Just wondering if someone can shed some light on the difference. I was diagnosed with Vestibular Migraine but my condition came on suddenly. Got out of bed one night and the world felt fuzzy, surreal and I felt disoriented.
I do get a ton more headaches than I ever did, they are specific to one area of my head always and they were the first sign a long with extreme noise sensitivity. Like when I clang a fork, I can hear the vibration in my ear.
The first episodes I had (despite the waking up disoriented/dizzy) was positional. I had the positional vertigo for 2.5 months and treated it with the Epley in June. But I am still dizzy constantly, off balance and sometimes, talking brings on an extreme light-headed feeling, like I am about to spin.
My ENT said the positional vertigo I had, didn’t sound a lot like BPPV because I didn’t get it lying down. But when I did the Epley, I would spin on my right side for only 10 seconds.
I feel good as soon as I wake up and it seems to get worse throughout the day. Would vestibular neuritis work like that as it’s going away? I am also sensitive to my own head motion.
Vestibular Neuritis is not diagnosed by leading experts anymore: there is no proof the condition is viral, instead they call it ‘acute peripheral vetsibulopathy’ so as to avoid assuming a root cause. If its not acute then its certainly isn’t neuritis and I can’t see Neuritis presenting as positional at all …
And you know my thoughts on the so called ‘migraine’ variant …
It was never acute - i’ve never had to stay in bed. I can function with episodes of extreme dizziness and rocking in between. The migraines started around this time - always in the same spot (left ear) but BPPV was in right ear (weird).
I was also post partum and neuro says I am the prime age for this
ya, that;s what the neurologist recommend I take BUT if I didn’t want to take that to try Vitamin B2 with Magnesium. The Mag makes my heart race though and I have no idea why.
Magnesium can help, but I had to stop it because it impacted my gut too much… if you are not comfortable without it, try the meds, they are a real game changer and you don’t need to take a high dose, even 10mg will probably help!
I remember the search for the definitive diagnosis, unfortunately ENT medicine (and oto-neurology) is far from well developed, and there are SO many unknowns. Look at symptom relief whilst medicine sorts itself out!
That is terrible! I’m sorry to hear that. I’m doing the vitamin B2 route and doing a bit better than I was a month ago. I only took the magnesium once and it actually gave me extreme vertigo, so now I’m only doing vitamin B2 400 mg in the morning.
Try that first before the Ami to see if vitamins can help before prescribed medication. I actually titrated over the course of a week upto 400 cause I felt off every 2 days or so when moving up 100 mg.
I’ll continue to follow this thread and wish you the best.
I have louder tinnitus this morning not sure why… the hearing test and the test they use to measure pressure was normal. She said there was nothing she could see going on with my heads… there also wasn’t any hearing loss at all.
You can have tinnitus without detectable hearing loss. Some hearing loss may in any case fluctuate and be totally reversible. It’s not all about ‘hair cell death’ and viruses that many doctors would have you believe. It may come and go, wax and wane. I suspect it may be a bit of pressure.
I asked her about a fistula and she said there wasn’t anything at all that would even suggest a fistula. I’m feel so hopeless. They did the epley and the dizziness was worse, today it’s better I just am so scared of the spinning again. She said that the type of positional vertigo I described can’t be anything it bppv and that the constant disequilibrium head motion sensitivity may be migraine.
That’s predictable. I had that from three doctors until I met my current ENT surgeon. They just go on flawed medical consensus. It’s very political. Also, strictly, a definitive test exists only in clinical trials in Japan. Do your background reading and draw your own conclusions.
In any case the treatment regime is the same. Conservative administration of meds until you feel well enough to come off them.
There is a surgical option but you need to exhaust medical management. 90% are supposed to heal by themselves (although how they can accurately determine this without a test?) It’s just very (and variably) uncomfortable in the meantime.
The vertigo (much much worse than usual) kicked in an hour after I took the magnesium which is the usual timing +/- for anything that gives me symptoms.
The neurologist even agreed that some people react differently to magnesium. Are you saying I had a physical leakage?
Strange as it may seem (but it’s really not that strange), I suspect that’s the real mechanism behind vertigo. I really don’t think it’s a hallucination. That fits very well into the nebulous model of migraine but I believe the truth is much simpler. Yes I believe most spinning has to be due to a perilymph leak. How else could it be explained?
The only other mechanism is possibly a breakdown of the structure in the ear, but I’m assuming that’s very rare and in any case would show up on a hearing test as low frequency loss (low frequencies go first in that case as the structure is 100x weaker than high frequency part of the ear).
For those of you who are not doing well, and had all the significant tests to rule out the cause of dizziness, I have a suggestion and you could try this out and it will also help the ENT doc to figure out what is going on. I am posting this to reach out to help those who were left hanging without a diagnosis for the dizziness and oscillopsia. Driving made it worse. I was having all these symptoms that many of you were having for the last 4 years and none of the experts in USA or Canada were able to help me until recently when I started using the silicone ear plugs as a last resort. I was also diagnosed with vestibular neuritis and VRT only made my symptoms worse. I have had every test in an ENT book except a surgical exploration. I have also been on every drug that is in the drug book for dizziness and oscillopsia and none helped me. I just ended up with complications from all these drugs. Who will not be anxious after feeling dizzy for weeks and months or years? When doctors (some) can’t figure out what is going on with a patient they label it anxiety. So, be careful. My symptoms completely disappeared after I used the silicone plugs (looks like and feels like playdough, but small) to plug my right ear for 2 weeks continuously. Sound was causing my dizziness and oscillopsia. Even the running of the motor of a fridge, cars driving by, even the subtle noise that I hear while in a car was causing my symptoms. My own sound also produced the symptoms. You could try plugging your ear, one at a time for a week continuously with silicone plug (including at night as others may snore in the sleep or the AC/heater fan may come on). It should seal well and you should hear very minimum through that ear when plugged. See if this makes any difference. If you are not successful, try plugging the other ear as above. Make sure you are not leaving pieces of plugs in the ear. If it still doesn’t help, try plugging both ears or avoid every little sound for two weeks and see if it helps. You should avoid every little subtle sound, for e.g. air condition fan, the sound of the water falling out of your tap etc. If it works notify your ENT doc. There could be some kind of fistula in the ear. Could you please let me know if you had any success with the above technique? For more information please go to: http://vestibular.org/about-balance. Good luck !
Gracy I’m recovering from a diagnosed fistula (originally I was diagnosed with ‘MAV’ by an oto-neurologist then later confidently diagnosed by an ENT due to clear trauma to my ear). As a precaution I stopped using in-ear headphones for a while, since Dr. Hain writes that limiting the movement of the middle and inner ear can help (his practice uses tubes through the ear drum to do this). During this time I’ve seen massive improvements though it’s impossible to say if this was down to me avoiding headphones. Mine was so bad I used to be able to hear the drip-drip and most mornings I have fluid in my ear which drains as I right myself.
See if the medication helps