Habituation Misconceptions?

[Red]

My bad. I don't have pain but I do have barrets disease, bfs syndrome, ocd, health anxiety and tinnitus. I'm actually a pretty fit 39 year old. I don't drink, smoke or eat a bad diet. Yet all my friends, who seem to put no effort into their health, seem to be living life with no ailments.
I had anti-reflux surgery last October and since then I no longer get heartburn. But the operation could come loose at any time. And my barrets needs to be scoped every 3 years to check it's not turning cancerous.
I know my struggles aren't as bad as others. So I guess I just try and stay positive. And am thankful I'm not in pain and so far my barrets hasn't turned cancerous. Hopefully it never will. But if it does, I'm determined to make the most of the time Inbetween.

I think it is next to impossible to get through life without having some sort of medical condition. How truly bad it is, in my opinion, comes down to how much it affects your quality of life. When life takes away the things we love it is time to look for alternatives. Seeking out new hobbies is the perfect coping mechanism but if your medical condition, pain, doesn't let you seek out these new hobbies… You don't really have much to live for.

With pain, I've given up my lifetime hobby of video games and replaced it with tabletop games, which I love dearly. However, my ability to play tabletop games hinges on my ability to hear the other players and to be able to keep my place quiet enough to hear them. If I ever lost that then I truly would have nothing left. This hobby is what keeps me going!

 

[BobDigi]

Why can't you play video games? And why are you in pain?

 

[Autumnly]

People with intrusive tinnitus can still read books, go shopping and live a normal life.

I really want to believe this but I'm just left wondering 'Does their tinnitus get worse over time?', 'Do they experience spikes or is their tinnitus stable?'. Can't imagine 'living my life' without making it permanently worse, I have a couple of decades ahead of me. But that's because I started out with mild tinnitus and now I have severe tinnitus and hyperacusis so it did actually get worse.

 

[Red]

Why can't you play video games? And why are you in pain?

I can't play video games because of the type of chronic pain I have is worsened by them. I can't type or use a mouse with my hands. However, I do not have any pain in my actual hands or arms. My pain is referred and goes straight to my face, the nerves of which cause the most painful type of chronic pain. I rely on voice recognition software to be able to use my computer but since my pain attacks my face it is not always great for me to talk for long periods of time without breaks, making it harder to use the computer on a recreational level.

I use my foot to control my mouse but again I do not like using it for long periods of time because I have a second type of chronic pain, neuropathy and/or sciatica, which also aggravates my facial pain with long-term use.

Currently my best hope is an eye tracker or a head tracker but since these also rely on the face and head I am somewhat skeptical of them. They also usually cost hundreds of dollars and are not an easy purchase.

I don't ever want to get to a point where I can't speak but I worry every day that it is in the cards for me. People who believe it is realistically attainable to willpower through the pain are naïve. I'm sure most people don't really feel like doing much of anything when they have a pounding migraine. Try having that for the rest of your life. For me and many others, the more you try to push through the pain the worse your pain actually gets.

I know that Fishbone is able to willpower through its but I honestly believe he is an anomaly. While his story is inspiring, it would be outright mean to expect other pain patients to be able to do what he does. It is also important to keep in mind that chronic pain is incredibly diverse and by comparison I don't actually think tinnitus is that diverse.

Trying to do things normally, much less play video games, would be similar to a tinnitus patient continuing to go to raves. It's just not doable and can make it permanently worse.

I left a pain management office in tears on Wednesday when I was told that they couldn't do anything for me and that if I really wanted help I should go to a college or university. (Because my chronic pain symptoms are abnormal and seem to not be understood by any doctor I go to) Sorry to continue to go off the rails here… I feel trapped thinking that I'll never be able to afford medical help.

 

[BobDigi]

That's fuckin misserable. I'm sorry you have so much to deal with. Well im not even going to try and tell you to be positive and keep going forward etc. You're problems are on a different level.
What's the name of what you have?

 

[Red]

That's fuckin misserable. I'm sorry you have so much to deal with. Well im not even going to try and tell you to be positive and keep going forward etc. You're problems are on a different level.
What's the name of what you have?

I have been "diagnosed" with atypical facial pain, which is probably just a broad classification at this point as opposed to an actual diagnosis. Atypical facial pain can also refer to type 2 trigeminal neuralgia. But I really intend to try to get my doctors to consider myofascial pain syndrome for my case.

 

[Dij111]

People keep talking about tinnitus "as a sound".
Does no one else physically feel it pushing down on your head and feeling like your brain is constantly overworked?
Even after a good night's sleep I still wake up feeling like I got no rest at all.

This is part of why I don't believe you can truly habituate, your brain function literally changes once you've got tinnitus.

 

[threefirefour]

People keep talking about tinnitus "as a sound".
Does no one else physically feel it pushing down on your head and feeling like your brain is constantly overworked?
Even after a good night's sleep I still wake up feeling like I got no rest at all.

This is part of why I don't believe you can truly habituate, your brain function literally changes once you've got tinnitus.

A lot of people who "habituated" will tell you it's not even that. It's just not caring. So basically it's nothing for the most part. We just gave it a name because nothing is all we have.

 

[BobDigi]

type 2 trigeminal neuralgia

But I really intend to try to get my doctors to consider myofascial pain syndrome for my case.

I wish you the best of luck getting the treatment you need. I play chess.i play on chess.com as bobdigi. If you ever want to play let me know. If you don't know how to play I can teach you?

 

[Pleasure_Paulie]

I think this does make sense up to a certain threshold. I usually use the wedding ring analogy: in the beginning it bothers you, but then you get used to it and you don't notice it anymore.

I really appreciate that analogy and can relate when I was married.

I don't listen to my T, but its existence creates a physiological distress that is hardwired into my body, the same way we tend to pull our hands away when we get burned before the realization that we got burned even reaches our consciousness.

I was thinking about this physiological distress hardwired today but in a different context. I've noticed in a lot of situations I think I've developed this for white noise in that I don't feel secure or relaxed if I don't have white noise around; even if I can hardly hear my Tinnitus!

 

[Julien87]

All the best to you Ed, and thank you for all your help here!

 

[Starthrower]

I'm going to make this my last post as the negativity here is mind blowing nowadays. I even get PMs giving me grief! It just isn't worth posting anymore and I definitely need to leave to get my head straight anyway. I sincerely wish you all the best and hope that you reach a place that you personally feel is a success. We can all do it.

@Ed209 please don't stop posting. I just got here after a long absence from all tinnitus support boards and I always like reading your posts. We need the positive perspectives to outweigh the negative ones. I guess I am a bit jaded now to the negative unless someone constantly points it out in posts. Giving attention only makes it weigh more.

 

[PaulBe]

Does no one else physically feel it pushing down on your head and feeling like your brain is constantly overworked?

Yes, yes and yes.

 

[Alue]

I'm going to make this my last post as the negativity here is mind blowing nowadays. I even get PMs giving me grief! It just isn't worth posting anymore and I definitely need to leave to get my head straight anyway. I sincerely wish you all the best and hope that you reach a place that you personally feel is a success. We can all do it.

You're a polite poster, and I mean no disrespect, but this isn't the first time you have announced that you were leaving this forum due to it's negativity.

 

[GregCA]

You're a polite poster, and I mean no disrespect, but this isn't the first time you have announced that you were leaving this forum due to it's negativity.

It's ok, he's welcome to come back anytime he wants. Nothing wrong with wanting to take a break every once in a while.

 

[Holly1987]

Have you ever noticed how your tongue lies uncomfortably in your mouth? Your teeth are in the way and it doesn't fit very well. However, your brain doesn't think about it unless you do. The same can be said about aches and pains that we tune out all the time. A negative mindset will never let go of tinnitus. I understand this. Tinnitus is a monumental task when it's really intrusive but habituation is possible. It's all in the mindset.

If something no longer bothers you then it's no longer a problem; it's as simple as that. Sometimes, I think we can become so fixated on it that professional help maybe needed to help break the cycle of negativity. I will point out that I am currently NOT habituated. Mine was broken by an obscenely loud MRI scan, but I will get back to where I was because there's no other way. I've got a daughter to look after and she can't have her father depressed.

I'll just say I know it's real because I lived it for a long time and I will again. If you disagree then that's fine. I just don't understand why some people feel the need to throw abuse around at others for just stating the facts on their own personal experience.

I'm going to make this my last post as the negativity here is mind blowing nowadays. I even get PMs giving me grief! It just isn't worth posting anymore and I definitely need to leave to get my head straight anyway. I sincerely wish you all the best and hope that you reach a place that you personally feel is a success. We can all do it.

Hey Ed, I'm probably a bit late posting this but I just wanted to let you know I have spent A LOT of time reading everything I can in this forum and your replies over the years have helped me immensely. I am very grateful, thank you. I wish you the best and hope to see you back xx

 

[BobDigi]

It's ok, he's welcome to come back anytime he wants. Nothing wrong with wanting to take a break every once in a while.

That's what I do. I come back out of interest, then decide to stay around for a while to try and help a few people, get dragged down by negativity, leave for a while, then come back later.

 

[Rajin]

A lot of people who "habituated" will tell you it's not even that. It's just not caring. So basically it's nothing for the most part. We just gave it a name because nothing is all we have.

But that all we got , nothing . You are correct. Can't believe my luck , got something I never new exist. Also no cure or medication to help. Unbelievable, I still can't get over thinking how unlucky I am. But we have to fight on , to forget about it is not easy also. Everything about T blows. It a terrible thing. To get used to this, take a long time and a slow process. Years. I still wonder how people here had it for decades and still going,they are heroes. I am new to this , if not for people here , I don't know if I would have made it for the 7 month I had it.You are smart guy too . Know a lot. Everyone opinions matter here , good ppl here.

 

[Jazzer]

A lot of people are still in the acute stage and habituation is like an insult. I won't lie, I felt the same years ago before I knew any better. Don't get me wrong tinnitus is life changing. I have to really watch what I expose my ears to and it's always looming as a threat. But, we can live with it if we accept it and move on. The more you fight it the worse it gets. Get angry about it and it will imprint itself even more into your consciousness. Accept it and stop caring so much about it and it will stop bothering you. Hard to believe when you are pissed off at life, but it's true for most people whether one believes it or not.

I agree very much with all of this
The only bit I haven't achieved yet is
"....it will stop bothering you...."

 

[jay777]

"....it will stop bothering you...."
When the fat lady sings
@Jazzer

 

[Tex]

I had this extremely loud T, as well as H, for years before ever finding this site. Therefore I had never heard of habituation.

I am of the opinion that each person has their own definition of it. I won't even use the word. For me if just getting on about life the best way I can is habituation then I'm there.

That doesn't mean that it doesn't bother me. I've finally gotten the courage to decline invitations to noisy social functions, especially ones where there is excessive alcohol, loud music, and everyone is talking so loud that by the end of the night my ears are REALLY SHOT.

But like a recent thread, there are worse disabilities. I'm on two feet. I have both hands and my eyesight is pretty good. I can still hear, just have to ask people to repeat themselves a lot. So life could be worse.

And just replying to this thread seemed to make my T louder. That does suck! I'll distract myself with something else now.

 

[Jazzer]

Have you ever noticed how your tongue lies uncomfortably in your mouth? Your teeth are in the way and it doesn't fit very well. However, your brain doesn't think about it unless you do. The same can be said about aches and pains that we tune out all the time. A negative mindset will never let go of tinnitus. I understand this. Tinnitus is a monumental task when it's really intrusive but habituation is possible. It's all in the mindset.

If something no longer bothers you then it's no longer a problem; it's as simple as that. Sometimes, I think we can become so fixated on it that professional help maybe needed to help break the cycle of negativity. I will point out that I am currently NOT habituated. Mine was broken by an obscenely loud MRI scan, but I will get back to where I was because there's no other way. I've got a daughter to look after and she can't have her father depressed.

I'll just say I know it's real because I lived it for a long time and I will again. If you disagree then that's fine. I just don't understand why some people feel the need to throw abuse around at others for just stating the facts on their own personal experience.

I'm going to make this my last post as the negativity here is mind blowing nowadays. I even get PMs giving me grief! It just isn't worth posting anymore and I definitely need to leave to get my head straight anyway. I sincerely wish you all the best and hope that you reach a place that you personally feel is a success. We can all do it.

Best wishes Ed.
It would be selfish to wish that you stay on here, but I would like to say that your integrity is such an essential aspect of this site.
I also have a lovely daughter, who has developed Tinnitus.
I will succeed to give her a good example.
Best
Jazzer xx

 

[PeterL]

That's all habituation is? Doesn't even deserve a name. If you still notice the tinnitus regularly then how can it be called that? It should be called just having tinnitus. Feels like more experienced folks are building it up.

Better make sure my tinnitus doesn't get worse then.

I have PT (3 months) that is probably considered on the lower level side. As with most people with PT or T, getting to a point where the anxiety lessens and allows you to feel "normal" again, is what I envision habituation to be. Iv'e talked to people who have T, but is no longer bothers them, sounds like a better place to be than worried if you are ever going to get better.