Tinnitus and pulsatile tinnitus

[SKT]

Hi. I am new to this site.  I am 2 years post-op.  I had a 3.3cm AN compressing on the brain stem. I was never a stranger to headaches over the years, but I never thought they were anything out of the ordinary. The symptom that prompted me to see the doctor was very sudden, loud tinnitus that came on one night.  It completely freaked me out.  It didn't stop.  I found I couldn't concentrate at work, at all.  I really pushed the issue, got myself referred to an ENT surgeon. 2 weeks later an MRI disclosed the AN.  I had it removed 3 weeks later, translab approach. My hearing was remarkably good pre-surgery, never noticed a drop in hearing.  I am now deaf on the left side. My tinnitus is much worse than it was pre-op.  I thought that it would improve over the course of a year, but now 2 years down the track, it hasn't improved at all. I've never really raised it before, as I just don't want to complain - I have always felt so lucky and grateful that I came out of the surgery so well. Extremely happy to be alive and well; I think my surgeons are just amazing.

However, I figure this is a good place to discover if there is anything anyone has found to alleviate their tinnitus.  Mine gets extremely loud when I'm in a room full of people chatting, when i'm tired, after a bit of alcohol and when i'm sick.  I get this awful pulsating type tinnitus sometimes - only ever at night - it's like a loud, high pitch pulse - almost like you can feel your blood pumping away - it's quite painful.  I can't fall asleep until it stops.

If anyone has discovered anything that helps their tinnitus, I would be most grateful to hear from them.

[Sanddollar]

Interesting that your tinnitus started suddenly one night.  Mine did, too.  In fact, it woke me up when it started.

I have not had surgery yet, but am scheduled for late January.  I understand that the tinnitus does not go away and I hope that it won't get too much louder.  I still have some hearing in my AN ear and that seems to aggravate it now.

I have found that having some kind of sound - not loud - like background music or other "white noise" seems to mask the tinnitus for me.  I have also used a pair of Bose noise canceling headphones and gotten some relief, but am pretty sure that this will no longer work when my AN ear no longer hears at all.  I also find that sometimes I kind of forget about it.  I believe that my mind is figuring out how to ignore it.  This after about 2 weeks of it. 

This may not be much help, but I did find a web site for the American Tinnitus Association that might have some tips.  I haven't spent much time there yet, but you may want to check it out.  http://www.ata.org/  Also, stay tuned for more posts - I am certain there are other folks dealing with this with a closer match to your situation.

Sanddollar

[luv2teachsped]

Sanddollar:   Tinnitus can and sometimes does go away.  I had tinnitus for many years before my diagnosis, gradually getting louder.  After my surgery, it was gone!  It has come back lately(7mo. post-op), but much less and not nearly as loud. So there is hope! Stay positive!luv2teachsped

[Sanddollar]

luv2teachsped -

Thanks for the bright note on the tinnitus!  I had kind of given up on ever knowing silence again.  Funny how one can become deaf in an ear and end up with "noise" in it.  AN throws us the strangest curve balls, no?

One cannot quite understand the tinnitus unless they have experienced it.  It can be very distracting, particularly at first.  I found myself struggling with my voice volume when I would speak to people, as I wasn't certain if I was speaking too loudly, trying to overcome the tinnitus I was hearing, but they were not.  I can see where if it were much louder that it could really make life difficult.  I wonder if hypnosis could train away one's consciousness of it.

I hope that yours goes away again or remains low volume.  In any case, a positive attitude and a sense of humor seem to make all of the difference.  I intend to hang on tightly to both throughout this.

Sanddollar

[matti]

I never had tinnitus before AN surgery. Mine developed suddenly around 2 days after surgery and has been here now for 7 years. It is a constant 24/7 high pitched buzz/bell ringing and  it gets louder and more high pitched as the noise level around me increases. My doctor tells me that it is a result of the hearing nerve being cut/removed and is now picking up stray signals from the brain.

SKT mine gets more aggravated when I am stressed and tired as well. My head pulsates on my surgery side when I have been reading too much, stressed, working outdoors or exercising and alot of times chewing my food.

My doctors don't seem very concerned about any of it, but do sympathize that it is very annoying. Luckily most of the time I can override the buzzing, except when I am in a room full of people or at the movie theatre. I have to say that at 7 years out, I have become so used to it that I really don't notice it.

Now, if I could only get the bell ringing/buzzing to play a tune once in a while, than that might be nice.

matti

[SKT]

Sanddollar, thanks forthe response - I agree with luv2teachsped - there is every hope that you will not have tinnitus post surgery - everyone's experience is different.  Even if you do end up with it - you'll be fine as you have a great attitude. Goodluck with your surgery - You'll be in my thoughts - let us know how you go.

Matti, thanks so much for your post - it is comforting to hear that other people get that pulsating tinnitus as I really hadn't heard anything about it until I experienced it. It's quite different to the normal tinnitus - it's like a pounding in your ear.  Really freakied me out at first.

I agree- would be great if the tinnitus could get itself a rhythm every once in a while. Thanks again for your post.

[Static]

I am just 20 days shy of being 2 yrs post op and my doctors also told me that the tinnitus would lessen as time went by...... one can only hope.  It's just the same, if not worse, as the day after surgery.  I also get the pulsing tinnitus and the noise around me makes it worse.  I have a horrible time trying to hear in a crowded room not just because of the single sided hearing, but also because of the buzz saw that is constantly running in my ear!  Some people just don't understand how difficult it can be to hear with single sided hearing and how very frustrating it can be.  I feel like a broken record constantly telling people I can't hear them and asking them to repeat themselves... it's either that or just pretend I heard what they say .  My husband got me tickets to a  Billy Joel concert for Christmas.  I think it might help if I use an earplug so the music isn't so loud that it will make the tinnitus unbearable for days! Single sided hearing does have it's perks though, no more snoring husband keeping me awake at  night LOL!  I have to say that I am starting to get used to it, but it isn't making the hearing any easier.  Sorry but I  haven't found anything that makes the tinnitus lessen but if anyone does, please post!  Hope everyone has a happy and healthy New Year!  Hang in there!

[SKT]

Hi Static. Thank you for your post.It feels so good to hear someone else describe exactly how I feel.  I've not communicated with any other AN patients since my surgery 2 years ago. Although I'd hate for anyone else to have this narky tinnitus, it does make me feel sane hearing someone else describe exactly what I experience.  I'm in fact up late right now because that horrible pulsating tinnitus is playing up, refusing to let me sleep...

The ear plug at the concert really will help.  I have used it at a concert, and found I was very comfortable - it works really well.

[kevins]

SKT:  I am 4 years post op and have tinnitus that is always there.  I have a friend who is a retired heart surgeon and has tried helping me with medications.  I have tried anti-convulsion meds with little success.  I also have tried Zoloft which is an anti depression med.  It helps with the hig pitch pulsing and with eye movement related noise.  All of my symptoms get worse when I am tired, in a loud enviroment.  If I forget to take the meds I do notice a difference in the level.

kevins

[SKT]

Thanks for the post Kevins.  The surgeons i have seen have suggested that nothing helps?  Do you notice a real difference in the level with the meds?

[antoinette]

Hi I also had and still have on occasion the type of tinnitus, pulsating, shrieking, extreme when a sudden noise occurs, and sometimes it is making a white flash of light in my eyes a bit like lightening (when a spoon fell on the floor was the first occasion when this happened. being tired, frustrated or scared/worried do increase the volume, eating too rich a meal does it too as well as drinking any sort of alcohol, one glass of wine can soar the volume, a few drop of liquor do the same, coffee should be decaffeinated and sugar, cakes, and soft drinks will increase the volume somewhat and it is easy to learn what does it as it is almost immediate
So, for me, more veggies than meat, only one egg per week, and drinking a lot of good water. Relaxation can lower the volume of tinnitus, and I am trying to find the "biofeedback" way to control it as I heard 2 years ago a AN patient from Florida tell me. She also told me her brother has cured his high blood pressure with biofeedback. I wish my computer had not crashed a few weeks later, I have lost all addresses.
Good luck
ant

[SKT]

Thanks antoinette for all the tips. I really should cut out my coffee - i still have one or two a day....  Why do you think meat spurs it on - have you just noticed that it does?

[Battyp]

Sanddollar I just got lectured, scolded, ridiculed heck I'm not even sure what to call it for talking too loud in a noisy resturant today.  The person I was talking too said I wasn't too loud.  I don't know if it's because the speaker with blaring music was right over out table or what.  I am deaf on my left side with high pitched tinitus in both ears so I know I have trouble with volume control.

I tried to be hyptonized before I knew I had an AN but was unsuccessful...wonder if the AN had anything to do with it? 

Antoinette interesting info thanks for sharing

[Rick Everingham]

Hi I also had and still have on occasion the type of tinnitus, pulsating, shrieking, extreme when a sudden noise occurs, and sometimes it is making a white flash of light in my eyes a bit like lightening...

This perfectly describes my experience with tinnitus. Had a 1.5cm an removed via translab on Jul 30, 2003.  Had mild tinnitus before the surgery but the noises above started within a few months after it.  I too have problems in loud places such as restaurants, the tinnitus is much worse in those environments.  My only solution is to get out of there.  At home, I go lay on the bed, turn on a fan and meditate, that usually works.

Rick

[Janet]

Thanks for the ear plug suggestion. My husband loves live musical performances. I shy away from them because it increases the volume of ringing. The aftermath is not worth it.  Ear plugs sound like the solution.