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[Worker]

So pleased I have discovered this forum and discovered there are other suffers like myself. I first discovered I had pt on the 3 June 2014. I always beleived that tinnitus was a ringing noise on your ears and thought that you got it from being subjected to a lot of noise. HOw wrong was I.

It has been a life changing experience.

This is a description of my tinnitus

It sounds like a high pitch cymbol/bell in rytham to my heart beat
It can change loudness from a ticking to very loud.
It stops when I rest my chin on my chest, turn my head to my left, stand still or pich my nose and blow hard, clench my left back teeth together
It is heard in my left ear but if I tilt my head up it goes into my right ear
When I walk, bend down, lift my head it sounds like I have lots of cymbols all going at the same time
It is worse when I am sitting down and lying down I dread doing this
when it is loud which is 75% of the time I can feel it T the back of my head and is quite frightening
I can place my hand under my chin and cam control its loudness

Is there anyone out there who has any experience of these symptoms please and any idea what causes this?

 

[billy43]

hi worker.welcome to the forum.alot of great people and support here.i also have pt.mine is a hissing noise that is in sync with my heart beep.mine also gets louder when walking,running or bending over.it also gets louder with jaw movement too.my pt also came out of no where.but might be related to a bad concussion I had 2 months before my onset of pt.just wondering have you seen an ENT or nuerologist .most of the time PT is nothing serious but its still good to have the proper test to rule out anything serious.the noise is tough enough to deal with.I can tell you im doing better than the first couple of months and at least I sleep real well which I did not for the first 4 months or so.ok talk to you soon. billy43

 

[Worker]

THANKS FOR THAT Billy was starting to beleive that I was the only one who has these symptoms the bottom has fallen out of my world. I have been to ent twice but the Consultant didnt want to listen to my symptoms and told me on the first appt that I didnt have enough air in my eustachiun tube and gave a steroid spray which made me ill. HE never said it was a steroid. I now have tinnitus in my right ear which sounds like I have been to a disco. On my second visit he said that my tube was fine and that my accoustic nerve was old! I have asked my GP for a referral to a Consultant who is at another hospial and he will accept me but he has a very long waiting list. He is has a specialism in pt and writes about it. I am so desperate for it togo. HOw long have you had your for? It is very hard to put it at the back of your mind when it so loud and changes at any time. When I discovered it I had been taking calcium supplements andI had a dental injection for a filling two weeks previous and the day after the injection I had an earache. I very rarely take pills for anything. JUst dont know why this awful condition has happened. LOok forward to hearing from you or anyone else who has a similar pt.

Worker

 

[Thegeen]

Hi Worker, Did your ENT suggest a MRI or CT scan? I have T in my left ear for about six years and went to two ENT's. The first visit was about six years ago when I first noticed the T and then again last week since the T was getting louder. During the last visit, the ENT referred me for MRI. I go in today for the scan. He wants to rule out any rare problems that could be causing my T. I'm learning that you can't let the T dominate your thoughts. The more I recognize it and focus on it, the louder it seems. Try to stay busy and think positive. I think we're in one of the most painful parts of the journey - which is the diagnostic part - trying to figure out what is causing the T and the not knowing. Some people never pinpoint what is causing the T. Ruling out something more serious is the best bet and then if you are lucky/blessed enough to get past that hurdle, it will just be a matter of 'habituation' - things like getting hearing aids that improve your hearing and help mask the T sound, going to TRT which stands for tinnitus retraining therapy and lastly living a healthy lifestyle (exercise, low glycemic index diet, supplements, deep relaxation, good sleep, lots of water). Good luck.

 

[Worker]

THANKS thegeen. I was given an mri and that came back as normal. BEFORE MY FIRST APPT I had a hearing test which came out as normal apart from the very high frquency loss which normal for my age. I had a hearing test about 10 years ago when I didnt have t and it was the same as it is now! I was also given a what I think is a tympanogly test for the air in my escuchian tube and this came back as not enough air. I didnt have a cold, rhinitis, allergy or anything else! WAS TOLD THAT HE SEES 4 PATIENTS AWEEK WITH THE SAME PROBLEM AND AFTER THREE MONTHS I WONT HEAR IT AND IT WILL JUST TICK WHEN I GET A COLD,
ON the second appt he said that my escuchian tube was fine and that my accoustic nerve was old. HE wasnt interested in my symptoms. Wanted to write me off. It is very intrusive not just a little noise. It gets so distressing and sounds like it is in the middle of my head with my ear picking up the noise. VEry bizaar. I have an appt with an audiologist at gthe end of the month o I can deal with it.

I have always had a healthy lifestyle and eat a very healthy lifestyle, never been overweight, very rarely take medication, never taken drugs and dont drink much alcohol, always worked in a government office without noise and have only been to four concerts in my life. THE ONLY THING I PUT IT DOWN TO IS TAKING CALCIUM TABLETS WHEN I DIDNT NEED THEM AND AT THE SAME TIME HAD A LOCAL ANAESTHETIC FOR A DENTAL FILLING.
THANKS FOR YOUR KIND ADVICE AND WOULD BE GOOD TO HEAR FROM YOU AGAIN OR ANYONE ELSE FOR ADVICE.

 

[Karen]

Hi, Worker, and welcome to Tinnitus Talk!

I've had PT for over four years now, and mine started suddenly, too. With me, it was after taking blood pressure medicine for the first time. Mine is only in one ear (right ear), and I did have mild tinnitus and hearing loss in that ear before the blood pressure meds, but it was not bothersome. After the meds, however, my ringing turned into a loud ringing/hissing, and sometimes roaring sound, and the PT started, too. True pulsatile tinnitus is constant, and is in rhythm with your heartbeat, so I want to make sure I understand that yours is like that, too.

I'm wondering if the meds both of us were exposed to (in your case, calcium tablets and local anesthesia, and blood pressure drugs for me) might have affected our already-sensitive ears somehow. I too think it's very strange that the PT just began suddenly, out of the blue.

In my case, I've had a CT scan, MRI and MRA with contrast, and Doppler of the carotid arteries, and nothing unusual was found. I've had it for over four years now, and have gotten off all blood pressure meds, but I still have the PT. It has gotten a little bit easier to bear, however. I'm able to sleep again most nights, and can handle the days better. What has been working for me has been the passage of time, plus taking magnesium supplements, plus distracting myself during the day. I've tried hearing aids, but they seemed to amply my pulsating, so I did not keep them.

I wish you well, and will be interested to hear if you find out any additional information about your condition.

Best wishes,
Karen

 

[billy43]

hi Worker.the best thing I can tell you is in my case time has helped.at three months or so I thought my life was over.every day seemed like a living hell.i truly didn't want to live any more and had horrible thoughts.at six months things were still awful but here and there I would start to have fun again .thank god I continued to work thru the bad times which at least provided a distraction of sorts from the PT.Well here I am 11 months or so.and when I look back im doing so much better.sure the PT drives me nuts .but im back to doing so many things in life that I enjoy .and when im really having fun or even when im concentrating on something at work the PT seems so quiet I don't even seem to notice it.granted that its only short periods of time but I know im making progress.so try to stay positive and I know that seems impossible right now. theres a section on this site called success stories.i read them all the time just for the positivity I get from them.ok good luck with things and remember things will improve with time.thanks billy43

 

[Worker]

THANKS FOR YOUR REPLIES. IT DEFINITELY GOES WITH MY PULSE. IT SEEMS TO CHANGE WITH MY HEAD POSITIONS. IT OCCASSIONALLY GOES TO A TICK BUT ONLY FOR ABOUT HALF HOUR A DAY. WHEN IT GETS LOUD I CAN FEEL THE PULSES AT THE BACK OF MY HEAD. WHEN IT IS AT MAXIMUM IT IS VERY DISTRESSING AND HARD TO IGNORE. WHAT IS A MRA. I am waiting for an appt with john phillips who has an interest in pt but have been told that it could be jan before I get an appt. Interested in any information anyone can offer me.

 

[Karen]

Hi, Worker,

An MRA is a scan of the arteries. There is also an MRV, which is a scan of the veins. You might want to ask your doctor about both. I wish I had known what these were before I had my MRI, because they can all be done at the same time. That way, the doctor will get a much clearer picture of the veins and arteries in your head, and it may point to an area that could be causing the PT.

There is a lot of information about pulsatile tinnitus on Whooshers.com, if you haven't already discovered it. There, you'll find information about what to discuss with your doctor, stories of cured "whooshers", and possible causes for PT. There is also a Facebook group you can join, to communicate with other PT sufferers.

We know what you're going through --- a lot of doctors don't know much about this condition, and often dismiss us, or try to give us advice that would apply to regular tinnitus instead.

Please keep us posted on how you're doing!

 

[Worker]

THANKS KAren for th info on mra etc. I live in gb and wonder whether we call them something else here. I get very frightend about pt. I just keep waiting for my appt with john phillips but he is very popular. JUst wished this had never happend to me feels like a dream. We have the nhs here and am considering paying to jump the waiting list. WILL KEEP EVRYONE INFORMED. IT APPEARS THAT EVRYONE HAS A DIFFERENT TYPE OF T AND MINE IS NEVER AS I THOUGHT T WAS. IT FOLLOWS ME ALL AROUND AS I MOVE MY HEAD. JUST DIFFICULT TO PUT IT TO THE BACK OF MY MIND. THANKS FOR EVERYONES SUPPORT.

 

[Karen]

@Worker,

Back in June, when you had that dental procedure, what kind of procedure was it? Did it involve keeping your mouth open for a long time, and did it affect your jaws in any way? I'm wondering if you might have TMJ, and if that could have caused the PT. Just a thought to consider.......I've heard of other people who have gotten tinnitus, or their tinnitus worsened, after a dental procedure.

There are so may possible causes for tinnitus and pulsatile tinnitus. It's hard to say what might have set it off. As for me, I already had mild tinnitus when mine began, and I think it might have happened because my right ear was already damaged. Difficult to say for sure.

Anyway, please feel free to come here for support any time. We certainly do understand how you're feeling. I hope you do get to go to that doctor soon!!!

Very best wishes,
Karen

 

[Worker]

RThanks Karenstrangely enough I had a check up at the dentist yesterday and asked whether I had this and she assured me that I didnt so I can now erradicate that one. I was so distressed yesterday evening with the very loud noise.

 

[Karen]

@Worker, Well, that's good that you were able to eliminate TMJ as a possible cause!

Hopefully, your doctor will approve an MRA/MRV for you. Other tests to consider include a CT scan of the area, and if warranted, an angiogram. It depends on what your doctor thinks.

On Whooshers.com, they suggest that, if your doctor cannot find a cause, you might want to send copies of your scans to other doctors. They have a list of doctors on that website that might be able to assist. They also suggest having a neurointerventional radiologist look at your scans.

 

[Worker]

THANKS FOR THAT. I HAVE BEEN INFORMED THAT I MAY NOT get aN APPT UNTIL JAN. EVERYTHING WORKS DIFFERENTLY HERE IN UK. I need the appt now. It is just frustrating.

 

[Hengist]

It seems to be related to your bloodstream, and if you can make it stop there is certainty it can be solved if you can get some professionals to find out exactly where the cause is. Just be patient as pulsing tinnitus is not made worse by passage of time and becoming chronic like typical tinnitus is. It is most likely a matter of time when it gets removed since you live in a country with an advanced NHS.