Help: Hi just been told I have pulsatile... - Tinnitus UK

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Shirleymaidment12345 profile image

Hi just been told I have pulsatile tinnitus, it is driving me crazy !!! Has been constant now for three month , just had a mri scan today but from ready everyone’s staments it doesn’t mean I will find a cause .. don’t know if I can live with this with out any hope 😩

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Shirleymaidment12345 profile image
Shirleymaidment12345
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17 Replies
rjb112 profile image
rjb112

Hi. I've had tinnitus for about one year. it is very loud, and constant.

i went to the ENT doctor, who could not find a cause, or cure. At this point I do not believe this very loud tinnitus is likely to go away. Hearing aids did not improve the tinnitus, even though audiology thought they might help a lot.

You wrote, "don’t know if I can live with this with out any hope."

Even though I don't really have any hope that the very loud tinnitus will go away, I'm beginning to think that we can learn to not be so distressed by it. For example, emotional/psychological stress makes our reaction to it worse. Calmness and poise makes our reaction to it less. I'm thinking that this is the way forward. The stimulus may never change, but our response to it can change. Right this moment I'm hearing roaring loud tinnitus in both ears, but I'm sitting in a chair fairly relaxed, somewhat accepting of the whole situation.

How does this sit with you?

Shirleymaidment12345 profile image
Shirleymaidment12345 in reply to rjb112

Hi , I guess we do learn to accept and live with things in the long term , with me at the moment it’s not so much the noise it’s how it makes me feel , light headed and like I’ve had a sleeping tablet when I wake up, Takes sometime to feel ok.. once I’m up and doing things I have learnt to ignor it , but my head feels like it’s been squeezed most of the time 😩😩😩

rjb112 profile image
rjb112 in reply to Shirleymaidment12345

I see, thanks for explaining that. Sorry you are going thru this, and wishing you the very best. Please let me know if you find any resolution.

Rabido profile image
Rabido

Hey - I had pulsatile tinnitus for a month last year. It started after I did a HIIT exercise session and was the most distressing thing I've ever had!! As soon as I googled why I could hear my heartbeat in my ear I became anxious, which I'm sure contributed to making it worse. I had an MRI, ECG and echocardiogram but they didn't bring anything up. It eventually eased off when I was on a long weekend away (backing up the anxiety theory?) and I had nothing between May and November. However, in November I got a cold and now I have constant tinnitus (not pulsatile). Again, that has eased a lot as I've got used to it and become less anxious. I've been having CBT and counselling for unrelated issues but they have definitely helped in terms of distraction techniques and mindfulness/relaxation. I definitely recommend body scan meditation videos on YouTube for the nights when you struggle to sleep - I rarely make it halfway through them.

Shirleymaidment12345 profile image
Shirleymaidment12345 in reply to Rabido

That’s funny cause when I went for a hearing test he did say take a holiday and relax.. in September I had a very stressful time but now don’t feel like this anymore and it started in November.. could be a delayed reaction I guess , the body is a strange thing .

SixtySeconds profile image
SixtySeconds

I've recently read that iron/zinc supplements can help with pulsatile tinnitus. Worth a try, especially as you're waking up feeling lightheaded.

soul64 profile image
soul64

Hang in there, for me the firsts few months were the worst, you will get used to it and start to feel more positive. Life can and does continue and it will become easier.

Owley profile image
Owley

Hi Shirley

I have had since October.

Scans clear. They tell me i have to live with it too. I get some days easier than others. Do you? Or is it the same? My pulsing has now turn to buzzing which to me feels worse. Its as if the inside of my ear is vibrating. Saturday was very bad got to sleep at 5am yesterday much better, slept well but today not so good again. Its the sleep deprivation that geys me down. I have put a fan in my room to mask it but not great in this freezing weather.

Owley

Shirleymaidment12345 profile image
Shirleymaidment12345 in reply to Owley

Funnily enough it doesn’t disturb my sleep ( menopause does this ) but it is constant , but in the day I can distract myself , until I stop and there it is again.. I’m worse 1st thing as it makes me feel

Out of sorts and my head feels so heavy 😩😩

Owley profile image
Owley

I hope you get some answers. Google julian cowland hill and watch his video on pulsatile tinnitus. It brings hope. Good luck

Shirleymaidment12345 profile image
Shirleymaidment12345 in reply to Owley

Will do .. just had a quick look now , but will look properly tonight , thanks

Owley profile image
Owley

Sorry Julian cowan hill

Jimmuck profile image
Jimmuck

Hi Shirley,

Your story sounds so familiar and I am sure everyone on here will identify with that first rush of panic you felt. However, it does get better as time goes on and a lot of that comes from finding ways to keep yourself calm and relaxed. When I first got it, I was absolutely panic stricken and went into full fight or flight mode as it's called. I tried everything I could to sort it but I gradually discovered there is no easy fix out there. Once you get your head round it and accept it, you will gradually habituate to the sounds you hear and in time they will fade. We all have different coping mechanisms and mine include playing musical instruments, hot steaming baths, getting out walking and getting involved in hobbies like painting and photography, which all give the brain something to focus on instead of the noise in your head! I hope you find some peace soon.

Harleydog profile image
Harleydog

Hi. I can understand how you feel. I’ve had tinnitus for 25 years and when I first got it it nearly sent me over the edge. I was put on antidepressants which did help when they kicked in. I was a zombie didn’t want to do anything, couldn’t eat, but gradually I was able to put it in the background and get on with my life. Make sure you keep yourself busy and relaxed. Tinnitus thrives on anxiety so try Tom relax,easier said than done , but you will get used to it . Good luck

Wringing1212 profile image
Wringing1212

Harley dogs right,

You will build coping skills naturally. Change your way of life and thinking to avoid stress. It triggers spikes every time. I've been completely debilitated at times and bounce back to my regular state of T which I've learned to manage. The best medicine is to defy it by not flattering it with attention.

Shirleymaidment12345 profile image
Shirleymaidment12345 in reply to Wringing1212

This is a great way of thinking , does this mean I won’t have it continually ?? Cause at the moment it’s been 3 month straight 😩

Ruud1boy profile image
Ruud1boy

It might fade away, it might stick forever - only time will tell unfortunately. However, you can influence it by following some of the excellent advice in the posts above.

Unfortunately, as you can see, there are people who've had for 3yrs straight - 10yrs, 20yrs, even more. Celtic CJ (can't remember his name) has had it for 60+yrs!!!

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