Very Scared Today, Why the Terror Today?

Discussion in 'Support' started by Forever hopeful, Sep 18, 2015.

tinnitus forum
    1. Forever hopeful

      Forever hopeful Member

      Tinnitus Since:
      August 2015
      It is 5:30am and I cannot sleep. So today I see an audiologist who specializes in Tinnitus to get support and coping strategies and hopefully custom ear plugs. And I am terrified......

      By way of a little back ground, my T showed up 3.5 weeks ago after a loud concert. Acoustic trauma I was told by two ENTs. Although no guarantees, both thought it would resolve in time due to there being no hearing loss ( saw an audiologist who tested it) and not a lot of exposure to loud noise. I was told to think of the hair cells in my inner ears as bent not broken and that my body needs time to heal them, which is good news b/c broken is permanent. That said, how much time is unknown and everyone is different and it may never go away, but they did confirm for me, and for all of you out there, that statistically, most T cases do resolve in time.

      I have been dealing with the anxiety, fear, well terror actually, sleeplessness, all of it. This forum and the support I have received have been a life saver. The good news is that generally speaking, my T is low in volume and easily masked except for in very quiet environments. And I can tell you all that a quiet room has become my new nemesis. Right now we still have air conditioners in all the rooms but it is fall and they will come out soon. That thought strikes terror right through me. Sometimes, I will hear high pitched noises That I think is my T and then I walk out of the room and it is gone and realize it was the squeak of the screen door closing or a secondary hum of the A/C or another appliance. Then I think that I have just gone completely crazy. Has that happened to any of you? Anyway, no real improvement in T but it is not worsening, which is a good sign I guess. I have known a couple of people with T from acoustic trauma and it resolved but only after many, many months so I guess there is hope for all of us but I also realize that the longer I have this the less likely it will reslove be I have to find a new normal. The hardest thing for me right now is not sleeping on my side any more. I have to sleep on my back, as when I occlude my ears against the pillow, I hear T. So even though I am sleeping ( with medication mostly), I feel like a prisoner of position in my own bed. Not the most restful.

      So why the terror today? I am afraid this new specialist is going to tell me that my hearing test was all wrong, that the audiologist and ENT I saw last week were wrong and do not know what they are talking about, and that I have some profound secret hearing loss that was undetected and there is no hope for me and that I will only get worse. Now I know this is irrational. Is this just my anxiety talking? Does anyone have these irrational fears?

      Thanks for reading.....
       
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Please keep us posted of your appointment today and hope give you some calming news and support .
      Try stay positive as its early days and could go away over time.
      The unwanted emotions can keep coming and letting our minds over think and tinnitus picks up on the stress and spikes it.
      Stay positive your life is still as happy as you make it and need to push harder not let the tinnitus win...
      stay strong and let us know how you got on....lots of love glynis
       
    3. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Hi. My tinnitus seems to sound different in different rooms. I think the acoustics of a room have an effect on how it is perceived. I don't really understand why, but I wonder if this is partly what you are experiencing/describing. Anyway, I remember in the early days I would frequently be wandering between rooms studying how it seemed different, hoping I could hear it getting quieter day-to-day, getting excited if I couldn't hear one component of it in one room only to have my heart sink when it came back in a different room. This was a big thing for me, and it took me months to let go of that. I don't know whether what you are describing is the same as that.

      Quiet rooms definitely make the tinnitus seem louder, but if your experience is anything like mine (it may well not be if your t fades away) then as your mind gets used to the sound there will be less anxiety attached to it and quiet rooms will be OK again. In fact I find that I really need quiet now. If I am around even moderate noise for a while I start to feel bugged by it and to feel the need for quiet. But of course everyone is different, and if quiet rooms lead to anxiety for you at the moment then of course that is to be avoided. Personally, I think my t got slightly quieter over time, but the most helpful improvement was that the sound became less piercing/angry/intense, and so less anxiety inducing. I found melatonin helpful with getting back to more normal sleeping patterns, which is around when the anxiety and the intensity of the sound started to feel a bit better. There is a thread on it:

      https://www.tinnitustalk.com/thread...al-especially-in-preventing-hearing-loss.401/

      I hope what I have said is helpful. I'm aware that some of it might provoke some anxiety, but I'm hoping that overall more information/perspectives are better than less. I really hope your tinnitus does improve... best of luck.
       
      • Friendly Friendly x 1
    4. Forever hopeful

      Forever hopeful Member

      Tinnitus Since:
      August 2015
      Thanks for the responses. @glynis-harbron and @dboy.

      By way of an update, I had a good meeting ( I think) with the audiologist but it was also a little sad. I learned a lot from her and some of it, disputed a lot of what I have read elsewhere. That was the sad part. She clearly does not subscribe to the thought that tinnitus will resolve for some people in time. This was not what I have been told by another audiologist and two ENTs or what I had read. How confusing. I gave her examples including someone I know who had it resolve in 4 months after an acoustic trauma and all she would say is that she would have to know his case etc. She didn't come right out and say it could never happen but she clearly thought that those cases of "T resolving" were really just habituation Of course her business is also TRT so maybe some bias. She did not seem thrilled that some ENTs still promulgate that chronic T can resolve. That said, this is what I learned:

      Hearing loss/ ear damage is not required for tinnitus. The fact that I do not have hearing loss means nothing in terms off my prognosis. Another sad moment as I was hopeful I would do better due to there Being no hearing loss.

      I may in fact have some auditory damage above what a normal hearing test shows. But we will never know and again, it really doesn't matter because of the irrelevant connection between T and hearing loss in her opinion. It does not matter why you have it, just that I was unlucky to get it basically. It wasn't that she wasn't nice about it, she just was very matter of fact.

      I asked her to fit me for ear plugs b/c I had trouble with regular ones. She does not think I need them or should wear them. I was Shocked. Just SHOCKED. She told me to stop trying to wear ear plugs and "over protect "my ears because most noise will not damage my ears and hearing and can actually make T worse by making my ears too sensitive. I complained about how loud things can get like an ice show I am taking my son to or a movie theater,or blow drying my hair or my son's loud hockey games at the rink and she said to stop the ear plugs. She stated that limited exposure is fin and safe and not going to hurt me. She said hair dressers using blow dryers all day get T or musicians who are exposed to loud music all the time get it and should use ear protection but not me since my exposure is limited. So now I am thinking so why the heck did I get this darn T? I do not have repeated exposure to loud noises. Ever! Why? why?


      Sound therapy is good, masking is not if you want to habituate. Not sure I know the difference since m T is so easily masked by even small ambient noises. I tried on the ear noise diffusers and even on the lowest level, I could not hear the T at all over them. So she thought I was already habituating. So I was advised to use a sound machine for sound therapy at a low level and not worry if I could hear T or not just leave it at a comfortable level. And stay out of quiet rooms. And stop trying to find the T in quieter settings so I can stop perseverating on it.


      Does any of this make sense to anyone out there?
       
    5. Quentino
      Tired

      Quentino Member

      Location:
      France
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Decrease of Hearing i presume.
      Because for some people it's permanent, she doesn't want to give false hope. I understand her.

      You have no hearing loss! That's great! This is the more important for me.

      T can also be a simple "shock" of the ear, the ear is not damaged but still ''remember'' a trauma. Or just a Minor damage but which shocked the brain.

      I hope you will get better!
       
    6. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      Sounds like your audiologist was right in most cases. Chronic T does not resolve for many people. Habituation happens for nearly all eventually though. There is no direct correlation between T and hearing loss. Having X amount of hearing loss does not translate to a Y level of T noise or multiple frequencies. However, it is clear that a hearing damaging event is involved given the fact that acoustic trauma and middle ear infection are the most common triggers for T.

      I don't agree with the over-protecting though. All the sounds you are mentioning may be part of normal lives but that doesn't mean it is safe for human ears to handle for days on end.
       
    7. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi forever hopeful,
      Yes it makes sense not give you maskers as not needed and sound therapy to help set below your tinnitus when needed.
      As for if your tinnitus will go or not dont worry as our brain is really clever and you wont notice your tinnitus or see it as a threat and just might find a spike difficult but settle to your normal base sound.

      Tinnitus as lots of sounds and strengths and a lot of people habituate to tinnitus and dont give it the time of day.
      There are some who have tinnitus thats sever and for them medication and other help is needed..lots of love glynis
       
    8. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      I think there is a case for using some hearing protection in the next few weeks/months, but using it sparingly. Overuse might cause more harm than good as your audiologist suggests, but at the same time my belief is that following a trauma our ears are more sensitive to loud sounds and are easier to damage. That is my own experience, and I've read other's experiences on this forum that tally with that. I'd try to take a middle ground and protect during the exposures that you mention (or avoid them for a few weeks), but be careful not to wear protection too long or too often as this can lead to hyperacusis, as well as probably increasing your anxiety as you will hear the t more.

      Not masking seems reasonable advice to me. When I was in a really bad way I used masking occasionally to try to aid sleep, but I'm not sure it was very helpful for that. In waking hours I made a conscious decision that I had to not hide from what was happening, even though I was very freaked out. I also rejected the benzodiazepines and antidepressants that doctors wanted me to take for similar reasons. I think this probably made things harder in the short term, but possibly easier in the longer term.

      If your t is easily masked by small ambient noises then you are quite lucky. Even if it does not fade away, it is not a disaster. Although you are really scared at the moment, you will probably soon find that this is something you could actually live with. It is a shame to lose that sense of peace that silence can bring, and you might experience occasional sadness related to this. But most probably in a few weeks the way you feel now will just be a memory. Your brain will not notice the t anywhere near so much, even in quiet rooms. It will probably just be a very occasional minor annoyance, if that.

      Try to focus on doing things you enjoy and that will help you relax. The stress and anxiety you have been feeling are probably (as Glynis said earlier) making the t seem louder. Try to focus on other things and give your body its best chance to heal. Be kind to yourself and try to avoid thinking of this as a catastrophe. Best wishes.
       
    9. Forever hopeful

      Forever hopeful Member

      Tinnitus Since:
      August 2015
      Thanks for all the responses. My husband had a very different opionion of the conversation, which is why I brought him. He said it was clear she realized the sound devices were not going to work for me because I could not set them to just below my T level as when they were at the lowest, I could not hear the T. He said that the vibe he got was that she saw my T is minor but did not want to minimize my pain as I was sitting there in tears. Terrified about the future. So she recommended i get a noise machine and set it at a soothing sound at a level that is comfortable for me as sound therapy and not worry about it being below my T level. She said immerse myself in sound - radio in car etc. obviously not blaring . She also recommended a sound pillow since I am a side sleeper.

      @dboy, I realize that I am lucky that my T is so easily and naturally masked by the environment. And you ate right, if it does not change, I will be able to live with it. I just have to get over the fear and anxiety that my life is forever changed.

      Let me as a question, does this mean I won't habituate?
       
    10. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Not at all. It is natural that you are scared and anxious at the moment. Something has gone wrong and that something may possibly not be fixable for a while (hopefully only until the gears of medical science have ground around for another few years). I don't know how old you are or what your history is, but I think it is normal that we view our bodies as fairly unbreakable until something does actually go wrong. Even though we know about mortality and illness as information, the reality of it is easy to avoid looking at too closely until something does breakdown. Then it is a shock. It takes some getting used to that the experience of being 'me' is going to be different to what it was before. That process of getting used to it is different for everybody, but if your t does not fade (it still might) then you will habituate sooner or later. It does not mean you will never feel some sadness about what you lost, but you will definitely still be able to live a good life and feel genuinely happy (of course, life is full of losses alongside the good stuff). There are people on this forum for whom habituation is more difficult, but those are mainly people unfortunate to have much louder tinnitus than yours. So long as you are reasonably careful about noise exposure and ototoxic medications there is no reason for you to worry that your t will worsen.

      Your husband sounds very supportive (which my wife is also) and that will be very valuable during the next few weeks. Don't be afraid to change your activities if you need a bit of extra space while you deal with your feelings. It doesn't have to be business as usual with you expected to suppress what you are experiencing. It is OK to grieve a bit, because that is how we process loss in a healthy way. But don't doubt that you will be happy and functional again soon. :)

      Edit: In case you have not seen it:

      https://www.tinnitustalk.com/threads/does-everyone-eventually-habituate.10855/#post-134000
       
    11. Forever hopeful

      Forever hopeful Member

      Tinnitus Since:
      August 2015
      Thanks @dboy.

      One of my biggest fears is the T getting worse ( see my post "tinnitus nightmares". -although my husband is convinced what I heard was the a/c freezing b/c it woke him up as well).
      Last night, I went to a wine bar I love with my husband the music and crowd was very loud so I put my ear plugs in and my husband said, do not use those the audiologist said you do not need them, but I felt it was loud enough I did not want to chance it. It did make it hard for me to hear him and a couple came in and my husband was talking to them and I really could not participate in the conversation. I could hear part of it but not all. The anxiety around the fear it will become more intrusive and louder is at times almost unbearable. And yes, it is awful to realize you have this permanent condition that you cannot control. I am 48 by the way, and have been in good health. I have no hearing loss or chronic exposure to loud noise. No meds until this hit. Now I take a sleep aid and sparingly use an anti anxiety when I need it. I also refused the SSRI they suggested because although low, there is a risk of T from the SSRIs. There was an opportunity to look at an older antidepressant that does not carry the same risk but I opted not to. But I confess it is hard. I am angry that this happened. I dread the night as once my mind is not focused , I focus on the T even if I can't hear it b/c I have my nature sounds on, which I have decided I like and do find soothing to a certain degree. Just knowing I have this condition is wracking havoc on my mind. I cannot just relax anymore. I never watch tv b/c I focus on trying to find my T. What a bummer. I miss that. Just watching a girl movie on the couch. I just can't do it anymore. No more sleeping late. I wake and my mind is on T. My mind is so preoccupied with T. Not b/c I can hear it but b/c I know I have it and it is forever. But you are right, I have to find a way to get to a place where I can deal. I am trying to find a CBT therapist but most know nothing about T so I am going to look for a therapist who deals with chronic medical conditions.

      Anyway, thanks for the support.
      D.
       
      • Hug Hug x 1
    12. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Trust me, the anxiety will fade and watching movies etc. will be fine. I can hear my t clearly over TV at any reasonable volume but I still enjoy watching films (if they are good anyway). You are just going through a stage that many of us go through - you are getting used to a change. If it does not fade then you will probably find in a few weeks or at worst months that you are literally bored of thinking about it and searching for it and will just want to get on with life. That is, of course, if it does not fade away which it still might.

      You are very welcome. Best of luck with the therapist.
       

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