The neuro-otonologist I go to thinks I may have vestibular migraine but I don’t think she is sure. I’m not sure what else to do to diagnose myself besides getting more tests, and I’m not sure if I’m willing to put myself through all of the ENG or VEMP tests. My balance looks really good so she thinks my vestibular function is pretty good, but all week my head has been whirling around slowly. All week! Does this sound like MAV? I don’t remember feeling like this before. These symptoms are always fluctuating it’s scary. I’ve also been on Verapamil so I don’t know if that is causing a problem but my anxiety is through the roof because I’m scared I don’t have a set diagnosis.
We’ve talked about this. MAV is a diagnosis of exclusion. Read the wikis here. You have MAV symptoms. Even without an official diagnosis, the treatment for your symptoms is the same as for MAV.
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Camille,
I’m going to put this out here in the public sphere not to be unkind, but to point out something important we often miss.
Dealing with a major illness puts us into the grief process. We need help dealing with our grief. You seem to be in denial and bargaining, which are both stages of grief. You won’t be at peace until you get to acceptance. Please, find a grief therapist who can help you move past these earlier stages. We can be happy and healthy, but we must attend to our emotional and mental health.
Take care of all aspects of you.
Love, Emily
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I totally get the need to know what the &&&& has happened to you though.
It took me to see 4 doctors before I had the explanation I craved (a process that took me a year)
By that time I’d had most of the tests but hadn’t til that point had any satisfactory answers.
I was shocked how little medical professionals seemed to know about what was going on. I’d always assumed we had such incredible medical technology. How shocked I was when I realised the reality. Sure, I have lots of sympathy for the professionals involved because it’s certainly not their personal fault, it’s just the state of things. But given the $$$$ being spent it’s a crime, really …
I get the impression that most people think once we have a cure for cancer we can beat anything … turns out there’s a lot more monsters out there we don’t fully understand.
Keep soldiering on Camille til you are satisfied!
I mean, I may partly be in denial, but at the same time I just really want to make sure I have MAV and not something else because I’m scared that if I am treating the wrong thing I won’t get better. I don’t get like visual snow or classic migraines. But my ears will pop sometimes. Last week it felt like the crystals were moving around because it made noise in my left ear. And I struggle with chronically being dizzy or feeling off or feeling like the world is surreal. So idk if that is VM or not but I just wanna make sure I’m treating the right thing. Amitriptyline helped me though so idk if that’s a clue but it didn’t last.
Try it all. The lot.
What do you mean James?
All the different treatments. Try a combo if required?
I’m currently on Celexa and Verampamil. Not sure how well they are working since I’m not feeling the best.
find a second neuro-otologist and get a second opinion. Make sure you tell the entire story and don’t leave out any details. Any history of injury, migraine, symptoms as a teenager everything. You can write it down before the second opinion.
Good Luck Camille
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I will be seeing a neurologist in a few months at Stanford. Would that be sufficient or should I go to another neuro-otonologist?
Camille it is for your doc to tell you what is wrong. If you dont believe your doc, find a doc you believe. Anything short of that is a distraction.
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A lot of what ifs in this topic and frankly too many which is increasing anxiety. If you truly don’t believe a doc, get the caloric testing done, I saw a slight left side weakness. It took me roughly 4 doctors and 2 months (gp, ent, dizzy doctor -told me diagnosis but treated me callously with little info, neuro-otologist at Yale which gave me a huge packet and easily within 5 mins of hearing my story and symptoms auto said VM/MAV, then referred to his neurologist and then I went up to Boston 5 months later just to assure the diagnosis and that there’d be little help for it with Dr Rauch) to believe it truly was MAV/VM… But it took me 2 months to believe it. June to beginning of August. I had a hard time believing it because alike James, I was shocked at how much they really can’t do much for you and you’re left in a state of conservatively treating yourself or they throw meds at you with side effects.
But once again, you’re psyching yourself out by trying to self diagnose and you’ve had an MRI and such (I did too and it came out completely fine… the only test they realized was an issue was my caloric testing and it was my Yale neurologist who picked up on the slight left side weakness, not the audiologist who told me that day it was completely good.) Get the caloric test if you’re that much in disbelief.
Oh and huge FYI, this condition waxes and wanes like you wouldn’t believe. One day you could be great, next day could be hell. No rhyme or reason (given yet). I’ve been having a headache for the past 2 days. Weather has been crap and the pressure has been bouncing.
Seek the 2nd neuro just to get a 2nd answer to solidify your thoughts but also get the caloric done-- it absolutely sucks, but it’s temporary but it’ll also relieve your constant stress you’re increasing which can boost the wax and waning of this very condition and make life living more hell.
Good luck and we hope you find the answer you’re looking for and once again, if it truly is MAV you have us on this forum as a support team cause we’re all in this together.
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