Hi all,
This post is mainly my concern about sound sensitivity. I realize sensitivity to sound is an issue for many…but is it chronic? I have it nearly every day. Not just loud sounds…but even my hubby’s voice (and he’s soft-spoken)… In other words, it’s not during an “attack” per se. I’m having trouble sorting out my ear symptoms…I’m dizzy off and on all day, brain fog, dull head pressure and then it gets worse and dies down again, ears get full (but mostly just my right), tinnitus is like really fast crickets…seems like it might be in both ears at times. The sound sensitivity is so awful- sounds so tinny- it actually brings discomfort to my ears… I’m considering some ear plugs but don’t want to isolate myself from sound. I have light sensitivity too… All my symptoms are present daily at some time or another…they come and go. Is anyone in this boat with me?
thanks,
shell (I’m new here btw, no dx yet but trying to sort it out–going to neurologist soon)
Hi, Shell. Forgive me if I’m repeating comments here that I made in response to your other post. But, yes, the noise sensitivity (hyperacusis) can be really bad for me, too. It lasted about a week in December, and I couldn’t stand the sound of my own voice or even eating. I wore an earplug in one or both ears to help with outside noise. (I found that even just setting it “outside” the ear canal helped tone things down.) The sensitivity slowly improved, but still on any given day, I can have the problem or develop it as the day wears on. Any sudden click, such as opening a soda can or creaking in the floor, literally makes me jump. I can’t tolerate certain instruments in music, and even some people’s voices on TV have me reaching for the volume control. My dizziness waxes and wanes – with this Virginia winter, it’s been more waxing than waning – but I have it at some point every day. My tinnitus also sounds like crickets or a ruptured radiator hissing, so I’ve started telling myself that I’m just listening to white noise! I have found, through trial and error, that what I eat can increase the volume of the tinnitus, especially caffeine, too much sodium, and aspirin products.
I can’t remember if you’ve seen an ENT or neurologist yet, but that’s a good place to start. Hope you get some answers soon. Take care.
Thank you for both of your replies! I’m sorry I haven’t focused enough to reply to my original post yet. I’m a full time student and this (whatever “this” is) is REALLY causing me to fall behind. I do wish I had a formal dx. I’ve been to ENT and GP…trying to get into neurologist hopefully by next week! If it weren’t for the brain fog I could focus more on studies–because it seems when I try to keep my mind occupied, the other symptoms ease or at least I’m not being super sensitive to them? Anyway, thanks again. Sometimes it helps just to hear you’re not alone…and not crazy! :? Where in VA are you? (area I mean) I’m southwest, near TN.
Take care yourself,
shell
Being a full-time student is tough enough without the added complication of vestibular problems. As far as the condition goes, you’re not alone and certainly not crazy!
I’ve had migraines with aura since 1998 and what I refer to as “chronic vertigo/dizziness” since 2001. I’ve seen three ENTs, four neurologists plus a neurosurgeon, and just about every other specialist out there. Finally in January, 12-15 years after all this began, my ENT finally said, “Meniere’s until proven otherwise.” I’ve been doing a lot of research and I have no hearing loss, so I think it’s MAV instead. It seems all my doctors are extremely hesitant about putting a label on anything. I hope you get a specialist who’s knowledgeable about MAV and will give you a correct diagnosis and treatment.
I’m in Lynchburg, central Virginia. Keep in touch.
Shell
Empathise with your sound sensitivity! It used to drive me nuts! Mine was chronic in the early stages. Got some good quality ‘noise cancelling’ ear phones & used my ipod where I could control the level of sound. Somehow cancelled out the tinnitus too. Meds eventually helped to a certain extent.
Barb
Elswyth,
Oh I’ve been to Lynchburg a few times! It’s a pretty area- I went to visit LU there with some youth. As you know, from my other posts, it isn’t that I “want” MAV…of course I definitely don’t “want” Meniere’s either! I’m sorry you’ve never gotten a definitive diagnosis…I’m worried that I won’t have much success because where I am is so rural…I am at a loss of where to go next. My GP is letting me down :x I may have to freakin start all over. Anyways, about the sound…yes I’m going to get some plugs for the bad days–cotton doesn’t cut it.
Thank you Barb, for empathizing! I’m glad yours has gotten better–I will hold onto that hope. What meds do you take? I do try to keep something on to tone down tinnitus too.
Thanks to both of you. Gosh, I am so glad I found this forum! 
Take Care,
Shell
I get intermittent hyperacusis in my left ear normally. It’s like the muscle in my ear twitches and pulses in response to certain sounds. A small bang or a high pitched noise or even talking on the phone can cause it to thump inside my ear. It’s really annoying but it comes and goes x
Shell,
I’'ve been on Dothep for a year which has really helped with the migraine headaches - the visual vertigo is an ongoing problem! At the moment I’m trialling Topamax - hoping to prevent the visual vertigo.
Has your GP prescribed anything for you? Maybe print off some of the literature re evidence based preventative meds - your doc may be willing to start you off on something if you have a long wait for a neuro appt. Even some Valium might help! Have you read Dr Buchholz’s book “Heal your Headache” - It includes the migraine diet.
Barb
Hi Shell,
I am also often very sensitive to sound but it comes and goes, thank goodness. I have tried using earplugs but didn’t like the
feeling of being isolated, as you mentioned. I suffer with tinnitus in both ears, my right ear is worse and this almost drives me
crazy!! I have a lot of ear fullness and my ears sound like I have dozens of cicada’s stuck inside them. The only relief I have
found is to put headphones on and listen to music which basically drowns out the tinnitus. I’m not sure if it’s great for my ears
but at least it gives me some relief :).
I have suffered with VM/MAV for over 20 years and have all the great stuff that comes with VM but I was only diagnosed with
this in August 2012. After years of seeing Dr.s, specialists etc. and being told I had sinus infections, virus’, it was all in my
head, back to sinus infections everytime I saw a Dr but CT scans always showed my sinuses to be clear and fine.
Anyway, I’m so grateful to have finally been diagnosed by a Neuroligist with VM. He has been trialling me on medication, none of
which has been successful so far but I am hopeful we will eventually find the right one for me.
I’m sorry to have rambled on, this was only meant to be a very brief post but I hope some of this has been of some Shell and always
remember you are not alone. There are many of us on here who are only too happy to help in any way we can.
Take care.
Annie
Hi,
Thank you all for your input. Oh the lovely symptoms we share 
I have a new related question about phonophobia–with any of your sensitivity–do things sound “tinny”…like you’ve got to turn up the bass and turn down the treble? Just curious, because that’s what mine usually feels like…and it’s worse if it’s a bad tinnitus day. And does your sound sensitivity lasts for days? Mine does.
I don’t know what I’d do without this place and the good people in it to bounce things off of!
Peace,
Shell
When not doing well, don’t be afraid to wear sunglasses and earplugs, hopefully withe right drugs and diet you will be able to tolerate things better in the future…good luck.
— Begin quote from ____
do things sound “tinny”…like you’ve got to turn up the bass and turn down the treble?
— End quote
My sensitivity doesn’t change the actual sound of things. It just magnifies all noises. If someone drops a utensil on the granite counter top in the kitchen and I’m at the other end of the house, it sounds like it’s right at my ear. These episodes seem to last for days, but the sensitivity gets better after a night’s sleep and slowly gets worse as the day wears on. On better days, I don’t notice it at all.
Hey:)
Sorry to hear so many also deal with the sound sensitivity! Thanks for all of your stories b/c it really helps me to hear how others cope with it.
I finally figured out a couple months ago that sound is one of my biggest triggers, too! I can go from feeling really good…almost no symptoms, to falling over/head fog/stuttering speech problems in a second if I hear the wrong sound (especially certain lawn equipment, grinders, coffee frother, loud voices, baby cries, crowds, grocery store “beeps” at checkout, etc). Sometimes I think my own voice does it, lol!
I agree about not using ear plugs too much b/c I read it can make you more sensitive to sound. I have found that listening to music with ear buds will help me get through the situations I HAVE to be able to walk and talk or am in a crowd. I can also go running and do the elliptical now which was impossible 2 months ago! I thought it was turning my head or walking that triggered symptoms, but now I realize that I was turning my head b/c I heard a sound, then would fall.
I take the music off or turn it down asap, and try to make sure I don’t surround myself with too much silence.
I have been reading about “pink noise” therapy for hyperacusis, and wonder if it has a place in vestibular migraine. Since my hyperacusis occasionally goes away completely, and varies based on hormones or other triggers, would that kind of therapy work? Does that kind of therapy only work if there is actual damage auditory pathway? I have been alternating with a pink noise app on my kindle sometimes, and it’s a least more gentle on my ears than loud music. I was worrying about damaging my hearing with the loud music!
I need to find an ent/audiologist that deals with vestibular hyperacusis and see if they think it would help.
Luna,
Any updates?
Light and sound seem to be my biggest triggers; oh, and busy visuals. I’d never realized before how overly bright and noisy my environment is, so, after a string of awful days, I got ear plugs. They’re made for musicians and have an open tunnel (so they don’t plug you up entirely), so I’m hoping they help. It’ll sure beat having rolled up tissues coming out of my ears:)! Still have to deal with other sensitivities…any good results?
Lisa
These helped! Used them during a fun noisy weekend in Miami; gotta go to a concert to really test them out:)! Still had a few dizzy moments, but at least sounds were bearable; I just put them in when I felt they bothered and voila!
great news about the earplugs If it’s any help, have noticed that this is one symptom that does sometimes improve with meds
Lyrica (pregabalin) at low doses (50mg) took it away almost completely for several months. Came straight back when I stopped tho…
Lisa,
Sorry for the late reply…I have been off the site for months. I just needed to step away from thinking about MAV all the time.
Strangely, I got MUCH better over the summer. I rarely had sound and light sensitivity, and was able to run, shop, go to crowded places without earplugs/music/pink noise playing. I thought it was because I started the progestin only pill, and it seemed to be the just the added benefit to help control hormone fluctuations. Ovulation and period times always made me the worst.
The last few weeks it is all back again…very sound and florescent light sensitive. I am wondering if my summer of improvement was just because things slowed down a lot with the kids off school. The back to school rush and extra stress in the morning and evenings I think set me back.
How are you doing? Ear plugs working or still needed?
Luna, Has your doctor evaluated you for Superior canal dehiscence syndrome? I know many with this have an associated tullio phenomenon, a sound-induced vertigo.
quote=“Luna”]Hey:)
Sorry to hear so many also deal with the sound sensitivity! Thanks for all of your stories b/c it really helps me to hear how others cope with it.
I finally figured out a couple months ago that sound is one of my biggest triggers, too! I can go from feeling really good…almost no symptoms, to falling over/head fog/stuttering speech problems in a second if I hear the wrong sound (especially certain lawn equipment, grinders, coffee frother, loud voices, baby cries, crowds, grocery store “beeps” at checkout, etc). Sometimes I think my own voice does it, lol!
I agree about not using ear plugs too much b/c I read it can make you more sensitive to sound. I have found that listening to music with ear buds will help me get through the situations I HAVE to be able to walk and talk or am in a crowd. I can also go running and do the elliptical now which was impossible 2 months ago! I thought it was turning my head or walking that triggered symptoms, but now I realize that I was turning my head b/c I heard a sound, then would fall.
I take the music off or turn it down asap, and try to make sure I don’t surround myself with too much silence.
I have been reading about “pink noise” therapy for hyperacusis, and wonder if it has a place in vestibular migraine. Since my hyperacusis occasionally goes away completely, and varies based on hormones or other triggers, would that kind of therapy work? Does that kind of therapy only work if there is actual damage auditory pathway? I have been alternating with a pink noise app on my kindle sometimes, and it’s a least more gentle on my ears than loud music. I was worrying about damaging my hearing with the loud music!
I need to find an ent/audiologist that deals with vestibular hyperacusis and see if they think it would help.
Hey KennedyLane!
I have looked into it, but it didn’t seem to fit exactly. I have never had nystagmus, and my neuro-otologist said definitively that it was not a peripheral ear disease, but rather something originating from the CNS. Unless it is a trigger for my MAV symptoms, then it wouldn’t fit. I get too many other typical MAV stuff that wouldn’t be explained by SCD.
However, it took me 7 months to recognize that sound was a huge trigger for me (then florescent lights, too) because for months there was hardly any break in my symptoms. Now that they are episodic I can pinpoint my triggers much more easily. I think it is worthwhile to head back to the neuro-otologist to see if any further testing would be a good idea.
Thank you for the suggestion…it’s something I’ve tossed around as a possibility a few times, but discredited b/c I don’t have nystagmus or oscillopsia.
I know this is an old post but just wanted to add my experience. During the days/weeks when my VM is particularly bad i am sensitive to sounds. Not loud sounds, just certain sounds. The click of a lock on a door, paper or plastic rustling, and the sound of someone speaking if they’re in the same room as me increases my dizziness. My own voice increases my dizziness. I can’t even say a simple sentence or listen to someone string four words together without feeling more dizzy. It’s absolutely ridiculous how limiting this condition is.