BPPV is exactly as you said it Neville. I’ve also just been dx with this disease by doing a tilt test. My ENT has thoughts it might be caused from my CI. My GP has just put me on a trial of Stemital this morning to see if that helps the dizziness.
Let me know if the Stemital works and any side effects, thanks.
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That seems odd. Why not just get the repositioning maneuvers done. Has it not been responsive to professional treatment?
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Neville are you talking about the Epley maneuvers? I did the vestibular physiotherapy course for 3 months. I do a modified Epley maneuvers at home as well which physio taught me to do. Just trying to shift the those stubborn canalith. I do all the exercises at home from the physio as well… I might be ok for 1-2 nights and it comes back.
It can be tough to complete the maneuvers correctly on one’s own. Did a professional ever move you through them?
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I have an appointment in August at a physical therapist to evaluate my symptoms and if they think the maneuvers will help then it’s a go.
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Neville yes he did, in the 3 month course.
Did the 3 month course help you?
Yes it did help to a certain degree. But it wasn’t a cure, just a way of managing BPPV.
Keep in mind that there are multiple potential causes for your symptoms. The experts are the ones to have figure it out, even if it takes a while. They’ll start with the most common causes that fit the symptoms and work their way down the list of less common causes if needed. My wife’s tumor is near the bottom of the list with one source saying only 50,000 cases in the entire US population.
She has dizzyness, lightheadedness, and some vertigo (spinning feeling). They initially tried the Epley maneuver, which seemed to help but did not provide the amount of improvement that they had expected. It wasn’t until the MRI that they identified the cause. Since they diagnosed the vestibular schwannoma, she’s been to therapy to try to get her brain to ignore the bad side and pay attention to the good side. This has helped some. I’m hoping this is not the cause of your problem. From what I’ve read, some schwannomas are operable. It varies on location and other factors.
Did your wife have headaches before she was diagnosed? Just wondering if tumors cause headaches.
Reason: I family member had headaches turned out to be a tumor.
My wife did not have anything unusual in the way of headaches before or since she was diagnosed. Tumors can present in a lot of different ways.
A very good lady friend and mtn biker was having lots of dizziness and they ruled out everything except for crystals in her ear interfering with balance and causing vertigo. Did some research and it’s a real thing. They put your entire body thru some maneuvers, either manually or in a special machine, that move the crystals to the location where they cease to be a problem. Cured her! I guess it’s not all that uncommon.
Oh I see now that others have mentioned this. It really helped her out a lot but of course I can see where it might not work as well for some.
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A coworker also went through the Epley maneuvers, and it helped him. It sounds like snake oil, but it does often work. If it doesn’t, then they start looking for other causes.
Thank you My appointment is end of August. Long time to wait, but that’s how it is.
I’m glad it cured her. Gives me hope.
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@cjpines My physio did the Epley maneuver again yesterday. Thank heavens with success, no dizzy symptoms last night in bed at all. A peaceful night exercise free is a true blessing.
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I just came across this research article. Upfront Radiosurgery vs Wait and Scan in Vestibular Schwannoma
Interesting article. Reading carefully and you find that while upfront radiosurgery does have a preventive effect on tumor growth, all of the secondary measures (hearing, balance, etc.) have similar results at five years among the treated and control groups. I’m wondering what happens after ten or even twenty years. Perhaps the study didn’t run long enough to see a difference in secondary measures. I was hoping for something more definite.