Week 5 of Tinnitus. Any Positive Stories Welcome :)

[lucy7]

Hi

I developed tinnitus around 5 weeks ago. Initially my GP thought it and the loss of hearing in my left ear were linked to a blocked eustachian tube after a cold on holiday, but after a hearing test it was clear I had lost most of my hearing in my left ear. I've had an MRI and await a follow up appointment next week, but have been told I could have nerve damage due to a virus as there seems to be no other obvious causes at the moment. I have had a long stressful year previously, and I do wonder if it has been involved. Sucks that something so invasive has not already got a medical cure and that by the time I was directed to a private ENT, the window for taking steroids effectively had pretty much disappeared. I've seen some positive comments on the internet about habituation, but also some horror stories and I can't help but feel that the latter feed into peoples anxiety and exacerbate the problem. I remember hearing a story years ago about someone who committed suicide due to tinnitus, and I think that is lurking at the back of my mind, winding me up! Any positive stories would be very much appreciated.

 

[Teri]

Welcome Lucy!

I had some really rough days with T on the onset. I still have some bad days but as time goes on, the bad days are less. I have had a run of 21 good days! You will too. Please hang in there!

 

[lucy7]

Thanks Teri

I am really struggling with it at the moment as it seems to be getting worse, but I know that I need to try and calm down and forget about it as it's probably a vicious circle if you get stressed.

Helps to talk to others who have it. My family have been brillant but they dont really understand.

ps. love the little dog! x

 

[undecided]

It's going to get even worse but then it will slowly start to get better.
We've all been through it, hang in there and be patient.
The 'steroids window' is a bit of a mystery to me. Maybe you should give them a shot, talk it over with your ENT.

 

[gary]

Hi

I developed tinnitus around 5 weeks ago. Initially my GP thought it and the loss of hearing in my left ear were linked to a blocked eustachian tube after a cold on holiday, but after a hearing test it was clear I had lost most of my hearing in my left ear. I've had an MRI and await a follow up appointment next week, but have been told I could have nerve damage due to a virus as there seems to be no other obvious causes at the moment. I have had a long stressful year previously, and I do wonder if it has been involved. Sucks that something so invasive has not already got a medical cure and that by the time I was directed to a private ENT, the window for taking steroids effectively had pretty much disappeared. I've seen some positive comments on the internet about habituation, but also some horror stories and I can't help but feel that the latter feed into peoples anxiety and exacerbate the problem. I remember hearing a story years ago about someone who committed suicide due to tinnitus, and I think that is lurking at the back of my mind, winding me up! Any positive stories would be very much appreciated.

Hi Lucy, nice to meet you. If you want positive it is just a few clicks away. Go to forums then "Support" and you will se a thread Started by Demi it is called "The Positivity Thread" it should be at the top of the list. I have found it very helpful and informative and of course positive...

 

[lucy7]

eh, telling me it will get worse is not reassuring at all!

It's going to get even worse but then it will slowly start to get better.
We've all been through it, hang in there and be patient.
The 'steroids window' is a bit of a mystery to me. Maybe you should give them a shot, talk it over with your ENT.

 

[Stina]

Hello! Im glad you found this board as it is one of the most helpful ones. First of all, tinnitus might seem like a scary condition but in reality the majority of people (80%) successfully habituate on their own and the other 20% might need help from professionals. That depends a lot on the loudness of your tinnitus and your psychological state of mind. So even though tinnitus rarely leaves that doesn't mean that you wont be able to live a normal life with it. Here on this board you will find many people who have loud tinnitus and even hyperacusis who have still habituated.
And yes, you are right, stress and a "high-strung personality" definitely contribute to tinnitus (as it is a symptom not a condition on its own). Luckily there are many ways to reduce anxiety - speaking to family, friends, learning relaxation techniques, if necessary then speaking to a professional or even taking medications. All of this will help you habituate and deal with stressful situations in general.
And yes, I agree that it would be nice to have a treatment, but the good thing is that by 2020 an "epidemic" of hearing loss is expected due to noisy leisure activities which means a lot of money which means scientists and doctors working out treatments. Read the treatment section on the board and you will find many interesting topics.
In addition to this, I would not advise you to google too much. It is very hard to separate myths from facts and mostly it will contribute to your anxiety. I would advise you to find a good doctor and speak to him about it. There are many things you can do yourself to prevent tinnitus from going louder such as avoiding certain meds (ototoxic medications), not stressing too much and most importantly - protecting from loud noise. If you love going to concerts, loud clubs/bars I would advise you to invest in a good pair of earplugs, however, bear in mind that plugs dont offer a 100% guarantee so if the noise seems to loud is probably is.
Lastly, Im only 23 years old and I got tinnitus in Nov 2013 from listening to music too loud for years. I also freaked out in the beginning, mostly due to fear of it getting louder. Now I avoid too loud places (I frequently turn down invitations or leave ) and yes, it is a little annoying but I cope with it successfully.

 

[lucy7]

thanks stina, your advice is much appreciated. mine appears to get worse in loud situations and swells with noises like hairdryers, shower fan etc. i havent yet had a diagnosis/prognosis but will definitely push for help from my gp as the hearing test i had suggested severe hearing loss. my fear is that whilst I'm feeling positive now and putting up with it that it will get too much and overwhelm me? is this common or do people generally just have good and bad days and get on with it?

i'm trying to use it as a positive to address my lifestyle (i've just been for a jog for the first time in years) and to also reassess my priorities in life.

i note you use earplugs for noisy situations, but how do you cope with quiet situations, are you used to it now and tune it out?

 

[Teri]

Lucy,

Just to add....Tinnitus can be reactive. For example, my T has spiked when I have been in loud environments without earplugs, it has spiked when I have exercised, or it can spike in church with the sound system.

Please don't let this alarm you because this too will get much better.

 

[undecided]

eh, telling me it will get worse is not reassuring at all!

Um, I opted for realism. Reassurance is not my forte.
There, I gave you a hug

Seriously though, you should really be looking at getting a short course of dexamethasone or prednisolone instead of bulletin board reassurance. Five weeks in is not such a long time for steroid treatment.
I don't really believe in the 3-6 first days window.

 

[lucy7]

Um, I opted for realism. Reassurance is not my forte.
There, I gave you a hug

Seriously though, you should really be looking at getting a short course of dexamethasone or prednisolone instead of bulletin board reassurance. Five weeks in is not such a long time for steroid treatment.
I don't really believe in the 3-6 first days window.

well i guess it could get better or worse, who knows, I'm hoping for the former! I am on a short course of prednisolone, but from what i've seen online this is only effective if used shortly after the onset of symptoms, and usually has an effect quite quickly. I only started taking them last week due to various visits to gps and faffing around and havent noticed any improvement. I'm going to see ENT this thursday to find out properly what results of my hearing test were, whether complete loss in left ear or severe, if the latter I am going to ask about hearing aid/masker to see if helps. i notice yours only started in april, have you had any treatment been given any hearing aids etc?

 

[undecided]

Nah, I don't have any hearing loss or anything wrong health-wise.
Just the T, for some unspecified reason, probably thyroid related but who can tell...
But I've gotten used to it, one day out of the blue, just stopped minding it.
It's been getting quiter since then, still, there are some 'bad' days but mostly good and great days.
Having said that, I hope your treatment works and you get 100% better. Even if it doesn't work, you'll definitely get better with time.

 

[Kathi]

d

Hi

I developed tinnitus around 5 weeks ago. Initially my GP thought it and the loss of hearing in my left ear were linked to a blocked eustachian tube after a cold on holiday, but after a hearing test it was clear I had lost most of my hearing in my left ear. I've had an MRI and await a follow up appointment next week, but have been told I could have nerve damage due to a virus as there seems to be no other obvious causes at the moment. I have had a long stressful year previously, and I do wonder if it has been involved. Sucks that something so invasive has not already got a medical cure and that by the time I was directed to a private ENT, the window for taking steroids effectively had pretty much disappeared. I've seen some positive comments on the internet about habituation, but also some horror stories and I can't help but feel that the latter feed into peoples anxiety and exacerbate the problem. I remember hearing a story years ago about someone who committed suicide due to tinnitus, and I think that is lurking at the back of my mind, winding me up! Any positive stories would be very much appreciated.

@Lucy, don't dwell on the horror stories--and definitely do not dwell on the suicide aspects --that is just a very small percentage of T sufferers--mostly we learn to cope until we habituate. When I first posted here in December 2013 I was a real mess. I hadn't gotten any sleep other than 2-3 hours a night and I was terrified. I used to take my computer to bed with me to play white noise and drown it out. Today, 10 months later, I sleep with a fan on and manage 7-8 hours. I work, socialize and do the things I enjoy. I'm going camping in September and really looking forward to it. Just listen to the veterans on this board and try to have some faith. I went for CBT therapy to help with my negative thinking. I also took a six week class on how to handle anxiety. Both helped enormously. if you think you will be okay eventually, you will be. It just takes time and a positive attitude goes a long way. Use partial masking and maybe try some sleep meds. If you don't want to take meds, try some melatonin--it's a supplement that helps to sleep. I take Xanax --a very low dose. It helps with my anxiety and sleep. Many people are afraid of benzos as they can be addictive. I've used them for 9 months and they are a big help to me--but I suffered from extreme anxiety before the onset of T.
Please feel free to ask any questions and if I can help, I will.

 

[Karen]

Hi, Luci, and welcome!

I'm one of the tinnitus veterans on this board, and I agree with the comments above. For most of us, tinnitus doesn't get worse, it ends up as a baseline sound (although sometimes that sound varies), and then stays about the same. I have some hearing loss in my tinnitus ear, but it hasn't really gotten any worse, either.

If you can get past the initial anxiety that most of us experience when the T first begins, you'll be all right. The main thing now is to find a way to relax and get enough sleep. Also, if you can find ways to distract yourself, you'll find that the T sound will slowly fade into the background, so that during the day, you don't really notice it. The hearing aid/masker might be a really good idea for you to explore. Also, having some sort of background noise in your environment really helps.

I didn't want to take benzo drugs when my tinnitus first began, so I got through those first months using natural supplements instead. Those included holy basil, melatonin, reishi mushrooms, pharmaGABA, and magnesium. I experimented with these supplements until I found what worked for me. Today, I still take extra B-12, which does help some people, along with magnesium. I also occasionally take zinc, and keep melatonin on hand for when I really need it.

Please stay positive, keep active, and try to live your life as normally as possible. If you can do that, you'll find that your mind and body will get used to the tinnitus after awhile, and you'll be functioning normally again.

Best wishes and hugs,
Karen

 

[Stina]

thanks stina, your advice is much appreciated. mine appears to get worse in loud situations and swells with noises like hairdryers, shower fan etc. i havent yet had a diagnosis/prognosis but will definitely push for help from my gp as the hearing test i had suggested severe hearing loss. my fear is that whilst I'm feeling positive now and putting up with it that it will get too much and overwhelm me? is this common or do people generally just have good and bad days and get on with it?

i'm trying to use it as a positive to address my lifestyle (i've just been for a jog for the first time in years) and to also reassess my priorities in life.

i note you use earplugs for noisy situations, but how do you cope with quiet situations, are you used to it now and tune it out?

I agree that it is common to have reactive tinnitus. Mine for example seems louder when I watch TV or keep the windows open. In quiet situations in the beginning I did listen to music /nature sounds but now I dont really notice it unless I think about it. The thing is that in the beginning your brain addresses the noise as a threat but in time it will learn that it is in fact not dangerous and stops monitoring it. The more you distress the more your worried your brain gets. Studies have shown that being calm can actually lower tinnitus (I dont have a link to the study but I know I posted it here somewhere). However my tinnitus is quiet as well (noticeable only in the quiet) and I have no hyperacusis.
And yes, it could get louder and in some cases it does indeed, but also you could die from cancer or III WWW could break out or aliens could take over the planet. I doubt you worry about that. So my point is that right your tinnitus isn't louder, you can use protective measures to prevent it from getting louder, and if it still gets louder you are not helping it with worrying now. If it does get louder you will deal with it then and bear in mine that loudening doesn't equal with you suffering for the rest of your life. Many people learn to deal with successfully. So just focus on what you have now.
Btw anxiety disorders are becoming more and more common esp. among women. A lot has to do with (social) media as well, so just dont overhtink and -google.

 

[Sjoerd]

Hi
I've seen some positive comments on the internet about habituation, but also some horror stories and I can't help but feel that the latter feed into peoples anxiety and exacerbate the problem.

Well, my short positive story...: my habituation started the day I got tinnitus (looking back that is). The first 3 months where very difficult. Problems sleeping, problems with my attention span etc etc. Over the next 9 month it just started to fade....and these day's the tinnitus is just not as intrusive anymore. The tinnitus is probably exactly the same, but I just tend to forget about it for hours. last month I got to the point where I can sleep in silence again. wake-up on sunday and take a peak form under the sheets and say...fuck the world, i am going back to the twilight zone and snooze my brain for 2 more hours without a single moment of tinnitus being a problem.

My tips:
1. If you have trouble sleeping and/or are anxious ---> go for a 1 hour walk.
2. Do not use benzo's (only in case of acute emergency's) they mess with your brain and can make things worse.
3. Start doing yoga or chi-kung/tai chi. If practiced properly they are very effective against anxiety.

4. If you have hearing loss a hearing aid might help against tinnitus.

 

[Ilija]

A positive story? ok here's one, I read about people killing themselves over it perhaps we read the same story, I contemplated suicide planed it all out wrote a will even made a video telling everyone how sorry I am for what I have done telling them how during my life they had made me happy and love every moment of my life even when I was sad.
I deleted that video because I know I won't need it ever, I'm still here today improving slowly while my Tinnitus is not severe apparently it didn't take severe Tinnitus for me to come _ this close to killing myself within a week of it.
Do not read anything on the internet about Tinnitus, except for talking to us the people who as you will find aren't nearly as gloomy and depressed as the internet suggests.
Sure I'm sad at times but I'm still early in you are too.
Look I know how you feel somewhat, even now when someone tells me there's millions of people living with Tinnitus perfectly happy I know they're trying to help and tell me that Tinnitus doesn't mean an end to all joy in life but I still think to myself "Well that's great for them but I don't want to be in any Tinnitus group the ones being fine or the ones not being fine I want to be in the no Tinnitus group", I still feel bummed out at times how it only took 2 gigs? for me to get this and how I never got it before so I could at the very least had warning Tinnitus but life has it's way of sucking at times, but life also has it's way of really going up.
Read the success stories on this forum but don't go on the internet searching up Tinnitus all that did was give me nightmares, anxiety, fear and depression.
I wish you the best