Does certain sounds hurt your head and spine

• By batley
• Posted July 8, 2008 at 8:41 pm

hi yr not crazy i have that as well at times , when i go bed everythink must be quite for me because sounds go threw me , and yes the fridge really does send me crazy, it dont give me pain in spine but it goes threw my head , i have always never really thought much about it untill i just read what you put , even when my dogs snore it drives me mad , people get many different things happen to them so dont ever fill crazy or stupid about it , even if i shout i get a buzz go threw my head so i tend not to shout now lol, keep up with your checks and your doctor shouldnt tell you to keep quite if he does change him , best wishes

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• By birdmom
• Posted July 9, 2008 at 7:47 am

Hey Batley, Thanks you are right no one ever likes to think there going crazy. I am glad you have a sense of humor,at 730 am you made me laugh, the part about your dog's snoring was really a hoot. laughter is sometimes the best medicine.Do we know why sounds bounce off us like that, and I often wonder why most things seem to happen when vhl people are at rest or being still.Big? mark, any way have a great week and thanks again for reassuring me. Birdmom

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• By JennyBlue
• Posted July 9, 2008 at 8:46 am

I haven't experienced this quite as you describe, but when I had my first two spinal tumors, low frequencies brought on back spasms. Like the rumble of thunder, airplane noise, refrigerator,air conditioner and surround-sound bass. It also got increasingly worse when I would try and rest, or when the barometric pressure went up. Not to alarm you, but have you had the brain/spine MRI's recently?

That said, my father (also a vhl-er) has been experiencing painful "sounds" in his head for a few years now. We actually thought he was going nutty, and after all of the audiometric/brain and medical scans came back normal, we thought he was really losing his mind, and dragged him off to the shrink. It turns out, that doc just wanted to put him on happy pills, which my father refused. So, he has had this for about 6 years now. No one can give him a good reason why, but he does talk about it with me, now and then. I have no advice to give, except to say that I know that in a perfectly healthy psychologically-wise person, I have seen this. I wish you luck, and hope that someone has a good answer for you.

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• By birdmom
• Posted July 9, 2008 at 9:42 am

Thank-you for your response, to answer your question no I have not had MRI's taken recently 2005 were my last. When those were taken they found 3 hemangiomas on spine C5- T12- L3 of course the medical dr's here told me no problem there is no cord involvement. The mri of head showed a spot in upper brain, that I was told it was an age spot. I know that I need up dated work ,but I have been told by many dr's that I am crazy .The nuero I saw told me I was majorly depressed he to wanted to give me antidepression medicine,I kindly delined and walked out of his office and told him his diganosis was unexceptable. I just pushed forward and found a dr that believed me, now he is a big ? mark, I know things need to up dated, I have been having symptons for many years, I am waiting for my disability to kick in ,there is not much else I can do but play the waiting game. Better days ahead thats what I keep telling my self. Give your dad my best and many good days ahead for you and your family. Birdmom

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• By joyceg98
• Posted July 10, 2008 at 9:34 am

Number one: You are NOT crazy. Hooray for you in sticking up for yourself.

Number two: The brain is a complex organ, and one we do not fully understand. We may never have clear-cut answers about the sounds, but they are interesting signals that we should not ignore. Write them down in your notebook, and see if there is any pattern -- such as the frequencies you mentioned, the low-pitched hum from the refrigerator causes what kind of reaction. The dogs barking. We may not understand it now, but one day we will have a keener appreciation for what this is telling you.

Number three - do keep up with your scans, so that you have medical information to go with these perceptions about your symptoms. Hopefully everything is calm, but if there is something brewing it would be good to know, and to see if it aligns with some of the symptoms.

Re: "I know things need to up dated, I have been having symptons for many years, I am waiting for my disability to kick in ,there is not much else I can do but play the waiting game." -- You really shouldn't wait "for years". If it's a matter of putting off the scanning for one year, that's one thing, but putting it off "for years" is a dangerous game, especially if you are experiencing symptoms. I realize there is a financial element here, but you need to know you could be risking something worse than money.

Re: "my father (also a vhl-er) has been experiencing painful "sounds" in his head for a few years now."

Again, I would take these seriously and keep a log -- when do these sounds occur? What was he doing before it began? What is the date? What time of day? What's the weather like at the time? On a scale from one to ten, how severe? Is there a particular pitch to the sound? Maybe find a matching note on a piano and write that down too. How long does it last?

All this information won't feel important until you get a dozen or so incidents written down. Then you should be able to look back and begin to see a pattern.

ELST's are sometimes very hard to find on the scans, even with the shallow-cut MRI of the Internal Auditory Canal (IAC). Sometimes there is documented hearing loss even when nothing can be seen on the scans. And yes, this can go on for years. And we have learned to take it seriously nonetheless.

Hang in there!

Best,
Joyce

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• By joyceg98
• Posted July 14, 2008 at 2:32 pm

I passed your question (anonymously) to one of our medical advisorys who replied:

"The patient should probably see a neurosurgeon or neurologist and have an MRI of the brain/spine."

If you can keep a log as described in my earlier message, that will help a great deal in figuring out the source of the problem.

Best wishes,
Joyce

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• By birdmom
• Posted July 14, 2008 at 6:42 pm

Thank- You very much for all your hard work and concern, I have as we speak, a perscription for a MRI of the brain w/wo contrast, from my MD. I will be calling the imaging place tomorrow to make appt. I am not felling so well,right at this time. I just wanted to say thank-you, I will let you know the out come as soon as I know. I do have to admit though, that this time I am a greatly concerned,about my over all health. With much gratitude Jeannie

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• By joyceg98
• Posted July 15, 2008 at 11:31 am

We'll all be cheering for you, sending you good vibrations, and holding your hand -- at least in this virtual world!

Best wishes,
Joyce

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