What Is Your Biggest Problem With Tinnitus?

[Martin69]

Hi all,
After nearly one year with T, I am still struggling.
I live my life, mask as good as possible, do my stuff.
But with an actual illness in my family, I see how limited I am with T.
I am curious what you see as the biggest issue for you living with T.
I myself have anxiety and depression (living with this condition forever, never hear silence again, not coping with life in general). What are your biggest challenges with T?
I would like to see if I react like most or if I am "not normal".
I fear I got stuck. :-(
But I continue and hope for this habituation thing.

 

[Telis]

-Falling backward...finances, health/looks, education, relationships. Basically doing everything at about 5 percent of my true potential.

-pride...not wanting others to see me weak.

-isolation because of every day noises and not being able to enjoy life.

-annoyance...going f@&ing insane!

-reflecting on what life was once like, basically being sad about how great life was.

-fear of a bleak future or even a premature death.

-becoming a person I no longer know or like.

-basically being dead inside, no longer being able to love or be loved.

-never being able to feel peace inside

Other than that...T is no big deal and doesn't bother me.

 

[valeri]

All of the above options+what @Telis said!

I put on nearly 40kg in the last 3 years, all from stress caused by t, not sleeping properly took a toll on my hormones big time!

@Martin69
Don't worry, you are very normal considering the circumstances!

 

[MichaelM]

Couldn't agree more with @Telis

 

[Nick the Swede]

@Telis, totally agree.


One very very unimportant thing that i really notice about myself is the looks. I always looked much younger than my actual age (42). During the 6 months of T i have really caught up with that. Aged a decade during this time. Lost weight since i quit my weight lifting and all other work out beside some long distance running to keep the anxiety under control. I have always been obsessed with keeping my body fit but atm i can´t find any motivation to do so.

 

[MichaelM]

Nick, that aging thing is a good point. I have been having this severe T thing + Menieres Disease for some 2-3 years now. Before that i was always the youngest looking guy around with relatively mild T for some 10 years (the T1.0 was nothing to be honest, now that i think of it). Now when i see myself in photos or so i think "who is that and how is he looking so old". I´m 37 but i think i look like 47-year-old now.

Plus that: fatigue. It is sometimes hard to walk around the block with my dog. it is rarely heard but doctor i saw last time mentioned to me that T can cause fatigue. Usually people tend to think fatigue causes tinnitus. Here´s an article confirming this fatigue issue. What i have been trying to say to people here and there is that being really tired isnt lack of positive thinking/attitude or anything like that. If there is one thing that gets me angry it is that "think positive" phrase. If so effective how come they dont treat other illnesses or diseases with that. Let´s all be healed by The Positive Energy. Problems solved.

 

[valeri]

I hate all that positive talk shit.
There are people who let's say recovered from cancer (sorry Martin if I sound insensitive here), they go on and on about all the positive attitude and it's all coming from your head.
Well excuse me, if positivity cures why did you have surgery, why did you have chemo, radiotherapy?
Why didn't you cure yourself with positive thoughts hey?
One of my cancer cured colleagues said to me that I choose to be the victim, wtf!!!!
I swear never to discuss t with anyone ever again, unless they have it!

 

[MichaelM]

Agree, @valeri . I know many strong persons who have lost their fight against diseases like cancer or ALS. they are dead. They dont think anything anymore. Didnt they think positive enough because they died...?

It is utterly wrong to say they didnt fight hard enough or they didnt think positive enough. With diseases like those you really dont "fight" but it is the doctors, meds and the treatmens fighting. They either work or they dont and one dies. Absolutely nothing to do with positive thinking. That "mental strenght" thing might be fun to a certain point but that´s it. When shit really hits the main fan it is the doctors, drugs and Western Medicine doing the fight.

Sorry if this is hurting someones feelings. With this T issue is pretty much the same except we dont die. When the noise gets really bad i know i will lose the game no matter how positive i think. There are days when i am so tired it takes all the energy to take my dog for a walk across the street, after that i crash for half an hour and sleep for an hour or so. That is Tinnitus. Any other nice noises one hears "in a quiet room" (as so often said everywhere) during and between that positive thinking ...i dont know what that is but T it aint. It is normal to hear something when in a quiet room.

There really should be a way to measure this noise, the volume i mean. There are many kind of cancers but T in a modern medicine seems to same for everybody. It is not.

 

[LeQuack]

-Falling backward...finances, health/looks, education, relationships. Basically doing everything at about 5 percent of my true potential.

-pride...not wanting others to see me weak.

-isolation because of every day noises and not being able to enjoy life.

-annoyance...going f@&ing insane!

-reflecting on what life was once like, basically being sad about how great life was.

-fear of a bleak future or even a premature death.

-becoming a person I no longer know or like.

-basically being dead inside, no longer being able to love or be loved.

-never being able to feel peace inside

Other than that...T is no big deal and doesn't bother me.

Couldn't have said it better.

 

[Barrowww]

@Telis said it all in "doing everything at about 5 percent of my true potential".

 

[Martin69]

Guys. Thanks for your answers so far. And it is good to know I am not alone. Of course it is not good that we all suffer. But that we have the same experience. Interesting for me to see that the most common problem is anxiety. This is also what makes me most problems. The anxiety living the rest of my life with such a lousy condition, being a burden for my family.

The question is how to face the anxiety? Dr. Nagler would recommend TRT. Turning T into a neutral stimuli.
It works for some, maybe for many, but not for everyone.

So how shall we beat the anxiety? I think if we come to a state where we no longer fear T, things will be much better (many say this). Stoyan from the Yuku board told me he had anxiety of 9.5 (on a scale) of 10 for two years. But then it faded.

So how do we beat the anxiety (excluding addictive drugs)?

 

[Nick the Swede]

Said it before Martin, put your shoes on and hit the roads, after 10kms i am able to cope the rest of the day. My only way to let off steam besides pop a pill. When REAL anxiety hits distractions like video games and movies and so on doesn´t work, at least that´s the case for me.

 

[RicoS]

@Telis, totally agree.


One very very unimportant thing that i really notice about myself is the looks. I always looked much younger than my actual age (42). During the 6 months of T i have really caught up with that. Aged a decade during this time. Lost weight since i quit my weight lifting and all other work out beside some long distance running to keep the anxiety under control. I have always been obsessed with keeping my body fit but atm i can´t find any motivation to do so.

I'm getting 42 in december but people think I'm in my late 20's..... When I just got T I saw myself getting older by the day....but I kept training and I'm good to go now....still have T though

 

[Grace]

Dude your like my dads age and you look young as shit!

I'm getting 42 in december but people think I'm in my late 20's..... When I just got T I saw myself getting older by the day....but I kept training and I'm good to go now....still have T though

 

[RicoS]

Dude your like my dads age and you look young as shit!

hahaha thanks...I still hope I look like this when I'm 50 ... i think doing sports and stay a kid keeps you young. Still playing on my PS4 ...Destiny , Killzone , Fifa..you name it.... but I also played on MSX, Commodore, Vic20 , Megadrive Genesis), NES ...you name it. I think keeping a young mind...keeps you young.......still have T though....T does not care who you are..... T just is ;-)

 

[Telis]

@Telis, totally agree.


One very very unimportant thing that i really notice about myself is the looks. I always looked much younger than my actual age (42). During the 6 months of T i have really caught up with that. Aged a decade during this time. Lost weight since i quit my weight lifting and all other work out beside some long distance running to keep the anxiety under control. I have always been obsessed with keeping my body fit but atm i can´t find any motivation to do so.

Yeah me too...I don't even want to look in the mirror. I too was a heavy weight trainer, so sad to loose all the hard work because of this crap. I look a lot older, even my gf can't deny it, sunken eyes, bags, all of it.

Whoever says it's just a noise and can't kill you, I disagree. This stress is killing me quickly. I feel like death is knocking at my doorstep.

 

[Jonathan Kent]

I'm new to this. Have had T for about two weeks now (just sort of woke up with it one day) and it is maddening, especially at night when the house gets quiet and I go to sleep...which is challenging itself. I saw an ENT last week who basically offered no suggestions other than cleaning wax from my ears and giving me a hearing test. Going on Monday to see a GP and get an overall checkup. What treatments, drugs, diets, holistic stuff have any of you tried that have helped in any way? From what I read, T is a symptom of other ailments going on in the body so I am going to try and discover if there is anything wrong with my body in other respects that I can address that will also help my T. I understand that simply damage to one's hearing may be the cause of T and that there's not much that can be done about that, if that is the case.
I'm already quite depressed at the prospect of having T long term or for the rest of my life, but not going to give up fighting it.

 

[Kathi]

Hi Jonathan and welcome. The only supplements I tried were lipoflavonoids--my stepfather swears they help his T--but they didn't help me. My first ENT told me to 'learn to live with it' and couldn't understand why I was 'so' upset. My GP had me tested for thyroid problems, diabetes and did a full blood workup. I went to a second ENT who had me get an MRI to rule out a serious brain/ear problem. I have a slight high frequency hearing loss and am not a candidate for a hearing aid. T can be caused by an underlying medical condition so it is good to have a complete checkup. I gave up caffeine, sugar and artificial sweeteners. I've added back some sweets and I haven't noticed any difference. I take Xanax for anxiety and it really helps me, but I was prone to anxiety before T. Talk to you doctor about your depression.

Try to get enough sleep and if you can't sleep, ask your doctor for a sleep med or you might try melatonin. Read through the "alternate treatment" category.

I was in terrible shape when I arrived here but am functioning quite well now and am habituating. It's a slow process but it is real. Right now I am on a camping trip and I have totally enjoyed myself. I even started riding again with ear plugs and a new helmet that keeps the noise and wind out. You will be okay. Really. For now, try not to worry about the future--try living in the day.

I'm new to this. Have had T for about two weeks now (just sort of woke up with it one day) and it is maddening, especially at night when the house gets quiet and I go to sleep...which is challenging itself. I saw an ENT last week who basically offered no suggestions other than cleaning wax from my ears and giving me a hearing test. Going on Monday to see a GP and get an overall checkup. What treatments, drugs, diets, holistic stuff have any of you tried that have helped in any way? From what I read, T is a symptom of other ailments going on in the body so I am going to try and discover if there is anything wrong with my body in other respects that I can address that will also help my T. I understand that simply damage to one's hearing may be the cause of T and that there's not much that can be done about that, if that is the case.
I'm already quite depressed at the prospect of having T long term or for the rest of my life, but not going to give up fighting it.

 

[Martin69]

Hi Jonathan and welcome. The only supplements I tried were lipoflavonoids--my stepfather swears they help his T--but they didn't help me. My first ENT told me to 'learn to live with it' and couldn't understand why I was 'so' upset. My GP had me tested for thyroid problems, diabetes and did a full blood workup. I went to a second ENT who had me get an MRI to rule out a serious brain/ear problem. I have a slight high frequency hearing loss and am not a candidate for a hearing aid. T can be caused by an underlying medical condition so it is good to have a complete checkup. I gave up caffeine, sugar and artificial sweeteners. I've added back some sweets and I haven't noticed any difference. I take Xanax for anxiety and it really helps me, but I was prone to anxiety before T. Talk to you doctor about your depression.

Try to get enough sleep and if you can't sleep, ask your doctor for a sleep med or you might try melantonin. Read through the "alternate treatment" category.

I was in terrible shape when I arrived here but am functioning quite well now and am habituating. It's a slow process but it is real. Right now I am on a camping trip and I have totally enjoyed myself. I even started riding again with ear plugs and a new helmet that keeps the noise and wind out. You will be okay. Really. For now, try not to worry about the future--try living in the day.

Kathi, do you still take Xanax?
How long and what dosage?
I really have a rough time and lorazepam here. But I don't want to take too much.
Prayers, Martin

 

[Kathi]

Yes Martin, I'm still taking Xanax 3 times a day. The dose is .50 mg for a total daily dose of 1.5 mg. It's a low dose and I've taken it for almost 10 months. I don't have any problems with it--I haven't increased the dosage and I sleep 7-8 hours a night. My doctor sees me every three months now that I've stabilized.

This is my experience Martin, I don't advocate anyone take Xanax. Drugs work differently with different people so I think you should discuss it with your doctor.

Kathi, do you still take Xanax?
How long and what dosage?
I really have a rough time and lorazepam here. But I don't want to take too much.
Prayers, Martin

 

[Martin69]

Yes Martin, I'm still taking Xanax 3 times a day. The dose is .50 mg for a total daily dose of 1.5 mg. It's a low dose and I've taken it for almost 10 months. I don't have any problems with it--I haven't increased the dosage and I sleep 7-8 hours a night. My doctor sees me every three months now that I've stabilized.

This is my experience Martin, I don't advocate anyone take Xanax. Drugs work differently with different people so I think you should discuss it with your doctor.

Thanks Kathi.
Doctors in Germany do not like giving any kind of Benzos. When I was freaking out at my GP (a good friend), she gave me Valium. This calmed me and my T down. She also gave me some lorazepam pills for worst case.
All the best for you.

 

[valeri]

@Martin69
I use Xanax as needed, but you should definetly take something in the time of stress like at the moment.
You don't need to suffer needlessly or worry about short time use of benzos.
Just do what you can to make it a bit easier to cope for the time being.
Just discuss options you have with your dr.
Take care!

 

[Stina]

@Martin69
I use Xanax as needed, but you should definetly take something in the time of stress like at the moment.
You don't need to suffer needlessly or worry about short time use of benzos.
Just do what you can to make it a bit easier to cope for the time being.
Just discuss options you have with your dr.
Take care!

Suffering might actually cause a lot more damage to the body than meds. The key is to find a good doctor who has experience with tinnitus patients as well (many of them do).

 

[Stina]

hahaha thanks...I still hope I look like this when I'm 50 ... i think doing sports and stay a kid keeps you young. Still playing on my PS4 ...Destiny , Killzone , Fifa..you name it.... but I also played on MSX, Commodore, Vic20 , Megadrive Genesis), NES ...you name it. I think keeping a young mind...keeps you young.......still have T though....T does not care who you are..... T just is ;-)

Hhehe maybe keeping the mind young is the best anti-wrinkle cream!

 

[kharaa]

I had to vote for everything. My biggest problem with tinnitus, is it's unrelenting assault on my consciousness. my ability to talk, and have conversations, or even to focus on something other then wishing i had the balls to die. For most of 2013 I was barely able to even function, i saw a therapist for a year to no avail. (to be fair, this was my own fault, i was so far gone that he couldn't get through to me, i would miss appointments because i would forget what day it was, or that I even had an appointment..) it caused such severe ocd in me, that i could not stop rubbing my ears, or making a tsch tsch noise with my own voice to try and mitigate what i was dealing with.

I got a pair of hearing aids in January of this year that for 8 months gave me my life back, but since then it's been a constant battle of it getting worse, and having to deal with the extra noise in my head from the maskers.

probably the most terrible thing about it, is the apathy and ignorance in the general public, and the inability for us to mobilize in to a much larger movement. There are supposedly atleast 12 million of us in just the united states that have moderate to severe tinnitus, and 2 million of us that have very severe tinnitus. We outnumber the people with say MS (2.5 million world wide) by leaps and bounds. Yet no one will do something like an ice bucket challenge for us for ALS, because no one cares. I still struggle to get my family to have any empathy to what i've suffered through. This type of thing won't change until every one of us cares about eachother and how bad it can get. I've seen way too much condescending posts on tinnitus messages boards towards those that are suffering the most.


...that post ended up a bit longer than i ment.

 

[valeri]

@kharaa
I share you frustration regarding t ignorance.
I brought it up way too many times on this board, I'm angry with people that are influential and could do something, yet they keep saying: it's just a sound, it's your reaction, it's your anxiety keeping you awake.
Seriously???
Famous people with t do absolutely nothing, nothing!
Shame shame shame!!!
Even people who have t don't fully understand somebody who may be suffering really badly.
Sufferer is usually advised that more time is needed and that the reaction to t, neutral stimuli, needs to be changed, fear needs to be lost.
It goes almost as far as telling the sufferer it's his/her fault they are still struggling, unnecessarily, according to reaction crowd, considering so much can be done!!!!!
Yeah right!
To prove my point one just needs to go to yuku board, it's full of reaction/habituation crap.
Dan posted about his friends suicide and it ignited insult and ridicule.
Yes, let's swipe it under the carpet and put our pinky glasses on
Let's sugarcoat is so newbies don't get scared!
I'm not saying people don't get better or habituate, sure they do, but we can't ignore the fact that some suffer really badly to the point of taking their own life.

I just wonder what we as individuals, as TT members can do to get things moving?!

 

[RicoS]

@kharaa
I share you frustration regarding t ignorance.
I brought it up way too many times on this board, I'm angry with people that are influential and could do something, yet they keep saying: it's just a sound, it's your reaction, it's your anxiety keeping you awake.
Seriously???
Famous people with t do absolutely nothing, nothing!
Shame shame shame!!!
Even people who have t don't fully understand somebody who may be suffering really badly.
Sufferer is usually advised that more time is needed and that the reaction to t, neutral stimuli, needs to be changed, fear needs to be lost.
It goes almost as far as telling the sufferer is his/her fault they are still struggling, which is incenses art considering so much can be done!!!!!
To prove my point one just needs to go to yuku board, it's full of reaction/habituation crap.
Dan posted about his friends suicide and it ignited insult and ridicule.
Yes, let's swipe it under the carpet and put our pinky glasses on

I just wonder what we as individuals, as TT members can do to get things moving?!

Some doctor told me....your totaly fine.... I wish I looked as you and had your health on that age. Tinnitus is something you learn to live with. Than he said he didn't know anybody who could not work because of T.
So I said perhaps your focus is not on patients with T but just regular patients and it's ignorant to say that if you did not see a patient who could not work because of his/her T , it does not happen.
I used to talk about it a lot so people would understand, but I stopped that because if you do not have T you just don't understand the impact of it. You can get compasion, but they do not realy understand it.
But the moment that some streetworker is fixing the road next to their office they complain they cannot work or concentrate because of the noise. But they expect us to do like T is nothing and should not be bottered with it.

 

[Jonathan Kent]

Hi Kathi,
Thanks so much for responding and apologies for not chiming in until now. Yes, the second ENT I saw this week also recommended lipoflavanoid supplements which I've just started taking. They are essentially b-vitamins with some additional natural ingredients, so certainly no harm in trying. Over the past few months I've felt a congestion in my inner ears -- the kind you get when you change altitudes either on a plane or driving over a mountainous area. I frequently feel like I need to swallow hard or crack my jaw to "pop" them. Sometimes it works. I started flying quite a bit for work this year and I think that's what may be the initial cause. In any case, my own diagnosis is that this may be what caused the T. When I told the ENT, he suggested I try Allegra-d (over the counter) to see if that helps the congestion in the ears and ultimately the T. Just started taking it yesterday. I've also just started trying essential oils as well.
Mentally, I'm pretty much ok and have been dealing with it. I'm annoyed and pissed off more than anything -- don't really have anxiety per se and I do sleep at night (I usually wait till I'm super tired before I go to bed. The T for me is a constant high-pitched tone in my ears that I mostly don't notice during the course of the day as long as there is some background noise to mask the tone. As I mentioned previously, it's mostly at night when it's quiet and the TV is off that it's really annoying. The idea that I may never experience complete silence again is fairly distressing. The ENT said he's experienced T in his past and it went away on its own. Both of my in-laws said the same thing -- they had it and it ultimately just went away. I've had it for (only) about a month so I'm going to try and remain optimistic, but it is frustrating to discover that there is no real and absolute medical cure for it.
This forum is helpful mentally so thanks for the conversation (all).

 

[RichL]

Just the fact that it's there is my only problem with it!

 

[Carlos1]

-Falling backward...finances, health/looks, education, relationships. Basically doing everything at about 5 percent of my true potential.

-pride...not wanting others to see me weak.

-isolation because of every day noises and not being able to enjoy life.

-annoyance...going f@&ing insane!

-reflecting on what life was once like, basically being sad about how great life was.

-fear of a bleak future or even a premature death.

-becoming a person I no longer know or like.

-basically being dead inside, no longer being able to love or be loved.

-never being able to feel peace inside

Other than that...T is no big deal and doesn't bother me.

I couldn't capture my feelings any better then what you just wrote
Telis