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Hyperacusis: Anyone else have this debilitating symptom?

Hyperacusis. I’ve been diagnosed with VM after months of head pressure, sinus pain and an off-balanced dizzy feeling. Initially I had no ear symptoms whatsoever. Recently the symptoms have morphed into 24/7 hyperacusis and it is absolutely debilitating. Literally every sound is too loud and seems to vibrate my brain and make me feel dizzy. Examples, running water in a sink, my family members whispering, placing something down on a table, even somebody’s footsteps from another room! This is driving me crazy and has only gotten worse in the last few weeks. Has anyone else experienced anything like this with VM? I have to constantly keep my right ear plugged to avoid sounds making me feel dizzier. I know phonophobia is common with migraine but this seems so much worse. It is from any sound or vibration whatsoever, not just loud ones. It’s driving me crazy. Please help

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Hi Max, absolutely! It doesn’t have to be loud sounds at all… it’s as if my brain is so incredibly hyper sensitive to every little thing. I had musician earplugs in my purse, in my car, at my desks, by my chair at home, slept with earplugs even. This incredible sensitivity faded over the past few months on Ami but I still wear them specifically at church since the organ just trips my brain into almost a “fight or flight” mode… my heart rate goes bonkers, I get flushed and start shaking, then the dizzies hit.

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Hi Renee. Glad to hear I’m not alone. I’m new to VM and have been dealing with a whirlwind of crazy symptoms. Did sounds make you dizzy or were they just painful to your ears? Glad your symptoms have improved with the Ami. I tried that for a few weeks but just felt worse and had a lot of side effects. Now trying verapamil. How quickly did you notice improvement once you found the right med?

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Hey Max, yes… sounds made me dizzy! For me, high pitch sounds were the worst but I’m sure that can change by individual.
Here’s something that absolutely made me crazed with anxiety and would instantly make me dizzy: staplers. :flushed: No kidding, my coworkers staplers sent my brain into frenzy. We all have those new fangled pneumatic staplers that for some reason we’re my worst enemy!
I am only 5 months into taking Ami but thank God I didn’t have any bad side affects… well, not any worse than I was already feeling I’d say. I definitely had real bad days, but none worse than my average bad day. I started noticing improvement by week 2 (30mg), then through week four (40mg)… these improvements were slight but noticeable. By 12 weeks in, I was very much improved and have continued improving. I have a little way to go still but if this is as good as it gets, I’ve won. Im just grateful for how far I’ve come :raised_hands:t2: I do hope you find relief soon too!

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Yes, it causes me a load of anxiety too! And anxiety only makes the dizzy symptoms worse. Sometimes it feels like my brain is so sensitive that any little movement or vibration will rattle it. That’s awesome you’ve improved so much. I was hoping for better results from ami and feel like I stopped before it might have worked, right around 2.5 weeks. But hoping for relief from this new med and trying to take things day by day

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Yep, I’ve had hyperacusis and it’s not at all pleasant. It’s significantly improved wth time though. The worst sounds were the door alarms on my local light railway. I used to get distortion of hearing on our tube trains (metro) too. The rumble of the train would vibrate. Eugh. That no longer happens thank goodness.

Follow the advice and surely things will improve in time.

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VM symptoms are all about sensory hypersensitivity and your hyperacusis is obviously a rather extreme example. Only time, so far, I’ve had it is during acute attacks where I lie in bed upstairs dreading anybody downstairs opening or closing a door because it echoes on and on as if there are a thousand doors. Same applies to our dog barking, it echoes on and on like a hundred dogs, Away from acute attacks my extreme hypersensitivity relates to light, extreme photophobia (became constant 24/7 late 2015, about a year after MAV dizziness turned chronic) I can be as sensitive to light, any light as you are to noise and appreciate how inconvenient such symptoms are to live with. I can also remember the feeling of the vibrations of my own feet walking rattling through my body and the flow of fuel entering into the tank at the garage causing me to vibrate and causing motion sickness. It’s all sensory hypersensitivity.

Photophobia for me is both a symptom and a trigger and when people talk of trigger avoidance that’s easy peasy - with chocolate, red wine and cheese - but pretty much impossible with light or sound. As the migraine specialist neurologist I saw said when I walked into her consulting room wearing two pairs of dark glasses and a wide brimmed hat on the darkest, wettest winter’s day imaginable, ‘Ah, it’s all gone a bit hyper’. A positive master of understatement she was.

I notice you are on Verapamil and hope it will soon control your symptoms to make life more bearable. The attached Wiki lists loads of conditions that can cause hyperacusis, one of which is migraine. Helen

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Hi Helen, it’s reassuring to know that there are other people out there experiencing many of these same wild symptoms. Your explanation of the hyper sensitive brain makes a ton of sense - and each person can have their hyper sensitivity affect them differently. Extreme light sensitivity sounds horrendous too. Can I ask how long that lasted for you and which medication ended up giving you relief? I believe sound is both a sensitivity and a trigger for me, thus I’ve been walking around with ear plugs in most of the time. My thinking is that while the brain is in its chronic migrainous state, it’s best to minimize any of these sensitivities until a certain preventative med or lifestyle change can calm down the brain. Another interesting note - my hypersensitivity ( and migraine for the most part ) seems to be strictly right sided. My ear, dizziness, imbalance, even brain vibrations seem to mostly only be on the right side. Weird!

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It started in September 2015, was certainly still full on in February 2017 (when I saw a second neurologist who upped dosage), reduced gradually through last winter (2018). It’s not gone completely yet. Considerably reduced as have most other symptoms with a sufficiently high dose of Propranolol. No reason to suppose your hypersensitivity will last as long but, like Propranolol, I think Verapamil is very dose dependent.

I second that.

I think that’s very common. At one time it was a doctor’s aid to diagnosis, it’s so common.
Helen

Wow that is a long time to deal with those symptoms, glad they’ve been improving for you! What dosage of propranolol are you on? I actually take it as well for an unrelated condition but a relatively small dose. Yes I do feel hopeful about verapamil and the plan is to increase next week, haven’t had any negative side effects yet.

Yes I have hyperacusis, it’s a relatively new symptom for me compared to how long some of my other symptoms have been with me.

I started with this about a year and half ago when I developed a whole new cluster of symptoms (hyperacusis, walking on pillows feeling, facial sensitivity, much difficulty in walking to name a few). I’ve had 3 bad episodes of this new cluster each lasting about a month and several much milder episodes.

Thy hyperacusis is a lot as others have described, kind of like a vibration feeling, my phrase for it is “noises are reverberating in my brain.” Some of the’s noises that give me the greatest problem are pots and pans banging, screechy voices, staplers (just like someone mentioned), paper rustling, talking on the phone (not necessarily the other person’s voice, but mine), eating crunchy food, especially when walking), walking and talking at the same time - doing this makes me feel like I will keel over.

I tried explaining this to my doctor and because he thinks I’m “anxious” he assumed this was anxiety and my hyperacusis was the feeling you get when you jump because someone sneaks up on you and says “BOO.” I couldn’t get him to understand it’s not at all like that.

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You need a new doctor, probably a neuro-otologist. We are not creating these symptoms through anxiety. They are real, physical phenomenon.

And for the record, I’m highly sensitive to light, sound, smell and motion, and sometimes touch. It’s a strange little superpower to hear your kids whispering from a floor away or hear every side conversation in a public meeting. Knowing what’s in the garbage is just cruel. Seeing every leaf individually blowing in the wind is either dazzling or maddening depending on where my thresholds are.

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Rather unusual to be on both Propranolol and Verapamil at the same time. No doubt doctor has a plan. Both very dose dependent. Doubt you’ll see much great improvement until you hit an effective dose and also allow some time. Neither drug is a fast worker. Could be months rather than weeks. I found no side effects on increase at all as generally occurs with antidepressants. They seem to be kind drugs that people sometimes react to very early on or are OK with them. Helen

By now most of us have probably learned that some doctors go-to response for a symptom to which they have no explanation is “anxiety”. And of course we’re anxious, who wouldn’t be with chronic Mav symptoms?! However it’s important to note that the symptoms are what is anxiety-inducing, and not the anxiety inducing the symptoms.

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I know, the propranolol is not migraine related. I take low doses (10-20mg) several times per day to control my POTS, another lovely chronic condition. And the problem is when propranolol is taken in higher doses which might be effective for migraine, it’s usefulness for POTS is diminished. So I’m out of luck as far as one med to cure all. However if that and verapamil affect my heart rate too much, I have a prescription for topamax which I can try.

Amazing how these drugs used ‘off label’ help so many different conditions. Propranolol and POTS, eh but only at low dosage. Fascinating. You seem totally up to speed with your own situation which is great. And resolved you will probably need a combo of meds. I’m sure you’ll soon have a treatment plan lined up. Hope it goes well for you. Helen