better? What was her side of the story? Obviously she had her reasons for not taking your advise. I guess if everyone listened to you and their audiologist they would be better and living a great life again.
       
      • Funny Funny x 1
    16. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Telis
      On the contrary Telis, I don’t believe if every person listened to my advice about tinnitus they would be living a great life, although I would hope that my experience with this condition would benefit them in some way but it’s their choice if they wish to act upon it. The person in question still contacts me, which was her choice to do so in the first instance. She first got tinnitus ten years ago at a party where the music was too loud. The treatment was to wear white noise generators. She didn’t have hyperacusis at the time and habituated in about 18 months where it reduced to a level that was hardly noticeable.

      Unfortunately, three years ago it returned with a vengeance (similar to what happened to me) she is not sure what caused it but this time hyperacusis is present and some hearing loss. I think she is depressed because of it and has been given a lot of support by her doctor and hearing therapist/audiologist (her words). She is one of these people that don’t like taking tablets. This has resulted in yo-yoing up and down with anti-depressants. One week taking them the next off and so on.

      Two other tinnitus support contacts have given up on her because they are fed up – I have considered doing the same as I can do without the hassle. I try to help people that contact me, and do this purely on a voluntary basis. A couple hundred people from all walks of life have contacted me and I hear the same story over and over again, just like what is repeated in this forum. My family don’t understand or want to know. Some Doctors are sympathetic and others fob me off saying, “You have to learn to live with it”.

      I was helped many years ago when I was in distress with my tinnitus and if someone asks for my help then I will try to do so to the best of my ability. However, in the final analysis it is their choice what they want to do. One thing is for certain. When tinnitus is severe and especially if hyperacusis is present, it rarely improves by itself and needs treatment, otherwise things remain the same and could get worse.

      Michael
       
    17. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      I'm not sure it is ethical to discuss people's history on a public forum without their consent. What if this lady were to read these words and recognise her case, and perhaps to object to the interpretation you placed on things. You probably don't have an oath of confidentiality or anything similar, but simple respect for people you have been talking to should suggest caution about this, especially when what you say is so likely to cause offence.

      You once had a post about whether we should rather be happy than right, but here you seem so determined to be right that you reveal details of a supposed helping relationship that might be distressing to the person concerned. And what you are saying actually proves nothing. Please think about what you are doing.
       
      • Agree Agree x 2
    18. Yo-Han

      Yo-Han Member

      Location:
      Belgium
      Tinnitus Since:
      2011
      I'll try to focus on treatmens and strategy's for H and ear pain and not hijack this thread for myself. I'm sure this discussion has been held in many topics and other forums too. I've read many of them ...

      An important part to me is the personal connection with your therapist: wether it's TRT or physio or psycho therapy ... or general medicine md's. It has to click with a therapist (or doctor), and there needs to be a good 2 way communication. Sometimes treatment can or even need to be multi faceted too: depending the underlying conditions, with multiple persons involved. The down side is finding this person or persons sometimes (and many times lack of commication betweem others who treated you)

      If the connection cannot be established betwen patient and therapist, or nice person trying to help.... It is what it is sometimes, personal differences, stubburness on one or both sides, miscommunication ...

      The TRT clinicians in my town said for ex. that i should consider meds if my anxiety went off the cliff, or if i were to fall into deep depression to try anti depressants.

      It's very important to have a 'tailor made' plan i geuss for severe T and H and also keep some overview off everything(not a diary excactly, but some general steps) with results and reactions: good bad, or nothing... and adjust plans and tactics. Hence the importance of a good follow up and a personal therapist. I prefer seeing or phoning (or video conference types like skype etc) for this. Forums and e-mail are to prone for many misunderstandings.

      This clinic seems to have an example of a 'multi faceted' plan, and still not all of it will or may work for just anyone. We can only try.

      http://www.dizziness-and-balance.com/disorders/hearing/hyperacusis.htm
       
    19. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Yo-Han You are right, it helps a lot having a good connection with the Hearing Therapist/Audiologist when having tinnitus counselling as part of TRT. Fortunately, I did and continue to do so seven years on. One of my white noise generators developed a fault a few weeks ago. I emailed my Hearing Therapist and was asked to return my WNG by post. A new one was sent to my home. Hopefully you'll be okay and won't have any problems.
      Best of luck
      Michael
       
    20. Blackbird26

      Blackbird26 Member

      @Telis My H hasn't gone away (sadly) it's been 3 years. It hasn't gotten better but pretty much stayed the same- BAD, with T worsening. I suggest meds. I know of another with 24/7 pain, unrelenting and amitriptyline helps significantly. At this point what do you have to lose? I realize you do not favour meds. Me either but I also do no favour chronic pain. Basically. ..we got dealt a bad deck man..Hope you find relief.
       
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    21. japongus

      japongus Member

      Tinnitus Since:
      1998
      Maybe the dystonia/myoclonus that's giving her sound sensitivity has progressed, as often happens in myoclonus and dystonia. Maybe you should research on dystonia, instead of falling for stupid habituation rhetoric from the sound therapy panhandlers.
       
    22. japongus

      japongus Member

      Tinnitus Since:
      1998

      I have soft sound sensitivity that reacts to any sound differential. So believe me I love physical isolation, coupled with being connected to the internet, where I jerk off, play videogames, read books and watch cat videos and even listen to music I can control the volume to or choose the kind of music that doesn't shift too much in decibel/frequency range. I'm also researching extensively about this condition to see where the issue is, to see if it's inside the ear or in the brain. It's a huge improvement to when I wasn't ''living in isolation'', and putting up with ''normal everyday sounds'', given how I can't stand to listen to people speak or need a fan with a shirt cover to drown out cars because cars are a horrible sound, or given how if I lived in a flat I'd be a dead man because flats tend to, if not always, have constant structural sounds of, among other things, people walking. This ''isolation'' is paradise compared to the previous ''habituation'' I went through.
       

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