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Newbie with a BPPV as VM trigger dilemma

Hi all,

I must try to be brief as screens are a major trigger:

49 yr old female, with two months-long (3 months and 5 months) chronic dizziness/vertigo episodes in past (2006 and 2008 after car accident).
Never fully explained—all tests negative and only resolved with time and with getting new dental splint for bruxism (which is a migraine trigger so I’m told).

Long history of intense headaches but no official migraine diagnosis until now.

Current dilemma:
Episode of BPPV in October successfully treated with Epley seems to have kicked off full blown hideous chronic VM. Definite migraine on day of Epley and then 1 week later after full day of computer work everything exploded and I’m barely functional since. Experiencing all kinds of motion, regular headaches, light and sound sensitivity, ear fullness, etc.

Primary doc and neuro willing to go with VM diagnosis as nothing else seemed to fit. Neither is super well versed in VM.

Currently on 40mgs nortriptyline daily, noticed some improvement but still logging one VM per week.

DILEMMA: I now have recurrence of BPPV on other side and tried home Epley and it was too hideous so have appt with PT tomorrow to get it done in office. Primary says to premedicate with 5mg Valium 1 hr before (I’m thinking also of premedicating with ibuprofen).

My fear is I’ll be back where I was three months ago after the first Epley. Unfounded? I know no medical advice can be had from strangers on internet but is there any wisdom in just waiting this BPPV out or should I treat it with the theory that you treat the thing you have for which there’s a good treatment, despite the possibility of triggering a migraine cascade?

Best,
Mina

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Hi and welcome

Sorry but may I just throw a spanner in the works here please?

My question would be, to the medics not you personally, is this really BPPV? Bet they cannot answer that. @dizzybit could only get a possible from the John. Hopkins clinic who are experts supposedly. If it is true BPPV then Epley has a chance of working. It does unfortunately have a chance of making the patient far worse and, from my own experience, if one just happens to have MAV that worse can be extremely worse and worst still extremely extended. It can just go On and On.

I say all this having been misdiagnosed as BPPV for 12 years which meant apart from endless (bit of an exaggeration that really) Epley I was untreated for what I really had, Vestibular Migraine and that gave that condition 12 years in which to get increasingly worse and increasing intractable, embedded and difficult to treat. Here I ask @sputnik2 in for she can back me up. Episodic MAV promptly treated is do much easier to get under control than after 12 years.

I have heard if people made longtime worse by the Epley but Personally I have not had an Epley which made me worse for any extended period. However only ever had one which made me appreciably better to the extent it brought the attack under control. The rest (10 maybe? All carried out by doctors, not ‘allowed’ DIY Epleys in England they issue Brandt Dorft instead) just made me worse for a few hours or a couple of days as far as I am aware. I have heard of others that have. I

Hi thanks for the response. First episode of BPPV was diagnosed with Dix-Hallpike maneuver. No response on left, classic violent spinning vertigo with nystagmus on right side, both subsided after 30 seconds. Epley was successful; follow up appointment I had no vertigo or nystagmus. VM symptoms afterward were all different (rocking, lurching, tilting, lightheaded, etc. with almost no positional vertigo and no violent spinning at all).

I did the Dix-Hallpike at home yesterday and again classic violent spinning only on one side (left this time). Resolved with repositioning. (Couldn’t do the Epley on my own it was too sickeninh.) So I’m pretty sure it’s BPPV.

Edited to add—and of course I’m still dealing with active VM, with at least one migraine per week.

Hi @Mina, I am very very interested in your story and what you decide to do. The end of your story closely mirrors mine.

I too had BPPV in Oct and was left with long term dizziness which was preceded by vommimg for weeks, blurry vision, and could not lie flat for months. I was feeling fine before the Epley however.

I am terrified of having another BPPV occurrence to set it off again. But here you are, in that exact position.

I have asked both my neurologist and my VRT Physio their opinion about doing the Epley. They both say to do it. And I will. I’m not prepared to live with the intensity of BPPV for weeks. I think I’ll have a triptan just before I go. Or just after, depends on what Physio says. I hope the pizotifen I’m on makes a difference.

Very interested to hear how you go

Oh @Belindy so sorry you are going through this too, it really is hard. I wrote the PT with concerns and he also recommend premedication and may try a different maneuver with fewer positions. I’m probably most worried about losing my gains with the visually-induced dizziness: I was just starting to be able to type again and use my phone. etc though I still can’t scroll. I did tell PT I will bail out in middle of procedure if it’s too untenable.

Hi ladies,
I also had BPPV which I believe was a part of what kicked off the VM for me. Strangely, what i have learned over the 3 years and 5 days since VM came knocking on my door is that there are so many similarities between BPPV and VM.
VM can have nystagmus. My nystagmus is downbeating rather than left or right which is more typical of BPPV. Do you know which side your nystagmus is beating?
Apparently we (VM’ers) have a much higher likelihood of having BPPV.
When I’ve had the adjustments to relieve the BPPV, it was horrible… but over quickly and I rebounded quickly and had immediate relief if the treatment was successful.
I hope you have the same experience :smiling_face_with_three_hearts:

My first BPPV was classic nystagmus, then turned into downbeating.

In October, before she did the Epley, and me just sitting upright, it was already downbeating. She turned my head left, still down beating. She turned my head right “ahhh there it is, classic BPPV”.

So it seems, BPPV occurs, sets off VM.

I still by the way (as off 2 weeks ago) STILL have downbeating nystagmus as checked by PT although have had most days symptom free. Why doesn’t it ever go away is my question.

Glad your BPPV cleared up without residual dizziness and making VM worse @Naejohn.

By the way, how many times have you had it since you got VM and did it clear no problems every time without spiralling down the chronic hole?

Hi Belindy,
I think I have oversimplified my relationship with BPPV, I apologize for that.
There are different phases to my fight with this disorder and my initial BPPV / VM chronic phase was a year long battle. My GP said “BPPV, go home do these exercises”. I did daily for months, all the while going back to my GP begging for additional help and other strange things popping up to make life worse.

Went to the ENT, he said the same + 78% left side vestibular loss + downbeating nystagmus; did Dix Hallpikes which were my first treatments by a physician. They didn’t’ work.

Went back several times, no help. Started VRT, still no help and now was quite chronic with all the additional awful VM symptoms that no-one could identify sources of or offer help with. By this time I had seen 3 physicians and no help.

Finally, I landed with an Otoneurologist who is an expert with all things VM / BPPV etc. He diagnosed me with right side BPPV and VM. He performed the Epley (with each movement being exaggerated and very slow BTW) and after a year; I finally had relief of the BPPV and it was immediate!

I have had to have it done only one other time since in the past 2 years and do not plan on doing it myself ever. I don’t think this is something that we can do effectively at home with success.
However, The spinning (BPPV type) vertigo is not something I experience any longer.

Also, per Dr Hain; DBN (Downbeating Nystagmus) is classically attributed to the central nervous system (i.e. brain). So, I don’t know if it goes away once we are treated or if we continue to have it since we will always have the “migraine brain” as my Dr calls it.

Sorry for the length of this reply, I just know I oversimplified my experiences earlier.

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Wise words. It’s totally frowned upon as DIY here in UK. There’s very distinct technique to it. I know for me the only time it worked - and that was pretty much instant - it felt far more lengthy, deliberate and violent than all other attempts put together. First ever ‘I had the doctor who ‘knew what to do’ according to my doctor who referred me on because he didn’t performed it with the open manual in the other hand.

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Hi Helen, so nice to see you back here :smiling_face_with_three_hearts:
Yes, that is exactly how it “worked” for me. I was taken aback at first… looking at my husband who was in the room with me, while my head was hanging upside down and backward… like “what in the h*ll is going on?!”. But it finally worked and was one of the best feelings ever!

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Thanks everyone for chiming in; it helps to know I’m.not alone. Lengthy deliberate and violent pretty much covers it @Onandon03 . My Epley in October was just hideous—i let out a stream of loud curses in the office and grabbed onto the physio for dear life. Thankfully he was ok with me clinging to his trouser pockets like a maniac throughout the whole thing. Flop sweats, cortisol dump etc etc pretty traumatic to say the least. At the end I thanked him for the worst 5 minutes of my life (we were both laughing hysterically-anxiously at that point). I’m so hoping that the premedication makes it more tolerable. Send good thoughts as I’m leaving in an hour!!

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Oh I never grabbed the doctor although incidentally he was rather dishy come to think. Perhaps that was because my husband was sitting with me on that occasion. I remember commenting on how much dust I could see under the bed I was dangling off from and that made the doc say he admired my resilient sense of humour.

Sending best vibes. Best advice. Keep calm and Carry On.
And as my first physio (for other conditions) used to say regularly ‘remember to just keep breathing’.

Okay so the appointment was very different form how I expected. PT wanted to use it as an assessment visit—testing neck range of motion and noting which movements caused dizziness. Also did visual testing to assess vestibular ocular reflex. And he tested for BPPV, with caveat we wouldn’t treat it today (but next week) if it was positive because all the assessment would be putting my nervous system over threshold.

This was amazing to me but all tests for BPPV were negative—no nystagmus at all. He did use Semont maneuver instead of Dix Hallpike because “it’s gentler” in his opinion while still showing nystagmus if its BPPV. He also tested for horizontal canal BPPV, and that was negative. I did have moderate symptoms on the left side in both tests but just no spinning and no nystagmus. His theory is that either I did actually reposition the crystals in my flailing, aborted at home Epley on Wed, and/ or it’s a kind of central nervous system echo, where brain remembers it was dizzy in that position in past and recreates the symptoms.

Rx is gently graded vestibular rehab always staying under threshold—it’s modeled on concussion protocol he uses. So my homework this week is to increase my walking by one minute per day 4x/week and to increase screen time by 1-2 minutes everyday stopping if symptoms become too “hot”.

This is quite strange I think. I’m going to ask my neuro about it next time.

I think I’m so terrified of the BPPV happening again (and returning to bedridden state) that I’m working myself up into a fizz!

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IMO the BPPV state is all part and parcel of the condition. It may reoccur when acute. If the preventatives are strong enough, triggers few enough or whatever else is needed for equilibrium, quite literally to think of it, the BPPV symptom will be controlled. If the pot boils over it can return. I have just proved this theory with my recent attack. My attacks were mainly vestibular and episodic for decades with lots of true room spinning vertigo, like every time I moved my head, as the main symptom. During my five plus years on meds I could count my instances of BPPV type symptoms on one hand and vestibular attacks were few and far between. None for over three years and only or four much milder than the originals in total. Plenty of other symptoms I did have but not BPPV. Then the big Boxing Day attack hit and since then it has been BPPV type stuff with a vengeance ever since.

BPPV certainly exists for some as a Stand Alone condition. I personally know one sufferer who has had it for many years. It has never progressed to MAV or migraine for her. I think for some an instance of BPPV is an initial symptom for MAV. For me I think it was just a first indication that my vestibular system was struggling to cope. Subsequent attacks consisted mainly of BPPV type symptoms but lasted 72 hours. Everywhere I have read BPPV that lasts more than seconds episodically isn’t BPPV. It’s something else.

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This is all very interesting @Onandon03. It chimes with my experience. First BPPV attack in October was just violent spinning vertigo for seconds only in certain head positions—lying down and getting up from bed. Rest of the time I felt absolutely normal, no migraine, dizziness, disequilibrium at all. It was only after the Epley, which was quite violent and showed clear nystagmus on one side that I developed the VM problems of intractable migraine and constant sensations of movement, etc. That took a week to become truly unbearable.

This past episode, which started in middle of night on Monday and recurred twice after, seemed very like the BPPV—sudden spinning vertigo that resolved in maybe 30 seconds or with change of head position. That’s why I was so surprised the diagnostic was negative and I had no nystagmus yesterday. Even so I woke again last night because of sudden spinning and found my head was turned to left. Is there any clear explanation for BPPV type symptoms that occur without nystagmus (but are time limited/sudden/violent)? Is it just a vestibular echo of earlier BPPV as my PT thinks or is it a VM symptom I wonder? Maybe it doesn’t really matter and is just part of the whole package of VM. Obviously I will continue to diligently root out triggers and carry on with the VM protocol.

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@Belindy I totally understand; I was terrified too. I don’t know what they do where you are but here it’s fairly common to premedicate with meclizine or diazepam before an Epley for people who are really sensitive and to prevent vomiting during procedure. The theory is it won’t at all mask nystagmus but will make the whole thing more tolerable. I took 5mgs diazepam and 600 mgs of ibuprofen 1.5 hours before my appointment yesterday on the advice of both my neuro and my primary care Dr. The diazepam really took the edge off the spinning symptoms without making me drowsy. And I did have clear spinning only on one side during diagnostics that I could describe (just no nystagmus so I guess not BPPV!) I had no headache/migraine symptoms afterward—-just a slight pain above one eye (probably from visual tests).

Gosh. Aren’t they kind to you. You can’t get within 50 miles of a benzos here in UK. I was told to bring a bucket! Actually if people are that scared it’s probably best not to attempt it in the first place. They could vomit with sheer fear surely. Funnily enough I have thrown up madly, and even dangerously to point of dehydration, as a result of room spinning type vertigo many times but never during an Epley. Not even the vestige of possibility. Odd that.

This has been an extremely enlightening convo that I’ve enjoyed following. For what it’s worth, my PT has told me to ALWAYS treat the BPPV, as awful as it can be. The more your crystals remain out of place, the more traumatized your vestibular system can become, which will continue to aggravate any VM or even PPPD symptoms. And yes, I identify with the dread that comes along with an approaching repositioning maneuver. Those few minutes are indescribable… hard to describe the agony to someone who has never experienced it.

I am in this place now. Sometimes I have clear BPPV, sometimes it’s unclear. You can absolutely have BPPV without nystagmus. I believe that’s called “subclinical” BPPV. I have had that before. However, VM can also mimic BPPV. I have had that before, too. It’s all fuzzy. My doctors make their best guesses. Right now, I am doing preventative repositioning maneuvers weekly, and also treating the VM aggressively.

The anxiety can be crippling. I found a cognitive behavioral therapist, and it is really helping me reframe the way I think about my acute attacks and daily dizziness. Highly recommend.

IMO, and if my balance was good enough I’d be prepared to stand on a rooftop and shout, it is a VM symptom. Yes it can be a stand alone condition in its own right but who should be so unlucky as to get both BPPV and MAV develop more or less simultaneously unless they are linked/combined, one of the same thing I always think. I’ll bump another couple of threads for you to read.

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