hi new here

[Pazzypants]

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 🥺

[SueX]

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

[Pazzypants in reply to SueX]

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?

[Pazzypants in reply to SueX]

Forgot to mention I’m also deaf too not because of the tinnitus so the 2 together is a nightmare

[SueX]

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.

[Pazzypants in reply to SueX]

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

[SueX]

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.

[Pazzypants in reply to SueX]

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

[SueX]

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.

[Pazzypants in reply to SueX]

Sounds like a right nightmare and very long winded. What did they find in your scan?

[SueX]

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!

[Pazzypants in reply to SueX]

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 Pazzypants]

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.

[Pazzypants in reply to SueX]

Nightmare . It was nice to talk to you thank you so much

[SueX]

Good luck!

[Pazzypants in reply to SueX]

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

[SueX]

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!

[Pazzypants in reply to SueX]

No worries