Stop Telling Me to Live with It or Habituate

How about both @threefirefour? You should our check out some of @MikeP505 posts, particularly towards the end of his life earlier this year. He dealt with severe hearing loss, tinnitus and cancer. And he faced all three with a stoic and dignified positivity. I imagine his suffering was immense and would have done anything to avoid his terminal condition and only have his ears to worry about.

 

It's not black and white. Cancer is not always worse than T and H.

All I know is that my breast cancer survivor aunt (she had surgery and one-year chemo after) told me that she couldn't imagine what it's like to have T and H and it must be so hard. She said this when I declined an invitation to her 60th birthday because it was a huge party with a live band and DJ.

I feel grateful that she validated my feelings but also pained that I'm being pitied. I hate pity but how could she not find me pitiful? She had 1.5 years of struggle during which she was surrounded by family and friends. She had little parties at home because laughter and conversations kept her going. She also attended church whenever she could because worship music filled her with hope. She was able to raise funds for her medical expenses because people understand how horrible cancer is. And now she's been in remission for more than five years, flying all over the world with her family, attending concerts of '70s artists, going to church on Sundays, playing with her grandchildren, singing karaoke with her college girlfriends, etc. She can do many things I can't. And as much as I hate to admit it, her pity is not misplaced.

I know cancer doesn't always have a happy ending. When my aunt got diagnosed, it was a scary time. But at least she stood a chance. With T and H, I feel like I don't know what I am up against.

 

Absolutely. It’s not black and white because it can vary so much. I mentioned earlier there are 100 different types of cancer. Some have better outcomes than others, and there is variation even within specific types. I lost a friend and a loved one to breast cancer, and I have two friends currently dealing with it. One cannot go to church, stores, etc. because of her compromised immune system. The isolation, the worries for the future — the friends dealing with cancer have been the most sympathetic and understanding people that I’ve encountered throughout all of this.

I also have a family member dying from a rare form of cancer. It’s isolating, painful and terrifying too.

 

@Tinker Bell Yeah I know, some cancers are more horrible than others, too painful and drawn out. I guess I'm reacting in general to the knee-jerk reaction I get: "At least it's not cancer!" I want to flip a table whenever I get that lol.

I feel shunted aside when people tell me that. Like my illness doesn't matter because I am not dying.

 

Can we wrap up disscusion here? It has moved well beyond my topic. Go make another thread if you wish to continue.

 

All I can say when people is of the opinion that death is always the worst thing to happen, is their must be a reason for the term "a fate worse then death". Death is certainly not the worst always.

 

Absolutely. There are some horrible conditions. Are they worse than cancer or tinnitus? It depends. But I don’t like the suffering Olympics. Because I suffer, I feel I should show empathy to others who suffer.

And cancer isn’t a gentle death. I think a death by cancer is a horrible fate versus other ways to die. This just reaffirms my support of assisted suicide*.

*My phone autocorrects suicide to living. What?! I had to edit this. It’s like my phone is lecturing me.

 

Back to your original post, I felt the same initially. I didn’t want to be told that I had to habituate or learn to live with this. It only made me angrier and fueled my depression more.

Then at some point I thought of all the health problems I currently have to live with, some that I was born with that have only continued to worsen. Others looming in the future.

This is a miserable condition, but if misery loves company then I can take some solace in knowing it’s a world filled with pain and pain is not isolated to me alone. Well, that’s a depressing thought.

I do wish you well. Please try to hang in there. Take it a day at a time if you can.

 

Sorry for my ignorance, but what is supported living?

And yes I know that time up to the death moment for cancer patient can be absolutely horrible, painful and devastating beyond belief, but when death finally arrives they are totally relieved of their pain and suffering. I hope this thought can bring you comfort. I'm sorry to hear about the loved ones whom you have lost to cancer

 

That's where I am now...I get furious at the thought of just accepting this

And I don't even have a severe case of T and H

 

Ha that was my phone! It autocorrects suicide to living. I’m suspicious of its motives.

And thanks for the support. I’m sorry if I’m so outspoken on this. I’ve been down this road before, and I’m dreading going down it again. This time, I have to help my children navigate the pain of losing a loved one too.

 

Fears for the future. That’s so much of the pain with this condition.

 

Ha, now that I can understand and yes I agree, assisted suicide is also something I support.

I can only imagine what kind of pain you are experiencing at the moment, and that there are children involved is even more heartbreaking. my deepest sympathies for you and your family.

 

@Tinker Bell and @TheDanishGirl

My brain doc and two other docs said to me that being told to habituate causes more depression.

Have a good day, my finger touch massage on my neck a few hours ago that gave me a little temporary relief told my brain you always win. The problem is another massage won't work at all until a day or two from now. Maybe not again this week.

 

Because it was so quiet that your brain can easily ignore it (and there was no emotional response to it). Our sounds are so loud that brain cannot ignore them. But my point is that it will be difficult to ignore the sound of T even if it gets better, because we have experienced this loud T. And I wanted to point out that the results of my small experiment show the similar output as the old university experiment, which was quite interesting for me.

 

And Sandra, haven't you posted somewhere here on this forum also information that (almost) everybody has some T? Or am I mistaken?

 

Nope, I have never said anything like that, you must be thinking of someone else.

 

Ok, sorry. My bet.

 

That's allright

 

By comparison mine probably isn't that bad either. Several studies about depression and tinnitus show volume isn't correlated with depression, but rather, the way a person attitude is towards it. Still, I will continue to view it and my brain as the enemy.

 

Your description of your T almost perfectly matches mine, it realy is terrible, i used to be 95% habituated which was not because of any choice i made it just happened, but i can't at the moment see how T like this is can be habituated to, i hope i am proven wrong.

I'm sure i read a post by you that your T is so bad that you hear it all the time no matter where you go or what you are doing, so which is it?
If it is mild you will find that regardless of how bad you want to rebel against it that you will habituate, resistance is futile, and you will become one of those people that in 10 years time says... Tinnitus yeah i had that once but i don't hear it anymore.

 

The way tinnitus becomes severe has nothing to do with frequency or intensity, but rather how someone reacts to it. My point there was that my tinnitus is probably softer than some people's, but my anxiety around it remains.

 

It has a lot to do with intensity and to some extent frequency, my T was moderately loud and it for the most part didn't effect me anymore, then earlier this year it got way louder and increased in pitch and i am now in hell and can't see how i will ever get back to the way i was, my change from mild to moderate T to now very severe is totaly because of the massive increase in volume and to a lesser extent the change in pitch.

 

Tinnitus is all about intensity and also the way a person reacts to. Both are important factors.

New to tinnitus what to do?

The onset of loud intrusive tinnitus can be very traumatic for most people. I use the words loud and intrusive, because tinnitus comes in many forms and intensities. When it is mild, moderate or occasionally heard in quiet surroundings it is usually not too bothersome and a person can go about their daily affairs quite happily and unperturbed by this anomaly. This type of tinnitus usually comes on gradually and in some cases it’s associated with hearing loss, as we get older and the usual treatment is the wearing of hearing aid/s.

Tinnitus can be caused by other things: an underlying medical problem, build up of ear wax (cerumen). Jaw problems. Some medications and even irregular blood flow through the body causing Pulsatile tinnitus. There are a plethora of other conditions that can be responsible. However, the most common cause is exposure to loud noise or music that has been played at high levels that has affected the cochlea in the inner ear.

This type of tinnitus can be loud, intrusive and very debilitating. Often leaving a person at a loss and not knowing which way to turn to escape the nightmare that has suddenly come upon them. Your Dr has probably told you, it’s tinnitus and nothing can be done, you’ll just have to learn to live with it. I remember those words as if it were yesterday resonating through my mind and thinking, live with this for the rest of my life, impossible. So I fully understand how difficult it can be for someone new to this condition to take this in and believe it to be factual.

If you are having difficulty sleeping you might have been advised to try a night time sedation or an ant-depressant to help cope with the stress and anxiety that often accompanies tinnitus. These medications can be helpful especially in the early stages and they don’t have to be taken long term, so it’s something to consider. They can act as a safety net so you don’t become too down.

A referral to ENT will usually be recommended. In the mean time try to keep occupied with something you like doing, as it helps to distract the brain from focusing on the tinnitus. Avoiding quiet rooms during the day by playing low level non intrusive music such as classical in the background can be helpful.

At night a sound machine placed by the bedside playing nature sounds or listening to favourite mp3 tracks or Cds are good. Keeping the volume just below the tinnitus is ideal and set to play throughout the night until morning. It takes time to get used to sound therapy so please stay with it. Whilst in a deep sleep it supplies the brain and auditory system with sound enrichment. Over time the tinnitus is pushed further into the background helping to make its perception less noticeable during waking hours.

In the early stages of tinnitus, if one chooses not to use sound enrichment sleeping can sometimes be difficult and there’s also the chance of the tinnitus becoming more intrusive as sleeping in a quiet room can allow the brain to increase it’s own background activity. In doing so it will also increase the tinnitus making it more intrusive during waking hours.

There is a tendency for newbies to try and cure their tinnitus which is quite understandable. There are many remedies, treatments and concoctions out there. Some affordable others quite expensive. I am not adverse to trying to help myself but want to say, there are charlatans and con artists eager to relieve someone in distress of their money so please be careful. Even tried and tested treatments I wouldn’t recommend a person try until they have been seen at ENT. Often a person after been seen at ENT is advised to wait a while.

The reason being. Many people habituate to tinnitus within six months sometimes a little longer and it has been known to go away. The ear is a very delicate organ and many Drs prefer to wait before investigating further and then suggesting a treatment. If other problems are experienced such as: pain in the ears, deafness, dizziness or balance problems this is of more concern and a person will usually been seen quicker.

It is best to have a word with your GP if you’re feeling stressed or depressed in any way, as previously mentioned there are treatments available. Leaving things alone until ENT advise you of the next step is the best thing to do in my opinion. Don’t try to fix anything or throw large sums of money at treatments that you have no way of knowing whether you’ll get any relief.

It is not advisable to listen to audio through headphones even at low volume and keep away from loud sounds. By all means go out but anywhere that plays loud music then wear noise reducing earplugs.
Take things slowly and one day at a time. Read some of the positivity threads and ask other members for advice. Many people eventually habituate to their tinnitus and go on to lead a happy and fulfilling life even though it may take a little time.

Michael

 

One can have pretty loud T and not be that effected by it emotionally.

Then there is me who has a somewhat mild T and it effects me to the point of wanting to be dead/kill myself

Which is worse?.....

 

In general perhaps, but personality has a lot to do with it. I'm anxiety and depression prone, so I will suffer more than someone who rarely gets stressed

 

Wow, I am really sorry to hear this.

What caused it to go from mild to moderate?

And what caused it to go from moderate to severe?

 

I do agree with this.

Someone with mild T and that has previously been prone to/had a lot of anxiety/depression/OCD can be affected and bothered by the mild T as much as and sometimes more than someone with moderate/severe T that isn't prone/doesn't have a long history of depression/anxiety/OCD.

But this holds promise, as if the person with mild T can get their depression/anxiety/OCD issues addressed (which is incredibly hard, but possible), then their tinnitus will cease to bother/annoy/upset/depress them.

Just my thoughts.

 

It was between mild and moderate.
It went from mild- moderate to severe after being misdiagnosed as having a chronic bilateral ear infection and being prescribed too many antibiotics.

 

Oh dear. I can't stand the medical community sometimes. I was misdiagnosed as having a mild ear infection when it was in fact something much more serious which eventually led me to having to have surgery on my ear which led to the tinnitus - It's very possible that if I was diagnosed correctly the first time I would have never have had to have the operation and I would not have tinnitus at all right now.

Also, where the antibiotics you were given taken orally or where they drops in the ears? From my reading the oral antibiotics have more of a chance of causing tinnitus increase as they can reach the inner ear wheras eardrops could only do so if you have a perforation in your ear drum.

There are many cases where people have recovered from ototoxicity - I hope you are one of these cases.