I have high pitched ringing, buzzing and swishing sounds ( Tinnitus ) in my ears, for years. Both Pre and Post ACM surgery 15 years ago. In the last few years 5 +/-, in addition to the ringing, I began have frequent, mostly at night, the sound of what sounds like my heart beat in my ears/head (pulsatile tinnitus) . With research have found out that this can be a symptom of Idiopathic Intracranial Hypertension (IIH). Along with other symptoms of IIH that I have, my doctor has put me on a medicine called Diamox (Acetazolamide). Currently in my second month of, the Diamox has greatly reduced, almost eliminated the pulsatile tinnitus. But only to be replaced with a new problem....
Now, I almost always hear Music playing in my ears/head, sounds kind of like a Violin or Viola. In addition other sounds like the ring tone from our telephone, or a musical tune from a background of a TV show, will get in there and stick around for a while (minutes to hours).
I am waiting to speak to my NL about this, in a couple of weeks. But I was just wondering if any other Chiarians out there, have had or were having similar issues? If so what have you done about it?
G'Pa Jack
PS: The good thing, I guess with my own music, I no longer need that subscription to Sirius Satellite Radio.
Thanks for the input. I will definitely research "Paracusia", to give me some more info, for when I see my NL.
Funny thing about the wife/husband thing. Just the opposite here, my wife say's I never hear her...
... Of course that could just be the 35 years of marriage.
G'Pa Jack
Mandy said:
I thought I would be able to find more research articles, since this one was back in 1968 and they knew about it then...but no such luck. Here's one from another site discussing hearing voices:
Sorry for the delay with any updates regarding this..... But have been having a lot of other issues, with pain and such, and have not been on the computer much.
For those with "ear music" issues or those just curious. Spoke with the NL, not much luck. As my music increased to 24/7 and became louder and more defined, with some identifiable tunes like, patriotic, or holiday music and even "it's a small world". Well on the brink of screaming (as I'm sure the "small world" thing could do to many), I did some additional research, along with my family doc, and found some interesting articles about it. There has been a few studies both local and abroad, even one being able to hook the affected up to a computer and actually see the sound waves. Some of these researchers found that vitamin B-12 could help. So I began with OTC tab's for a while, without much difference. Then began injections, 1 ml every two weeks of Cyanocobalamin. What a difference, has been helping a lot. I still have some music, but not all the time, and much softer without the identifiable tunes.
So if you have been having a similar issue, you might want to mention the B-12 thing to your Doctor and give it a try.
OMG! I thought I was the only one to hear that! I knew about the ringing being common, and buzzing. But the background low tone music I thought I must have been going a little crazy! This started prior to any medications, so I tend to think that it may be pressure. Odd that at times I hear the buzz in one ear and later the music in the same one. Another time it may be the other ear but music seems to correspond on the opposite side of the oncoming headache... SOOO Glad you posted that questions, nice to feel just a little less alone with these strange symptoms.
I hear it at night! Sometimes it is a really nice little tune! I wake up and hear music. Tonight it sounds like a flute. If the air conditioner is on I can guarantee I will.hear it. I wonder if I am going nuts! Lol
My NS is looking into this for me as he said it was "very interesting". Good to know its not psychological. Have you had your hearing checked? I haven't but I just remembered my daughter (who has Chiari as well) had some odd hearing tests years ago. Her auditory response didn't work. Later it tested fine. I was told she probably had a cold. She used to get pneumonia every year, that can be Chiari related as well.
I have lots of ear pressure and I tend to get them at night after putting away dishes etc...that go in my cabinets below.
So, thinking it's pressure related. I don't seem to have hearing loss...? At least not last time it was checked.
I have had this a long time but not as much as some of you have posted.
It doesn't help that my bf watches tv in the other room really low and sometimes there IS music! Sheesh!
Drives me nuts.
I am learning to play cello and sometimes my practice songs go over and over in my mind and then later appear via a flute or piano in my "ear". I often wake up to it in the middle of the night. I have my phone hooked up to speakers and play "brown noise" in the background. It's free and helps get rid of the sometimes annoying music or party noises I hear.
I will try B12 it can't hurt.
I will also mention to my Dr. if it doesn't go away.
I have surgery in 2 weeks and am curious to know if the music will go away after.
HEY ME TOOOO!!!!! I do hear music. sounds like actual songs.. But nothing I recall hearing for real. Glad I'm not crazy. I have the other hearing problems to. The pulsating heart beat sound in my ears. This same pulsating affects my vision. It will actually go dim and dark with a pulsating pattern. especially on straining.
HEY ME TOOOO!!!!! I do hear music. sounds like actual songs.. But nothing I recall hearing for real. Glad I'm not crazy. I have the other hearing problems to. The pulsating heart beat sound in my ears. This same pulsating affects my vision. It will actually go dim and dark with a pulsating pattern. especially on straining.
Hollerhick
In regards to your, " other hearing problems to " I had the same issues for many years. I was finally given a name for it and diagnosed with, intracranial hypertension (aka: pseudotumor cerebri). I have been on a drug called Acetazolamide (Diamox) for it, for the past year, with outstanding results. No more heart beat in the ears and improved vision. The results were very fast, within a week or so of starting the Diamox. Talk to your doctor, any problems, refer them to Dr. Oro, the Chiari doctor in Colorado. His knowledge, research and advice has been a great help to my doctors, in treating me here.
GP'Jack
PS, That's when the "music thing" started for me. Somewhat a better trade off for the "heart beat" and vision issues.
I was told by my Dr. Meds can cause tinnitus. But the music they would need to research. Odd as my Dr. Is the same as yours. How did they find intra cranial hypertension? I just had a visit the other day…
Also, my music began prior to starting ANY meds.
Do you have auras as well? Double vision? Just wondering if my suspissions about high pressure may be correct. I have never had a flow study done either. Difficult to treat me when I’m out of state…
Also, my music began prior to starting ANY meds. Do you have auras as well? Double vision? Just wondering if my suspissions about high pressure may be correct. I have never had a flow study done either. Difficult to treat me when I'm out of state...
Hi Pebbles,
Awesome you get to see Dr. O, I have heard he is one of the best. I live too far to see him myself and can not travel. My GP, NL & NS, have all followed his research, seminars etc. and have consulted with him on my case. Their wiliness to do so and the knowledge they have gained from him has been a great help and benefit to me. The double vision problem for me, has been around for over 20 years and I have never really had an issue with auras. ( I think maybe, I acquired an immunity to "Auras".... when I was a kid, I lived on a street named Aura...) Regarding the heart beat in the ear and the "intra cranial hypertension", Dr. Oro is the one that recommended Diamox to my Doctors. As far as the studies and tests that I have had, there have been so very many over the years, it is hard to remember which or the results. I have been a Chiari'an most of my life and a brain injury patient for the past 25 years. Now at my age with my mobility, arthritis, cognitive and other issues, it has pretty much became an issue of managing the pain and the symptoms for me, at least for the remaining years I have left.