I had a very weird thing happen today. I took a shower and got water in my ear and when I got out, as I was combing out my hair I could hear the brush strokes inside my head. Then as I started walking, I could hear my footsteps amplified inside my head and same thing when I tapped my head it sounded like it was all inside my head or like I was underwater or something. It was really amplified. I started to panick never having had this happen before and though this might be some strange new symptom of some really bizarre disorder! :shock: I could feel the water in there when I moved my head around and finally figured it was because of the water but I’ve had water in my ears before and never had that happen. What the heck is going on? I know I am more sound sensitive and it has been a bit of an issue the last couple days, so could this be another weird MAV symptom? BTW, when the water came out so did the loud amplified sound.
I’ve heard somebody talk about something like this the other day. It wasn’t about MAV, but something else, of course I can’t remember what. let me PM him and see if he thinks it’s the same thing.
hi everyone. my name is Boslee. i’ve been a member for a while now but i don’t post because there is too much reading to do, and visually, i have a very hard time following all of the posts so i have been doing some PM’s with Jenny, Julie, and a few others for a while now. but julie asked me to take a look at this post, so i just wanted to jump in and say that these symptoms are classic of superior canal dehisence (SSCD) as i was evaluated for this as part of my MAV and it was decided that SSCD is not causing my symptoms. But classic symptoms of SSCD are being able to hear your own voice inside your head, hearing your own heart beat really loud in your ears, hearing your eye balls move, hearing your footsteps really loud, hearing your hair screetch when you brush it, getting dizzy from certain high and low frequency pitches (tullio’s phenomenon). for those who don’t know, SSCD is a piece of bone missing over the semi-circular canal, creating pressure fluctuations between the ear and brain, creating dizziness, autophony, imbalance, vertigo, and other strange sensations. The only way to correct the situation is surgery, but the procedure is very successful, and the symptoms do get better.
but since the symptoms were experienced after getting water logged in the ear, it’s possible this was some sort of transient effect created by the clogging of the ears, but if it happens again without any water being present, then i would get evaluated for SSCD. if the symptoms never come back, it might have just been an odd situation with the water creating these effects.
if you need be evaluated for SSCD, i would only recommend Dr. Minor at Johns Hopkins in Baltimore, MD as he is the man who discovered SSCD, and has the most experience with it. He only recommends surgery when he is 100% sure that SSCD is causing the problem. He uses a combination of high resolution CT scan, VEMP test, bone conduction audiometry, and a special exam with goggles that look for sound and pressure-inducecd eye movements. A good plus side is that he can also help to rule out other inner ear problems in the process as well. But SSCD is his specialty. i hope this information is useful. oh, one other thing. SSCD, if that’s what this is, is not dangerous. It’s like MAV, it’s just makes you dizzy But there is no medication for it. The hole must be closed. but if you don’t experience it again, perhaps the water created this effect by clogging the eusacian tubes, which can create that “autophony” and make you hear that way. so i COULD just all be an effect, BUT, if it happens again in the absence of water, i would suspect SSCD. good luck
Thanks Boslee, I knew about SSCD and I really hope it’s not that. I have had the weird voice in my head before when my eustachian tubes were clogged and I know it was that because it was right after blowing my nose and it would last for a minute until the eustachian tubes corrected itself. And all these incidences were without dizziness if that helps at all. I hope this was just an isolated incident. If it happens again with no water in my ears then I’m off to your specialist!
But my dizziness has always mimicked my dads, we have the same symptoms and he has no sscd. Unless I have it on my own! :shock:
Also, I’ve had two MRI’s would that show anything? I’m a little freaked out now.
Okay, I just talked to my husband about it and he said he has had the same thing happen to him after he is done swimming. I hope he’s right because I am a little nervous at the moment.
I did look up SSCD and when I read the symptoms, I don’t really fit in. For example, I don’t get dizzy with exertion and pressure changes. I don’t get dizzy from the sound of my own voice, although loud noises bother me they don’t make me feel any different. I guess they are suppose to if you have SCD. Also, I am a very active person, I ride horses a lot and run, bike, ect… wouldn’t I notice I would be worse after these activities? According to Dr. Hain’s site I would be but I would be interested in hearing anyone elses opinion on that especially someone who might have SCD.
Plus what about my severe light sensitivity and the pins and needles on the left side of my face when I get the dizziness? That has to still be the MAV you can’t get that with SCD, right? What if I have TWO conditions, aaaah!!
BTW, I have had all the balance testing done. Don’t think I had VEMP but all the others including EcoG. Please tell me I still just have MAV!! (Not that it’s any walk in the park either) :x
All this talk has me thinking of reaching for the xanax…
yeah, that sounds all MAV to me. i get the same pins and needles on the left side of my face, as well as the light sensivity, the light problem is 24/7 for me. i’ve actually had the same ear symptoms with chronically open eustacian tubes, which happened to me once a few years ago. normally mine get closed easily. so, looks like you got it sorted out, and it was nothing to worry about after all
I actually do have dehiscent semi circular canals. Its bilateral - both ears - lucky me. The left has been repaired. Notice however I didn’t say I have SCDS. When my symptoms failed to resolve after they repaired the dehiscence in the left ear they (Dr Minor and other “experts”) decided that the dehiscences were most likely not the source of my problems. I started treatment for migraine this Spring and I’ve had a dramatic improvement, so I’m thinking Dr Minor was right. I never did really have any of the classic SCD symptoms. Anyway, if these symptoms came on suddenly when you got water in your ear and disappeared later I’d say its very unlikely that they are indicative of SCDS. Most SCDS report that the symptoms either come on very gradually over years or appear suddenly due to a traumatic event (ie knock on the head, etc.) and never disappear. Once the tegmen (layer of bone seperating the inner ear and the inside of the skull) opens up (either gradually or suddenly) it doesn’t close up again. If you are concerned get a hi res CT done at someplace that knows how to check for this condition. Its a very specialized scan and John’s Hopkins has the highest resolution and most refined technique. Honestly, if you are going to have it done that’s where you want to go. Their technique is the gold standard and few other institutions are going to do as good a job of imaging the bones over your inner ear.
Although I think it’s unlikely that you have SCDS, in some ways it a better diagnosis to get than than MAV. Dr Minor has a pretty good track record of fixing these things. Its a major surgery but I got through it and I’m fine. Most people need a few months of vestibular rehab after the surgery and then get on with their lives. Many MAVers of course also get good control of their symptoms and move on, but many also struggle with MAV for a lifetime.
Final thought. Migraine can cause inflamation anywhere in the head including the inner ear. Inflamation in the inner ear could cause almost any bizaare auditiory and/or vestibular symptom. That’s one of the challenges with MAV, it can present with such a huge array of symptoms.
thanks for that Chuck. Did Dr. Minor do the surgery on your left side or did you have it done somewhere else? Dr. Minor usually doesn’t do the surgery unless he is 100% sure that SSCD is causing the problem so i’m a little disappointed to hear that. how aweful it must have been for you when you went through all of the recovery needed to get through that only to still have the same symptoms when all was said and done. did you have just a resurfacing done or did you actually have the canal plugged as well? If Dr. Minor did it than you got the plugging. But a few doctors have done just the resurfacing, and gotten good results, but failure rate is high in general.
Just out of curiosity, what were your “pre” surgery symptoms that prompted the surgery? i’m curious if they bear any resemblance to mine. i went to Dr. Minor because of some pressure problems I was having, and assumed it has to either be a PF or SSCD. Dr. Minor told me that on CT scan, it appears that I have it bilaterally as well, but he couldn’t be 100% sure, but my VEMP was stone-cold normal, and I display no classic signs of the condition, so migraine was the diagnosis. He couldn’t get any sound or pressure-induced eye movements on frenzle goggle evaluation either. with symptoms as horrible as these he said, he would except a gaping dehisence visible on regular, low-resolution CT scan lol. He then went on to tell me that giving me surgery right now would worsen me, and went on to refer me to a migraine specialist.
what migraine medications have given you positive results chuck? I am doing Topamax right now, which has relieved a very good amount of the motion intolerance i was having (my ability to process speed, like being able to walk and browse the isles in a grocery store at the same time), but i have about another 40-50% to go on that, and unfortunately it hasn’t touched the dizziness yet, so i’m trying to get the medication higher thanks again
Dr Shelton at the University of Utah did the surgery. Resurfacing only - no plugging. Saw Dr Minor when the symptoms failed to resolve post surgery.
Symptoms were episodic vertigo and chronic imbalance, high frequency tinnitus and aural fullness. None of the halmark symptoms of SCDS. They could never trigger dizziness with either pressure changes or loud noises. My vemps are also within the normal range. Threshold is near the bottom of normal on the left but the amplitude is right in the middle. In short neither my symptoms nor test results (with the exception of the CT of course) indicated SCDS. Dr Shelton is very conservative - I pushed for the surgery. In retrospect it appears to have been a poor decision on my part but my career was collapsing from under me (professional pilots are NOT supposed to have dizzy spells) and I was desperate. The good news is they got in and out without making any omlets. Dr Minor was really suprised that the 3-D eye movement test indicated that my left superior semi circular canal is functioning normally after the surgery. He said that even with a resurfacing procedures most of the function of that canal is usually lost. I can only attribute this to Dr Shelton’s skill as a surgeon.
I’ve made a number of anti-migraine life style changes. Cardio exercise 4 times per week, migraine diet, etc. The symptoms really dropped off dramatically when I started Verapamil. I seem to be completely free of all the acute symptoms. No vertigo spells - not even dizzy spells really. Some annoying imbalance still but that may even be gradually improving.
I look at it like this. We know that roughly 1 person in 200 has dehiscent semi circular canals. We also know that the incidence of symptomatic SCDS is nothing like 1 in 200. Maybe 1 in 20,000 - that’s a wild guess 'cus I can’t find any good statistics on it. So it stands to reason that a person like me (and you) with dehiscent semi circular canals stands a roughly 1 in 100 chance of developing symptomatic SCDS. Now roughly 20 out of 100 normal people will develope some sort of balance disorder at some point in their lives. So if a person presents at their local clinic with a balance disorder that is not characteristic of SCDS, and a CT indicates that they have dehiscent semi circular canals, it is extremely likely that the dehiscence are incidental and the symptoms are arising from somthing else. Just wish I’d thought all this through before I insisted that they open my head up - oh well, easy come easy go.
Sorry you’re in this mess but I’m gratified to find some one in a situation so similar to my own. What are your symptoms BTW?
Best of luck
Thank you Chuck and Boslee, your posts have been incredibly helpful to me and hopefully to others who might be worried about this themselves. I think it is normal for us to wonder about our diagnosis at some point and begin second geussing, especially if someting new and alarming pops up that doesn’t quite fit the criteria of our diagnosis.
However, what I experienced could fit if I think it about it in a broader perspective. I know that I have phonophobia quite often and I would imagine that it does not take much to amplify sound at this stage in my disorder. Also, I found this article helpful en.wikipedia.org/wiki/Occlusion_effect as it could explain what happened to me when the water was way down in my ear canal and resting on the ear drum.
I have a tendency to hit the panic button when it comes to my ears now. Also, that incident occured in my ‘good’ ear rather than my problem ear. don’t know if that makes a difference. Anyway, I feel a little better and I think I will try and relax. I’ts just that one disorder is hard enough to come to terms with, I don’t need two. :o
Back in October - December, when my MAV symptoms kicked in but before my diagnosis, I had ear fullness with periodic episodes of the amplified sounds you described. The doctors originally suspected I may have Meniere’s, but they have since ruled that out. The weather was changing significantly back then, so I suspect that may have been triggering some of the symptoms. I have not had the fullness or amplified sounds since December, although I do still have phonophobia. I have also experienced the amplification when I had water in my ears in the past. I just thought I would share my experience in hopes it would provide you some peace of mind. I don’t think it is anything to worry about since it went away when you got the water out. It seems like we always have crazy things going on! :shock:
wow chuck, how aweful that must have been when none of the symptoms resolved after all that recovery. but thank god you retained your canal. i think that’s the most important thing that came out of that, besides ruling out SSCD.
actually, i have 2 of your symptoms lol. i have the constant ear fullness and the chronic imbalance. unfortunately, i have MANY more symptoms on top of that, probably too many to even list, but most of them are related to “sensory overload”, which makes doing almost anything a real chore. the topamax is helping, but i’m afraid i need more.
Marci, how was your miniere’s ruled out? i realize that this is a very common mis-diagnosis, and symptoms alone are probably enough to do it, but was an ECoG test done by any chance? Dr. Hain is my doctor, and i have been complaining to him about the ear pressure in my ears, probably related to the migraine, but he is sending me for an ECoG tomorrow just to be sure. i will have the results same day. it would be a real mess if the results came back very high. one cannot take a diuretic on topamax. i would have to either come off the topamax to get on a diuretic, or figure out how to do a “dual” treatment. the topamax is keeping me sane, so i don’t want to get off it. we’ll see what happens.
thanks again Chuck for your story on SSCD.
The doctor’s decided it was more likely migraine and not Meniere’s because my hearing test and ENG were normal and many of my other symptoms point to migraine. Thinking back, I don’t remember if they ever officially ruled out Meniere’s, but through a course of events I ended up with the neurologist who diagnosed migraine. The first nurse practitioner I saw at the onset of this episode suspected either Meniere’s or migraine. My GP suspected Meniere’s and sent me to an ENT who wasn’t convinced. He ordered the hearing test and ENG along with a lot of blood work. I ended up with the neurologist after a trip to urgent care precipitated by the ENG. The nurse practitioner at urgent care felt I needed to see a neurologist instead of an ENT. By the time I saw the neurologist, but ear symptoms had cleared up with the exception of phonophobia. After a few more tests, he diagnosed migraine. I believe he made the correct diagnosis for me based on the research I have done.
You mentioned diuretics. My GP put me on them when she thought I had Meniere’s. I found they sometimes make me feel better. My theory is by lowering my fluid volume and therefore my blood pressure, they help to relieve some of the pressure on my blood vessels in my brain. Just a guess. I get the same result by following a low carb diet. Unfortunately, I had to give up both when I started the Topamax, but I plan to try the diet again now that I am off of the Topamax.
I did not have an ECoG. Good luck with that tomorrow. I hope you don’t have Meniere’s.
— Begin quote from “Halfthere”
I have a tendency to hit the panic button when it comes to my ears now.
— End quote
You wouldn’t want what I developed–hyperacusis.
Also, I can’t stand to talk for very long since the sound of my voice drives me crazy in the back of my skull.
In the last 3 weeks my symptoms have accelerated horribly.
thanks Marci. my ECoG is scheuled for noon, so we will see what it says. According to Dr. Hain, the test needs to be done correctly and be interpreted correctly, and it’s not 100% diagnostic nor specific, so it really needs to be used in context with the whole picture. i certainly don’t display any classic symptoms of the condition, but better safe than sorry i suppose
I had the EcoG done and it came back normal along with the rest of my tests results. However, everything came back normal while I was not symptomatic, as I expected they would. I wonder if they might have been abnormal when I was still symptomatic? Why don’t they do these things while the patient still feels bad? Back when I was still having symptoms I had my first ENG which came back that I had a 47% loss in my right ear. Well, apparently that was not permanant because fast forward to a couple months later when I had my second one done while I was asymptomatic, and it showed normal. Anyway, I have since come to understand that migraine can show loss of function on an ENG and the old literature says the ENG results would be normal in migraine patients. I don’t see how they can back this theory up, I mean, if you are experiencing enough inner ear trauma from vestibular migrane, then obviously results would be abnormal on ENG.
Anyway, I got ahead of myself. My point is, I’m not sure how useful the EcoG actually is if you have no symptoms at the time they do the test. And same with the other balance tests. I passed all of them with flying colors when I was tested in January, but I know for sure if they had done the same tests on me in October or November, I would have failed miserably.
Good luck Bos, keep us posted.
Sorry that you’re still on a fast downhill slide Heather. That hyperacusis about put me in he insane-asylum. It may not have been quite my worst symptom but it was the most crazy-making. At first I would try to get away from it by going into closets - didn’t work. In fact, you wouldn’t believe how noisy closets are. Zoloft and/or Neurontin took it away.
ECoG was dead normal. interesting what you said about being symptomatic and producing abnormal results. i guess for me, it depends on what you could call “symptomatic”. both my ears are extremely “full” all the time, so in that regard, i got the test done today fully symptomatic. but i wasn’t having one of my attacks where the dizziness is increased (no spinning vertigo). but even still, during these attacks, i have absolutely no additional ear symptoms. so i am satisfied with that result, and i would expect it, based on my symptoms. The test isn’t 100% accurate, but what test is lol? thanks
Either way, normal test is a good thing. One more thing out of the way.
Thats good news. Yeah, if your ears are feeling full, that would be symptomatic. Any symptom at all is what I meant. And its good news for the rest of us too. Full ears don’t necessarily mean hydrops! I have the full ears too. It seems to be either one or the other, ugh!