Does anyone have superior discience? It's a hole in the ear bone?

Is this constant dizzinsss? Do you ever feel swaying or like jolting in your head? Or imbalanced at all? What do they do for treatment?

It's not constant but it is the majority of the time- especially at restaurants or shopping. For me, noise and lighting are factors. Or if I jerk my head too fast one way it will create dizziness that will last for a while. I do feel the swaying. I don't have any spinning but my head feels drunk. Unfortunately the only treatment I was told was a very invasive surgery to patch the hole in your ear. For the most effective of the surgeries, they have to go through your skull to get to your inner ear. I have not had the surgery and my doc told me unless my symptoms get to be debilitating, to not have the surgery as it is risky. Most of the time it can alleviate all symptoms but sometimes people might lose all hearing in the ear that had surgery or existing symptoms might get worse. I myself will hold off on surgery until I can't live with my symptoms. I'm 25 so I'm assuming I'll have to have the surgery before I'm 40 but who knows. Things that make symptoms worse I was told are changes in pressure (flying, scuba diving, possibly barometric pressure), heavy lifting, straining, sometimes exercise. For me, mines started after I flew with a head cold. It gets worse with head movement. Hope this helps!!

I am 25 also. How did you find out this is what you have? Did they do an MRI? Or what test did you get done? Did you get a head injury or something or born with it? I feel sick when I exercise but not sure if it's from that. My eyes are super sensitive to light. I'm trying to figure out if I have it, got an MRI and had other test done and haven't gotten a ct test done? Can you live life alright? Do you work? I'm worried about this.

The docs initially thought the fullness I was feeling was sinus related so I had a Ct scan done to see if sinuses were inflamed. That Ct scan got sent to the top ranked docs at the teaching hospital I live near (ku med). He thought before any tests that I had Ménière's Disease. He said he would know for sure after a test called an ECOG. That test showed abnormal on both ears which he said was strange as most Ménière's patients especially young patients have abnormal on just one side (the side giving them the discomfort). He said he wanted to do a VEMP test same day to see if it was superior semi circular dehiscence (sscd). That test showed a positive for both ears. He said he would check the Ct scan I had done previously to see if he could find the hole. He said he can kind of see it and that was enough to diagnose me. I was told about 1 in every 100 people are born with this thin bone. Or more that the bone didn't thicken like it is supposed to by age 3. But a very small percentage of people that are born with it have symptoms. Most people that have the thin bone don't show symptoms. Symptoms usually start because of aging (not in our case), head trauma, pressure trauma like flying or scuba diving. In my case it happened after a flight.

If I were you, I would get to the best doctor in your area. Tell them your symptoms are debilitating even if they aren't (it will help get you in quicker). I would tell them that you think you could have this and ask for a Ct scan and other tests to rule out other causes. I think you want a Ct scan instead of an MRI as that won't show it as well. Also, if you have a Facebook account, join the support groups for this or Ménière's. I'm in both and they have helped so much the past few weeks since this started for me. Don't worry too much. It is not a good diagnosis at all but in my opinion, better than some stuff it could be. I know that's the last thing you are thinking bc it really sucks right now but I've only had my diagnosis for like 2 weeks at this point and it's gotten so much easier to deal with and way less scary

Oh okay, they thought I had meniere also

Actually and I got the ECOG test and that was fine nothing significant and not sure what the vemp test is at all. Was that where they put water or air in your ear? So what do you do in the mean time to help

Your symptoms? That was very helpful! Thanks so much for going in such depth. So in the Ct scan you basically saw a very small hole? My ear Dr said I had a very straight line on one of the test like I had negative hesring or sensitivity so he said maybe that's why I had this hole in my skull or what not. I will join the Facebook group. What's it called? I have so much pressure in my ear.

Are you still able to work? Also do you only hear your heartbeat occasionally? I feel very Imbalanced. Do you get that? Do you hear footsteps and all that too?

No problem at all. I was in the exact same boat you are in February/march. It's scary stuff but it feels like such a weight lifted when you actually get the diagnosis (at least it did for me). I was extremely scared being so young and having a 2 year old. It just makes you feel so alone. That Facebook group will really help. It has for me it's called semicircular canal dehiscence sscd support group. There is also a fitness one with the same name and the word "fitness" added. I can go in and add you if you can't find it. It took me a while to find. It might take the admins a couple days to approve you.

The VEMP test is really easy. They just put an ear plug like thing in one ear at a time and attach electro stuff to it and you just move your head as much as you can in the direction the tell you (right or left) so they can measure something in your neck muscles response. You turn your head when you hear the clicks. It's painless and for me didn't cause any discomfort.

I'm not doing anything for my symptoms my dizziness really that bad. Just kind of imbalanced like you said. The fullness is the worst symptom I have. It's a lot of pressure sometimes and as far as I know there is nothing to help that. I do actually hear footsteps louder than they should be. It's really noticeable when I'm walking on concrete. I am a cheer coach and since it's been their off season since my symptoms started I haven't really had to work yet. I will start up again in the fall but for right now I'm staying at home with my 2 year old who is full of energy and it's tough. I know there are meds for dizziness but I don't believe there are any for fullness/pressure or auto phony(hearing footsteps) the heartbeat noise only really happens right after exercise and goes away in a minute or two.