Pulsatile Tinnitus Advice

[Ano]

Hi there,

see here for the back story: https://www.tinnitustalk.com/threads/hearing-loss-and-tinnitus.4207/#post-40596

After that, I'm pretty nervous and I've been doing research. About 2 weeks ago, I had some heart palpitations for the first time ever - I thought it was unrelated until I read how they are sometimes related!

My Dr has prescribed a nasal spray to clear my ear canals as that seems the most likely cause for my hearing loss and the increase in PT occurances. I don't have it all the time - in fact, never when I stand up, only when I lie down. And even then, it's not every night and it goes away if I change sides.

I'm just so nervous about it all now! Seems that this blasted sea noise (or Whooshing!) is now the least of my worries, haha. Should I go back to the doctor or just wait 2 weeks with the nasal spray - I never mentioned that it was PT (I never knew it existed and thought it was all the same!). The spray should help overall (as when I yawn I can feel the air can't escape through the left ear despite no obvious blockage), but I'm still concerned that I've been "whooshing" for as far back as I can remember!

Thanks for any advice.

It's also very hard to talk about "PT", haha, because I have pet rats and in the Fancy Rat community, a "PT" is a pituitary tumour xD!

 

[Karen]

Hi, @Ano.

I just came across your post about PT, and thought I'd respond. It has been about 2 weeks since you posted the above, and I was wondering if you decided to use the nasal spray for those two weeks. If so, what was the result? Did the pulsatile tinnitus improve, or did you notice any changes at all? Are you scheduled to go back to the doctor after you used the nasal spray?

If you return to the doctor, I think you should mention to him what you've said above about the pulsatile tinnitus. Then, he may have additional suggestions for you. There are various tests that can be given to try to determine a cause for the PT, and he could perhaps schedule you for one of those. Most common tests: CT scan of temporal bone area; MRI and sometimes MRA or MRV with contrast dye.

Please don't worry about the fact that you have pulsatile tinnitus. Many people have it with no apparent cause, and for some lucky people, it eventually goes away on its own. There are a few people who have tumors, etc., but they are definitely in the minority! I'm a PT sufferer myself, and I've had various tests, and no cause has been found.

Have you checked out Whooshers.com? It is a website with lots of information about PT, including causes and success stories. Also, there is a Facebook group for Whooshers (it's a closed group) that you can join, where you can learn a lot more about it from other sufferers. I've heard that, in the UK, many whooshers have gone to Addenbrookes hospital for further testing. It might be worth checking into this if you are concerned.

I hope you are doing well, and will be interested to hear how you're feeling these days.

Best wishes,
Karen

 

[Ano]

Thanks for your reply.

So, nothing has gotten worse or better. The steroid spray never worked. I went to the ENT specialist yesterday, and they tried to tell me that whilst hearing is reduced in my left ear, it's not by a significant amount to require further testing... He has, however, referred me for an MRI scan for the PT (although if I'm honest, he seems sorta clueless). I'm waiting for an appointment, which will be in another 6-8 weeks.

I am utterly terrified. Especially since he told me that he thinks it's a growth on the nerve! It gets significantly worse when I'm tired... and by around 8pm every night, it's driving me crazy. I hope something can be done, but from what I got from the doctor, if the MRI scan comes up clean, then there is nothing else he can do :-/! They tested my eardrum, and that came back average, so he said that rules out sticky ear.


If I have to live with this for the rest of my life, I may go crazy!

 

[Karen]

Hi, @Ano,
Sorry to hear that nothing has changed so far. It's good that you are going to get an MRI, and if your ENT doctor cannot find anything, maybe you could try another specialist. I've heard great things about a doctor in New York (U.S.A)., Dr. Maksim Shapiro, who has evaluated people's scans via long distance. Also, you might want to check on Whooshers.com with other PT sufferers in the UK, who might know of a specialist that you could go to closer to where you live.

I wish you well, and I certainly understand what you're going through. The main thing is that, if there is a physical reason for your PT, there may be some kind of solution. Please don't give up hope! I haven't, and mine (after four long years of PT) has subsided somewhat.

Best wishes,
Karen