Newbie with a BPPV as VM trigger dilemma

I read that as meaning positional vertigo linked/associated with migraine as opposed to Benign Positional Vertigo which many people and most medics recognise as a separate entity in its own right and associate with loose calcium crystals. So assumed it was a term just being used to differentiate. Good article though.

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Yep, at least they are making the distinction, which is a step in the right direction, I hope.

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Wow! How refreshing. I’d keep him around too.

Is Benign Positional Vertigo (BPV) different than Benign Positional Paroxysmal Vertigo (BPPV)?

No. It’s the same thing.

Wish me luck folks—dosing up with Valium today to do another set of barrel rolls for Right side lateral canal BPPV. Have been noticing a lot of positional vertigo lately and figured well what the heck; let’s try to correct it.

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Well it was pretty definitely the same old right side lateral canal BPPV. Lots of strong spinning sensations (which took 30-90 seconds to stop) in two of the roll positions and my partner observed right beating horizontal nystagmus as the first specialist said. I did one move Sunday, two yesterday. Still lots of spinning yesterday though it reduced on the second maneuver. Premedicated with 5mgs Valium each time which barely took the edge off the hideous spinning.

I may redo the maneuver tomorrow as well. Getting the second dose of my Pfizer shot Saturday and don’t want to have active BPPV while I’m potentially dealing with side effects.

I can’t wait to ask Dr Purcell why he thinks I’m getting BPPV so much. Perhaps this is support for the viral infection—inner ear damage theory.

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Based on my understanding of the inner ear there is much that might go awry without any ‘damage’ per se.

Don’t think about ‘damage’ it will just make you anxious.

I know the doctors do not know nor understand the complete physiology of the inner ear and it’s mechanisms.

So unfortunately there is sometimes never a definitive answer as to what is going on.

Just work out what treatment is best for you.

Urgh BPPV is just the worst and loves to create havoc with your migraine brain.

Things I’m doing:

  • Research shows Vitamin D can help prevent it. Get on it. I take 1300 IU a day. With calcium.

  • not at all evidenced based, but both times I got it end of last year, I had been jogging a lot. Prior to this, I didn’t jog! Now, I do not jog/run. Only walk… fast!

  • I’m careful with head movements, no tipping my head forward to dry my hair or tipping it way back to look at the stars. Again, could be counterproductive to VRT but hey, whatever it takes.

  • no electric toothbrush

  • no ear phones in my ear with loud music. Less vibrations. Did this a lot running :woman_shrugging:

  • See a physio and do epley/rolls there. Doing it yourself is risky I reckon.

Now of course all of this is hopelessly lacking any sort of real expert research, I’m so over the top about this not returning any time soon. It caused several weeks of horrific misery for me.

Wishing you the best of luck honey xx

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@Belindy pipped me at that post. I was just about to ask if you had tried Vitamin D. Research suggests 25% of BPPV sufferers found relief by taking 400IU Vitamin D plus 500mg calcium twice daily. Apparently works best in people who are actually deficient (no surprise there then). Might be worth getting your levels checked anyway if Doctor is amenable.

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Have you seen this Mina. ‘Your’ Dr Purcell mentioned in dispatches it seems.

BPPV- EPLEY OMNIAX Chair

I even found nodding my head in meetings irritating!

@turnitaround thanks for your comment—yes I’m not holding that “damage” theory very tightly or anxiously. Damage can certainly be repaired!

@Belindy and @Onandon03 yes to the vitamin D!! I’ve been taking it for years and years due to winter season deficiency but recently upped it to 8,000 ius a day. My recent test said my level was in the high 20s which is not great but not as low as I have been. I need to find a good calcium supplement; I saw that study too!

As for going to the physio vs. doing it at home. Both my physio and the local specialist at the university dizziness and balance center said to do the roll maneuver at home myself and that it was completely safe (I asked all the “could it displace crystals or cause them to go into another canal?? Could it cause BPPV in the other ear??” questions until the specialist said in exasperation “this is basically like slowly rolling over in bed at night and that is perfectly safe for you.” Of course the spinning vertigo sensation feels not “perfectly safe” but that’s to be expected.) On a practical level I’m doing this multiple times this week on their recommendation (3 stints so far) and I can’t get a ride to physio which is 30 minutes away and afford to pay $90 each time to have this done there. I know there are different views on this so as they say your mileage may vary. For me home treatment reduces stress. Definitely having a professional is probably the best option but I’ve been coached through it twice by the specialist so I feel better about the risk of messing something up. I would NOT do a home maneuver unless I knew for sure which canal and side I was treating. So yes get diagnosed first and be sure it’s the same thing before attempting a home treatment.

Oh and that special chair to treat the BPPV—yes Dr Purcell mentioned that maybe I would want to take a road trip and have an in person visit. We’re waiting to see what the test results show and the next telehealth appt before I decide on that huge step. The chair sounds like a torture device to me in my current state but being rid of the BPPV would be worth it!

So far my blood tests are all normal—just waiting on the last autoimmune one. Hearing tests and MRI coming up.

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Just a quick update: all blood tests normal (no autoimmune red flags) and today’s audiology tests all normal as well. I’m down to 20 mg of nortriptyline and the more I decrease this the better I feel (in particular the spongy trampoline floor feeling is GONE). I did 3 home treatments for the BPPV last week and by the final one I was having fewer symptoms during the roll, so I think it was helping. I have received my Dizzy Doctor goggles in the mail and have downloaded the app and hooked the goggles up to my iPhone. Will do the full diagnostic at home this weekend and see where we are once Dr Purcell analyzes the recording. MRI scheduled for June 2.

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Oh you got your own goggles?? That would be much easier to figure out bppv!! Fill us all in on results

So I did my diagnostic on Friday with the new goggles. There was some delay as I had to get a different used iPhone to work with them. Definitely still have BPPV so lots of “good data” for Dr Purcell. To my non-doctor eye, it looks like I have it in the OTHER ear now. I’m curious to see if my amateur diagnosis of apogeotropic left side horizontal canal BPPV is correct. The bigger question is why do I keep getting it and why, if I’m right, is it in both ears? These may be unanswerable.

I will let you know what I find out!

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Heard from the PA at Dr Purcell’s office. He says he watched the video and thought it was indicative of unilateral vestibulopathy not BPPV. So that was unexpected to me. He did say my current symptoms sound more like BPPV, so I’ll have to repeat the diagnostic again before appointment. Basically said to sit tight, don’t worry about doing any more repositioning maneuvers and we’d talk more at the follow up June 4th when will have results from MRI (June 2).

Anyone have any tips on getting through an MRI when lying flat makes you super spinny?

Just make sure you aren’t rushed into lying down. Explain beforehand that you intend to lie down.come back up at your own pace. And say it as if you mean it. Don’t assume they will expect you to be a vertigo sufferer. At my first attempt two ‘assistants’ actually suddenly grabbed hold of me and forced me back down without any advance warning. Made me so bad I couldn’t stay in position yet alone totally immobile for 50 minutes so I walked out.

MRI when dizzy

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