Tinnitus and CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Do you suffer from ringing in the ear?

Yes
37
73%
No, never had it
8
16%
Have noticed it in the past, but gone now
6
12%
 
Total votes : 51

Tinnitus and CCSVI

Postby Sneaky » Sun Oct 04, 2009 2:42 pm

I'm curious how many of you suffer from tinnitus ie. ringing in the ears? I most certainly do and it's what lead me to my soft diagnosis of MS. My ENT informed me of the possibilty of ms after a brain mri showed some irregularities about 1 1/2 years ago.

Laying in bed last night I realized that if I squeze my jaw real tight and strain my neck muscles, my tinnitus changes it's pitch. So this afternoon I did a search on tinnitus and vein pressure; here's the first definition I read on the web of Objective Tinnitus...
Objective Tinnitus
The rarer form, consists of head noises audible to other people in addition to the sufferer. The noises are usually caused by vascular anomalies, repetitive muscle contractions, or inner ear structural defects. The sounds are heard by the sufferer and are generally external to the auditory system. This form of tinnitus means that an examiner can hear the sound heard by the sufferer by using a stethoscope. Benign causes, such as noise from TMJ, openings of the eustachian tubes, or repetitive muscle contractions may be the cause of objective tinnitus. The sufferer might hear the pulsatile flow of the carotid artery or the continuous hum of normal venous outflow through the jugular vein when in a quiet setting. It can also be an early sign of increased intracranial pressure and is often overshadowed by other neurologic abnormalities. The sounds may arise from a turbulant flow through compressed venous structures at the base of the brain.

I've always had a minor TMJ issue back as far as I can recall, so I remember atributing my ringing in the ears to this when first researching it online.

I don't think this is simply a coincidence... how can these not be linked together?

Mike
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Postby chrishasms » Sun Oct 04, 2009 3:00 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 6:09 pm, edited 1 time in total.
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Postby jimmylegs » Sun Oct 04, 2009 4:40 pm

gawd now i'm imagining i have tinnitus, apparently lol! (*something* changes when i bite down hard... kind of like the change when you yawn, a little??)
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Postby mrhodes40 » Sun Oct 04, 2009 4:45 pm

Mike how interesting a connection!

I have tinnitus but I have nerve damage in one ear so I assumed that was related (if you put a ringing tuning fork on my head the sound "goes" to my right ear) It seems reasonable a person could hear their blood flow...never thought about it before 8)

mine changes pitch but I have stents.......... :?
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Postby Sneaky » Sun Oct 04, 2009 6:12 pm

mrhodes40 wrote:mine changes pitch but I have stents.......... :?


Hmm, well maybe it can be a coincidence, but it would make sense that there is a correlation, after all we are talking about the blood flow, veins and irregularities so close to the inner ear.

And when you think about it no one really can say for sure why some get tinnitus, same as MS. Additionally, people have varying degress of tinnitus, same with MS. Tinnitus has been know to disappear for some patients, much like the lucky few patients of MS.

Maybe CCSVI and tinnitus have been associated all this time, like as in, one in the same?

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Postby CureIous » Sun Oct 04, 2009 9:19 pm

Thank you for posting this survey. . I know last year the "whatever" that was going on with ear, coincided with my first official full-blown relapse in 4 years.
I know the disease was progressing, I could feel things winding down in the various departments, but this one was confirmed via MRI etc. I know also, that somehow at that same time (everything happened all at once!), the vertigo hit me like a ton of bricks. I'm talking the "almost ended up kissing porcelain goddess" type. The kind that you get even when your eyes are closed. The dizzy even laying down type.

Through the miracle of the internet, I was able to find some great how-to videos on Epley maneuvers, which my wife dutifully assisted me with as I couldn't hold myself in that position alone. This brought near immediate relief from the dizziness, and the nausea abated after a few days. But it did nothing for the ringing. It is constant and the same "tune" repeated over and over, and it's worse if my stress or bp is up, without a doubt. Just bending over and getting a head rush can make it get louder.

It was at it's minimum to "no effect" immediately after the surgery and was a welcome relief, ahhh, the silence.

However, after 3-4 days, and I suspect the blood thinners had a role in this, it started to creep back. It was the worst it has ever been, noticeable even with background noise, when my INR was at it's highest, in the 3.5 range, or when my bp is up then it's even worse. In fact, they were still bad on Thursday when I had my INR taken, and due to a coumadin decrease, (which wasn't enough) had expected my INR to be lower, which kinda negates the whole connection of the intensity to my INR. Lo and behold, my INR was actually HIGHER that day. (from 3.4 to 3.5)

As my INR has dropped over the past few days, since I cut the meds in half, it decreases.

So without any advanced medical degree or a scientific study, and having nothing more than personal testimony, oft labeled "anectdotal", I would have to say, and predict, that it will be much more mitigated when off the thinners completely as I previously implicated them, and as it was when walking out after the procedure.

I expect improvement even beyond that already experienced, in all areas, once the follow up and the thinners are done.

Mark.
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Re: Tinnitus and CCSVI

Postby NHE » Sun Oct 04, 2009 9:30 pm

I had bad tinnitus following a whiplash injury where my car was rear ended on the freeway. Describing it as ringing in my ears would be too mild. It was much more like there was a microwave oven running in there. I was in college at the time and used to chew a lot of gum in order to help me stay focused while studying in the library. The gum chewing was actually making the problem worse. Fortunately, a doctor recognized this and advised me to stop. I also had treatment for TMJ which helped.

Years before the accident when I was much younger, I used to have trouble falling asleep on my side due to hearing my pulse in my ear. It sounded like little armies were marching around in my ear. :roll: I still occasionally hear this from time to time when trying to fall asleep on my side. Sometimes it bothers me and sometimes it doesn't. It can make it difficult to fall asleep since the neuropathic pain in my leg and foot is worse when I lay on my back. Sometimes we just can't win!

I don't know if the "marching" sound is related to CCSVI or if it's a normal occurrence. It would be great to hear from other folks on this. I was thinking that it could be related to restricted blood flow but then maybe not.

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Re: Tinnitus and CCSVI

Postby CureIous » Sun Oct 04, 2009 10:38 pm

NHE wrote:I had bad tinnitus following a whiplash injury where my car was rear ended on the freeway. Describing it as ringing in my ears would be too mild. It was much more like there was a microwave oven running in there. I was in college at the time and used to chew a lot of gum in order to help me stay focused while studying in the library. The gum chewing was actually making the problem worse. Fortunately, a doctor recognized this and advised me to stop. I also had treatment for TMJ which helped.

Years before the accident when I was much younger, I used to have trouble falling asleep on my side due to hearing my pulse in my ear. It sounded like little armies were marching around in my ear. :roll: I still occasionally hear this from time to time when trying to fall asleep on my side. Sometimes it bothers me and sometimes it doesn't. It can make it difficult to fall asleep since the neuropathic pain in my leg and foot is worse when I lay on my back. Sometimes we just can't win!

I don't know if the "marching" sound is related to CCSVI or if it's a normal occurrence. It would be great to hear from other folks on this. I was thinking that it could be related to restricted blood flow but then maybe not.

NHE


Omg you brought me back to my childhood, I remember hearing constant pounding in my ears, not sure if it was right or left or both, but it made me think of that movie or tv deal like an intro, where the sweaty arm is hammering down on an anvil. Anyone from the 70's will know what I mean lol.
That's exactly what it sounded like, so when I lay there at night the image from the TV was in my head because that's what I was hearing, but of course being young and not knowing that it wasn't normal, (in fact I think I even mentioned it to my mother once, have to ask her about it), I never did anything with it. Interesting how your post evoked that memory.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Tinnitus and CCSVI

Postby NHE » Sun Oct 04, 2009 11:43 pm

CureIous wrote:Omg you brought me back to my childhood, I remember hearing constant pounding in my ears, not sure if it was right or left or both, but it made me think of that movie or tv deal like an intro, where the sweaty arm is hammering down on an anvil. Anyone from the 70's will know what I mean lol. That's exactly what it sounded like, so when I lay there at night the image from the TV was in my head because that's what I was hearing, but of course being young and not knowing that it wasn't normal, (in fact I think I even mentioned it to my mother once, have to ask her about it), I never did anything with it. Interesting how your post evoked that memory.


How has this symptom changed since getting stents? For example, has it increased, decreased, stayed the same, or don't notice it anymore and haven't for years?

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Postby sou » Mon Oct 05, 2009 3:17 am

Hi.

When in absolute silence, achieved by wearing earcuffs, I hear a constant ringing in both ears. It is not very loud and I have always thought this was normal. Is this tinnitus?

sou
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Postby jimmylegs » Mon Oct 05, 2009 4:55 am

i had the marching pulse at bedtime when i was little too, nhe :) it gave me a nightmare of an army of miniature soldiers coming down the hallway to get me in my room (everything was always out to get me when i was a kid, the house was full of wolves and alligators and stuff, crazy lol)
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Postby Sneaky » Mon Oct 05, 2009 4:57 am

sou wrote:Hi.

When in absolute silence, achieved by wearing earcuffs, I hear a constant ringing in both ears. It is not very loud and I have always thought this was normal. Is this tinnitus?

sou


It could be. Mine really is only noticable in the silence also, throughout the day I don't notice it too much, if at all -- really mostly at night laying in bed or if I walk into a quiet place like my closet. It does seem to get worse when you focus on it, but I know for sure that it started almost 2 years ago and it's what got me to the ENT, too also be told I have had some hearing loss, but this I don't notice.

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Postby AlmostClever » Tue Dec 29, 2009 9:38 am

Can we touch on this again?


I have chewed my nails obsessively for 30+ years. I also chewed gum (about a 1-2 packs a day) for at least 6 months prior to being dx'ed with MS.

Could this possibly lead to TMJ and then possibly to CCSVI and then possibly to MS?

Your thoughts, please! Anyone else chew their nails or gum? I'm stopping now, just in case!


-A/C
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Postby lyndacarol » Tue Dec 29, 2009 10:41 am

Almostclever--Does your chewing gum contain sorbitol? I think many do.

Many people are especially sensitive to sorbitol; it can cause an increased insulin level.

I discovered that my toothpaste and mouthwash contained sorbitol, so I have found new products without that ingredient.

As all know, I think excess insulin plays a major role in MS.
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Postby AlmostClever » Tue Dec 29, 2009 10:48 am

I was thinking about the physical, repetitive motion aspect but I'll check the ingredients for sorbitol. I was also once thinking about all the aspartame from the gum playing a role...
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