Coming to terms with tinnitus

[PTNewbie]

I’ve had pulsatile tinnitus for about 18 months now. At first it was quite quiet and intermittent. Then in the last 6-12 months it became louder and permanent. No escaping it.

I went to ENT had audiology referral / tests (no issues) and CT with contrast in July. I’ve only just got my full result on CT today. All clear nothing abnormal.

While I’m obviously relieved it’s nothing sinister I’m also left feeling incredibly low with being told I just need to learn to live with it. Which I was aware could be the case. While I didn’t want anything sinister on my CT I was hoping for an obvious cause to be found that could treated to make it go away.

Now I’m here trying to envisage living the rest of my life with the inescapable and at times unbearably loud whoosh whoosh of my own heartbeat in my ear.

I’ve used Oto and various other methods with some success in recent months. But I feel absolutely gutted that this is it now. I’m crying and I’m so exhausted by this. Tomorrow will be a new day of course and I suppose the first day of the rest of my life knowing there’s nothing much I can do.

Any words of advice, wisdom or support much needed right now, it’s a lonely place living with tinnitus (as I know people here will relate to) x

[Karlos99]

hi there. Sorry to hear you’re going through such a tough time. There’s not much anybody can say so heal you but you’re definitely not alone. The brain does adapt and things will get easier for you. My tinnitus was very mild to start off with and then it went chronic about 20 months ago. Three different noises which change with neck and jaw movements. I didn’t think I’d be able to go on but it does get easier. You will eventually come to accept the new challenges. Obviously it’s very hard and you feel so alone but the brain is a remarkable think and will relearn to deal with the sounds. Good luck.

[PTNewbie in reply to Karlos99]

Thank you it’s comforting to know there’s other people who experience this and understand. Tomorrow’s a new day. I’ve referred myself in to some counselling too as I think I’m overwhelmed in general. Thanks for taking a moment to reach out x

[doglover1973]

Hi PTN. Sorry you're feeling so low. It's very natural to feel the way you do at this stage. When you've been told there's nothing anyone can do. The good news is things do get better . The brain is a remarkable thing as Karlos99 says. I've come to terms with very loud T over the last three years. Just take one day at a time, one hour at a time if need be. There's light at the end of the tunnel.

[PTNewbie in reply to doglover1973]

Thank you, means a lot. I’m exploring folate deficiency and supplements so I’m not quite giving up. It just really got to me that this is it now, my lot. I know it’ll get better I’m up and down with it still though x

[ClareP5]

My advice for pulsatille tinnitus is to read NHS website. I had it and GP thought it was funny🙈 luckily my sister researched and we discovered B12 - I self inject B12 every other day and it’s v much background now. According to NHS website there are only a few causes of this type of tinnitus

[PTNewbie in reply to ClareP5]

Thanks useful to hear others experiences m. I’ve researched PT a huge amount. I did look in to B12 and had bloods but my levels are normal. It’s B9 I was deficient in (folate). I’ve requested bloods again and ordered some more supplements. B9 is on that same section of the NHS website and also has tinnitus and a number of other symptoms I experience so I’m pretty sure related. How long did it take for your tinnitus go away / reduce? X

[ClareP5 in reply to PTNewbie]

It was quick - I took loads! 3 patches of 5000mxg per day plus sublingual c10kmcg. My bloods were all within range. It’s worth a go. Just in case.

[PTNewbie in reply to ClareP5]

I’ll definitely explore x

[dutyhog]

If it’s any help I’ve had PT for decades, and after not very long it became that most of the time I don’t notice it. It’s masked by much of everyday noisy life, and only audible at quiet times, like now as I write. But I regard it as a part of me to be compassionate to, and not be bothered by

Some nights I do notice it when it’s showing me that my pulse is irregular. Sitting up or walking round for a while stops that - it’s connected to age-related heart valve leaking. Once in a while if I can’t sleep because of some worry or other I play a sound into that ear’s hearing aid (by Bluetooth from phone) to promote calmness plus stop being aware of the PT, and soon fall asleep

So I suggest you try all of some of what you find here, but mainly just wait for it to become less prominent, as it will

[PTNewbie in reply to dutyhog]

Thank you, that does help. How long do you think it was before it became less noticeable for you?

[dutyhog]

I can’t remember as it was so long ago. I think it came on gradually from about 30 years ago, in the right ear only, adding to the noise-caused steady tone tinnitus in both ears that I’ve had since about 1960, and had got well used to. When I also got enough hearing loss to need aids in 2000 I mentioned the PT and they sent me for an MRI scan, which didn’t show anything pathological. It hadn’t been bothering me, being well used to it by then.

I’m sorry that I can’t tell you of a cure, just that when you accept it’s just a nuisance rather than a serious disability it’s easier to hardly notice it most of the time.

[1Dar]

Hi … I’m sorry to hear you are having so much trouble , it’s an awful thing to have and I just hope one day someone will come up with something. I ve had tinnitus for 7 years now, it happened when I had a grommet put in my ear. I had a grommet put in and out of my ear twice, a bone removed from my ear and I’m now onto my second cochlear implant. It’s been a horrible 7 years of pain and disappointment. I still have raging tinnitus but try to push through as hard as I can. Try and get the strength from somewhere …I keep saying to myself you aren’t going to beat me! It’s a lonely place I think my friends are getting very sick of me! I really hope you can get on top of it! Good luck and message me any time!

[PTNewbie in reply to 1Dar]

Thank you seems like you’re awake the same as me too! Yes this is what I struggle with not really having anyone to talk to about it, because unless you have it you just cannot understand. I find this forum and people like you who take the time to reach out so helpful and supportive. I’ll also lend an ear (no pun intended) if you ever want to message too! Take care, we can overcome this!