My heart goes out to you. My VM was also triggered by BPPV (OR BPPV by VM?). Iāve had regular BPPV episodes since February (really for 20 years, but every 6 weeks since Feb), and now the line between the two is fuzzy. For instance, Iāve been feeling a little off at night (daily VM symptoms still raging, but theyāre usually OK at night) and so, three days ago, I did a home Epley. Didnāt feel classic rotational vertigo in the Dix Hallpike, but absolutely felt movement after a delay and a āquick spinā that resolved quickly. The delayed spin, quick resolution and positional element is absolutely BPPV. Yes? Iāve repeated the Epley every day. Same results. No improvement with residual feelings during the day.
Iām wondering now if this is all one big 14-month intractable BPPV episode (and now with either VM or PPPD?) and maybe I should get the canal occlusion surgery. I canāt find any info on this surgery on the boardāanyone know anyone whoās done it successfully?
Iām weaning off nort, too. Didnāt do squat for me. Doc wants to try Effexor next, but Iām terrified of side effects and withdrawal. I might try propranolol next (iām already on 15 mg, but canāt go too high because of low BP).
@dizzybit I donāt know where you are but have you seen work/website of Dr Kimberley Bell? She is a PT who treats complex BPPV in southern CA. And has personally had BPPV dozens of times: chronically. Iām across country from her so canāt see her or be helped by her but she referred me to it oto-neurologist Ian Purcell who does do telemedicine. I will tell you how the appointment goes and if he has any good advice. Iām sorry for what you are going throughāsending you hope and strength!!
Oooh howās your back feeling? I was sleeping upright for months and my back was killing me.
Ok. Good plan and advise. I think when it was done for me, it didnāt work. The neurologist did the dix hallpike a few days later and saw it still there and, strangely, left as is. Now I think back, why on earth did he not do the epley then? Perhaps he knew it triggered off vm?? I wonder if I would have been as bad if he fixed it.
Interested in this. Iāve researched and I feel itās a bit risky. So sorry to hear your story @dizzybit, god so many times! Nightmarish
Iām certainly following your post with interest. And puzzling as to how all this fits together with everything there is to read everywhere about VM etc. Interested to hear what was said about improvising your own VR and more particularly about the body needing two months to ācatch upā to changes. Notice this myself all the time though couldnāt put a timescale to it.
I donāt dispute itās true. Indeed Iāve read many times that the vertigo in āMigraine Associated Vertigoā only ever occurs (a) during an acute attack and/or (b) for a few hours or (c) as prodrome and never could occur 24/7 and Iām living proof how inaccurate that statement really is. However for years Iāve lived with the belief BPPV only occurs for seconds although of course repetition is common this statements a bit of a surprise. Makes one wonder it is possible for medics to differentiate between all these different classes of vestibular disturbance and make sure everyone is put in the right pigeon hole. Certainly makes on wonder. After twelve years of misdiagnosis (I assume) as BPPV and having been occasionally referred to as a case of BRV - Benign Recurrent Vertigo a neuro-oto came up with āmigraineā and I was grateful simply because unlike the other two diagnoses that did at least have a possible treatment option which, up to a point, works.
One question. What involvement has the BPPV produced with regards to photophobia? Same question to @dizzybit. I ask because it wouldnāt seem sensible to me for it to have a major involvement if your root cause is BPPV.
Yeah, I had to incline at an angle for over a year and it ended up really hurting my hips. But it was that or forever have the sensation of spinning whilst reclined.
This whole BPPV/VM thing imho makes the whole idea this condition is purely migraine simply preposterous. Iām not stupid and I find it almost condescending for medics to suggest it is. Iām not fooled for a second.
Iād never heard the word āmigraineā mentioned until the neuro-otologist and he gave no further explanation. Just literally the one word āmigraineā as he ushered me out of his office. Much later in writing he said the causes of my dizziness were āmulti factorialā, again without further explanation.
Had my telehealth appointment with Dr Purcell this morning. His staff was very helpful and efficient and took a detailed history. The short version is he needs more data, he says. He was stunned I hadnāt had an MRI or a hearing test yet. So Iāll get those, some different blood work and also more vestibular testing if warranted by those tests. He said my previous VNG/ENG wasnāt complete enough.
His first thought on reading my history is some kind of vestibulopathy. Apparently itās really uncommon for BPPV to cause daily debilitating dizziness for months and while those symptoms could be migraine, the sudden onset makes him suspect there was an underlying cause (like a viral infection) for BOTH the BPPV and the daily vestibular dysfunction. So if thatās the case, there may have been inner ear damage that caused the shedding of the crystals and also the daily symptoms. Before starting me on a new preventive med for VM (Iām going off nortriptyline) he wants to be absolutely sure thereās nothing else going on.
Not sure how Iāll lie prone for the MRIā¦maybe theyāll let me do an open/standing oneā¦
Thank you for the recommendation! I emailed her, but she is too far from me. She recommended Dr. Schubert at Johns Hopkins, who I am currently seeing! He is a multi-hour drive from me, but itās worth itā¦ I hope. Your appointment with Dr. Purcell sounds promising!! Are you going to try to get those test done at a local ENT and sent to him?
I had a feeling youād say that. Photophobia is very much a Migraine issue. At one time it was virtually considered diagnostic however in recent times itās been more appreciated that it does occur with other vestibular conditions.
Because I tend to overuse them.
Iāve been interpreted as grumpy so many times via text message or email, so now I go out of my way to seem excited and happy.
100% agree. āMigraineā is a dumpster diagnosis, similar to āautoimmune disorder.ā During my appointments, I often think, JUST SAY YOU DONāT KNOW.
I wish medics would admit their limitations more often.
I was pleasantly taken aback when my doctor, a PROFESSOR at a TEACHING HOSPITAL, said āYeah, we actually donāt know how the inner ear worksā ā¦ wah!!! Well of course they know little bits (like how we sense angle) but we know what he meant.
What he meant in more detail were things like:
how is balance between the perilymph and endolymph maintained
if an otoconia gets loose, how is it cleaned up
whats the exact physiology of a vestibular attack
Science knows none of these things
etc etc.
Heās been my goto ever since, just for being honest.
Iād love to know what āmigraine positional vertigoā is! They are really stretching the definition of a migraine here! Now migraines can have angles? That doesnāt make any sense? What is the aetiology and cause of that?
What is the aetiology and cause of that?