Really need some help with tinnitus

[caffclifton]

Hi All

I have had T for only 7 1/2 weeks now which I know doesn't seem long but its driving me insane. I'm crying every day and feel sick to my stomach. I have seen an ENT and they have advised me i have high to mid frequency hearing loss which was caused by a virus I had (I had dizziness and sickness for 2 weeks at the beginning)

I am going to see someone about a hearing aid soon but im really struggling to believe that ill ever habituate. Do people with severe tinnitus really jst not hear it or focus out from it? Im finding it so hard to believe.

Any support or advise from anyone would be massively helpful.

I'm only 23, and I'm so worried this will effect me when i have kids, get married and all that jazz.

Thanks

Caff

 

[Dr. Ancill]

At the moment, the tinnitus has control over you. The first thing you need to know is that you will eventually habituate and it will be much less bothersome. It may even go away. However, you should plan for it not going away and there are 4 steps: (1) Educate yourself, (2) talk to your doctor about getting treatment for your anxiety and/or depression; (3) Make sure you get enough sleep - try melatonin + Benadryl and (4) Sound-retraining. If you get hearing aids, make sure you get ones that can be linked to your mobile phone via a wearable transmitter. then find some sounds that you like (music, nature etc) with an appropriate App and use that to distract your brain from the tinnitus. I have had my tinnitus for 10 months. It took about 3 months to get control over it.

 

[caffclifton]

Thanks for your response
Ive heard stories that T does go away completely and im still holding out some hope that this was the case. When the doctor advised me that i only had labyrinthitis and my T would go i lived quite happily with it but since my ENT said i would have it forever its put me into utter despair (i know it sounds silly but its really how i feel) Also the hearing loss is having a huge effect too. going from perfect hearing to only hearing muffles in one ear has been so difficult i LOVE music it was everything to me now i cant even listen to a song without hearing loads of "morse code" type sounds and bass.

I have been trying to educate myself on tinnitus but just keep finding myself looking for success storieswhere it goes away. I spoke to my doctor about my anxiety and she gave me diazepam which made me really sick so i only took that once. She said it would be short term anyway. Now instead of getting on the pills im just trying to cope with it by talking to friends family and of course you guys on here. talking must be better than tablets. Sleep has been the hardest thing for me, i find im tiiring by about 8pm each night and when i do go to sleep i have a fan on and rain sounds through a speaker pillow but that doesn't seem to help much as i wake every 2 hours. Is Benadryl not for colds... i have looked into menatolyn can this be bought at a health shop (should i discuss this with my doctor to see if she can recommend dosages)

Im currently looking at getting NHS free hearing aids BUT me and my partner have both agreed if i dont like them and don't feel confident in them then i will get some privately. The only reason I'm waiting is because i thought i may as well try the free option first. Do you listen to music in the day? I find this hard as im constantly on the phone looking for new business or out driving to meet clients. Meeting clients is so hard because im not focusing on what their are saying im focusing on the ringing! I just feel like im never going to habituate.

Thanks Caff

 

[rtwombly]

The first three months are difficult. You will likely find that the tones of your noise will fluctuate over the course of weeks. Remind yourself of how it used to be; the new sounds are habituation. Silence would be preferable, but so long as something is changing, you know your brain is working to adapt.

Personally I'm holding out great hope for the Autifony drug trial that will be recruiting shortly in the UK. You can read about it in the Research section. It sounds like hearing aids will be an important step for you, so keep looking forward to that intervention and keep a positive attitude about the research being done.

Make hope your new best friend. It's remarkable how well you can live on hope.

 

[washashore]

I found this thread on another forum very helpful... http://stringplayer.websitetoolbox.com/post/words-of-wisdom-2964711

 

[ampumpkin]

@caffclifton how loud is your T? Do you hear it over everyday noises??

 

[caffclifton]

Thanks rtwomboly.

The sounds are still the same as when they first started. An underlying hum then a screeching sound over that. It's just unbearable I literally cry all the time I can't help this horrible feeling

I'm also upset because when I'm in the car I can no longer listen to the radio. Because of my hearing loss all I hear is like underwater music or talking or like beeps and bass. Will that just go or will it be like that forever.

I know you guys are trying to help but I'm just struggling so much. All I want it sleep and to be happy in life again and to look forward to things.

 

[caffclifton]

Ampumpkin, yes I hear it over everything. Nothing I have tried has masked it

 

[ampumpkin]

@caffclifton do you hear it above the shower?

 

[caffclifton]

@ampumpkin I don't hear the low hum above the shower but I do the screeching sound

 

[ampumpkin]

and this was caused by a virus?? a labyrinthis? Everything spinned around you for several weeks?

 

[caffclifton]

That's what the doctors origionally thought but the ENT couldn't confirm that was it for sure. It's was definatly a virus tho

 

[Marlene]

Lots have muffled ears,like your ears are full .Early days it's been known to just go as it began ,strange comment from ENT in early starting of it.get some natural sleep stuff from Holland and Barrett,or most supermarkets stock these,give them a try.i get days I find it hard listening to people,wether it's on the phone or face to face,I tell people I have tinnitus if it's high,can't concentrate,ears won't have any of it.Maybe you could be speaking to persons with this condition but you wouldn't know,so tell them ,lots will understand..Hearing aid have greatly improved under the NHS,not like they were in our parents day.My husband and couple his mates got aids NHS ones,you wouldn't notice,that being said I'd pay private if I needed to..Good Luck Caff

 

[caffclifton]

I think he muffledness must be from the hearing loss. He said that will never get better. I hope that the feeling of fullness will go but the ENT said he didn't know what that was. Maybe because I was going deaf it was just a new feeling I had to adapt to. I'll go to holland and Barrett and see what they can reccomed. How long have you had T for and you still find it hard? I'm hoping the aids to help but I'm hoping people won't judge. I just keep thinking a couple of months ago I was fine now I have to suffer ringing in my ears for the rest of my life. My whole life!! It's just so hard to take in

 

[nogood]

[ i actually posted this on your other thread.. deleted there and reposting it here ]
hi caff
we all here understand how you feel
yes it will be hard at first
better get help from a doctor for anti anxiety meds and something to help you sleep
Its not gonna be easy but as many will say" it will get better with time".
Avoid staying alone esp in quite place, try going for walks and listening to masking sounds like water flow birds and nature sounds.
Tinnitus talk has a radio that you can listen to.
Have you talked to your ent about getting some steroids, it might help if its inflammation. Also try NAC [N-ACETYL CYSTEINE]. Also ask your doctor if you can take piracetam, ginkgo biloba, vinpocetine these might help esp piracetam and vinpocetine these two help increase blood flow to your brain and make your brain smarter, in other words help you adopt to your T faster. avoid coffee or too much tea, smoking and alcohol [yeap basically try having a clean living it will help with faster healing of the damaged caused by virus], good amount of water and exercise and clean food
I also suffered similar situation like you, serious health conditions flowed by nasty cold and virus infection now resulted in tinnitus.
Please dont think too much about this now, the more you think the more worst it will get. In time your brain will soon adopt to it. you are very young and lots and lots of treatment options coming up, looking into nero-modulation and mutebutton [soon tobe released].

from what i read i can only guess you have high frequency hearing loss too. The T in higher frequency are very hard to mask.
I can suggest one other thing do full audiogram both low and high frequency [ upto 16k or higher] see where you have higher frequency loss.
also try this http://www.generalfuzz.net/acrn/ and http://www.audionotch.com/app/tune/. You also can find some apps for mobile phones which will generate sweeping sine waves [ go from high to low and low to high frequency sound waves] these apps might help with find right masking solutions and/or calm down a spike..
[ i use this for my andriod https://play.google.com/store/apps/details?id=com.jm.android.frequencygenerator]

good luck.

 

[caffclifton]

@nogood thanks for your post. I had an MRI and the ENT said there is no inflammation and everything looks perfect. I have been taking Gingko for a few days but doesn't seem to be helping just taking one in the morning.

The ENT said that things like coffee and caffeen don't really have an effect on tinnitus?

When you say my brain will adopt to it what do you mean by that (sorry a bit confused) I am being refered for hearing therapy and then the hearing aids.

Yes I have high and mid frequency hearing loss. Is that one of the worst tinnitus you can have?!

I had a hearing test at the audiologist is that what you mean by an audiogram? The audiologist didn't tell me what exact frequencies only that my low frequencies where good.

Thanks for the app suggestions. I'll have a look

Thanks

 

[Marlene]

I think he muffledness must be from the hearing loss. He said that will never get better. I hope that the feeling of fullness will go but the ENT said he didn't know what that was. Maybe because I was going deaf it was just a new feeling I had to adapt to. I'll go to holland and Barrett and see what they can reccomed. How long have you had T for and you still find it hard? I'm hoping the aids to help but I'm hoping people won't judge. I just keep thinking a couple of months ago I was fine now I have to suffer ringing in my ears for the rest of my life. My whole life!! It's just so hard to take in [/QUOTE

I've had tinnitus fair while,but I've had other issues along with it ,my husband hardly ever takes notice of his,and he's had his long time Caff,some it bothers more than others .im alas one of the later,but like most we find our way through,your young so look on the upside your can fade into nothing yes that can happen ,my own daughter had this buzzing for few months then it just went.never came back,touch wood,think hers began after she went to the O2 in London ,she was at the front,learnt her lesson there.
As for wearing aids,why worry what people think,it would be like any aid one needs.honest no one takes scrap of notice,I've worn maskers ,no body's stared,you'd be the only one self conscious.Stress is the blight on tinnitus,that's what your going through,all quite normal.need to find ways to calm down,then it will fade into background your find you can just ignore it lots do.Keep in touch ,let's know how your doing .xx
PS look up British Tinnitus Association,I'm a member,they have various things you can get to help,also look for a support group in Oxford,we have one in Bournemouth,they can give you help at end of phone BTA will help you with that,also an excellent magazine.

K

 

[Karen]

Hi, Caff,

I'm so sorry to hear you're struggling with high-pitched tinnitus. I've had tinnitus for many years, and, believe it or not, it is possible for your brain to adapt to it. When you adapt (or habituate) you will still be able to hear the tinnitus if you listen for it, but it won't be foremost in your thoughts. Hard to believe, but true!

Also, about the feeling of fullness you're now experiencing --- I think it has to do with your Eustachian tubes being unbalanced in the early stages of tinnitus. But, after you've had tinnitus for awhile, the fullness feeling will subside, and in my case, it totally went away! Yours may go away, too.

I'm glad you're going to look into getting hearing aids. You may wish to try more than one type before you settle on one that works for you. For some people, they really help a lot.

You're wise to look into natural supplements to help with sleep. Natural supplements are a bit more subtle than prescription drug sleep aids, but they really do work if you give them a chance. Melatonin works well for some people; for me, it worked for awhile, and then I switched to something else. Valerian root is another natural supplement that works well for sleep. And -- I take magnesium chloride tablets about 1 hour before bedtime. They help me relax and go to sleep naturally. They might work for you, too.

Take care, and I hope you are able to get some sleep tonight.

Very best wishes,
Karen

 

[billie48]

Sorry to hear that you are struggling with your T and welcome to the board. You are at the right place. Ya, we all know T really hurts initially. That is to be expected when your tinnitus is so new. The 1st phase of T suffering is often traumatic. Many of us have gone through the same tough struggle you are going through now. So we truly understand how you feel and have deep empathy for your sufferings. I encourage you to lighten up and relax a bit. Your T being so new, it may just disappear or fade over time. So take it easy. You are at the early stage of T suffering and so you tend to have distorted thought about the future. In CBT, these are called cognitive distortions which tend to cause you to think in unrealistic or catastrophic way about the future. You can google it to read up how cognitive distortions can really increase our anxiety & affect our mood or judgement.

Right now, your brain is under the control of the limbic system due to the tinnitus trauma, and it functions in 'fight or flight' mode which tends to make you think that things are much worse than they are. Most of us have gone through the sufferings you are going through, fearful, worried, depressed, sleepless, not knowing how to face an uncertain future, etc.... But many of us do recover or are recovering. Many posted their success stories. I posted mine here & a longer version on Yuku support board. So you should read up these success stories to help you calm down and have a brighter hope for the future.

I also highly recommend you to read up on Dr. Stephen Nagler's "Letter to a Tinnitus Sufferer". He also suffered with tinnitus like us before and has recovered. You can read it and try to follow his advice to improve your condition. We also have Doctor's Corner for you to ask questions about your condition to doctors who are currently with the board.

There is also an earlier thread on what to do if you are new to T. I have listed 8 steps there to help a newer sufferer to cope with their new T experience. Check out this link to see if the info can help you. Don't worry too much for now. Let time do its magic want of healing. One thing I have learned about T is not to rush it, not to expect a miracle overnight. Take care & God bless your recovery.

https://www.tinnitustalk.com/threads/new-and-stressed-with-tinnitus-read-this-first.3978/#post-40275

 

[I who love music]

I could tell you about people I know, having a great life with T worse than mine, and mine is bad. Hang in there.
I've been to ENT's, chiropractors, headache specialists, I've taken every herb and vitamin, all kinds of medicine, I've done different kinds of cognitive therapy, accupressure, excercises, manipulation, etc etc etc. I can lump all of these in a big ball and multiply that ball by a thousand and it wouldn't come close to my discovery of "Gauge your response, not the T itself."
Through the years (40 years) I've had times I wanted to die, and lived with horrible anxiety, and the T pretty much put me in a pissed off and scared mood for many years. I've had all kinds of sounds in my head. I've heard it all. I have high hearing loss, T, H, and distortion bad in one ear triggerd by most high and loud sounds, and that, sadly includes my mother's voice.
NOTHING has helped me like switching my mindset from listening to the T, to gauging my response to it. This has been a miracle and when I hear T, I could care less. I tried this maneuver after reading about it here on this forum. It sounded interesting so I thought I'd try it. My expectations were not high. I got T when I was 14, I'm now 55. So, one day I got up, ears ringing and squealing and I said to myself, "There it is, I'll go about my biz, I wish I didn't have T." That was my response. Not, "Oh no, it's louder this morning." I simply don't respond to the T, I gauge my response to it. For instance, today I was driving and either the T came on strong or I suddenly heard it (same thing I guess) and I instantly said to myself, "Wow, 6 months ago I would have freaked out." And as I remember it, it dissappeared and went to the store and went about my business. I've trained myself to do this. I measure my response. Honest to God, I can't even gauge my T anymore. It's been months since I remember thinking, "It's so loud," or "I think it's louder and lower today."
I believe this is some kind of retraining that more people should know about. And probably many people (myself included) would not have too much faith in this at first. I don't think it requires faith. It's simply a pattern of action. It's DOING something instead of 'listening' to T and worrying about it. I'm the guy who invented worrying, and as I said, had all kinds of unsuccessful treatments and trials. In 40 years, nothing has helped like this has. I'm saying that gauging my response instead of the T has taken away my worry (look at my avatar, I'm 'cheerful'), lowered the T sounds, and I feel 100% again.
People have written me and said, Good for you. Well, I say, Good for all of us that we have this forum and slowly, one by one, success stories do appear.

 

[caffclifton]

Hi All,

Thanks for your comments. I sill woke this morning feeling a bit anxious and wondering why this has happened to me but im sure in time that will pass. Hopefully the hearing therapy will help me with my habituation. I think at the moment because its all so new i miss being "normal" and having a "normal" life with no T, T is just one more thing to worry about at the moment.

I need to stop hoping that it will "just go" and try to get on with it. It really really sucks but ive got to try.

xx

 

[derpytia]

Hi All,

Thanks for your comments. I sill woke this morning feeling a bit anxious and wondering why this has happened to me but im sure in time that will pass. Hopefully the hearing therapy will help me with my habituation. I think at the moment because its all so new i miss being "normal" and having a "normal" life with no T, T is just one more thing to worry about at the moment.

I need to stop hoping that it will "just go" and try to get on with it. It really really sucks but ive got to try.

xx

Hey Caff,

You sound just like me when I first got the T and when I was in first couple of weeks. I've had T for three months now and let me tell you, I totally understand your pain and your tears and the sense of being outside the norm. I too watched people walk by and I felt envy towards them for how normally they lived their lives. I also grieved for the loss of my 'normal' life. Sometimes I still grieve for it and I still feel envy. Just know that you are not alone in that.

Sometimes I still even have little breakdowns but guess what? I always recover. It might take me a day or two to recover mentally but I always recover and get right back on track for habituation. I've even had less problems than I thought I would going back to my summer job and I'm only 3 months in! Some people here have told me that at three months in they were still stuck in bed or caught in the clutches of not being able to go out and do anything.

Since I've come home for the summer after my second month with T, I've gone to a broadway show my friend was in, I've gone out to eat with my boyfriend, I've gone shopping with my mother, I went on a hike with my boyfriend. I'm doing things that I was so completely sure I'd never be able to do with T. Mind you, there are still some things I'm afraid of doing but I know that I'll do them eventually and I'll be alright. It takes time (and I'll admit, I have no patience when it comes to my health). You and I will both get better one day I promise. Something that helped me remain functional enough to go to classes and take my finals in the very beginning for me was telling myself "one day at a time". It helped me not worry as much as I could have about the future and it helped me get through the day. Maybe that'll help you too. I'm not saying I'm all better cause I'm not. You'll still see me here on this forum asking for hugs and help and support because I need it. But I know that in time I will be much better than I am now.

You'll be okay

 

[caffclifton]

@derpytia Thank you for your comment, it really helps to know that im not alone. im just taking every day at a time. I really want to go out and do things but im so scared. I have a holiday booked to magaluf with some of my girl friends in September and im still too frightened to go. They have told me we wont go to any clubs if i dont want to (even tho the ENT said ill be fine to go). I think its knowing that im going to have this for the rest of my life im finding really hard to accept. i just keep thinking oh it will go away soon then i realise no it wont and i go back into despair. i keep wishing there was a course of antibiotics i could take and in 5 days it would go. I dont want to keep bringing negative comments to the forum but i just need to let all these horrible feelings out. I ave suffered with depression before for other reasons and it makes me sick knowing im going back down that road.

Caff xx

 

[derpytia]

@caffclifton

This forum is a place where people can come and vent and ask for help and get their feelings out and talk to people who understand what it is like. You are more than welcome to vent here, I know I have and still do.

I too have had difficulties in my life. I remember sitting out on my patio at night crying my eyes out and asking God why he let this all happen to me. I was born with an eye problem which was fixed, but the cost was my sight in that eye. I've had so many struggles and difficulties and I remember at one point I even thought to myself that my life with T was so horrible that living was not even worth it anymore. I have always wanted one thing in life, to be happy. T does not make any of us here happy at all. But that doesn't mean that the rest of life cannot offer us happiness anymore. I remembered when I smiled for the first time after I got my T. I thought I was going crazy because I was under the impression that after I got T, nothing could ever truly make me smile. But there are still things that do.

It takes a while to accept the T. To this day it still sounds like such a crazy concept to me. I still haven't really accepted mine. I actually think that some of us go through those popular stages of grief when it comes to the T and I know that I'm still going through it.

And the good news it, you're not crazy and I'm not crazy (well, maybe just a little bit lol ) and none of us here are crazy. All of these things are normal. The only thing we can really expect out of T is that it is unpredicatable and that it is just a sound that cannot hurt us physically.

You and I will find ways to cope and live with this and I bet that one day, we'll both realize that we've tuned it out or that it is no longer the monster it was in the beginning. It just takes time and you already have such strength for giving life a go, even if you're scared.

 

[caffclifton]

It just really sucks that there is no cure I just keep thinking like when i get married im going to have this and when i buy my first house. I JUST WANT IT TO GO

 

[caffclifton]

@rtwombly Ive looked into that Autifony, looks like they will be doing trials in the UK soon. Ive emailed them for some more info! #HOPE

 

[caffclifton]

I also am having a filling done on Friday and im terrified that will make me T worse!

 

[citigirl13]

Hi All

I have had T for only 7 1/2 weeks now which I know doesn't seem long but its driving me insane. I'm crying every day and feel sick to my stomach. I have seen an ENT and they have advised me i have high to mid frequency hearing loss which was caused by a virus I had (I had dizziness and sickness for 2 weeks at the beginning)

I am going to see someone about a hearing aid soon but im really struggling to believe that ill ever habituate. Do people with severe tinnitus really jst not hear it or focus out from it? Im finding it so hard to believe.

Any support or advise from anyone would be massively helpful.

I'm only 23, and I'm so worried this will effect me when i have kids, get married and all that jazz.

Thanks

Caff

Hiya Caff.

Sorry to hear that you are struggling. Don't worry - we have all been where you are. I remember the first week I got T (I believe from a cold) I was terrible: struggled to sleep, couldn't eat - I even made myself sick from the fear and anxiety of it all. I honestly thought that I couldn't last like this.

But it's now six months to the day since I got T, and I can honestly say I am a whole lot better. There are days when I realise that the T has barely bothered me. Sometimes I have bad days, but they are getting a lot easier to manage now.

I can understand where you are coming from: I myself am 22 and the thought of having this forever is scary. But I have spoken to two people in real life who had T, and guess what? Both of theirs went away, one after "months" (she can't even say how long for certain, but I'm guessing over six) and another after two years. And the woman who had it for some months got it from a virus like you.

I would advise not thinking about what it'll be like in the future at this point. Just get by day to day and the future will take care of itself.

My advice would be to try to distract yourself. You are doing the right thing seeing doctors, but in your own time I suggest doing things that make you happy and keep your mind focussed off the T. It is hard, I am not going to lie, but you will get there. Do things that you enjoy, though if you are going to loud places I would be careful and take earplugs.

Don't despair. You haven't had T for very long, and it can still go. I read a story where it went away after sixteen years. And as I said before, my mother's friend had T for over two years and it went away. There is really no time limit for when T can go, so don't despair over it. Try to forget about it.

As for your question about adapting - yes, when you adapt to T you barely notice it. It is still present, but you don't focus on it. T is like a monster, and you make it bigger by focusing on it. I have gotten to the stage where I can forget about my T for hours, and you will get there too.

As for your question about having a filling done, I doubt that will increase your T. I think the case of when you have T because of your teeth it's when you have TMJ (and since you T is caused by a virus I doubt that you have TMJ) or when a dentist has done really bad work on your teeth - and even if he did, I don't think fillings could make it worse. Wear earplugs for the drilling, but other than that you should be fine.

And if you are flying I would look into the thread about flying with T (use the search icon at the top). Personally I flew when I had T about four and a half months and it didn't affect my T at all - I did take precautions though. See the thread for more details, or message me if you have any questions And perhaps not go into clubs, to be safe.

You will be fine. Honestly. It doesn't seem like it now, but you will be.

 

[caffclifton]

Hi @citigirl13 what a relief to hear of some real life recovery stories. That has given me so much hope that my T may go!

I have also got SSHL (hearing loss) with my T that's making it a lot harder as I am learning to adapt to new/no sounds. I have tried going out and doing things but when I'm in crowds all I hear is beeping and bass and it makes it so hard to focus so i find myself focusing on my T

I just feel so panicy and on edge all the time and also deep sadness. Do you feel like you are coaping well with your T?

I flew when my T was about 1 month in and was fine so hopefully this flight will be OK.

My ENT has said I can still go clubbing and that and I'll be Ok but I really don't beleive him

Thanks for your words of support they really do mean a lot to me.

 

[citigirl13]

Hi @citigirl13 what a relief to hear of some real life recovery stories. That has given me so much hope that my T may go!

I have also got SSHL (hearing loss) with my T that's making it a lot harder as I am learning to adapt to new/no sounds. I have tried going out and doing things but when I'm in crowds all I hear is beeping and bass and it makes it so hard to focus so i find myself focusing on my T

I just feel so panicy and on edge all the time and also deep sadness. Do you feel like you are coaping well with your T?

I flew when my T was about 1 month in and was fine so hopefully this flight will be OK.

My ENT has said I can still go clubbing and that and I'll be Ok but I really don't beleive him

Thanks for your words of support they really do mean a lot to me.

Don't worry about it - I don't think there is one person on this forum who doesn't understand what you are going through. And yes, there are recovery stories about T. On the internet it feels like it may be forever, but when you speak to people in real life you realise that not only have they coped with T, they have had it disappear too. Have faith - it may take a while (ears take a long time to heal) but it can and is likely to go.

I am coping with my T - today anyway. As I said, the bad days where I am upset with my T are getting fewer. This will happen to you too.

That is good news that you have flown with your T and you are fine. I would advise not going to clubs, or if you do take earplugs. Even with normal ears clubs can affect your hearing, and to be honest I doubt you would enjoy it worrying about your hearing.