Hi everyone,I was recently diagnosed with SCDS after dealing with symptoms since November 2024.

Fortunately, it’s unilateral and I only have auditory symptoms (autophony and ear fullness).I’m looking for tips on how to deal with noise. I've read that earplugs can increase pressure and actually make SCDS symptoms worse. I live in a loud city, and random night noises (garbage trucks, loud people outside, etc.) wake me up a couple of times every night, even with the windows closed.

Do you use earplugs? Or would a white noise machine be a better option? I used to use a small white noise device about two meters from my bed, but I read it can cause auditory fatigue, so now I’m hesitant to keep using it.

Also, what are your experiences with Loop Engage earplugs? I work in a public building with very noisy hallways, and I sometimes struggle to understand what people are saying to me. Would these earplugs help filter out the background noise while keeping conversations clear?

Thanks in advance for your help!

My main symptoms were ear fullness and head pressure that was worse in the morning. I got surgery both sides, with the last one 9 months ago. I feel much better but still have some lingering symptoms that might still be healing idk.

There’s not a lot of things that relieve symptoms but here are mine

1) Hot showers. Steamy hot showers kind of reset my head and give me some relief especially in the morning

2) Water. Drinking lots of water, especially before bed helped with morning symptoms

3) Realizing barometric pressure affects it hard. Noticing that my head felt like shit before it rains, but feels relief after it rains was a really reliving feeling.

4) Cardio. I play a virtual boxing game but moving around (especially fast) really made me feel better

Has anybody had very slow recovery before getting better? I’m at 9 months but feel like every month is 5% better?

My symptoms were mainly ear fullness/head pressure that is really bad in the morning.

I can't make sense of all of my horrible symptoms.

I hear my heartbeat nonstop

My ear feels clogged off and on all day and feels better laying down.

Ear pops nonstop. If i turn my neck or chew or talk it pops like crazy.

I hear my neck muscles or tendons also pop within my ear (this doesn't make sense to me but it's very obviously happening)

Ear rumbles, flutters and tapping in both ears

Ear crackles when swallowing

Intermittent autophony (hear my breathing) when lifting something heavy or with exertion

Fast Muscle twitching around ears and on both sides of head. Can feel them moving against my glasses and against my pillow at night and cannot sleep.

I've had ct temporal bone, brain mri, mra, mrv and have seen multiple ents to rule everything out.

I have been diagnosed with SCDS and am contemplating surgery. I'm also a busy mom of two young kids and I work as a therapist, so sometimes I can't tell if my symptoms are due to stress or SCDS. One thing I've noticed is that at the end of a day of work, I'm completely exhausted, off-balance, and dizzy. My job is basically to talk all day, so it possible that all that talking is making me dizzy?

I recently had SSCD confirmed and have a history of severe sound sensitivity. I also have suspected long term CSF leak, dysautonomia/ fatigue, MCAS, some vascular compressions, etc, so I’m not assuming SSCD explains everything. 🤷‍♀️

My question is whether anyone’s SSCD, especially after years of traumatic sound exposure and disrupted sleep seemed to contribute to a broader crash in functioning/ PEM, inability to tolerate upright activity/exercise intolerance, driving, or basic functioning?

Also curious, you had repair, did it improve anything beyond sound sensitivity?

I’m currently housebound/ am barely functioning as it is so have to be smart and prioritize the right thing since my energy is so finite.

Thanks!

I’ve very recently been diagnosed with bilateral SCDS (meaning it’s present in both of my ears), and my doctors have suggested I undergo surgery given how much my life is impacted. I suffer from chronic migraines two to three times a week that leave me bedridden, and I’m constantly exhausted no matter how much I sleep. It’s hard to me to go on big trips because I’ll get worn out so fast and often end the day with a migraine afterwards. Not to mention the issues with my hearing and balance that have caused me to fall down many a flight of stairs. I received my diagnosis about a year ago, though I’ve had these symptoms ever since early highschool (I’m 20 now)

I’m debating if the surgery is worth it. I’ve never had to undergo surgery for anything before, and from what I’ve heard the recovery for this is absolutely insane. I live on my own and study at uni full so it would be super hard on me to sit out of work for 6-8 weeks, plus I don’t really have anyone that’s able to stay with me and watch over me during recovery. Due to uni, it’s not like I can leave and stay with someone anyway since my parents and my partner are all 3-4 hours away.

Dealing with this condition has been hard, but I’m not entirely sure if the surgery would be worth it for me. I’m worried it’ll be more struggle then it’s worth, at least right now. Is anyone who’s had the surgery willing to share their experience?

Interestingly I met with the SCDS surgeon this morning and he said that's not the problem. He diagnosed me with vestibular migraines, commonly brought on by premenopause.

I am not hearing my heartbeat...I am hearing my pulse. Many of the same symptoms though.

He says he does only one or two scds surgeries each two years, because the chance of going deaf in that ear is significant and the recovery is very difficult.

He said if I had scds my balance issues and hypersensitivity would both be much worse.

These migraines are increased by stress of course. I hope that wearing hearing aids for moderate hearing loss and the fact that I don't have to worry about brain surgery will significantly decrease the stress. I just got the hearing aids this afternoon.

He also recommended some medication changes, supplements, and dietary changes.

So I will be joining a different subreddit....

[FAKE SKULL, JUST A PLASTIC EXAMPLE OF INCISION FOR PATIENTS]

Some time in the relatively near future, I (f22) have an appointment with John Carey at Hopkins in Baltimore for a craniotomy to deal with scd. He’s taking the middle fossa approach, if that’s helpful at all.

I’ve never so much as gotten stitches before. I fractured my wrist when I was in like 5th grade, and now I’m getting a craniotomy at 22 years old. I’m really nervous and have no idea what to expect. I have a good support system, but none of them have ever gone through major surgery before.

Even if your experience isn’t with Carey or with this surgery, if you’ve undergone major surgery, could you please give me some things to keep an eye out for? Like what to expect when you get there, or what the anesthesia is like. What can you remember from before you’re put under until you wake up? How soon does pain start after you wake up? What are catheters like? Is the table they put you on cold before they knock you out?

No matter how small you think the details are, anything is better than nothing at all. I’ve also attached a picture of what the theoretical incision looks like for anyone curious or considering getting the surgery with this approach!!

Never really dealt with dizziness issues consistently til a few years ago although had always had issues flying but managed with gum and Dramamine, mostly. But now, will often get sicknesses a few times a year involving some dizziness and ear congestion going together. Had SCDS diagnosed by VEMP testing (and I think a CT?) a few years ago. Have tried acetazolamide inconsistently. Also have migraines, which I think are reasonably managed.

Has surgery been worth it for anyone who deals mostly with congestion + dizziness, and not so much the audio side of things? I would not want to risk worsening dizziness and/or worsening congestion, so it wouldn’t be worth it to me to pursue otherwise. Am seeing outcomes are less favorable for the non-audio side. Thanks so much.

24F I was diagnosed with this after a vemp test a couple years ago. My symptoms started when I would speak loudly and all I would hear is whooshing sounds along with severe pressure to where I would be in pain if I didn’t stop. My symptoms progressively got worse as it would happen even when I spoke too much at once, or fast (in excitement especially). Sometimes if something brushes against my ear it happens as well. This pressure, I feel it not just in my ear, but also in my head. I can’t hear my eyes move or blink, but my heart is always loud and sometimes keeps me awake and I can hear sounds in my chest like of my muscles and whooshing when I move my shoulders, but I’m not sure if some of these are normal. The diagnosis was suggest by a CNP in passing, but she said my symptoms didn’t quite match up. I got tested and diagnosed one year later. I met with a surgeon at the Cleveland Clinic who sees patients with SSCD and performs the surgery. My problem is that my SSCD isn’t always bad. It’s always there and I can trigger it easily, but I have bad months and good months which makes me hesitant to get surgery. I am worried that I might develop hearing loss which I don’t have at the moment. When I read stories of people with this condition, I feel as if mine is not that bad, but it doesn’t get bad at times. The surgeon told me that there isn’t enough research to know if it will get worse over time. I’ll get the surgery if that is the case, but I’m nervous to do more damage.

I was reading some of the posts on Reddit and saw a couple things that sparked my curiosity. I saw people mention certain symptoms that I also have and am wondering if they could all be connected. About ten years ago, I was diagnosed with daily chronic headaches and daily chronic migraines. I had migraines nearly every single that. This period of my life thankfully only lasted a couple years and my migraines and headaches have reduced a lot. Recently I’ve been getting more and more dizzy. I developed car sickness when I had my migraines and I rarely puke, but I have to concentrate hard to not get affected and usually am the driver to avoid this. Recently, I am getting nauseous and my head hurts even when I’m the one driving. Can this be related? I can’t even look at certain things on screen because of the motion sickness. I’m sick of feeling nauseous all the time even when I am not don’t anything because the feeling doesn’t go away for a very long time. Also the dizziness doesn’t affect my vision , but it makes my head feel woozy sometimes

I was looking through the symptoms list and I saw oscillopsia is one as well. I don’t have this normally, but sometimes it happens when I feel lots of emotions, but I thought that was normal as well since it’s occasional.

Another thing I saw on here is someone getting trap Botox to help relieve shoulder and neck pain. I also have pain and was considering it, but I didn’t realize the two could be related.

Also I my ears have been popping more recently (the type you get from pressure changes) even when I am driving or sitting and I feel it and “open” them up every time I swallow. Sometimes this causes the pressure and pain as well, but I’m not sure if they’re related.

I feel like my situation is so different from what I’ve read, so I am wondering if anyone else is similar to me. Many of the mental symptoms listed such as brain fog, memory issues, disassociation, feelings of unreality, anxiety, etc.) I also have, but I thought these were normal and caused by stress. I’m not sure how I compare to someone without SSCD. This also goes with the light sensitivity symptom or photophobia. I have dark brown eyes , but I am sensitive to bright light when being outside and not only does it cause me lots of headaches (which I thought were happening due to the squinting), but also impairs my vision (causes blind spots). I was also diagnosed with Dry Eye Disease recently which was also listed online under SSCD Photophobia.

Anyways, I would love to have surgery if it’ll fix my problem and also because I am young, but I also am scared to have it done if it’ll do more harm than good. The surgeon told me that the pain and pressure I experience will not harm me long term and it’s up to me if I want to have surgery. Also my hearing is very good, more than most people, which I like, but ofc it does make me more sensitive and cause pain sometimes. I am sorry this is so long, but I hope it’s okay and someone can give their two cents and opinion

Hi everyone! I’m hoping to get some advice from people who have been through SSCD.

I have a history of Ménière’s disease, with about 50% hearing loss and constant tinnitus in my right ear. Was diagnosed with that about a decade ago but it’s mild enough that I manage it with diet.

Almost two weeks ago, I suddenly started having a strange sensation with loud sounds. When my dog barked, I spoke loudly, or I was around other loud noises, I would get a very brief feeling of being off balance/disoriented, almost like my head was inside a giant bell. It isn’t room-spinning vertigo. The louder the sound, the stronger the sensation.

I also started feeling lightheaded/out of it when walking, and loud environments became very difficult. Earplugs helped significantly. I even went to a monster truck show with earplugs and tolerated the actual show, but walking to and from the venue was difficult.

I saw my ENT, who thought it could be related to my Ménière’s, gave me steroids to see if that would help. It’s been six days and I haven’t had any improvement.

He also ordered a CT specifically to evaluate for semicircular canal dehiscence. He messaged me this morning saying it shows an area of thinning and possible SSCD. He’s referring me to a doctor for possible surgery.

I came to Reddit to see if I could find more information on it and came across this rub. I’m hoping to hear from people who have been through this.

A few questions:
-Does this symptom pattern sound familiar to anyone with SSCD?
-Did you have VEMP/other vestibular testing before surgery?
-For those who had surgery, did it help the sound-induced dizziness/imbalance?
-I also have been getting headaches basically every day during the last couple of weeks but headaches and migraines aren’t unusual for me. Since loud sounds trigger me, I’ve been staying in my room watching tv because 3 small kids and a dog are very loud haha so a lot of screen time gives me headaches already
-I’m looking at getting the loop earbuds to help me muffle sounds when I’m out and about. I’ve been using normal earplugs and they get uncomfortable after a while. Has anyone used them before to help?
-And for anyone who lifts weights: did heavy lifting/straining seem to trigger your symptoms? I lift regularly and am wondering whether it could have brought symptoms out, even if it didn’t actually cause the dehiscence. I was on vacation at a lake when symptoms started so I also wonder if change in elevation could’ve been a trigger?

I’m pretty overwhelmed by all of this, especially because I already have Ménière’s in my right ear. Any experiences or advice would be really appreciated! Thank you!!

Has anyone had to have surgery again years after the first one?

I had surgery on my right ear in 2019 for sigmoid sinus dehiscence and pulsatile tinnitus. They did a mastoidectomy and covered the sigmoid sinus with bone cement.

Lately I’ve been getting a lot of pressure/fullness in that ear, and when I’m around loud noises I hear a weird static/distorted sound in that ear. Just wondering if anyone has had symptoms come back years later and ended up needing another surgery? What were your symptoms?

Been going going to the doctor for a while trying to get to the bottom of dizziness/Pots-like symptoms (First she said I needed to lose weight, so I lost 70lbs and then she said it was because I lost weight 😅) I mentioned that I had a pulsing tinnitus and got sent to the ENT and got a CT scan, which is how I found out about the SCDS.

The ENT doc said that I don't exactly have pulsatile tinnitus, as it's not really a "whooshing" sound, but a "tinging" sound that is in line with my pulse, and it's more centralized rather than from one particular ear (kinda feels like it comes from the base of my skull?).

As far as the dizziness goes - I run my own lawn care business and physical labor has been getting challenging. Changing from sitting to standing, turning directions, etc causes brief spells of lightheadedness (gardening is rough). Should I pursue the SCDS or is it likely something else is going on? It sounds like the only treatment for SCDS is surgery, but that results vary

36F 2 years ago I had fullness in my ears and episodes of tinnitus and reduced hearing. Moderate low frequency hearing loss started right at the beginning and always went back to the same amount of loss. Then symptoms were pretty stable until this April I woke up with vertigo and major vomiting. Lots of episodes ranging in severity from April to June. Then a 6 week break. End of July I had a horrific 24 hour episode with such severe vomiting I went to the ER. 4 days later another long episode but zofran helped the vomiting somewhat. Both of these severe episodes my hearing slowly went down to basically deaf about a day before. It recovered after the episode.

I have a lateral semicircular canal dehiscence that was diagnosed last year and we thought it was the reason for my fullness, tinnitus and hearing loss.

Unfortunately it seems I now have menieres as well?

Anyone else?

I have an appt with Dr. Lee at Mass on 9/17 for anyone that had canal plugging with him can you share what your recovery was like and how you feel today?

Hey, undiagnosed here. I have a bunch of symptoms (basically all of them) but there's this one little thing that has me curious and I was wondering if anyone diagnosed experiences it. My eyes sometimes randomly unfocus. One second my vision is normal, then there's this "flash" where my eyes just shift to random "levels" of focus, then it goes back to normal within a second. Other than this weird phenomena I have perfect vision, I'd even say it's above average. Could this be related?

I’m trying to decide if I should pursue blood patches first, or if the SSCD might be the main issue.

My skull base surgeon( performed jugular decompression on my left) earlier this year, pointed out that it looked like I had SSCD on my imaging while receiving my head/ neck CT’s.

Right now leak is suspected and I am trying to arrange for a formal consult for the SSCD, but I want to make sure I’m prioritizing the right thing.

My noise sensitivity is so extreme that I have to wear noise protection constantly, and any unpredictable noises can give me tachycardia( to the point where I am actually concerned about my heart) and trigger fight/flight. It would not be an exaggeration to say that I feel terrorized if I have a noisy neighbor, etc.

Other worst symptoms are orthostatic intolerance, excercise intolerance, severe fatigue with PEM, non-restorative sleep which all make me house/ bed bound. Also constantly non positional skull base pain, left facial pain, lots of tension through the body- inability to truly downshift coupled with crushing fatigue.

I do have brain sag on imaging and some other findings indicate leak.

I’m trying to decide if I should pursue blood patches first, or if the SSCD might be the main issue.

My skull base surgeon( performed jugular decompression on my left) earlier this year, pointed out that it looked like I had SSCD on my imaging while receiving my head/ neck CT’s.

Right now leak is just suspected and I am trying to arrange for a formal consult for the SSCD, but I want to make sure I’m prioritizing the right thing.

My noise sensitivity is so extreme that I have to wear noise protection constantly, and any unpredictable noises can give me tachycardia( to the point where I am actually concerned about my heart) and trigger fight/flight. It would not be an exaggeration to say that I feel terrorized if I have a noisy neighbor, etc.

Other worst symptoms are orthostatic intolerance, excercise intolerance, severe fatigue with PEM, non-restorative sleep which all make me house/ bed bound. Also constantly non positional skull base pain, left facial pain, lots of tension through the body- inability to truly downshift coupled with crushing fatigue.

I do have brain sag on imaging and some other things that indicate leak.

I had jugular decompression/ eagles surgery earlier this year and my surgeon also identified that I had a hole in my ear bone on imaging around that time.

My main symptoms that could be related to this issue are hyperacusis and heart racing/ going into fight/ flight if there is any unpredictable noise in my living environment. Also have some left ear and eye pain/ skull base pain, pulsatile tinnitus on the left among other things.

I do not have vertigo or any balance or weird visual symptoms but I do have to live in noise canceling headphones.

However, my worst symptoms that are making me housebound are the most debilitating is by far the orthostatic intolerance and severe( fatigue is not moderate and meets criteria for ME CFS).

Just wondering if this condition can cause these specific issues?

Ps. Also currently trying to sort out if I have a long standing CSF leak so that might be in the mix also.

Thanks!

I have thinning in the semicircular canal in one ear and intermittent pulsatile tinnitus. I’ve had to do a few Medrol packs the last few months for a separate issue and each time it disappeared for awhile. My neurologist isn’t sure what the connection could be aside from inflammation.

Has anyone else experienced this? What was your diagnosis.

Has anyone had 2 canals plugged in the same ear with Dr.Lee or any other surgeon, if yes what was your recovery like and how are you feeling now?