Newbie with a BPPV as VM trigger dilemma

To add to the rather confusing discussion of cause or affect: Here is a quote from Practical Neurology

“Benign paroxysmal positional vertigo (BPPV). It has been reported that patients with migraine are more likely to also have benign paroxysmal positional vertigo (BPPV) and that patients with BPPV are more likely to have migraine than those in the general population.37,38 BPPV is evoked by Dix Hallpike positioning and associated with characteristic nystagmus and responds to canalith repositioning treatment so is generally easy to distinguish from MAV. Nevertheless, MAV can sometimes produce vertigo with positional elements that may mimic benign positional vertigo.39

The positional dizziness of MAV may be associated with low velocity static positional nystagmus and unlike BPPV the vertigo may build up or evolve over a period of 30 seconds to several minutes. Some patients with migraine positional vertigo may find that they cannot lie in certain positions because they develop nausea and dizziness within minutes.”

https://practicalneurology.com/articles/2009-sept/PN0909_02-php

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Great find. I think I may have read it before in the past but it still resonates well with me.

Since onset of my recent attack I cannot lie on my right side in bed. If I happen to turn that way in my sleep I wake up sweating and with nausea and true vertigo.

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Without a word of a lie, this is EXACTLY what happened to me. In October too. The Epley changed everything. I had BPPV for 4 days before it.

@Mina ah, both. I have heard of this happening but never spoken to anybody who had actually experienced it before. I have also read a long article about a lady given Brandt Dorff exercises to carry out at home numerous times per day for weeks to stop her BPPV and she ended up in hospital totally incapacitated.

By timing yours would seem more than pure coincidence. My MAV started with one very brief BPPV type attack which could have only lasted about one minute I guess then I was totally normal then sometime later (weeks?) I woke up one morning with constant room spinning vertigo that didn’t stop for 48 hours. The only way to pause it was to sit totally still with my eyes tightly shut. Mine took years to gradually develop into Sort of silent migraine attacks so your changeover could just be natural progression hastened on by that Epley. Frustrating but I don’t suppose we will ever really know.

@Belindy that is crazy!!l We are like vestibular twins or something!! And in October, too. I’m glad there’s someone who understands.

@Naejohn this info is super helpful thank you so much!! I wish more was known about the connection between BPPV and VM. I can see (and it makes sense) that any violent vestibular event could trigger VM, but wonder about the mechanism that makes VM sufferers more likely to get BPPV—does it have to do with vascular issues or neuro chemical differences that make the crystals more likely to be displaced? At any rate, the difference between them in how they feel is crystal (ha) clear to me—certainly both positional symptoms but ugh not the same at all. Following my neuro’s advice I will treat non-BPPV positional vertigo with migraine rescue meds and the BPPV with repositioning donewith preventive meds on board.

@Onandon03 yes, the misfortune to have both, alas. Your experience sounds harrowing too, my sympathies. I’ve been consoling myself with the knowledge that some people come down with the common cold (virus) and then develop bacterial bronchitis which sets them up to catch more colds…

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Hi @Mina, would love to know how you pulled up after this now it’s a few months laterZ Was thinking about this thread today when I read (somewhere else) that the Epley triggered full blown chronic vm for them. STILL unsure what I will do.

I have to agree that BPPV and VM are not two separate conditions (in our cases): it seems very likely to me that they have a common cause and are connected.

I’ve always been of the opinion that BPPV causes neurological fallout, and my recent relapse (from which i’ve recovered 100%) was exactly BPPV Spinning → VM/MAV/neurological fallout over the following two weeks, whilst the distinctive BPPV symptoms appeared to resolve spontaneously pretty quickly.

The weird thing is I did not need any procedure to get rid of BPPV, most of it left me within 48 hours, which is very strange because BPPV is supposed to linger for months if left untreated?!

I believe there is a very strong possibility that medicine hasn’t got the full story right here.

More on this debate here: https://mvertigo.org/t/bppv-or-not-bppv-that-is-the-question/21441?u=turnitaround

Same!! :smirk::woman_facepalming:t3:

For us yes! I just don’t understand how some people with vm can be ‘cured and feel great’ at the PT after an Epley (for the BPPV), and I get it done and the intense neurological aftermath begins. Is the anatomy of my ear different? Is it my nerve?

What’s the difference here?

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Who are/where are all these people with VM who walked out ‘cured and feeling great’ following an Epley? One Epley once seemed to make my symptoms settle far faster than usual but neither cured nor great. I did however manage to walk after having it which I couldn’t before it. None of the others I had ever did anything neither good nor bad. However i wouldn’t dispute in VM cases BPPV and VM are closely connected. My first ever attack appeared totally BPPV. Since being on medication I find I will always experience a bit of BPPV usually looking down at a book, screen or worst still a plate of food occasionally over a few days before a full on attack kicks in. Through attacks I cannot lie on my right hand side in bed and will experience BPPV type stuff every time I sit up in bed until I regain my ability to lie on my right side without side effects. Then the BPPV stuff is gone until the next time.

It would be good to know what is really going on. For some reason I cannot think of the BPPV being a trigger in my case, more an indication the system’s struggling.

BPPV stemming from a peripheral cause would possibly respond in the way you describe but not from VM and the difference I’d say is because VM is Central not Peripheral.

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How could there be any such thing as ‘central’ BPPV? Especially given the obvious tight relationship between the symptom and orientation and how important the inner ear is in establishing accurate orientation?

No idea. The positional stuffs odd with me because it changes with circumstances but as Being medicated must skew the results that may not be at all relevant.

I think the fact that you can turn it on and off like a tap is no less than diagnostic of something dysfunctional with the inner ear at the time of the symptom.

The fact that the symptom is transitory over the medium term suggests the dysfunction is reversible.

The fact that neurological fallout seems to occur over a number of days or weeks suggests that’s how long it takes for the issue to resolve or the brain to compensate for it, or perhaps a combination at least initially.

I suspect the brain can only cope when sensors response lies within a noise threshold with the region where the brain expects the response to be in relation to other incoming information.

As I’ve always said, MAV is about instability in the vestibular system. The prominence of BPPV suggests that some of this instability is surely going to be in the sensors?

People on fb and here too. I mean those that get it done and think, ‘oh I feel so much better now’. I suppose I’m still pondering why that particular manoeuvre sends me completely down the spirally rabbit hole and other people, like yourself Helen have no negative effects at all.

I think I’m still thinking about it as I got my PT report that she sent to my gp that mentions how curious it was the Epley (the BPPV to a lesser extent) causes so much vestibular turmoil - in my brain.

Anyway, thanks for replies.

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That’s really interesting. We should probably have a poll.

Perhaps your PT hadn’t come across it before. It can’t be uncommon. I recall a friend who had labyrinthitis being asked if she wanted an Epley carried out and the country village doctor who suggested it to her forewarned her it could make her much worse and bring on things she didn’t already have. He was no specialist. Just a family doctor. Needless to say she declined. Perhaps I was lucky nobody warned me. I guess not many have much experience of it. When it was first suggested to me It was spoken of in hallowed terms as if it was some sort of divine intervention … it could only ever be performed once, it could never be repeated, it would work instantly and permanently or not at all. Made it seem a complete mystery to me. Interestingly the doctor who carried it out did so with an instruction sheet in the other hand which didn’t exactly fill one with confidence and by the experience of later Epleys never did it right anyway.

Sorry to be so out of touch on this thread. HERE ARE UPDATES! And a public service announcement: if you think you have BPPV, do not take a vestibular suppressant before diagnosis AND if you can, get diagnosed via video goggles.

You may remember in mid Jan I thought I had a recurrence of BPPV, was terrified of the Epley and my doc and PT both said to premedicate with 5 mgs Valium. I did and went in for a series of diagnostics all done with naked eye and was told by PT I had no BPPV.

WEEKS LATER…still feeling crappy all the time, despite ramping up nortriptyline. Few headaches but dizzy disequilibrium vertigo etc all the time every day. Neuro says “I think you might still have BPPV or something else going on besides VM.” Refers me to specialist at dizziness and balance clinic in local uni. I get 1.5 hours of hideous vestibular testing (you know about this so I won’t go into it). Wrecked for two days after.

Diagnosis: right side LATERAL canal BPPV. (I had right side posterior initially…so a canal conversion.) I did the roll maneuver at home and it was predictably so awful, even with small amount of Valium on board. I cried after. Two days later I took a full 5 mg and did the roll again (repeated for good measure). Of course did not feel immediately better. Few days later at follow up, specialist retested and pronounced me “clear.” That was three weeks ago. Still dizzy every day but less totally gross and horrible feelings. Specialist said prioritize getting on new migraine preventive (had to step down nortriptyline due to cardiac side effects).

That’s where I am. Not entirely sure BPPV is totally gone but will retest regularly and try to carry on. Paused the step down of nortriptyline bc I didn’t want to be totally unprotected during all this testing and treatment. Talk about migraine triggers…

May try Effexor or Zoloft next. Have appt with Dr Ian Purcell next week.

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Oh wow! What a full on few months for you. A canal conversion … yuk! So the Epley/manoeuvre worked finally for BPPV but left you still dizzy. Were you able to lie down to sleep?

I have never had a vestibular suppressant before the Epley and they have always used goggles. Still leaves me rotten.

What are your thoughts now Mina? To Epley or not? Seems as though leaving it is no walk in the park either.

Thanks for replying

Haven’t been able to lie down yet (I was able in December about 1.5 months after the first Epley and it was probably rolling over in bed that caused the canal conversion). Been upright at night for a long while now since the second instance of BPPV) but I am hopeful I’ll be able to in the not so distant future.

I think I wouldn’t leave BPPV untreated. Every little move I made caused that damn debris to rattle around (specialist said lateral canal BPPV can be really challenging) and I’m sure it was driving a lot of migraine stuff. I had lots of just general yuck feelings and that’s better. Specialist said also it can take 2 months to recover from BPPV; he said “it’s fixed but your body doesn’t know it yet”. The utricle on that side now has a different mass after shedding all those crystals so brain is getting very different signals re:gravity and it will take a while to compensate. (This is not even taking into effect the VM.) he said “improvise your own rehab.” He thinks the structured rehab is too regimented for VM.

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Oh one more thing!! I would not take a suppressant before diagnosis because I want accurate nystagmus readings but I would DEFINITELY take one before treatment with Epley or any other CRP. Specialist agreed and said he has had BPPV and always vomits so takes Zofran before treating. He supported me doing home treatment with Valium on board first.