Hi my name is Paula 55yts old. Tinnitus started 3 yrs ago. ner stops no break at all also pulsitile which is a big worry. Under investigation at the hospital. Awaiting scan and tests to determine cause. Some days are very hard. Just want peace. The noise changes pitch and loudness constantly sleeping is a struggle just wish it would stop. Anyone give me helpful advice on medication they have tried? I had a massage yesterday and it was the lowest it’s ever been last night but it’s back this morning. I’m can’t cope with it 🥺
hi new here: Hi my name is Paula 55yts old... - Tinnitus UK
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53 Replies
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Hiya - I have pulsatile tinnitus too since last September. I am going through the routine of various scans and seeing ENT people and also audiovestibular tests. I have no cure yet (and maybe never will) but I think knowledge is helpful so reading what people here are going through is helpful. I know many clinicians would say you need to learn to 'habituate' to tinnitus but for me when Tinnitus is pulsatile that is very hard. Fingers crossed in due course we will both find some things that will help (ir not cure) us x
• in reply toSueX
Hi sue nice to meet you. Thanks for replying. Frustrating isn’t it? Have you had your tests yet? I think we are in the same path. What does habituate it mean? I’ve not got that far yet?
• in reply toSueX
Forgot to mention I’m also deaf too not because of the tinnitus so the 2 together is a nightmare
I’m curious to know what tests you are getting for the pulsatile tinnitus. I’ve had it for a few years and no GP or ENT or neurologist is bothered. (I am/or was worried it could mean blocked arteries but can’t get anyone to look into it) thanks
• in reply toHoliday12345
Well that’s needs investigations if you have blocked arteries that opens a can of worms. I’m having a Ct scan and an Auditory brain stem test. Hopefull it will show the reasons for it and also for my deafness
• in reply to
If you have pulsitile tinnnitus it should be left uninvestihated could be something underlying
Holiday12345• in reply to
Yes I had thought so particularly as it’s one sided. I guess higher blood pressure could be a cause too? Pulsatile tinnitus seems to be taken more seriously in the US rather than in the UK. Good luck for the tests, I’m away to look up the Auditory brain stem test many thanks
• in reply toHoliday12345
Thanks
I've had an MRI scan of the IAMs (ears essentially) without contrast, and then an MRI with contrast. I've also had a CT scan with contrast of the carotid artery. I've also had a doppler scan of the carotid artery. But...I'm very claustraphobic so my MRI scans were done on an 'open' machine and something has potentially showed up. So...last Friday and tomorrow (Monday) I am having further MRIs on a 'closed' machine which gives better images. The Friday set of images were of the head and the ones tomorrow will be of the neck. That's a lot of imaging and I am cross with myself that I didn't opt to go in a 'closed' MRI machine in the first place!
Hope all goes well tomorrow! I understand the hesitancy to get mri I’m not keen on them either but the newer open bore ones are much better and I find if they play the radio through the ear phones it helps. Thank you for your reply of tests done. Best of luck
Yes if it's 'wide bore' but closed it's broadly ok (from a claustraphobia point of view). Although you can't move your head becaue of the coil helmet and the padding to protect your ears you can see the end of the tube and also there's a mirror on the coil helmet allowing you to see out into the room.
Yeah it’s not pleasant, I have to shut my eyes before they put the bed back into the machine and not open them til I’m finished or I couldn’t stay in there
What made me laugh in the scanner I was in on Friday was that there was a mirror on the helmet/coil that they put on your head so you can see out into the room. You could see the far wall. But....do you think they had put up a TV on that wall, or some posters to look at? No, it was a fire exit! I have never before studied the instructions on a fire exit quite so acutely!! But a 3T scanner is usually faster so I guess mostly there's no point if you are only in there 30 mins tops. I was having several different scans done though so it was longer. In fact it was supposed to be 1 1/2 hours....! To do head and neck but I knew I couldn't do that. So it was head last Friday and neck today! I'll know that fire exit so well at the end of today....
Hiya - it can be a long road to get to see a clinician that puts any time into trying to get to the bottom of what's going on! Habituation means that you slowly start to adjust to having the tinnitus and are less alarmed by it. I haven't habituated yet but many people on here have been quite successful so it's useful to read people's experiences.
• in reply toSueX
Omg are you serious? Shocking isn’t it that there is no treatment available for it. When mine is at its loudest it’s very distracting and debilitating. I had acupuncture yesterday and massage was very quiet last night first time in weeks. Can’t afford that every five mins though
yes I had a massage (to calm me the day before my MRI this week). But I can't tell you if the massage worked or not as I came out to the car park and found that someone had hit my car...!! Like all of us here I've done a fair bit of research and I wouldn't personally say there is always no treatment. It depends on the cause. By my understanding for pulsatile tinnitus there is sometimes a cause. That's why I've done the rounds of scans. I'm claustraphobic so I opted for 2 MRI scans in an open machine. There was the possiblity that something was seen on those scans but the resolution wasn't very good. So that's why I've opted to have scans on the 'closed' scanner. I had one yesterday and one will be Monday. I will then have those scans interpreted by a neuro radiologist and we'll take it from there. I think it's difficult because the cause for many cases of tinnitus could be simply unkown (and then it's a case of learning techniques to help live with it). But the cause could be neurological (ie tumour although only in a small number of cases) so that would mean seeing a neurologist. Of course a cause could be due to several ear conditions, so that's the domain of ENT doctors. And a small number of cases could be due to damage to the neck or the spine, so that could be a rheumatologist! I am keeping myself sane while having this terible problem by telling myself that I am working slowly through the possible list of causes and as each day goes by I get a little more information. Sorry to hear it's so difficult for you.
• in reply toSueX
Your brave I refused the mri scanner too claustrophobic waiting a ct scan. Yes it’s because it’s pulsitile that’s the worry isn’t it. Could be a number of reasons. I noticed you mentioned the neck. I’ve got a diagnosed trapped nerve in the neck from few years ago I wonder if that could have any bearing in it. Might ask at the hospital going back in a few weeks
cheapo• in reply to
Could't help noticing that WIKI has a section on pulsatile tinnitus
en.wikipedia.org/wiki/Tinni...
Lots of links to look at within that section, and seems pretty complicated, but hey, at least they have this stuff.
I got pulsatile tinnitus out of the blue in Sept. I said absolutely 'no way' to being in a closed scanner. So I then had an open MRI with no contrast and that wasn't good enough, so I had an open MRI with contrast AND also a CT with contrast. Now I am left with results from those 3 scans. The first MRI showed potentially something. So when faced with the information that one of the scans showed potentially 'something' but on an open MRI the resolution wasn't good enough...that really was all the motivation I needed to get myself into a conventional closed scanner. But ....on the NHS there was not a closed scanned that was a 'wide bore' one. Maybe there are somewhere in the country but not near me, so I have opted to pay to have the closed scan on the 'wide bore' scanner. In hindsight as yesterday was my 4th scan and Monday will be my 5th I wish I had just gone straight for the closed scan option at the start. I have wasted a lot of time. As I say on the 'open bore' closed machine it was not a bad experience at all. I was due to have head and neck yesterday but was told that would be 1 1/2 hours in the scanner. So I've opted to have it split across 2 sessions. Re the neck, there is some research that shows some potential link between cervical spine damage and tinnitus. This is why I have opted for an MRI of neck and head.
• in reply toSueX
Sounds like a right nightmare and very long winded. What did they find in your scan?
Hi are you in the Uk? I’m finding there’s not a lot of help over here especially where I live and the waiting lists are crazy, like 5months to even see ENT x
Yes I'm in the UK. I started off being very patient and took the route the GP offered but that amount to a visit to a clinician working in the community who just gave me a set of leaflets. I worked very hard at getting to see an ENT consultant on the NHS and I am getting there but slowly. Most of the scans I've had done are those that people have told me I need (I work in medical areas) and I've used my insurance for many things. I want to use the NHS but I am in a lot of distress and it's hard to be patient.
The language was very tecnical so it took me ages to work it out. But it amounted to a possible area near the IAMs (internal auditory meatus) (ears!) which could (stressed) have been a lesion (lump). In other words the scan couldn't categorically rule OUT an accoustic neuroma. There was simply not enough detail on the scan. So that was scary and I was kicking myself for going and having a scan which was not good enough ! It then took a good few weeks to organise the scan of yesterday and monday. So if I could turn the clocks back I would have gone for the best scan possible first time around and just taken all the advise I could on how to deal with that!
• in reply toSueX
That’s not your fault is it don’t blame yourself. It’s very frustrating trying to get to the bottom of it especially with waiting times and the nhs ect. Fortunately my mum been through the same ordeal so she’s been advising me on the scans doesn’t make the worry any easier though. How much is a private scan? Just had a Quick Look you can have them standing and everything
SueX• in reply to
Yes but the 'upright' or the 'open' don't give the detail of images that they need. Many times they will be okay but in my case they potentially showed something which could only be ruled out or in by a conventional scan.
• in reply toSueX
Nightmare . It was nice to talk to you thank you so much
Good luck!
• in reply toSueX
And you x Just remembered they told me when I refused the scan at the hosp to go to my gp and ask for sedation so you can take it before the scan. Don’t know if that would be of any help to you
Yeah, that was helpful to know you can take sedation but then you have to have someone take you home and in our case my other half was collecting lots of children so I had to go 'cold turkey'. But I did it!
• in reply toSueX
No worries
As far as I'm aware, pulsatile is literally you hearing your blood moving near the nerves in your ears. So as you mentioned that a massage reduced your T, that's a really good indication that something can help you get over it. And although I'm no expert, it seems that perhaps some more physio could reduce your tinnitus in a more permanent way. So have a chat with a physiologist and with ENT about that possibility.
Wishing you the best.
• in reply tocheapo
Thanks you so much for your positivity. I will do thank you. I’ve paid private for this though no help with massage ect on the nhs but I will definitely mention it
Quite a young individual here but let me share you my experience. 25 years old and I've been deaf my whole life, and you'd think all I'd hear without my hearing aids is silence but it's not. Irony. Tinnitus is something we will all struggle with one point of our life.
Now I've got a close relationship with audiologists of course due to being deaf so I will share what I know.
Tinnitus is stress induced, your brain is overcompensating what you feel and hear and sometimes it will create noises based on what you've heard throughout the day etc. No medication will fix things and definitely no cure. It's about micromanaging your mental health and using other things as a distraction to help.
For an example, and it's a privilege for me but I'm sure you can compensate in your own way. With my hearing aids ( Cochlear Implants) I have Bluetooth in my head so I can always stay connected. So if my tinnitus starts to be overstimulating, I will put on music, a podcast or even some rain sounds whatever it may be. This distracts your brain and gives a focus point.
You mentioned after a massage you reaped some better sleep. Hopefully that'll sort of back up my point with stress, after a massage you were at a more relaxed state and it was better for a little while. With you waking up your mind will then complicate itself by worrying about your worries, work etc you get the point.
Maybe one day we'll get a cure but I've spent all my youth years begging for answers but finding there's no solutions.
Things you can check that could make tinnitus worse is fluid around your ears, that can heighten the severity in some cases.
Hope this helps, I'm not going to tell you what you should do or not, we'll all find out own ways to deal with it, I just hope you don't spend unnecessary time on negatives and hopefully find your peace.
Take care x
• in reply toJack2316
Thanks for your reply. I’m also deaf not totally. The tinnitus is very frustrating and I think the more stressed I am the worse it gets and I always try to focus on being calm. I use ld to go to the gym wasn’t a problem then so aiming to get to some exercise see if it helps although struggling with my mood an motivation. I just worry that I have something underlying in the balrain which is why I took the decision to have it investigated. It is a case of just living with it and trying to manage it. Thanks for your words very helpful
Jack2316• in reply to
Just be wary that doctors can be misleading, always ask for second opinions.
Wish you the best, just find something that keeps you distracted, love music and find a podcast is my best advice
• in reply toJack2316
Ok I will thanks . I also note that I’ve been to the hospital a couple of times and still not yet seen the consultant joke isn’t it. The only answer I’ve been given so far is I will have to get earring aids
Jack2316• in reply to
Yeah that's the reality with anything these days. It took them 5 years to diagnose me with Severe Rheumatoid Arthritis.
When you say you have hearing problems, it might be worth getting seen by an Audiologist, not only for hearing aids, but to discuss tinnitus. The more you address it and discover other people dealing with same symptoms it will relax your state of mind as you're reminded you're not alone and not going crazy.
• in reply toJack2316
Yes it’s audiology I’m going too. Got a scan coming and a brain stem test hopefully tell me where it’s coming from terrible isn’t it. My mum is deaf too since she was 11 also has tinnitus shocking there is no help
Jack2316• in reply to
Yeah the guy I met with studied Tinnitus for over 30 years and no one came close to figuring out how to stop it. Only remedies or ways to calm it.
Maybe one day.
• in reply toJack2316
Ok thank you . Think with me it’s just because it’s pulsitile that’s the worry in case something pressing or growing in there. My tinnitus never stops either no break from it just a variety of noises and sounds
Please try Shokz headphones which play music from your phone through your cheekbones! This helps me greatly as you can still hear other sounds, traffic, t.v. and hear other people while you cannot do this with conventional ones clamped over your ears. This masks the Pulsatile tinnitus that I have had for 4 years and keeps me sane. Best Wishes!
H! You’ll habituate one day! I’ve been flighting with my “darling” T for almost 18 years.
Isuggest you try some special exercises for cervical spondilosis. Since you say that in the morning it’s better. Aș în my case.
From time to time I take Mg and Complex B.
You are younger than me, so keep on living normally. Ignore it. You may try yoga or simmimg or walking. There is life even with T.
Good health!
• in reply toVic24
Hi x sorry to hear your struggles. Some days are easier to manage than others but just lately it’s that loud it’s unbearable. Do you ever suffer with head tension jaw tension ect
Hi Pazzy, I totally empathize with you I too have pulsatile tinnitus for 3 years. I've had just about every test that's available with no cause found. I'm in the US & have been to specialists who deal in PT. They didn't ID a cause for me, but most PT cases can be cured, about 80% - 90%. Have a look at pennmedicine.org/for-patien... and radiology.ucsf.edu/pulsatil... .
Maybe these sites can give you avenues to pursue in UK.
I'm now taking an anti-anxiety medication. It's a selective serotonin re-uptake inhibitor (SSRI]. It doesn't alleviate the PT, but it has enabled me to tolerate it better & I'm sleeping a lot better. This is a big help. I'd suggest you talk to your doctor about it. And see if the side effects are worth giving it a try.
I wish you very much luck. Don't lose hope. There is a cure for many who have PT.
CarolA
• in reply toPTtoolong
Hi there sorry to hear your suffering too 😩 I’ve been considering an antidepressant to be honest seems to be my only option as I find it hard to relax with the noise droning. I will have a look at that link you’ve sent thanks. Can I just ask which tablet you take?
crazy isn’t it I also have crazy noises when I move my eyes
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