@Mystery Reader my ENT referred me to a tinnitus ENT specialist in Boston. I don't know how long I'll have to wait to see him but I hope he can advise me on whether or not I should be using TRT like neuromonics or sound therapy like pink noise to help with my hyperacusis.
I meet the CBT therapist on Wednesday of next week. I pray he will be able to help me learn ways of coping.
I don't think I'll take breaks from the forum yet. I still need it. I will definitely keep updating this thread though. The success stories give me hope and drive.
My new tinnitus from my grommet surgery is so terrible I am still hoping the spike settles. I didn't realize how mild my tinnitus was before. Ergh, this is such a rollercoaster ride of emotions but I can't give up.
Seeing the post of a member commiting suicide today makes me feel sad and scared. I don't want to give up. My daughter needs me. My heart breaks for her.
I saw your post on your Habituation plan.
It motivated me to finally register to this forum, and start to speak out.
You have a great plan, and as an engineer who feels the need to know everything, and how to fix things, I have been steadily working on how in the heck I am going to continue my life going forward since I got this ridiculous affliction. And it is is ridiculous, what on earth is advantageous to my body that it is built to make this noise when my ear is damaged, or whatever......but that is another conversation.
Your tinnitus started March of this year, mine started July. We seem to be in the same place, and I have had gotten to the point a little quicker, but that is just because I am single and do not have others to worry about.
Mattering on what a person has in his mental health tool bag, it takes a couple months just to get your body off the "constant high alert" situation. It took me about 2 1/2 months before my body wasn't literally shaking all day because it was in constant fight or flight anxiety. Once I got on top of the tinnitus anxiety, and also remembered that tinnitus was not the only thing giving me anxiety at times, things got easier.
First part of dealing with my tinnitus, was to check everything out, and see a bunch of doctors:
General Practice to Audiologist to ENT to ENT specializing in Tinnitus, get an MRI, make sure it is not congestion, go on steroids, see an endocronologist (thyriod), back to the ENT, and once everything checked out, and I am blessed that I am in good health outside of my ear situation, it was on to habituation.
I know the term, finding a "new normal" makes people want to punch the computer screen reading it, but I have had to already do that a couple times in life. And when I talk to my 75 year old father, I am reminded I will need to do it again.
If you have not gone for a hearing test yet, do that as well. They can help determine if hearing loss is the issue. I know ENT's like to throw out the term "virus" but remember they "practice" medicine, it is tough for them to know things for sure, and tinnitus is a difficult problem. Trillionaires suffer from this affliction, so it is not a matter of money that prevents a cure/solution to the issue.
My habituation plan:
TRT:
This is great, but there are so many opinions on how is it used. Not to mention, you have to find your sound of peace. If you do find your sound, feel blessed as there are some that cannot find the sound of peace that helps them, and if that happens, then you will learn just as those have to find it some other way.
The common practice I have read for how TRT works, is you find a noise that helps you "mask" your tinnitus. I have hearing loss at 6000Hz, not sure if that is what my tinnitus is from, but for reference sake, that is what my audiologist referenced it as, and I use this masking noise:
<-- For me, this is silence/peace.
You put your sound on, JUST BELOW your tinnitus volume. The thought is that it takes the edge off, and helps your body hear the tinnitus but not react to it, in a nasty way.
Keep in mind, there are no medals coming in the mail for you to "do it the hard way". If there is a night, or a time where you want to turn that masking noise up and just not hear your tinnitus then do it. Your body needs relaxation time. I guarantee part of the puzzle that causes tinnitus is nerves, and overloading your nervous system.
I also sleep with this sound on. No need to get a $5,000.00 hear aid, or masker just yet. $20 headphones, and a $30 mp3 player works just fine. If you use the noise to sleep, then purchase "soft" headphones, $20.00. They were the BEST thing ever, when I found those.
CBT:
Our minds are a blessing and a curse. The power of thought can plunge us into despair, anxiety, and depression. Yet, it can also save ourselves from the same. I got divorced (thankfully, LOL) a couple years back, and the realization of what a poor example of a man I was, and that I had to change a lot of who I was if I were to find happiness, companionship, etc., etc. came with a bout of terrible, terrible anxiety and despair. I used cognitive thinking to keep myself in check.
The process needs to be practiced, you need a counselor to help you with it, but it is simple.
My sub conscience: "You are worthless, and you will never EVER find companionship"
My conscience self: "Whatever. I have started to life, dress better, act better, learned how to be fun, and the ladies like me. Shut your neurons and go back to your semi-reality."
It works. When my tinnitus came about, and the thoughts of "I will not be able to get through this" was in my mind. I used CBT to get over those thoughts. MILLIONS of people have this affliction, and billions throughout history have had it. I have talked to people that have had it for 20 years, 30 years, or longer. So, you see them and you see all the people here, and you realize. It is very possible to continue on.
Currently, I am using CBT to get back to my life. I have to find the new routine, the new normal, and what not, but I know I can do it. I am making strides every day. Even when I have a day where I take a few steps back, it teaches me how to deal with bad days.
Keep in mind, one of the hardest things about tinnitus is it is a constant stimulus. Thus it is tough to remember things that were bad before tinnitus. Just got to keep a bad tinnitus day, and a bad day because its a bad day separate.
My sub conscience: "You had a bad day, it is all because of your tinnitus, it was never like this before"
My conscience self: "Madness. That is just crazy talk. The last year of my marriage makes this feel like a cake walk. Bad days happen, that is life. Shut your neurons and go back to your semi-reality."
Pointers: Tell your counselor/therapist to treat you as if you were OCD. If you can find a counselor that deals with chronic illnesses that is even better. There are almost no therapists that deal with tinnitus as a specialty, these are the best alternatives.
Meditation:
This has been the toughest one for me to work on. I have practiced yoga for years! I advise everyone to try it, by the way. But, I am terrible at mediation. Not to mention it is work. I meditate for 15 minutes a day, and it is 15 minutes of "staring into the eyes of the beast". The concept is to start training the body to be able to hear the tinnitus, full bore, as you concentrate on it and nothing else, and be calm. If you are calm, then your body is calm, if your body is calm, then it won't freak out, if you do not freak out, your body will learn this is not something dangerous, or life threatening. Slowly you will be able to hear your tinnitus, and not be effected by it. I hurt my shoulder playing rugby, but I have learned to live it with, and the pain is there, and restrictions are there but it doesn't effect me. Well, my ear is now hurt, and my body can do the same. My shoulder has been this way 24/7 since my mid-20's, so having a new aliment is the same, just a little tricker mentally.
Tinniuts is a anxiety/depression catalyst. Thus why it is important to get it under control, and get the body trained to not react to it.
So far so good with this meditation. Hardest part is when I am not in the mood to do it, I should not force myself to do it. Again, no medals in the mail coming for doing it the hard way.
With preparation comes confidence.
The rest of what you have is great.
Keep in mind there are some truths about being on the internet.
1. You are reading the examples of people worldwide. What happens to one person is not going to happen to the next.
2. A lot of people who get better (it goes away or they habituate extremely well), never come back to this forum, or the internet. Why would they ? Time to get on with life.
3. It is hard to habituate when you are still seeing doctors, and looking for causes. I loved when my doctor would say I cannot fixate on my tinnitus because I need to start habituating. Kind of hard to do when you are seeing 3 doctors a week for it. Once I was done with the doctors, and did all I could medically, it got easier.
4. Suicide is scary. Mortality is scary. I am not religious. I believe sex and death drive us as beings. Death is something that drives us. When talking about it, it is hard. When thinking about it, it builds anxiety. Yes, people who had tinnitus have killed themselves. But, so have people without it. That is their choice. Keep in mind, no one gets out of here alive. We will all meet death, so personally I do not see it as an option, and would hope that someone would really do everything, every little last thing they could before getting to that point. My soul, heart and everything goes out to anyone who is there. I hope you stay with us. For you personally, you are still new to this, plus there has not been post from you since August, I am sure you are seeing benefits, and making strides. Keep going.
5. You gotta take the internet for what it is. Never make decisions based on it. Make sure you talk to professionals, and keep things in perspective. This forum is a nice resource, but it is also a place where people vent frustrations.
Good luck.
And that goes for everyone that sees this, bless you all, and I hope for good days.
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