I think this is so true and such a problem. When I need a doctor I tend to make an appointment with whatever specialty seems logical and then I’m diagnosed with whatever they have in their toolbox. I would never in a 100 years have thought to go to an ENT after I started having balance problems after that car accident, and there’s no guarantee that an ENT would have even considered it. My CT scan was clear, and I had no reason to think there could be an injury not seen on the CT. I didn’t even consider balance to be part of my core problems and somewhere along the line I decided I’ve always been clumsy. I went to a neuro and then a migraine clinic and lo and behold I was told it was migraines and it was never reconsidered when every treatment over a period of years failed. Being in an accident was never thought of again. Through some combination of healing on it’s own over time, and forgetting what my normal feels like, the symptoms just became an inherent part of my brain and treated as just the way I am. Who knows if it really is the result of an injury at this point. It’s frustrating and confusing not to have better answers.
It seems like this would be the job of a PCP to help navigate medical specialities but in my experience they don’t have any ideas for anything unusual and often jump to anxiety or stress as the cause of most things anyway. There has to be a better way to figure this stuff out.
My issue is there is no objective test to confirm this!
And moreover, ok it’s this, but what are you going to do about it, how are you going to reverse the impact in a reasonable amount of time? (let’s give them 12 months to be generous!)
Stress causes tons of things, but my inner ear wasn’t even considered as a possibility before doctors suggested stress might be at the root of my feeling like shit and often being nauseated. I’ve had a zofran 8mg prescription since 2017 but no vestibular or ear evaluation until this most recent (and most severe) travel incident. And only after I insisted after a month had gone by and was treated as if I was being dramatic by the ENT. Never mind my PCPs who has been prescribing zofran for years and antibiotics when I complained of ear fullness.
If stress does end up being a factor (as it might be for soldiers with PTSD who suffer anxiety, dizziness, tinnitus?), and this has a genuine pathophysiological impact on the inner ear, what sufferers are experience is extremely real, regardless of the impetus.
The balance system, as I’ve previously stated, uses about 30% of the brain alone (excluding vision which is involved bringing total to 60%). If something significantly puts that out of kilter its going to have a massive effect on the individual, so judging them for their “drama” is utterly inappropriate.
I read that your sense of self, your ego is based on the sense you have of your physical mass and its relationship to and momentum within the world around you. When your balance is upset, it has an extremely major effect on you and the downsides cannot be underestimated.
And don’t get me started on the torment of tinnitus which so many also experience.
Exactly! When symptoms kick into high gear I’m at my least able to explain it or advocate for myself. Women in general are often not listened to by their doctors when they have unusual or rare symptoms. I’ve experienced this repeatedly in my life and I’ve noticed the stark contrast between the way my husband is treated when he has a not obvious medical complaint. I’m not saying that men aren’t dismissed or struggling too, but I do believe there is an added layer of being a woman that plays into being disproportionately lumped into these very vague diagnosis, like migraines, and other potential causes are not fully explored or even considered. When all your brains bandwidth is going to keeping you upright you don’t stand a chance of being treated as if the problem is physical and not emotional or psychological. I was half joking with my sleep doctor (a woman) that I was a little nervous that when I got into see the ENT he’d suggest antidepressants for the ear pressure and mild (at the time) vertigo. And sadly I wasn’t far off the mark.
Not to brag or be weird about it, but I am an intelligent woman with a professional career (how I’ve managed to keep it moving is a whole other convo) and I am very used being taken seriously and treated with respect. When I am a ‘patient’ the difference is jarring and it’s very upsetting.
I am going in for another blood patch today. Seriously the short period of clarity and relief after getting it is at such contrast with how I typically feel even when I’m not experiencing symptoms or brain fog. I’m finding myself pretty resentful that it took so long, and frankly the luck of new pressure trauma to my ear to find a remedy.
Except it’s not likely I developed a tumor on an airplane. The jump to perilymph fistula would have been too far, but there are a number of other things that including a closer look at ETD etc. But when the MRI came back fine he had no alt treatment in mind or even another visit. He literally said “you don’t have a tumor” and started to end the phone call before I pressed, so what do we look at next? This is weeks into non stop rocking vertigo. There wasn’t anything standard going on. And the MD was a jerk, so I’m not letting you defend him
Well you don’t need to convince me: my first oto-neuro tried to convince me it was ‘migraine’ despite first experiencing symptoms obviously minutes after attempting to irrigate my ear.
When I pressed this point she asked me if I’d ever had a migraine, I responded ‘once in my life, some years ago’.
Somewhat farcically, that was enough to convince her of my ‘migraine’ diagnosis!
The really weird part for me was that those symptoms of imbalance went away within 5 weeks.
The full “MAV” spectrum of symptoms (re)appeared out of nowhere 5 months later having thought I’d completely recovered.
But in general agree, medics seem to be unable to tailor for circumstances in at least some instances.
We tend to romanticize doctors as problem solvers or creative thinkers when most of them are just evaluating symptoms and test results against a checklist or following a flow chart they’ve memorized. It makes sense for most people’s medical needs but when something unusual is going on it’s what creates the long delays in diagnosis and treatment. The best doctors are the ones with enough experience to figure things out.
Experience has taught me not to just accept medical opinions at face value, or that seem to contradict my experience of symptoms. But really, it was how extreme and debilitating it became that forced my hand to push hard for answers before my life became completely unglued. If it was still the mild nausea and rocking it started out as in August I might still be trying to figure it out or maybe would even accept it’s some sort of unusual migraine. IDK.
I had another blood patch done Friday. The relief doesn’t last as long as I feel like it should? I don’t want to discount the improvement it makes but I still can’t do much. Maybe my impatience is making it feel more intense? Fingers crossed I can get in for surgery before the end of October.
We are totally on the same page wrt to doctors, and the way they normally operate.
It’s extremely tempting to believe this will sort things out, but it’s not surgery that is sufficiently common to provide decent stats as to efficacy.
So stay grounded and if you want to take the risk of trying out the surgery, fair enough, but don’t be disappointed if it doesn’t help or has effects like reducing your hearing in the affected ear.
A feeling of rocking is extremely common amongst people who have had no trauma, so it’s possible it could be something much more minor than a PLF that is causing it. Something more like Secondary Hydrops imho.
I also think it’s a possibility that injury to the little muscle that controls the tension of the stapes against the oval window is also a possible source of these issues as this could also create increased pressure in the inner ear if compression was higher than it should be. Injury/tear to this muscle would change its properties and response, and perhaps the brain would have to relearn/recalibrate its use?
The science is so badly developed in this space it’s really hard to be sure. Most of it is theory. Imho the migraine ideology is totally out of control and has let doctors just dismiss a massive breadth of issues as ‘just migraines’.
Right now it’s my next best move. I’m optimistic, especially with how clear headed and not light sensitive I am immediately after the blood patch. The doctor at UCI seems optimistic. I am going to end up in therapy to correct otolithic dysfunction 100% for sure after I heal.
To be honest I’d give up the hearing in my right ear to be able to walk without feeling like I’m on a rocking boat. I don’t think I have to make that choice. My hearing loss isn’t severe, if it doesn’t improve it will be manageable.
This is exactly what it was like for me for a decent phase of my condition, yet I spontaneously improved over time. I was dizzy/imbalanced for over 3 years, yet all that disappeared with time and patience.
My hearing doesn’t feel any better today than when it was first compromised, except that various sensations have disappeared like the fluid sensation. The steady but very slow change of symptoms has encouraged me to wait it out.
I am glad that worked out for you. I’m just not in a place where I can wait if there’s a possibility of this working faster. I have way too much I want to do and plans that are being pushed back the last couple of months. I am excited to get back fully into my life again. Also there’s the possibility of regaining memory and little cognitive things would be so amazing.
