Can you have both VM and BPPV? Not diagnosed YET.

About 8 weeks ago, I noticed dizziness while rolling over in bed or bending over. It wasn’t too terrible, so I let it go. A couple of weeks later, I woke up extremely fatigued and sleepy after a full night’s rest and had a bad headache (which has been with me for the past 6 weeks). I did a telemed appt. with my dr., but she wouldn’t see me in person without a covid test. Symptoms persisted over the next week, so I got the covid test. Negative. Went to the dr. and bloodwork/MRI was ordered (the MRI was due to issues that have been ongoing for 8 years). I had the bloodwork done, nothing too major came back. About 2 days before the MRI, I woke up with ear fullness in both ears. The day after that, I had TMJ which I’ve never had before in my life. MRI came back fine. Dr referred me to ENT, but had to wait 2 weeks for an appt. The day of the appt. I woke up with fever/chills and had to cancel. Had another covid test. Negative. Started tingling all over–especially my legs which is awful because they’ve been numb for 8 years and no one can tell me why. Re-scheduled ENT appt. and this time, it was only a 4 day wait, but in the meantime was hoping to get some relief. Went back to the dr, but had to see the ARNP who I don’t really care for. She told me I had retracted eardrums and to use Flonase and Zyrtec. I take those every day anyway and it hasn’t helped. Went to ENT yesterday. I do NOT have retracted eardrums. I have some hearing loss which she said she would monitor. She also thinks I have BPPV and/or VM. She recommended I go to a neurologist which I just got an appt. for Oct. 27th, but I have to go back to her on the 23rd to have more tests to see if I have BPPV which she is pretty sure I have. Some of my symptoms may be non-related, but here’s what’s going on. Dizziness, nausea, headache, tingling, fatigue, sleepiness (last two are just sometimes), some hearing loss, fullness in ears, sensitivity to noises, TMJ, sometimes blurred vision, facial numbness. Issues that have resolved themselves: swollen lymph nodes in neck, chills/fever, tender scalp. Sometimes when I am driving it looks like cars are moving, that are actually parked on side roads. I know that sounds weird, but I don’t know how else to describe it. Didn’t mean to make this a novel, but just so much going on and my anxiety is through the roof. I am on google constantly. Any help I could get would be much appreciated.

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Welcome.

They are both diagnosed by their symptoms (you can’t image the ear in any detail to identify moved otoconia!), so technically yes, but suspect there is only ‘one thing’ wrong with you. Unfortunately the aetiology of MAV/VM has not yet been determined, let alone the cause!

If it’s any consolation most MAVers at some point during their condition have had issues with lying down and rolling over. I had such problems for about 3 years, but for me it went away.

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Hi Katy,
Welcome to the forum!
Yes. I have had BPPV and have VM. My understanding is those with VM are more susceptible to getting BPPV for some reason yet to be determined. Here is one quote from an article which I will also link but there are many studies that reference this.

"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."

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Why should you be that unlucky? To develop two conditions both of which cause vertigo and imbalance when many people go through an entire lifetime never experiencing either. IMO medics tend to match on to something they recognise of think they do and BPPV is the scapegoat. BPPV type symptoms are part of the MAV spectrum of symptoms. My very first attack mimicked BPPV which is why I was misdiagnosed for years. BPPV is pretty specific. One locum who knew bit about vestibular issues. In fact he was the only one who put me back right, albeit temporarily, by the Epley manoeuvre said something to the effect if BPPV lasts longer than a minute it isn’t BPPV and that it should stop anyway the minute you change position. It is totally positional. I have a friend who has had BPPV since her early twenties (now over 70). It never changes. She gets it every time she lies down at or below a certain angle. Getting in and out of bed and the dentist chair are examples. She never gets any other symptoms. Never car sick or has any balance issues at all. It lasts a few seconds until she moves beyond the trigger point. That’s it. I think she’s pretty typical. Obviously it’s possible for one individual to have more than one condition but your question here is common and I would suspect it’s all just part of the VM.

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@Onandon03 They will be doing the dix-hallpike on me when I go back to the ENT on the 23rd and if that’s positive, they will do the Epley, so that could help solve at least the dizziness and nausea. I haven’t researched that as much because I’ve been on this site reading. My balance has never been that great (I’m a little clumsy), but it doesn’t seem to have been too affected by all this as long as I take it slow when I get up or bend over which I have learned to do. I did get up in the middle of the night to go to the bathroom and granted it was dark, but I ran into the doorframe and have a huge bruise on my hand, but I haven’t fallen yet, so that’s good. At this point, it’s just a waiting game until I go to those appointments.

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One thing my Dr asked in an article I read that stuck with me was: “do you have photophobia / light sensitivity along with vertigo?”
If so, your likely to have VM. Seems those are the symptoms that are not likely to be tied with other balance disorders.
Please keep us updated on your progress!

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I am sure you will probably spend far longer researching Dix Hallpike and Epley than it actually takes to carry both out. Really cannot understand why the long delay. Four weeks for about 15 minutes work? Seems ridiculous. Besides BPPV is so transient you could have had it when last seen by the doctor and not have it a few minutes later yet alone weeks. It’s usually carried out during an attack. Seems odd to me. Btw I should make sure you put a light on going to bathroom at night. When balance is poor brain uses vision to make up so best to give eyes best chance. People with balance disorders tend to be less steady getting up from sleep. Lying down uses different inputs. You don’t want to add broken limbs into the equation.

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@Naejohn I don’t think I have the light sensitivity (unless in full blown migraine mode), but I do have the ear sensitivity. Certain sounds that never bothered me before, drive me crazy now. The day I went to the ENT, I asked if they could just do those maneuvers that day and they said no. After researching, I started wondering the same thing you just said. How do they even know that I will still have that symptom 3 weeks from now, but I guess I used up all my appt. time and that was that. It’s a $75 co-pay every time I go, so I really wish they would have gone ahead and done it, but I didn’t have a choice in the matter. She recommended I go to a neurologist and have that appt. a few days after the ENT, but am I correct in thinking that only the neurologist can diagnose VM?

A neurologist has far too limited a scope. You need an oto-neuro or equivalent imho. A neurologist giving you a diagnosis that guarantees a monopoly on your treatment is not working from an unbiased platform.

@turnitaround Wow, I don’t even know if they have those here. I will have to do more research. Also, where I can go is limited to my insurance.

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Perhaps I’m being a bit harsh. But I make no apologies for encouraging a more holistic view of the body. MAV I’m convinced is a systemic issue. Not just a brain problem. But sure: a neuro is definitely more than qualified to prescribe the relevant drugs. I just don’t believe they have the broadmindedness to solve the ultimate riddle we are dealing with …

A bit harsh? Um … Maybe

I don’t believe either have any inclination to solve the ultimate riddle. Nobody anywhere seems to be bothering with root cause and guess now with Covid to chase any chances are even slimmer it will change any time soon. Advances have been made very recently in introducing all these new injectable migraine prevention drugs but we don’t seem to ever hear of any fresh research into the root cause(s) of it. They all just treat the symptoms which is fine for relief of suffering. I certainly wouldn’t knock it. Sure specialist MAV Neuro-otologists if one could find them would be The Very Best Bet but even general Neuro-otologists are pretty thin in the ground and very expensive. The only one I could find brilliant as he was in giving me a probable DX in about five minutes after 12 years of misdiagnosis by GPs and a half dozen clueless ENT consultants, had no interest in MAV and refused to see me again even if I wanted to. However a neurologist is highly trained and IMO should be more than capable of giving a diagnosis. There are specialist migraine neurologists around. The one I saw has researched and written up papers on several innovative preventatives. Both classes of specialist have access to MRI etc and rely heavily on the radiographers interpretation. If they had any suspicions surely they would refer on? Once diagnosed recommended treatment protocols are set out, supposedly for Doctors to easily follow, in UK by NICE and in Scotland by SIGN. Presumably other countries have similar strategies. I see a neurologist as a safe bet for a diagnosis.

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I am in the US. Florida. I have the disc of my MRI that was done about a month ago and the only thing on it was punctate subcortical leukomalacia whatever that is. It does say that is seen with migraine headaches and small vessel changes. I am hoping that if I tell him what the ENT suggested it was that he will know what it is and can make a diagnosis of that based on my symptoms. He may want to do more tests first and I am sure it probably won’t be done in one visit, but maybe I will get lucky. I have a link to the neuro I am going to below.

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You didn’t detail your ‘numbness’ and there’s no reason you should have. Depending, it can be a symptom with certain migrainey type conditions like Basilar for instance. Otherwise not too common as a VM symptom from what I have read. I can get numbness in half of one forefinger, always the same one, just before or during acute attack and I am not Basilar. Might just be worth checking out Charcot Marie Tooth symptoms to see if they resonate with you. They do incorporate certain types of numbness/lack of feeling and some overlapping dizziness stuff.

You told me that last night and I forgot because I went to bed. Most of the symptoms do seem to match up with what I have going on except that I don’t have high arches. I have fallen arches and am flat footed. There may be exceptions to the rule, so I will research it more.

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The connection I have that told me CMT existed was rather the reverse situation. At a time when it was diagnosis purely by symptoms, he was diagnosed on foot characteristics and numbness, most particularly in fingertips. For example he can lift very hot out of the oven dishes without feeling it and as such burnt himself a lot as a child. By the time he attended a second ten-year check up a proper diagnostic test, by machine I have no further details, had been brought into use and it transpires he never did have it in the first place. But indeed I understand it’s less likely but not impossible to have CMT and flat feet. Worth checking out with the neurologist I’d say.