Some hope!

[Hopesforthefuture]

LONG POST!

One of the things to bear in mind with Tinnitus posts, threads and forums, as many have mentioned, is that they turn into an echo chamber of devastation. People searching for answers in desperation on what to some can be the worst time of their life. We search and search for answers to help get rid of this awful condition for hours and hours and just read many posts about ‘that didn’t help me’ and ‘mine is worse than ever’. What we need to remember is people who have learnt to live with Tinnitus, most likely aren’t posting on these forums any more as its just not a concern or thought for them. So here I am. Trying to be one of those people who has come back to spread a little light; even though I’m not ‘cured’, I am living my life with Tinnitus.

A little background - my Tinnitus started in September 2023. I believe it started from a combination of a stressful traumatic time of my life and starting on mental health medication Citalopram [which I have been on before] at the same time. I have never had Tinnitus, any sort of ear or hearing issues, pressure issues, or loud noise damage previously for a bit more context.

My Tinnitus was multi tonal at the same time and also had another high pitch that changed like tuning into a radio. I would also have a terrible low pitched buzz which was horrendous which would also affect what I could hear [first noticed when thinking ‘this sound sounds awful! No bass!’ it wasn’t the song and instead not hearing high and low pitches.] I couldn’t ignore it. It was mainly located in my left ear, but could and did go to both - I would say daily was a 7 out of 10. The low pitched humming buzz noise was right in the middle of my brain and awful - an 8.5/9 out of 10 on these ‘bad ear days’ as I would refer to them as were about 24-48 hours long, and would happen twice a week.

When mine started, it was like a horrific cursed obsession. A word vomit. Its all I could think about, focus on, talk about. It is hard not to to be honest, when it is going on in your brain. I would sit there with my headphones on loud, trying to block out the world outside and the world inside my brain. Sat on the sofa or in bed with a blanket on. I bought earplugs to see if reducing outside noises would help. I went to the Audiologist multiple time. The doctors.

I started writing a Tinnitus diary after seeing it online to try and find the root cause. I would type for ages and ages and all my focus was on what can I do? Why me? How will I live?

I would search online for hours about how to get rid of Tinnitus. Books. Youtube videos. Blogs. Forums. You name it.

I ended up buying supplements. Ginko [which I couldnt take due to my Citalopram]. Magnesium. Cutting out caffeine. [I don’t drink alcohol, smoke or drink coffee anyway, but I’m sure that would’ve gone too]. Kalms daily. Rescue remedy. Bought CBD oil but never took it.

I couldn’t sleep and ended up with insomnia and ended up getting sleeping tablets (the antihistamine version) to help me sleep. I would have to keep my headphones on all night, and had to listen to loud music to drown it out and wait till I was so exhausted I would fall asleep.

I was miserable. I cancelled plans. It affected my work life. My home life. My health. My mental health.

And then it got worse. In a hope that my Citalopram was causing it, I requested to change to another medication. And that’s where sertraline came along. Big mistake. Headaches. Chills on one side of my head. Pressue in my face. Pressure in my ears. Pulsating ears. Pains in my head. Tingles. Numbness. Combined with the noises. Awful. Awful. Awful. BIG MISTAKE. HUGE.

SO WHAT NOW? 4 MONTHS ON.

I would say my daily Tinnitus is maybe a 3 or a 4. I still have a constant higher pitched buzzy whine aswell as the radio tuning high pitched noise which is quieter. It doesn’t really fluctuate in terms of volume any more and I haven’t had a ‘bad ear day’ or the low pitched central head buzz flare up since the beginning of December.

I stopped the Sertraline, and am back on the Citalopram. All the additional symptoms and the low pitched buzz have gone. The Citalopram helps me deal with my general life anxieties better and thus probably doesn’t give me flare ups due to stress.

I still don’t like being in silence as it does make my tinnitus really noticeable. If I am, I like to hum, sing, whistle or make some noise, or put on some Music in the background. One thing I have found is that you aren’t actually that often in silence - even when you are outside, there is other things to focus on like birds singing, leaves rustling, the sound of your feet - only when you are lying in bed or sitting in a still room is there ‘silence’. Distract yourself from silence and mask it. This advice works.

I sleep for 8 hours sometimes 9 a night [which I can see on my smart watch], waking up maybe once or twice and then go back to sleep [which was the same as pre T] and I don’t wake up in a “OMG its still there there? What noises do I have today? Is it getting worse? When will it end?” panic cycle I was in before. I sleep every night with a dehumidifier on, or rainforest noises - which I find very peaceful and relaxing. AGAIN - Distract yourself from silence and mask it. This. Advice. Works.

Whether it was just time and habituation, or the actual supplement, I believe that Magnesium did help with my sleep which in turn may have helped the Tinnitus. I still take magnesium, and also take some multivitamins and omega 3 for my general health and wellbeing in the hopes that that will in turn make me healthier and help me be well.

I most definitely do not spend time searching online or writing a Tinnitus journal or watching videos etc. Get what you need to help you, but focus on acceptance instead of a solution.

WHAT ELSE HELPED ME…

Time. Time I think has been a great healer - the buzz word of “Tinnitus habituation”. All of the literature about the cycles of tinnitus and habituation in my case have been bang on. Look at them, and realise at some point you will get there. If you’d have told me 3 months ago there would be periods I didn’t notice it, I would think you were having me on!

Find the root cause without obsessing. If it is blocked wax, get it suctioned. If it is sinus related, get antihistamine etc. etc. With mine, dealing with the stress and anxiety and my reaction to the Tinnitus, not trying to deal with the actual Tinnitus is probably what has helped me acclimatise.

Therapy. For me and talking about acceptance, distraction techniques, ‘active listening’, CBT. Its all useful stuff, in many aspects of your life, not just Tinnitus.

Distraction. Fill your life with other things. Joyous things. If it’s there to stay, you need to find a way to live your life with it, even if thats hard. Your life isn’t over.

Gratitude. I know I am lucky compared to some that comparative to when mine started, it is better so easier to manage day to day. Considering I know how my T bad it can be, I am almost thankful for my daily tinnitus. I am thankful that ‘this it is’. I also compare myself to other people and think that whilst this condition isn’t nice, there are many things I can still do that others can’t. I struggle to look for small positives in things as a massive self critic and after being gifted a gratitude journal, I fill that in daily to think about how lucky I am and what I can and do achieve.

Writing. I do still write in a journal type thing, but that is more to do with daily trials and tribulations to again manage my reactions to stress. Sometimes I do write in there about the Tinnitus but few and far between. Its just kind of there now.

THE FUTURE.

I would like to now learn to sit the sounds a bit more - and hope that one day I will learn to be in my version of the noisy Tinnitus ‘silence’ again and live without masking at all - one step at a time!

I am hoping by writing this that someone where I was 2 months ago might see it and find some light where currently there is darkness.

A motto I live by as someone with anxiety is “This too shall pass” and every time I have a bad day, I remind myself of this. Tomorrow is another day, and I will be here for that one too.

[Hopesforthefuture]

For further context, I am a 30 year old female and generally in good health!

[Sonnybee]

Excellent posting. I think many of the things you describe, and medications, most of us have been there too. Time, and our response to our tinnitus are the two biggest factors in dealing with it. I would never say I have habituated, as T has a habit of sometimes biting back (peaks), but its our response to it when it does is the key. Thats CBT in a nutshell really. Thanks for the positivity and hopefully others will take heart.

[Bridiecat]

I absolutely 100% agree with you, in all aspects, and couldn’t explain it any better. Mine started some years ago, was slow progressive low level and intermittent but has steadily increased to a consistent constant hissing, which has a volume control of 7/8 on poor days to 3/4 on good days. It is directly related to my now diagnosed high frequency hearing loss, for which I now have hearing aids. By ACCEPTING it’s existence I do not FOCUS on it anymore, when I was working full time, I was always distracted by ambient sounds but since part timing, I make sure that I am occupied. However when I am not, I ACCEPT its annoying, intrusive nature and place at times in my life, that it is all I have to negatively live alongside and I am so very very grateful to all those things that bring me positivity and allow me to sit gently with it.

For all of you who are over focusing on it STOP. Re-focus, learn to live with it instead of fighting it.

Take each day as unique and different from the day before even if you perceive that it isn’t.

[grauntieannie]

Thank you.

[Happyrosie]

thank you Hopes, grauntie, bridie, sonny. You are not only RIGHT but INSPIRING.

[Ray200]

"Bought CBD oil but never took it."

And me! (Well, gummies they call the solid state preparation). Still around at my place somewhere. Waiting for some encouraging review related to T which will probably never come.

Can you take Ginkgo occasionally? I've had success with it. Not tablets every day, 365, but every third day 3 x 30mg for some relief the following day. I have the idea that for it to work, the brain must not become accustomed to it. So the gap should clear my system for the next dose. A click on my username will show you a small number of posts about my trials.

[RONf]

Thank you for a wonderful, most reflective and positive post. I too have been on a similar journey and now, currently, need no distractions. I take care not to 'worsen' my tinnitus by avoiding loud noise of any description and excess in consumption of possible ototoxic medication/alcohol/caffeine etc I know my sound distractions are still available - and keep them on hand to reassure me that I have a remedy for any unwanted 'spikes'. I truly wish you well for the future.

[Destructor]

I'm not at that point yet but I know what you mean by trying to focus on other things. My hearing is very good which is supposed to help as I can hear other background sounds. I am trying noise cancelling earphones now after actively trying not to block my ears at all - mainly just to enjoy music and keeping sound low (reducing bass and anything that may set off my deep PT noise) and trying to keep away from any loud or deep noises or anything that annoys me.

I listen to white noise at night which sometimes helps and I try to picture a waterfall or rain like in a storm to try and make my brain think it's normal although I still have some nights where I don't get any sleep which definitely makes things worse. Still often take x1 5-HTP tablet (as recommended by a member on here).

I have high acid and occasionally get reflux so I cut out alcohol (although before only drank maybe 2 times a year if that) and cut out caffeine - I have chamomile tea daily and can occasionally have a coffee without setting things off. I don't think the tea helps at all but I quite like the taste. Tetley chamomile is good, as is elderflower & chamomile from Westcountry teas in case anyone is interested.