I Need Hope

[Ligeia]

Hello everyone,

I've been reading up on here for quite some time now, always afraid to post something myself.
I'm 27 years old, and I've had tinnitus since as long as I can remember.
When I was 18 I started going to concerts/festivals and only wore cheap earplugs. I got custom made earplugs later on.

When I turned 22 my tinnitus started getting worse.

By then I've had been in in a 5 year toxic relationship which caused me so much stress. I also have a borderline personality which doesn't help with coping with tinnitus. I am however in therapy for that and am doing better with the moodswings in other area's of my life. So I guess it could be a combination of the three why my tinnitus got worse.

Looking back now I wish I had the tinnitus I was panicking so much about back then..

I went to the hospital and of course they could not do anything for me. I did get referred to a tinnitus counsel specialist, but that didn't do much for me. The T and my relationship made it very hard for me and I fell into a depression. Although I think the depression might have already been there before the T started getting worse.

I was put on AD's and was diagnosed with borderline personality and got (and am still getting) therapy for that somewhere else. I finally got out of my relationship and did great for 3 years. I did start to notice that my T was changing quite a bit. I wanted tot taper of my medication because I felt I did not need it anymore and it was having an influence on my T. This was around the time I found my great lovely boyfriend and also graduated form high school. Getting off my medication was stressful and I became quite anxious.

I did get a job as a social worker and just wanted to get on with life. I didn't pay much attention to my needs.
3 years back however, my tinnitus started getting worse every year around July..
So we've passed July and low and behold.. my tinnitus got worse. I had to call in sick for the first time because of the T which worries me a lot.

It's now at a point I can hear it over most things. I know I nowhere near have it as bad as some people here, but I am crippled by the fear of it getting that bad. I used to be hopeful but I feel like I'm just fooling myself by doing that. My T proved me that by getting worse every year.

The worst part for me is that when my T gets worse, I can't stand more and more situations.
Now my T spikes whenever I'm just with 4 or 5 of my friends. I feel crippled because of this.

I'm wondering what this is like for other people?

I'm so scared at this point.. mostly because I feel like coming at a point where I can't do this anymore. How bad is it going to get?

That makes me incredibly sad.. I want to live so bad. I also feel incredibly guilty towards my boyfriend, who's always there for me. Before this we were planning on saving up to buy a house and start having kids.

I feel like that's not possible for me to do anymore. The list of what I can do gets so much smaller everytime.

Sometimes I feel like I should just break up with him because he deserves so much better. I don't want him to put his life on hold because I'm sick. It breaks my heart to see him cry because of me.

I'm so sorry if I seem so dramatic. Maybe it's foolish to ask anyone here for a bit of hope, but I don't know where else to turn to.

 

[Contrast]

i also have borderline personality disorder and worse it's more alienating because I'm a male sufferer and it's uncommon in males.

you really don't have a choice but habituate (whatever form of habituation) and or wait for research to advance in 5-15 years, University of michigan is working on a device to reduce tinnitus, various bio tech firms areworking to restore hearing (which should reduce tinnitus based on some of their claims and what we already see in cochlear implants and middle ear surgeries. Experimental epilepsy drugs may also help with tinnitus in the near future.

help is on the way, but we need more people to support it.

 

[SignWithSilence]

I am relatively new to tinnitus, so I don't know if I can give you any help, but I can try.

This may seem obvious, but try to find someone you trust to talk to (I'm sure your boyfriend doesn't mind) and perhaps get in touch with a psychologist or psychiatrist.

Antidepressants and some relaxing drugs might not be harmful either. Medication, therapy and friends can help you get a feeling of safety.

I was in ear pain and headaches pretty much the whole June sometimes so intense that my ears felt like they were burning in complete silence. I think medication and slow gradual exposure to more sounds and social life has helped me through the worst. I am now pretty much pain free although my left ear rarely feels normal.

 

[Autumnly]

Now my T spikes whenever I'm just with 4 or 5 of my friends. I feel crippled because of this.

Do you experience any hyperacusis? Are loud sounds uncomfortable? Do sounds sound louder than they used to or do they cause you any ear pain?

 

[RoeTaKa]

Hey Ligeia, I'm sorry you're going through so much at the moment and finding it hard to cope. When I read your post there were two things that stood out to me: that you want to live so bad and that your tinnitus isn't as bad as other peoples.

I don't know much about your tinnitus but it seems like stress and overthinking about it have amplified your feeling towards it. And I completely understand the fear that it could get worse and how will we deal with it in the future. But the truth is, what future can we really think about if we can't manage the present. We can only live in the now and you need hope that you can see yourself doing more in your life. But we don't have to feel boxed in that we can't live a certain way, we have the ability to adapt to ways of life that suit our needs.

I can't say to you there's a cure or some fix to lessen your tinnitus, but like anything that breaks that we cannot fix we have to find a way to live around it. The mind will make anything worse if you let it, so it's important to find ways to relax as much as possible. For example if you can find a way to mask the sound so that you're not able to notice your tinnitus, that's a great time to reflect on your thoughts and start to feel a sense of normality again. Normality is an important feeling for humans, everyone that manages to overcome their disability or fear begins to feel a sense of placement in the world again.

Management is huge part of living with tinnitus. We have to give attention to our body as well as our mind, improving our biology allows us to have more control. With exercise, a good diet and a certain active lifestyle it allows us to have a better flow in our lives. You said your T spikes when you're with 4 or 5 friends, I don't know if that's just hanging out or something but maybe having a more physically engaging activity when socializing might be beneficial so your mind doesn't think too much about what you're not coping with.

Your boyfriend is also a huge emotional and moral support for you through this, if you know he is good for you then pushing him away will only make you feel worse. You deserve to live and have a normal life like everyone else, so if he wants to be with you then let yourself live. Whenever you feel good about something or feel like you have a good idea to make things better, let him know and support and confirmation will be very comforting.

I would advise looking into the diet and supplements that may improve your well being, I think if your body is getting the right things then it could lessen the stress of what your brain has to go through. But most of all put you first, figure out what makes you relax and what you can do to find peace of mind. Whether that's meditation, finding the right sounds to mask your tinnitus, playing a video game (I swear 2 months ago when I spiked, I somehow started playing Tetris and my mind was so occupied during it that my focus was completely on the game and it was a strange intense relaxation) or some sort of therapy....I've not done CBT (yet) but for some people it helps them a lot.

I'm not sure what else I can really say to help, it sucks when the tinnitus gets worse but finding the right ways for you to cope is really important I think. So try to find hope where you can and please don't give up!

 

[Bill Bauer]

Now my T spikes whenever I'm just with 4 or 5 of my friends. I feel crippled because of this.

You might consider trying to avoid even the moderate noises (e.g., a vacuum cleaner, blender) for a year or two. It sounds like exposure to loud noises is what got you there. Hopefully being easy on your ears and giving them time to heal can undo the damage.

 

[robHing]

Sometimes I feel like I should just break up with him because he deserves so much better. I don't want him to put his life on hold because I'm sick. It breaks my heart to see him cry because of me.

Hi... Welcome ...
I am so sorry to read your story.
Like so many T sufferers here, this problem will get worse (irreversible) and no turning the other direction.
Please hang in there and protect your ears well.
If you talk in group people and ears feel uncomfortable, do you also have hyperacusis ?

True love will not be defeated by suffering environment.
Please keep your love and don't break it.
Even with T, you deserve the BEST !

 

[fishbone]

Hello everyone,

I've been reading up on here for quite some time now, always afraid to post something myself.
I'm 27 years old, and I've had tinnitus since as long as I can remember.
When I was 18 I started going to concerts/festivals and only wore cheap earplugs. I got custom made earplugs later on.

When I turned 22 my tinnitus started getting worse.

By then I've had been in in a 5 year toxic relationship which caused me so much stress. I also have a borderline personality which doesn't help with coping with tinnitus. I am however in therapy for that and am doing better with the moodswings in other area's of my life. So I guess it could be a combination of the three why my tinnitus got worse.

Looking back now I wish I had the tinnitus I was panicking so much about back then..

I went to the hospital and of course they could not do anything for me. I did get referred to a tinnitus counsel specialist, but that didn't do much for me. The T and my relationship made it very hard for me and I fell into a depression. Although I think the depression might have already been there before the T started getting worse.

I was put on AD's and was diagnosed with borderline personality and got (and am still getting) therapy for that somewhere else. I finally got out of my relationship and did great for 3 years. I did start to notice that my T was changing quite a bit. I wanted tot taper of my medication because I felt I did not need it anymore and it was having an influence on my T. This was around the time I found my great lovely boyfriend and also graduated form high school. Getting off my medication was stressful and I became quite anxious.

I did get a job as a social worker and just wanted to get on with life. I didn't pay much attention to my needs.
3 years back however, my tinnitus started getting worse every year around July..
So we've passed July and low and behold.. my tinnitus got worse. I had to call in sick for the first time because of the T which worries me a lot.

It's now at a point I can hear it over most things. I know I nowhere near have it as bad as some people here, but I am crippled by the fear of it getting that bad. I used to be hopeful but I feel like I'm just fooling myself by doing that. My T proved me that by getting worse every year.

The worst part for me is that when my T gets worse, I can't stand more and more situations.
Now my T spikes whenever I'm just with 4 or 5 of my friends. I feel crippled because of this.

I'm wondering what this is like for other people?

I'm so scared at this point.. mostly because I feel like coming at a point where I can't do this anymore. How bad is it going to get?

That makes me incredibly sad.. I want to live so bad. I also feel incredibly guilty towards my boyfriend, who's always there for me. Before this we were planning on saving up to buy a house and start having kids.

I feel like that's not possible for me to do anymore. The list of what I can do gets so much smaller everytime.

Sometimes I feel like I should just break up with him because he deserves so much better. I don't want him to put his life on hold because I'm sick. It breaks my heart to see him cry because of me.

I'm so sorry if I seem so dramatic. Maybe it's foolish to ask anyone here for a bit of hope, but I don't know where else to turn to.

Hi there,

as someone that has lived with this horror for over 30 years, I can chime in.

First of all, let's think of YOU for right now. I understand that you have a partner, but I want to focus on YOU for right now. Living with tinnitus can be quite difficult. It can make our lives more complex and each day can feel just like a chore. I think that I read that, you are seeking counseling right now. If so, this is great. Support/therapy/counseling is very helpful. I also talk with a therapist, but it's not because of the tinnitus, it's mostly due to losing my folks.

Counseling/therapy doesn't always need to involve meds. You can simply talk it out and explain your worries, doubts to him or her. Do you exercise at all? Run, jog, yoga? This is also something that is very helpful. Your mind is probably wrapped up in the noise/tinnitus that you are hearing 24-7.

You need to do all you can to make YOU feel good and able to handle your daily challenges and tasks. I would NOT focus on what tomorrow brings. I would NOT focus on the future and IF your tinnitus is going to get louder. You have NO control of it getting louder or not.

Life happens, tinnitus happen. You can do everything, by the books and play it safe and your tinnitus can still get louder. We do not have 100% control of this. You CAN practice a good tinnitus hygiene and protect your ears. Even doing this will not 100% guarantee a lower future tinnitus, we simply cannot predict that.

We simply cannot live in fear like this. Life will happen, tinnitus is here. What YOU/WE need to do is to get a game plan going for our life. We are at POINT A right now, what do we need to do to get to POINT B. What is our goal, what do we want in life. Go to the drawing board and put up a plan. Take each day to slowly work on it.

Do little things, not big things. Do something, gain some traction.

You mention that you have a boyfriend, having a relationship while having tinnitus can be quite a challenge. Our ears can limit us in what we do. Your idea of enjoyment and his might be quite different now. You have to consider this and all of it. Some folks do not need a loud environment to find amusement, some do.

You cannot do stuff, that will harm your ears just to please others. You need to adjust your life to have it suit you and your situation. I love to have a child, but my ears are messed up, I have beyond intrusive tinnitus. The noise, screaming is something I cannot tolerate at all.

Sit down with your mate and discuss everything. I do not want a relationship because, handling my daily life with this intrusive beast is plenty. I cannot make someone else happy, when I am afflicted daily with this hell.

Do know that all of us face daily struggles, you are not alone. We come here to bond and guide each other. Even when things look bad, there is always an opportunity. When one door closes, ANOTHER ONE OPENS UP! With every obstacle lurks a hidden opportunity.

Never Ever Give Up!


Bless.....

 

[JohnAdams]

i also have borderline personality disorder and worse it's more alienating because I'm a male sufferer and it's uncommon in males.

you really don't have a choice but habituate (whatever form of habituation) and or wait for research to advance in 5-15 years, University of michigan is working on a device to reduce tinnitus, various bio tech firms areworking to restore hearing (which should reduce tinnitus based on some of their claims and what we already see in cochlear implants and middle ear surgeries. Experimental epilepsy drugs may also help with tinnitus in the near future.

help is on the way, but we need more people to support it.

I think 5 years max. maybe 2. we may also all get Alzheimer's and cancer from it. but at least we wont have T.

 

[Ligeia]

Do you experience any hyperacusis? Are loud sounds uncomfortable? Do sounds sound louder than they used to or do they cause you any ear pain?

Hi, thank you for your response. I do feel uncomfortable with loud sounds. I've had periods where I over protected my ears but I don't do that anymore. I never really thought I had H but I guess sound do sound louder to me now. Can H have an effect on T spikes? I'm not very familiar in that department. I do feel a lot of pressure behind my ears since it got worse.

 

[Ligeia]

You might consider trying to avoid even the moderate noises (e.g., a vacuum cleaner, blender) for a year or two. It sounds like exposure to loud noises is what got you there. Hopefully being easy on your ears and giving them time to heal can undo the damage.

Thank you for your input.
I've had a couple of hearing test and they don't detect hearing loss/damage. But I guess that doesn't say much.
I do tend to protect my hearing when my partner uses the vacuum cleaner, also because I just can't stand the sound.
I don't think I can undo the damage after 6 years, sadly. But I'm being careful around loud noises.

 

[Ligeia]

Hey Ligeia, I'm sorry you're going through so much at the moment and finding it hard to cope. When I read your post there were two things that stood out to me: that you want to live so bad and that your tinnitus isn't as bad as other peoples.

I don't know much about your tinnitus but it seems like stress and overthinking about it have amplified your feeling towards it. And I completely understand the fear that it could get worse and how will we deal with it in the future. But the truth is, what future can we really think about if we can't manage the present. We can only live in the now and you need hope that you can see yourself doing more in your life. But we don't have to feel boxed in that we can't live a certain way, we have the ability to adapt to ways of life that suit our needs.

I can't say to you there's a cure or some fix to lessen your tinnitus, but like anything that breaks that we cannot fix we have to find a way to live around it. The mind will make anything worse if you let it, so it's important to find ways to relax as much as possible. For example if you can find a way to mask the sound so that you're not able to notice your tinnitus, that's a great time to reflect on your thoughts and start to feel a sense of normality again. Normality is an important feeling for humans, everyone that manages to overcome their disability or fear begins to feel a sense of placement in the world again.

Management is huge part of living with tinnitus. We have to give attention to our body as well as our mind, improving our biology allows us to have more control. With exercise, a good diet and a certain active lifestyle it allows us to have a better flow in our lives. You said your T spikes when you're with 4 or 5 friends, I don't know if that's just hanging out or something but maybe having a more physically engaging activity when socializing might be beneficial so your mind doesn't think too much about what you're not coping with.

Your boyfriend is also a huge emotional and moral support for you through this, if you know he is good for you then pushing him away will only make you feel worse. You deserve to live and have a normal life like everyone else, so if he wants to be with you then let yourself live. Whenever you feel good about something or feel like you have a good idea to make things better, let him know and support and confirmation will be very comforting.

I would advise looking into the diet and supplements that may improve your well being, I think if your body is getting the right things then it could lessen the stress of what your brain has to go through. But most of all put you first, figure out what makes you relax and what you can do to find peace of mind. Whether that's meditation, finding the right sounds to mask your tinnitus, playing a video game (I swear 2 months ago when I spiked, I somehow started playing Tetris and my mind was so occupied during it that my focus was completely on the game and it was a strange intense relaxation) or some sort of therapy....I've not done CBT (yet) but for some people it helps them a lot.

I'm not sure what else I can really say to help, it sucks when the tinnitus gets worse but finding the right ways for you to cope is really important I think. So try to find hope where you can and please don't give up!

Thank you for your response. The past week I've been looking into my diet but I don't really know where to start.
I'm now mostly living on fruit and veggies. I've also given up smoking and coffee because I thought it might have an effect on my anxiety but it doesn't seem to do much. I do need to get out more and do some excersise. I'm starting yoga for the first time next week. Sleeping is difficult at this point because the T is hard to mask. I allready wake up with a panic attack not knowing what to do with myself. I really want to live a normal live and do all the things I wanted to do before T. I hope it's possible.
Yesterday my boyfriend came home from work 4 hours early because he knew I was having such a bad day. He is truely a blessing.
You mentioned suppelements by the way, what do you recommend? I'm now taking magnesium, zinc and B12.

 

[Ligeia]

Hi there,

as someone that has lived with this horror for over 30 years, I can chime in.

First of all, let's think of YOU for right now. I understand that you have a partner, but I want to focus on YOU for right now. Living with tinnitus can be quite difficult. It can make our lives more complex and each day can feel just like a chore. I think that I read that, you are seeking counseling right now. If so, this is great. Support/therapy/counseling is very helpful. I also talk with a therapist, but it's not because of the tinnitus, it's mostly due to losing my folks.

Counseling/therapy doesn't always need to involve meds. You can simply talk it out and explain your worries, doubts to him or her. Do you exercise at all? Run, jog, yoga? This is also something that is very helpful. Your mind is probably wrapped up in the noise/tinnitus that you are hearing 24-7.

You need to do all you can to make YOU feel good and able to handle your daily challenges and tasks. I would NOT focus on what tomorrow brings. I would NOT focus on the future and IF your tinnitus is going to get louder. You have NO control of it getting louder or not.

Life happens, tinnitus happen. You can do everything, by the books and play it safe and your tinnitus can still get louder. We do not have 100% control of this. You CAN practice a good tinnitus hygiene and protect your ears. Even doing this will not 100% guarantee a lower future tinnitus, we simply cannot predict that.

We simply cannot live in fear like this. Life will happen, tinnitus is here. What YOU/WE need to do is to get a game plan going for our life. We are at POINT A right now, what do we need to do to get to POINT B. What is our goal, what do we want in life. Go to the drawing board and put up a plan. Take each day to slowly work on it.

Do little things, not big things. Do something, gain some traction.

You mention that you have a boyfriend, having a relationship while having tinnitus can be quite a challenge. Our ears can limit us in what we do. Your idea of enjoyment and his might be quite different now. You have to consider this and all of it. Some folks do not need a loud environment to find amusement, some do.

You cannot do stuff, that will harm your ears just to please others. You need to adjust your life to have it suit you and your situation. I love to have a child, but my ears are messed up, I have beyond intrusive tinnitus. The noise, screaming is something I cannot tolerate at all.

Sit down with your mate and discuss everything. I do not want a relationship because, handling my daily life with this intrusive beast is plenty. I cannot make someone else happy, when I am afflicted daily with this hell.

Do know that all of us face daily struggles, you are not alone. We come here to bond and guide each other. Even when things look bad, there is always an opportunity. When one door closes, ANOTHER ONE OPENS UP! With every obstacle lurks a hidden opportunity.

Never Ever Give Up!


Bless.....

Thank you for your response. I'm really sorry for your loss and that you're having such a hard time.
I hope one day you maybe feel like you can be happy with someone else.
I know I have to have the mindset you have, but after three years in a row of it getting louder I find it hard to hold on to the hope. I have hard time coping at the moment because of the anxiety. I wake up in panic not kwowing that to do with myself. So my days already start out in fight/flight mode and focused on the noise.
I'll have to keep working on that if I figure out how. I think you're mindset is very admirable so thank you for sharing that! I'll try to just live my life day by day..
I hope you're well and wish you the best..

 

[RoeTaKa]

Thank you for your response. The past week I've been looking into my diet but I don't really know where to start.
I'm now mostly living on fruit and veggies. I've also given up smoking and coffee because I thought it might have an effect on my anxiety but it doesn't seem to do much. I do need to get out more and do some excersise. I'm starting yoga for the first time next week. Sleeping is difficult at this point because the T is hard to mask. I allready wake up with a panic attack not knowing what to do with myself. I really want to live a normal live and do all the things I wanted to do before T. I hope it's possible.
Yesterday my boyfriend came home from work 4 hours early because he knew I was having such a bad day. He is truely a blessing.
You mentioned suppelements by the way, what do you recommend? I'm now taking magnesium, zinc and B12.

I actually started smoking again a few weeks ago, started socially and now I smoke a few a day. My T was aggravating me a month ago and I found smoking eased me up (I smoked for 10 years then quit for nearly 5, feels more like a crutch than an addiction for now). Some say smoking worsens their T but apparently there's no hard proof as far as I've read (it doesn't affect mine). Obviously giving up for health reasons is the best thing but if you need to smoke to get to a better place then I wouldn't blame you for that.

I know there's people with T who still drink coffee, they say maybe they shouldn't but...hey I just googled and there's an article saying coffee may prevent ringing in the ears. Seems like there's contradicting info all over with no real 100% fact. Moral of the story: know your body and feel out what works for you, if coffee helps you then it helps you.

At the moment I can sleep with just a fan on (I've always had something on the computer as I sleep anyways) but during my spike in June and what was left of it in July I was so happy when I remembered speakers for pillows. I tried a few and my favourite is this kind: https://i.ebayimg.com/images/g/wgIAAOSwNkJZ-IQ~/s-l300.jpg they're so cheap and you can also get a stereo version so you can place two in your pillow if you want turn your head. I donated to the website https://mynoise.net and downloaded custom versions of some of the sounds I thought really helped mask. Then as I tried to sleep I might still hear my T but if I really relaxed and give in to the sound I found it blended in so well. The speaker isn't able to be very loud btw, so your partner will barely hear it, if it at all. I still use them as pressing my head into a pillow makes hearing my T easier, now all I hear is whatever nice thing I like through the pillow. I slide the speaker into my second pillow and it travels through my head pillow nicely, if you put it in the head pillow it could be uncomfortable or slide around a lot. You my also just want to look up actual pillow speakers but they're more expensive and not easily washed.

I do yoga and shoulder/neck stretches every other day, I find they really help https://greatist.com/move/stretches-for-tight-shoulders and https://www.stylecraze.com/articles/yoga-asanas-to-cure-tinnitus-hearing-problems . I was surprised how less stressed I was because my neck wasn't so tight. I do a general workout every now and then too and also make a reason to get out more. Going for a walk to get fresh food for your diet just kills two birds with one stone haha. Plus the sun is good for you if you lack vitamin D.

I'm new to being more thorough with supplements but atm I take zinc and B12 in the morning, D3 and K2 with dinner and then magnesium at night before bed. My D3 capsules are 3000iu each but I'm thinking about maybe taking 2 a day. I saw posts recently about Apple Cider Vinegar with "The Mother", I ordered some and will try that out to see how it effects me. My diet is important now too, I'll wake up and have a banana or some high fiber cereal, if I have lunch I'll probably make some scrambled eggs with spinach and a bit of bacon if I'm really hungry on some whole grain bread and dinner I'll eat meats (chicken, steak, pork) and fish (tuna steak, salmon - gotta get that omega 3!) with veg and stuff, sometimes a nice baked potato is good. Cooking is a great distraction too.

I think the key is to get yourself in a good place and then really make a routine out of it, the more you fill your day with good things the better it is to get through it. It's just getting the right start to the day that sucks, waking up with all your attention on T drains you massively, so find a way to start right and get comfy. Even if it's meditation, if you can find a way to mask then some sort of meditation in the morning with masking can be wonderful because you've achieved a state of mind in your morning where you didn't have to hear it - and that's empowering.