Survival Guide (6 Months In)

I’m at the 6 months mark now and I’m done with watching these forums anonymously, so here we are!
This post is way longer than intended, so if you're up for the task of reading it, grab a good food and make yourself comfortable (with some good masking sound)

The succes stories have been very helpfull to me and maybe I can add a couple survival tips for newbies.

About my tinnitus (skip it if you only want to read the positive things):
I think the tinnitus that I have can be called ‘mild’, but it fluctuates a lot and really scares me from time to time. I also hear a lot of different noises (mostly in my right ear). I think I’ve always heared white noise (I’m 25 now), but began to notice it when a woman with heavy T got in the news because she ended her life (she also had heavy hypercausis). Being the ‘always ready for shit to hit the fan’ person that I am I started listening to what I was hearing and then noticed the white noise. But I was okay with that back then.
After a gamedesign study of 4 years and art academy for 2 years (that’s 6 years of being very ambitious, constantly filled to my neck with stress) I decided to do absolutely nothing for 7 weeks during the summer holidays. I only studied for a philosophy exam and slept maybe 12 hours a day (because in my mind, that was relaxing). At the end of the 7 weeks I got in to a big fight with my boyfriend (while being a little bit tipsy) and the next day when I picked up a philosophy book I heared a high pitched noise in my right ear.
I freaked out like crazy (I instantly knew a nightmare came to life) and whent to the doctor. There they found that my ears had been stuffed with earwax, which they couldnt remove. After three days they finally got it out, but those days were enough to make me a total wreck (I couldnt get the thought out of my mind that I was going to have the same fate as that woman from the news).

Now 6 months later (and a couple classic useless doctor/specialist visits), the noise is still there and has gotten a bit louder (but also almost went away a couple times). Sometimes he has a few friends that swing by (including a bee) but mostly they come and go. In the first 3 months I had a lot of panic attacks and now maybe one once a month. So I'm very happy with that! I also don't think I am going to die anymore, most of the time Hope that get's even better in the next 6 months!

Now why would I put this in the succes stories section? Because next to my T being scary, it also has given a very positive new turn to my life. Which wouldn’t have happened whitout the T (I’ll blend them in in the survival tips).


CHRISTINA’S T SURVIVAL TIPS (for newbies, but maybe also older sufferers. Especially for stress induced T):

- Write a SURVIVAL GUIDE for yourself when you get into that scary black hole of thoughts. Your emotional system can act way stronger than rational thoughts and in that case reading a custom made survival guide can really help! I even made one for my boyfriend. I’ve written things down like: ‘whatever you do DO NOT let Christina be alone’, ‘put music on’, ‘put Christina into the shower’ and ‘put Christina in a blanket filled with food’. He nowadays also already puts music on when I get home. That way I do not need to worry about 'scary' silences.

- Give a VERY honest look at your life right now (especially your work/study life). I’ve always been a very ambitious person and my body was already giving me alarming signals before the T. It was untill the T started that I finally understood: ‘why on earth would I want a oscar. If I would have a oscar now I could care less with this sound in my head’. That has put things in perspective big time.
What do you really want? I was thinking an oscar would make me happy. But that wasnt about the oscar, that was about happiness. And I was on a very destructive path to achieve that.
Since I let the tought of ‘must be succesfull’ go, I have had happiness spikes that I didn’t even had before the T.

A very interesting view on happiness:
The (dutch) books of Rients Ritskes: ‘leer denken wat je wilt denken’ and ‘leer voelen wat je wilt voelen’ also helped me loads.

- WORK OUT. Then meditate. < KEY KEY KEY
I started meditating but kept feeling very stressed. I didn’t understand this untill I read that stress creates a lot of adrenaline and one of the most succesfull ways to get rid of that adrenaline is to WORK OUT. Adrenaline is a strong hormone that can stay for a pretty long time in your body (which can be very destructive if held to long). Working out is not only good for your figure and for the loudness of your T, but also gets the adrenaline out. And especially in the first months of your T you produce loads of adrenaline.
If you are going to look for a gym, try to find one with a swimming pool or a sauna! Mine has both and the hot shower after swimming has given me 'hallelujah' singing in my head multiple times.

- Look at your sleeping situation if you are sleeping with somebody. I put a bed in another room so that I could expiriment freely with masking noises and that has freed me from a lot of stress. If you are sleeping with someone and feel that you are stuck, unstuck yourself. Take care of yourself!

- Next to working out, find a way to be FRIENDS WITH YOUR BODY (again). I’ve been constantly functioning from my head, whitout really paying attention to the rest of my body. My body was annoying anyway because it constantly had a anxious feeling in the stomach or a bloated belly. So it was better to ignore it. Then all of a sudden my head wasn’t to fun to be in also, because it produced a very irritating noise.
Yoga, meditation (I’ll get back tot his) but also physiotherapy, homeotherapy, cranio or bowen etc. will help you on this path. Even if the T stays the same (sometimes does, sometimes doesn’t), you are getting rid of negative energy. THE negative energy that keeps you feeling extra shit about your T. I’ve read on this forum multiple times that people tried yoga twice and then quit because it didn’t change the T. < Dude, even if the T stays the same, wouldn’t you like to go from feeling very shit to feeling a bit less shit? Getting in to your body and listening to your body does at least this (if not more).
Also, check out Julian Hill his youtube for good tips!

- Meditation. I always feel less shitty about my T in the morning, so thats the right time for me to sit down and take a moment for myself. To ‘uncloud my brain’. This also works very good to get a more clear perspective on your life and on your goals. Two ways of meditation that I like: sitting on a meditation pillow with legs in lotus and counting to ten very slowly, again and again while looking at some point in the floor. When thoughts begin to enter (which is very good, because that means your brain is going into organising mode) I friendly go back to the counting. It’s also a very awesome way to teach your brain to think about things whitout instantly connecting a emotion to it. Because you get back to the counting. Same position with your eyes closed and focussing on your breath and body also works.

- Write down positive things, if your brain keeps falling back to a negtive thought spiral. Sometimes I even shout ‘UIT’ (OFF) in my brain when my thoughts start to run. Doesn’t always work, but when it does I’m happy.

- Get to know yourself and your reaction on your T. In the morning I usually am okay with no masking (and the T being present) but not in the evening. Get to understand what works and what doesnt. And try to stay flexible in this. Sometimes my masking noises expire and I need to find a new one. Also, DO NOT BE HARD ON YOURSELF. For example I don’t meditate in the evening, because that still lays to much focus on the T. I used to force myself to do that, but that just wasn’t smart. I now sleep with the Tinnitus Therapy app from Sound Oasis which was a good investment (but you can also find good stuff on Spotify).
Some specialist talk about that you need to always mask your T while others say that you need to try to sleep in silence to get used to it. I play the app for around 1 hour and then it turns off while I sleep, that works for me.

- Don't go into a battleground with your T. I spoke to a woman a couple weeks ago that told me with a tired face: 'I NEVER LET IT WIN'. Wow! That sounds very tiresome! I have actually let it win and look at me, I'm not despressed! I actually am learning to be oke with it! This is probably very different for everyone. But sometimes I miss someone also mentioning this option, so here you go.

- Take a happy pill when things really arent working out, but not overdo it. I have 0,25 mg Xanax at home for when I have been worrying multiple days in a row and need to do a whole internship day. Be friendly to yourself! 500mg Valerian sometimes helps me sleep but I stay away from heavy sleep medication. What I got from this forum is that heavy sleep medication in the long run does more harm than good.

- Talk to a professional psychologist that TAKES YOU SERIOUSLY. I have one that gets awfull cluster migraines from time to time and also thought he was going to die for at least 2 years. He knows the dark places and that gives a lot of recognition.

- Don’t talk to much to non professionals about your T. It’s good that they know of it, but a lot of people just can’t image how a sickness is untill they have it. Next to that I don’t like to view myself as a ill person. Just one with a little error.

- DO THINGS THAT YOU LOVE MAN!!! Why on earth live with shitty T AND life a shitty life! I feel like the people that deal with T the best are the people that surround themselves with good stuff. I dediced for example that I didn’t want to do ‘art’ for a while but just draw cats. That got me a awesome childrens book assignment (about a cat) that get’s my mind off T a lot. Next to that I put my thirth year at art school in half and this was the best decision of my LIFE. I also got a internship close by and not at a fancy studio. I would have NEVER made these decisions if I didn’t have the T and this lead me to feel happiness as I have never felt before.

- Last but not least, the habituation tips of Dr. Nagler on this forum are very very helpfull!

So next to having T for 6 months, I have gotten a way fitter and happier body, a new and way more fun career direction and I finally learned how to deal with stress. Even if the T gets worse, my body and my view on life has gotten way better. And I am actually very thankfull for that < and this, is something that you can do aswell! Work on the things you can work on! Learn on the way and be patient. Things never go as you think they go, so work on being flexible!

 

Hey @Pan, congrats on your new life.

It's good to hear it and I would love to be at your stage. I just realized these few things 2 days ago and my mind is going better. I would love doing some sport again (I was a sportive girl before T). I loved running, I tried once and it got my T higher. I now think I should start by some exercises at home maybe would be a good beginning.

I agree with you on one point: T has changed the perspective of my life too, and eventhough I dream of having my old ears again, I now really know what it's important in life and I don't take for granted every moment of it. If I ever could have laughs with a loved one or even a stranger now, I really do appreciate the moment.

In my case, it's not so easy to go out as I have a moderate hyperacusis but life goes on

 

Oh I forgot. Love it. Thinking the same.

 

Thank you for this! I have been 4 months in and fallen into same dark hole two times (not including the awful anxiety after onset), and it feels rather tiresome to keep falling into that and having your logical self to tell you "you'll be okay, just look at the other times you swore you would NEVER be okay". Then your emotional self is crying in a corner and swearing it'd never be okay, that "it's different this time, the sound is changing, it is louder, I can hear it in places I couldn't before etc". I wish I had written down my thoughts last time I had a dip, so I could try to help myself today. But I have asked for a session with a psychology, so we'll see if I get to go to KBT or just trying to talk about it to help change my perspective.
Wish you the best!

 

I really needed to hear this today. My T has turned my career upside down as I can't work anywhere outside anymore because it's reactive. I can only work from home now. So I've been debating of doing something safe and boring or following the one passion I'm still capable of doing. Needless to say, I've been saying "fuck it" a lot and going with my passion since I need something good in my life. I don't wanna completely give in to it and let it take everything away from me. I don't want to be weak, vulnerable and loose everything I love. I'm gonna 'kung-fu grip' onto a couple of things even if its hard. Because even tho the baseline is getting louder, I feel more driven then before T to make something happen.

My baseline has gotten louder as well so I sympathize with all of you. When people ask me if it's getting better, I say yes and no. Its gotten louder, but I've gotten used to it more since day one. I'm 8 months in.

 

Hey do you know the vids of Yoga with Adriene? Thats a nice way to work out at home (she has some weight loss vids aswell, which are a bit more intense)

Moderate hypercausis sounds awfull I've been developing it a little bit aswell the past week (knife and fork during eating or the clicking of a mouse) but I've chosen not to look up info about it and try to take it for what it is. Sometimes things get worse before they get better, that's a good focus I think

 

I wish you the best aswell! Sometimes you need to get a bit of trust in the way your T works before the anxiety goes down. I also thought that would never happen to me, because I'm very sensitive for fear and only one night of the T acting weird could destroy my week. But lately it just doesnt destroy my week anymore. My mind goes 'a this sound sounds like shit' but it doesn't connect a emotion to it anymore. And then I fall asleep and am thankfull for sleeping the next morning. Maybe this is already happening with you! Maybe you already have a example of responding a bit more mild to situations you've earlier freaked out about?

 

You can say it.
It's awful, as today is one of my fears. I don't know what happened beacause I used to go out after the onset of my T. I did have some pains but today it seems it has worsened and I don't undersatnd why. I can do no more activities except having walks in the nature. I want to be joyful and all, but it I'm worrying about my future. You did well not to look for info, cause it seems the more I got information on it the more it has worsened.

 

Yeah same here (about the T getting louder, but the mind getting better)! It's a very strange problem but I'm learning to deal with the strangeness of it (slow step by step). Career wise maybe you should get a coach or someone that can atleast think with you and bounce some ideas around? I've noticed there's always a way around things. All it takes is some creativity. For example: I'm drawing for a childrens book, but I'm doing it on the computer. I got really annoyed from the clicking sound of my mouse today (sounds harder) so I took a bit of toilet paper and put it beneath the buttons. Works! < Thats a easy example ofcourse. But nontheless a better perspective. Things aren't ideal, but there are always multiple ways available if you look good enough

 

Are there things that work for you to make it less bad? Like a good nights rest or maybe an alternative body based therapy with a friendly therapist? Maybe you can shift your thoughts a bit more to that! Worrying (in my experience) makes your body very hypersensitive, so I would advise to get off this forum and do something that distracts you for a bit. Don't be to hard on yourself, like: 'damn it, I keep getting distracted by this problem in my head' but try to turn it into: 'I haven't thought about it for a minute! High five body, baby steps!!'. And hug yourself! Try it! It's awesome!

 

You're so cute!

Thank you! I think one thing that has worked is body massage... lol Yeah I was just looking on the forum about solutions to make H decrease, and have a look on TRT. You're right since yesterday i tell to myself, today, "don't go on the forum do something that distracts you!" But it's hard as I have my thoughts on it since sometimes my pains recall it to me. But I'll do it .
Yesterday was just awesome as I didn't hear my T a lot of times, it was such agreat feeling! I just hope my H will fade soon...
I appreciate your support, you're doing a great job on yourself, you're very brave and that is what we need!

 

Hi!

The reactions I have had when the T has been bad or the times I've hit on a low-dip, is much milder and better than when at onset. I know I won't die (it did feel like it the first week after onset) and I try to keep myself distracted. However, anxiety doesn't need to make sense and I can see myself going into a bad loop of thoughts (like what I have now). It is the same process "fear, self-blame, doubt, hopelessness" and then in the middle of everything, it gets a little better. T seems more quiet and you feel like you can breathe normally again. Knowing that I can be good again, especially considering how bad I felt at onset, gives me hope that I can be okay again. I think that helps a lot in keeping my reactions to T quite mild, even if I sometimes get some breakdowns. I guess it is inevitable, and I try to pick myself up from that. Always feel like I can't habituate even though I have twice now. I guess the fear of not being able to is the worst.

I am happy that you seem to be on a good way in your habituation, you are doing great! Soon life will be back to more or less normal again, I can say that it makes you feel like T almost never happened. Keep doing what you're doing, you're awesome!

 

I also think that breakdowns are inevitable. I've once seen a chart of how weightloss works and it's a bit of a wave like figure that goes up and down and up and down, but slowly does go up. That's also how habituation works I think. You get setbacks, but everytime the setbacks get a little better (or less long).
You know what also worked for me? Reading some books about how fear works. Anxiety mostly makes sence, but in a different way. I see anxiety a bit as a gate keeper, that once let something slip trough and decided that, that will NEVER happen to him again. So every evening, I still get a little bit that 'ready to be scared' feeling, because in the evening I always had the most trouble with my T (still do from time to time). Even if I'm totally okay, the 'fear gate keeper' is on watch (there's a complete scientific story behind that, but that's way longer).

It also sounds like you can use a couple extra distractions! Maybe a new hobby or something that can keep you mind occupied with good stuff? My psych gave me the (very usefull) advise: when people tell you to not thing about a pink elephant, you will think about it. So accept that you have the pink elephant right now (the dark hole thoughts about the T) and try to create another elephant. A purple one, that is bigger (thoughts about good stuff).
What really makes me happy is to go to the city, get a GOOD cappuchino and draw some people. The thought of it already makes me happy!
Good luck to you! Work on the things you can work on and be kind to yourself!

 

That happened to me earlier today. I didn't think about Mr T for about an hour and was so happy when I realized that.

So true about taking care of your body. -- I can almost offset the misery when I am exercising and eating well.

Baby steps. -- Tomorrow more focus on my healthier diet (no cheating!)