I hear more people than only me complaining about pulsatile tinnitus. We all seem to have "normal" tinnitus but PT is really something different. I have an article link from Timothy Hain, THE Dizzy Doctor. Want to share that with others, who might not have it. http://www.dizziness-and-balance.com/disorders/hearing/tinnitus.htm Marian
Re: To Ray: can you please put this post in the Database to share it with others? I don't have tinitus but my hearing sometimes pulses in and out with my heart beat. I bet this is pretty common.
If it does not really bother you much, you can forget about it. Only when life becomes unbearable of the very loud roaring droan (one sound) and loud banging of the heart beat right through it, then this article will be handy to read and find out what sort of tinntus you have. If it is really bad pulsatile tinnitus, then I would contact a good physician a.s.a.p. I try to, but in my country they do not know anything at all about these sorts of tinnitus. Today I sent this article to the specialist to-be who treated me with pills only and they made it all worse. He first did not want to hear of it - had no time. But my poor sick husband insisted that he should call us back. I am about to give up, I can't live with this anymore. It ruins my whole life and that of my husband. He called an hour later, while it was promised that in 5 minutes he would call back. We had some important mail to put in the mailbox and it got later and later. Calling them again did not work - the office was closed around 5 pm. And of course, as soon as my husband had left to go to the mailbox the phone went. I cannot talk over the phone anymore, can't hear the people who call us. Luckily hubby had changed our phone over to his cell phone so on the road walking to the mailbox, he got the doctor finally on the phone. With his feverous body he ran home and told me to give the link so he could look it up himself. I said that I would rather email it to the doctor, so no mistakes in spelling and _ and - in between words could go wrong. but he insisted that he wanted to look it up in the medical area where the specialists find their readings. I said that it was an article meant mainly for the patients, in a clear understandable language for us. Well, in the end he allowed me to email it. Later he called back, and said: this is indeed something we are not trained in at all. He would discuss it with the team and now I hope that he allows me to send him letters which I hope to receive from Timothy Hain, after I have written to him and also to a specialist (Lloyd B. Minor) in Johns Hopkins Clinic in Baltimore. Will they finally pay some attention to it? I am really desperate. Marian
thanks for the link marian, i think i am developing pulsatile tinnitus and the article has been very useful
Thanks for the link i now have more questions for the ENT doc when i see him on Wednesday??? Take care Ali
that very loud droan and the loud banging heartbeat as Marian so aptly put it, is what takes you right to the edge. Thanks for posting this Marian Loretta
I have just been recently diagnosed with Meniere's in my right ear after a battery of torturous tests (the hot/cold pressurized air in the ears.. that should be something used for torture, at least!), but I seem to have several different types of tinnitus. One sounds like a geiger counter, the other a high pitched whine that sometimes turns into more of a white noise type sound, and one I had not noticed until recently (and is particularly disturbing), sounds like a car engine running in my head. If I hum at the same frequency it actually goes away, but if I hum higher it sounds like it's "revving up". The first two I have all the time, the car engine sound goes away after lying down for a while and returns when I am upright for more than a few hours. It seems to get worse when the weather gets warm and cold too fast.
I have what sounds like a really far away train engine in my right ear. It is almost always constant and makes me really cranky when I'm trying to concentrate in a busy environment. It seems to be relieved a little if I press and firmly rub on the spot just behind my ear. This is all very new, as I have only had problems since November 06. It seems the last couple of months things have gotten worse.
Deeconnell, UrielDagda and others who hear sounds in their ear(s). There are many sounds which are called tinnitus. Since people have symptoms of Meniere, tinnitus is always part of it too. Not that loud for most, so it is not that bothersome. I myself only noticed that the fridge never seemed to stop. That sort of sound I had in 1975. But when you ask around here on the Forum what people hear in their ears, you get an enormous range of different sounds, and most get more than one in one ear, sometimes even 8 sounds at the same time. The last years since 1994, I had real bad tinnitus, but still worked with it as a secretary. Had noises e.g. thundering of trains which you can hear when you stand next to the railway, but then going right through your head and no railway at all in sight. Same time sirens of ambulances or fire engines. I worked close to a hospital, and thought at first that the whole day ambulances were crossing the road going to the hospital. But it was all in my own head at the side of the sick ear. The deaf ear (labyrinthectomy) had two sounds only, a low one and a higher one. It only got worse when I was very tired. But the left one had such an enormous variety of sounds, luckily not every day. But there were weeks that it never stopped, and at work I endured it all but as soon as I had arrived at home driving on my automatic pilot, I collapsed and no one was allowed to switch on the tv and have the sound up. I was so tired of restraining myself all day! And trying to hear what was being said and answering that horrible phone which never stopped ringing. For years people had no idea that I was completely deaf in one ear and the other one also did not function that well. I had to tell them finally when I could not stand all the noises anymore. And in 1999 I had to give up working, completely worn out. But still, that is normal tinnitus, so Deeconnell and UrielDagda can be reassured that they do not have the really bad pulsatile tinnitus. I had it during the time I had normal tinnitus sometimes too, but not half as bad as it is now. When the vertigo attacks stopped and also the normal tinnitus lessened and I did not get drop attacks anymore, then another one presented itself: the real terrible pulsatile tinnitus. That loud banging of your heart through a low droaning sound, so loud, that it is impossible to hear anything around you, even if you still have some hearing left, is something that is almost impossible to describe. To remain optimistic: not many people get this and not all Meniere people get a burnout and this instead. Only 3% of all severe tinnitus people might get pulsatile tinnitus, and even that can vary. Some have it not as bad as others. It is really like other symptoms of Meniere: no one gets something in the same way as other do. It also does not have anything to do with your acceptance level. This sort of very bad pulsatile tinnitus is not possible to accept. Only pushing your head deep into the pillow of your bed, and try to sleep, will stop it for a while. I am so dead tired, but have to go on. Find a way to get rid of this. Against all medical opposition in. Wished I would win the lotteries and could travel to the best hospital in the world where they indeed can cure PT. But even with PT not all people can be cured. And some treatments are dangerous. When you read the article carefully you will see what I mean. But I am not that afraid of dangerous surgery anymore: I am more afraid of becoming 80 years old and still have this terrible PT in my head, because no one can cure me. Marian
I get pulsitile tinnitus when I laugh really hard! Or when I get really, really angry but that's only happened a couple of times. The laughing part gets me, though. Imagine laughing so hard that you trigger pulsitile tinnitus! And I get it in connection with postural hypotension. I theorize that it's part and parcel of mitral valve prolapse. I get all sorts of tinnitus. It's horrible. When I complain about the pulsitile tinnitus, and once docs look deep into my eyes, they tell me they're just so sorry!
I have mitral valve prolapse - never considered that as a connection to pulsatile tinnitus. I did feel it was a vascular thing tho. Once I lost all my hearing (100% loss bilaterally), I don't have the pulsatile tinnitus because I believe that is one type of tinnitus that you are actually "hearing" something and not the type that is generated in the brain.
If the MVP Clinic is to be believed, all sorts of benign annoying vascular things go along with MVP for unknown reasons. HMMMM... to quote my favorite pirate, "That's interesting!" Rather disconcerting too to extrapolate. One would never know if the pulsitile tinnitus were nefariously generated, since one would never get the traditional warning of the PT itself.
Hi all: thank you SO much for this discussion, I really appreciate it all and the link that Marian gave to us too. It's invaluable! Has anyone heard of Tinnitis Retraining Therapy? I went through it and it really helped me a lot with Hyperacusis, (sensitive hearing), it's also used for Tinnitis though I'm not sure about Pulsitile but don't know. The Hyperacusis Network has a list of those who are trained to do it. Also Neuromonics from what I hear helps with Tinnitis. Just some thoughts there as this tinnitis stuff can drive you batty at times!
Great information Marian, alot I didn't know. I hate the pulsating tinnitus and like you janepm I also have Hyperacusis. I think when I am on my deathbed (hopefully long time away) I will know because all the head noise will start to quiet, either that or maybe a head transplant??? Some days............
I am new to this and I havent been diagnosed yet with this diseased but I cant find doctors anywhere nearby and I would really love for someone to help me with more information on this Meniere's Disease. I have had blackouts and loud ringing in my ears since I was 6yrs old. When I was younger they diagnosed it as like a mix of hyper-activity and being out in the sun too much. And then there were sometimes I didnt tell anyone. One time, I blacked out so bad, I was 5 months pregnant with my first daughter in Wal*Mart and they gave me 5 stsitches in the back of my head, and once again they diagnosed it as with a part of being pregnant. I have these blackouts all the time, and the ringing in my ears really bothers me bad. I am so scared to go to doctors on the fact of finding out something is horribly wrong with me. Usually, my blackouts only last for 30sec up tp like 3mins and they say that I will just lay there, lifeless, not moving and pale. And when these blackouts occur, I start feeling a warm sensation, the ringing in both my ears(sometimes just one) and then the disfunction and after that its usually about 3 seconds later I am on the floor. Please someone tell me if they think I might have this and I will make myself go to the doctor. I am only 22yrs old, with a 4yr old daughter and 2yr old twin daughters as well. I dont want an exact prognosis but I need someone to tell me if they were to guess, that its a possibility that I might have this disease. I am so sorry to bother anyone, but I just happen to come across this disease on the internet and this is the only disease that has matched my symptoms to an exact T. I have no family or friends, just me and my kids while my husband is deployed, I am scared and alone. Please someone just email me and let me know. Thank you so much for your time and consideration.
I have only had this a couple of months, but fullness and ringing in my years seem to be a precursor to the vertigo. I also lose low freq in my left ear (can not hear on the phone in my left ear); then a hour or 2 later, vertigo hits. My girlfriend is a Physical Therapist, and if I can catch her, she does a pulling thing with my ears that seems to stop the vibration and reduces the dizziness. You can actually feel the vibration as she gently pulls on the ears. Not sure if this will help anyone else, but worth giving it a try.
Marian, thank you for this excellent link. I have had PT for over a year now (menieres for almost 30 years.) but it does ebb and flow. I notice that it has a lot to do with high and low barometric pressure. MY neuro-otologist said that it is common to have these changes with weather. Sometimes I can hardly hear it yet most of the time it is very loud, banging and miserable. I have found that wearing a hearing aid helps alot. I also notice I want to take the aid out when the pulsing is low. I do have hope because early on I had it for about 10 days and then it disappeared completely for a week or so - then back again. I keep trying to treat the menieres and think that once things calm down in the middle ear, the PT will lessen. I hope so for sure! Again - thanks so much for sharing this good information. Sandyfran
