I’m new here, and wondered if I could learn from some of your experiences and knowledge.
I have been suffering with recurrent quick spins for the last nine months. These are basically short (~3 seconds in duration) spells of severe rotational vertigo (the most severe I could ever imagine). After a spin, I will feel like I’m tilting, on a boat, or on a turbulent aeroplane for a couple of weeks afterwards.
I’ve been to a specialist ENT/neurology clinic, where the neurotologist diagnosed me with probable vestibular migraine. I have done some reading about this, and it doesn’t really sound like me at all. I have never suffered with migraines of any kind, there is no family history, and these quick spins don’t seem to be a feature of VM. I also don’t have any additional features during my spins - no sensitivity to light or headache or anything.
I asked the neurotologist if it was possible for me to have vestibular paroxysmia instead, because of the quick spin issues. He said it didn’t sound like that, because in vestibular paroxymia you usually feel fine between attacks, and have no vestibular symptoms (unlike me). I’m not sure if this is strictly true, as I have read some case reports about suffers of VP feeling like they are floating inbetween attacks. I also had asymmetric caloric responses, which would seem to fit with VP.
Does anyone here have any thoughts on any of this? Does anyone recognise this as sounding like VM (or even VP)? Any help would be much appreciated. Feeling a little isolated at the moment
Goodness, that’s a new diagnosis on me, I had to look it up (VP).
I think in any case MAV/VM is probably something else. My personal theory is MAV is what a lot of ENT’s used to call Secondary Hydrops. I was diagnosed with MAV then SEH. Hydrops compresses the nerves within the ear chronically and fluctuates. It can also cause vertigo. It can develop from a leak of inner ear fluid (perilymph) as the body compensates and attempts to keep the fluid pressure up despite the leak.
I sometimes throw my hands up at ENT medicine because a lot of these diagnoses seem like very convincing ‘stories’. People seem to forget that MAV is defined by a set of symptoms (and a lack of profound hearing loss as per Menieres), it does not presume the cause is migraine. Then people get carried away and imagine that a ‘silent’ migraine is permanently active and causing the 24/7 symptoms. I personally had had only one migraine in my entire life before ‘MAV’. I feel the Hydrops explanation for those constant symptoms is far more convincing …I also believe that spins are very likely to be due to fluid leaking from the inner ear and causing a current which stimulates the movement sense. Perhaps there are other causes of ‘the spins’ but to me that would be the most simple explanation. The windows to the inner ear are exposed to mechanical and barometric pressure and can easily be damaged with trauma, leading to chronic leakage as the wound goes through a cycle of healing then reopening under pressure … and age probably has an effect on the strength of these windows too as, for example, collagen levels decrease with age.
Hello Becky. I used to get mini spins. I could be standing talking to someone and suddenly I would wobble and have to grab something or someone to stay upright. It lasted only seconds but the aftermath of feeling unwell lasted for days. VM meds have stopped all that I am delighted to say because people kept asking me if I had had too much alcohol!
I am convinced my spins were physical in nature because they would almost always occur when laid down or when laying down. Sure I had a few standing up but they were the minority. Head pressure is known to be higher when you are laying down, so its not surprising.
I’ve been clear of them now for a couple of months … (touch wood!!)… and this has happened just as a sensation of fluid in my middle ear that I’d had for over two years has all but disappeared. I think these things are linked, and its definitely physical for me and it seems something healed enough for the spins and the leak to stop despite no change in my medication.
One of the world famous Neurologist in New York thought I had VP, but could not confirm it 100% as I couldn’t have Gadolinium for my MRI. But, all my symptoms sounds like yours, but my symptoms increase when exposed to sounds including low frequency and with car rides. I also have oscillopsia. I was thinking I may either have VP or some kind of fistula. I have thrown out all other diagnosis as my symptoms doesn’t match anything else.
I will upload a Para from a book re: vestibular migraine in the next post
Sorry, couldn’t upload. Here is what it says about VM: The typical patient is one with a previous history of migraneous headaches or motion sickness in whom the symptoms change to include episodes of dizziness. Although, typically of the “rocking” type, the dizziness may take any form, including true rotational vertigo. Attacks usually last minutes to hours , but it is not uncommon to see patients in whom symptoms last several days or weeks. Attacks of vertigo are often associated with other migraneous features, such as nausea, photo phobia, phonophobia, osmophobia, and increased motion sensitivity - an avertion to self movement and external motion.
I’m now wondering whether my issue may be vestibular paroxysmia. @Bex85, my only symptoms are short, severe attacks of rotational vertigo. As you described, “the most severe I could ever imagine.” Mine last maybe 30 seconds or so, and they only occur once every 2-4 months.
Unlike @Bex85’s case, I don’t have any lingering symptoms afterward, at least not lasting two weeks. I may feel “off” or slightly dizzy for a couple of hours afterward. My most recent attack was a couple of weeks ago and I was fine almost immediately afterward.
I’m scheduled to see a neurologist next month and will be asking about this. I’ve had an MRI of my head but I don’t know whether anyone was looking for the signs of vestibular paroxysmia when they reviewed it. I have the MRI on a CD and will be taking it with me to the appointment.
@GetBetter, Vestibular Paroxysmia isn’t PPPD. And from what I’ve read it’s different from MAV. And in 95% of the cases it can be diagnosed by MRI:
“Vestibular Paroxysmia may manifest when arteries in the cerebellar pontine angle cause a segmental, pressure-induced dysfunction of the eighth nerve. The symptoms are usually triggered by direct pulsatile compression with ephaptic discharges, less often by conduction blocks. MR imaging reveals the neurovascular compression of the eighth nerve (3D constructive interference in steady state and 3D time-of-flight sequences) in more than 95 % of cases.”
One drug in particular seems to help many cases of Vestibular Paroxysmia:
“The frequent attacks of vertigo respond to carbamazepine or oxcarbazepine, even in low dosages (200–600 mg/d or 300–900 mg/d, respectively)…”
Vestibular paroxysmia is caused by a vascular loop rubbing on a nerve. You can see it directly with an MRA with contrast. I have MAV and a vestibular loop. My VRT suspects VP is the cause of my more violent quick spins while MAV supplies the background of more or less constant reeling. Read the VEDA site (www.vestibular.org) for both conditions and you’ll have a better idea which applies. VP is treated with a couple different non-MAV drugs.
@flutters, have you taken either of those drugs (carbamazepine or oxcarbazepine)? I looked them up and the potential side effects sound even worse than any of the MAV drugs.
This is what I found on the VEDA site:
“Vestibular paroxysmia is believed to be caused by the neurovascular compression of the cochleovestibular nerve, as it occurs with other neurovascular compression syndromes (e.g. trigeminal neuralgia). The irregular and unpredictable spells are the most disabling aspect of this condition, making some daily activities, like driving, extremely dangerous. In theory, given its pathophysiology, surgical treatment could be considered. Still, due to the substantial surgical risks involved, this approach is reserved for particular cases where pharmacological treatment is not effective or tolerated. Treatment with carbamazepine (Tegretol®) or oxcarbamazepine (Trileptal®), both anticonvulsants primarily used in the treatment of epilepsy, is usually not only effective in small dosages, but is also diagnostic. Vestibular depressants are not effective.”
No I haven’t taken either because of the side effects. I’m so sensitive; meds often wreck me. The surgery looks hideous, too. I basically told my VRT I’d skip the neurotologist and just live with it because I’ve had enough of a medication making me feel worse than the problem. My issue is positional and so far doesn’t affect driving, except one notable exception that prompted my husband to suggest maybe my next car should have less pervious materials that are easier to clean. That was just gross. At least I’d managed to park the car. I’m not really in danger, unless you count mortification. So far mortification won’t kill you, even when you want it to.
That said, this morning MAV is making me feel like that scene in the Avengers movie where the Hulk repeatedly slams Loki into the concrete floor. I have a great desire to get out of bed and go to the bathroom but a lot less desire to do it on hands and knees or start puking when I get there. My son is home for spring break. I’d scare the crap out of him, so I’m hiding. I see my neurologist today. I guess we’ll be having the ‘you quit topomax, didn’t tell me and now want a new med?’ discussion. My GP actually got mad at me about it yesterday and wouldn’t let me leave until she pulled a bunch of bloodwork (kidney function was her specific beef regarding my dietary choices). Stressing me out isn’t helping.
Sorry. Personal pity party over. For a VP diagnosis, get an MRA with contrast. That’s more definitive than we usually get with MAV.
I had an MRI, both with and without contrast, in 2016. But it sounds like an MRA is a little different. I’ll ask about that and also about an EEG, which is why I’m going to the neurologist in the first place (the EEG was suggested by the neuro-otologist that I saw in January).