I'm Going to a 4 Week Tinnitus Treatment Camp Soon. Will Share My Experiences.

Nice fish! Me luv trout!
Hope you had a good day today, @meeruf.

 

A few years ago I was able to take a CBT course online for free that was being sponsored by a British University (can't remember which one). It was being done in conjunction with a survey at the end to decide whether or not the results warranted further research. I actually enjoyed taking it. It included white noise/nature sounds, a therapy portal with chat, and links to research papers on tinnitus with an FAQ, and the best part was that it was free. If I find the website I'll post it to TT if the link still works.

 

I really love this favor that you are doing for us from the T -camp! Really good lectures you are going to have next week!

 

Hi folks..

Sorry that I have not written anything the last days, I got a virus on my laptop that made it almost useless. Every second word at any web page turned in to advertisement links, and every time I pushed a normal link I was sent to something else, not the page I wanted. It also lagged a lot when I tried to write here. But it's good again now.

Its been quite bad weather the last days. Its been 10°C and mostly rain. 10°C feels fuuucking cold after a long and hot summer. In early spring however, 10°C feels like the sauna. I have not been so much outside. I have no pictures this time.

What have happened..?

On Monday we had a meeting with the 'Norwegian Association for the Hearing Impaired' all day, about what kind of rights we have relative to work situation, facilitating, financial coverage of hearing aids etc. Not so important for you folks since most of you are not Norwegians.

I found out this day that my hearing on my right ear is so bad that I get full cover from the public health care. Which is nice, but also, kind of sucks. Hahaha.

On Tuesday we had a psychologist coming over to talk about depression and anxiety. He did not tell anything "new". I have read most of what he said on the internet earlier.

Today:

First part of the day a comedian was here and talked about how to stay happy in difficult times. Unfortunately, when the lecture started I had to go because I ate to much candy the day before. I had a date with the toilet rest of that morning. Shit happens. (What an appropriate phrase)

He is coming back next week, so it does not matter.

After dinner we had a lecture with an ENT-specialist. He had a lot of clever stuff to say. I will retell three things he said:

1: Most of the people that have tinnitus are not bothered about it. He also said that volume is not the most important factor when it comes to who is bothered and who is not. He said he had patients with severe hearing-loss and loud tinnitus, but did not care about it. He also said that other people only had a tiny beep, and was very bothered by it. Which leads to his second point.

2:


This picture is not the one he used, but it was a similar one. It makes the same point. This is taken from Google.

The ENT-specialist told us that he had two kind of patients.

The first group goes to his office, tells him that they have tinnitus. They think it's irritating, but no anxiety or fear. Some tell they have loud tinnitus, other tells him they can only hear it when its completely silent.

The second group goes to his office, tells him that they have tinnitus. They are very anxious about it, severely stressed out, feel fear etc.

The difference about these two groups is that the first group, who only looked at their tinnitus as a small annoyance. Did not go into the vicious circle, as you can see in the picture, where everything fuels everything else. Yes, they could still hear it, but it was a meaningless sound for them, so the brain just ignored the sound most of the day. Just like we ignore the sound from the refrigerator, or traffic etc.

The second group, who looked at their tinnitus as something scary, aimed their "radar" to the tinnitus, which just made it even more scary, and louder. Just try it, some day you have some kind of pain. If you focus really hard on the pain, it will just get much much more painful. Even the smallest pain. Just thinking about something painful can make you feel pain.

3:

The doctor also said that when you focus on the tinnitus and label it with something negative or dangerous, your brain will actually make more and stronger nerve-connections between the hearing-center, limbic system and your hearing. Making it even harder to ignore in the future.

After this he told us a story from when he got a job at a new hospital. He said that the alarm for "low-battery" in some device at his new office, was the same as the cardiac arrest alarm at the old hospital he worked on. So every time the device started to beep, his pulse raised and he got stressed. He said it took him six months to get used to the new meaning of the alarm. His brain (limbic system) had labeled this alarm sound as; "okey, now you have to get up and run." And it's just the same with tinnitus. When you label it as something scary or dangerous, your limbic system tells your body to get up and run. How do you sleep when your body is ready to run away from a tiger? Because that is what your limbic system prepare you for, if we look at it from our primitive past.


Other thoughts:

It is really nice to actually meet people with the same problem. I know we have forums like this, but it is something else to actually speak with people in real life. Get friends that understand. Friends you can keep after the stay. You don't feel alone about it anymore. Everyone with tinnitus knows that talking with someone who don't have tinnitus is like speaking to a wall. It's like explaining colors to a blind person. They just don't get it.

The people on this camp. I can't tell much about them since we are under strict confidentiality. By definition we are patients. You see them suffer at one point, but in the next moment they can be laughing again. You understand that it's not the end of the world. Most people get some "shit" during life. Very few live life from start to end with no scratches at all. Tinnitus is not even a disease, it's just a irritating symptom on something else, normally something harmless, in a way, we are lucky. It could be cancer, or some other serious stuff.

Yeah, the best part of this stay is to meet other people. The society we live in makes an illusion that most people always are happy. Media, Facebook etc. People just post the good stuff, no one tells bad shit in a Facebook status. It makes the illusion that everyone always are happy. But they are not.

It's really nice to get a break too. When I'm here I can see my situation home much better, I see it from an "outside perspective". What I do good, what I don't do good, what to change etc. If you have the opportunity to get away some weeks to reflect, and you are new to tinnitus. I think that is something you should do.

We will have the "How to master tinnitus and reduced sound tolerance" lecture on Saturday and Sunday. Will post more then.

Peace!.

 

Thank you. Nice with some feedback. Long time no see.

This is for everyone: If you have some questions, or you want me to write about something, just tell me. I can only write about what I can think of, if you have something you want to know. Just tell me.

 

Such wonderful posts/info/pictures @meeruf! I just read them because I took a small break from the board. You are a very generous person to share this journey with us!

Norway is very progressive--it's hard to even find a tinnitus clinic here in the US and hearing aids or maskers are not covered by insurance. I would love to see your country someday.

 

Hi Meeruf,love your reports,look forward to them.hearing things explained ,I'm in the second group of T ,I've decided.No doubt you will be indated with questions.got pen and paper at the ready.No doubt you have lots of your own.Stay well

 

Hi Meeruf.
Great that you keep us informed.
The ENT did TRT with you. It's the same information I was told and what you can find on www.tinnitus.org.
And I remember loud T at first, then it went down, from one ear to the other, and finally into the head and very loud. So all the bad connections in the brain, limbic system and automatic nervous system were established.
The vicious circle was finished. And my auditory filters comcentrate on T as a threat.
TRT teaches you how to leave this circle:
- Demystification of T (just a compensation of hearing loss done by the brain)
- 24/7 sound enrichment
- Relaxing techniques
- Not reacting to the sound (loosing the aversive conditioned response)
- Tiiiiiiiiiiiiiiimmmmmmmmmeeeeeeeeeeeee (12 to 18 momths, for severe cases longer)
If it would be that simple....

 

I guess more or less everyone here on the board belongs to the second group - until habituation kicks in.

 

I was fine Martin,until I got a virus ,then put on meds and it all suddenly changed,my T never went back to where it was prior,so hence I'm second group,I have bad time getting to terms with T now.
Today mines low ,and it goes into the head as you describe.at one time I would have enjoyed a low day but those meds changed all that.Will look at what you've put up thanks Martin

 

Great topic! I hope if you could post some concrete advices that you may get there? Thank you!

 

Hi guys. I'm working on a longer text right now. It will take some time to write it. We had a lot of stuff this weekend about TRT, cognitive behaviour etc. This text will be many pages. Be patience.

 

Wow, awesome posts @meeruf! This 'T Camp' is a fantastic multidisciplinary and social way to approach T as it should be done. As a fellow 'Nordic welfare state citizen' we should shave similar things in Finland, but alas we don't. @Markku, we should do something about this. I am serious.

 

Hello Meeruf..Thank you for all the info.looking forward to the next text! take care God bless you!

 

i dont want to be negative, but although it is such a beautiful,peaceful place where you are i cant help myself-my first thought when i saw your pictures of that place was of that terrible serial killer in norway who killed all that teenagers just a few years ago. that island in norway-i saw it many times in the news here in germany-looked similar to the place where you are now ;(

 

When are the strippers coming ?

 

One of my favorite comments about T, "It's like explaining colors to a blind person. They just don't get it."

 

With respect michela was it really necessary to mention that terrible tragedy, the guy has gone to a lot of trouble informing us of his journey, probably don't need reminding of that incident

 

Can not wait for the result

 

Damn, I need to become a citizen of your country. Looks like hell of vacation.
Thx for sharing this.

 

Thank you Meeruf very much for the time and generosity to file this report. It surely feels good to be in such a place with people who suffer like you, understand you, and the scenery is so peaceful. Ah, about the fishing. What a lovely & serene lake! I am sure T will go down in volume in such relaxed setting. The heck with T when I go fishing. LOL. Sure hope Canada will have similar facilities but in my dreams I guess.

 

Very nice to read this diary of your stay there. One of the things on my near future list is going to a TRT clinic.

 

It's coming. I had 10 days vacation after the camp. Went straight to Copenhagen, and after that I was on the west coast in Norway visiting family (Ålesund). I'm back in the capital now where I live.

Just needed a brake with stuff about tinnitus and just go along enjoying life. But I have not forgotten it. I started to write the summary, but it got lost somehow. I will finish up with summary of the "How to master tinnitus and reduced sound tolerance" lections, then write my final thoughts about the stay.

By the way, there is a re-stay in January that lasts for two weeks. I don't know the date yet, but I will get it in the mail sometime this fall.

 

Yeah. That terrorist attack back in 2011 was quite unexpected. First the bomb in Oslo for distraction, then he went out to that island killing all the minors. The good thing is that they took him alive, and he is now serving a 21 year long prison sentence with detention. Detention = never free again in this case. The other good thing is that Norwegian media never talk about him anymore. He is forgotten. He is nothing. He is just stuck in his cell, all alone, for the rest of his life.

 

Hi Billie. Your post in another tinnitus forum, I don't remember the name of the forum. But that post was the first post that actually gave me some hope one year ago when I was all drugged down on anti-anxiety and sleeping pills. I read it over and over again.

 

Hi meeruf, that must the Yuku TSMB board. That is the board I actively participated before TT. I spend time more here now as there are much more newer sufferers asking for help here. I believe tinnitus support should be like 'Doctors without Borders', so with the little time I have to contribute to the support community, I want to spend it more effectively where the newer sufferers are. But I am still a participating member at Yuku whenever a newer sufferer is asking for help and I feel that my experience can help him/her out. I am happy to hear that one of my posts have helped you, meeruf. I like your success story post very much. Extremely well written and loaded with insights and information. You and your story are now helping many newere sufferers too. I am happy for you that your government is so generous in offering such facility to tinnitus patient. Out here in Canada, we are still struggling with the government saying 'what tinnitus?', not to say spending funds on facilities to help tinnitus patients. LOL.

 

@meeruf hey hope all is well. I remember some time ago you were talking about pain all over your body, i was wondering how you were doing in that regard. I get a lot of pain, not H but around the ears neck face, any way hope the camp went well man.

 

@meeruf Hey there, I was just thinking about this camp you attended..It sounds like you learned alot and it gave you a better perspective? Just curious if you could update on what they said regrading T and reduced sound tolerance. If you have written about it elsewhere, maybe you could point me to it?

I would love to meet some people in person..that would be really great Hope you are well.