Hi,my ents dont knwo whats up but mav has been mentioned,i have been a migraine sufderer for years and years in various diff forms.Does anyonenhave sudden bursts of really intense ear pressure that cant be relieved by popping ears etc i have sound distortion as well and very loud tinnitus.during thes e times my jead literlly vibrates with any noise.my hearing has come back unchanged since 2014 so no hearing loss.
Hi @danni1979 - so sorry that you’re having trouble! Migraines are the pits! Yes, I have buckets of tinnitus, ear pressure, clicking, ear popping and the general feeling that I’m always on an airplane. Many folks within this forum have this issue (my vestibular therapist explains that it’s a symptom of the migraine) - you are not alone!
When they were testing me for labyrinthitis, meniere’s disease, etc, my ENT conducted a battery of ear tests, did your ENT do those with you? Hearing tests? Ear pressure tests? I assume they’ve conducted hearing and ear pressure tests on you?
What are your other symptoms that lead them to think you have vestibular migraines? What are your other migraine symptoms? Do you have a neurologist who treats your classic migraine? What treatment typically works? How have you managed your migraines in the past?
Nasla sprays wont help as its not my eustachian tibe dysfunctioning,theyre not sure where the pressure is coming from.ive had hearing/tymp test,have an mri on tues.
My tinnitus has always worsened when i have migraines nut the tinntius during these episdoes is veey different.i get aura(vision) dizizness,nausea etc,they think these episodes are migraien related as i ahve no hearing loss and they alwyas happen about the same time im either getting a migraine or just had a migraine x
Ok. If it’s vestibular migraine, the symptoms you’re describing are most likely caused by the migraine (just like any other migraine symptom you experience - visual aura, prodrome, nausea). Have you started tracking these new symptoms in a diary or migraine app (I like migraine buddy but there are plenty out there)?
Vestibular migraines are a bit different because they like to hang around all of the time. I also get classic migraines… they hang out all of the time too but from what I’ve read about most other classic migraine sufferers is that migraines typically don’t do that. So it could be that you’re not used to migraine symptoms shadowing you this way - it’s effing annoying and right scary. Particularly in the beginning when doctors have to rule out everything else and they put you in the MRI machine (it was my birthday, I was alone, it was a not awesome way to celebrate).
The good news is that you already know how to manage migraines so you already have an edge! Vestibular migraines take a different kind of patience because they deal with dizziness, light-sensitivity and noise. But the migraine isn’t painful. If you get dizzy & nauseous, pick up peppermint oil as that can quickly allay the urge to hurl; keep vials of it in all your purses. Follow the migraine diet (no alcohol, nuts, msg, aspartame, etc) until you can identify your trigger foods.
Best of luck with your mri!
I am a long-time sufferer of Migraine/Vestibular Migraine (but had a good 6.5 years or so where I was just dealing with the headache piece on a less frequent basis and had the vertigo really well controlled). However, the past nine months have been terrible (I won’t bore you with the whole story - maybe later :)) Anyhow, I noticed in this post that you said that your vertigo/migraines hang out on one side, which is why I’m writing you… So, the first time I dealt with the vertigo, I felt like I was CONSTANTLY rocking on a boat - it was terrible. This time, I had that for about the first 2 - 3 months, but that has subsided (thankfully), and I continue to have chronic migraines and a general sense of disequilibrium. My headache pain is nearly always on my left side and my vertigo is nearly ALWAYS on my right side (right side of my head feels heavier, more sensitive to motion when I nod, turn, sometimes feel like my head is just moving ever so slightly to the right, hard to watch tv or drive without that side of my head feeling just “off,” etc.). Do you experience any of these feelings on one side only? I would love to have a bit more detail about what you are dealing with in regards to the vertigo piece.
Note that I’ve gone to Dr. Hain in Chicago for the past 8 years for my conditions, but I have not been getting as far this time with him (though he’s a great doctor and just super nice overall), so I am seeking a second opinion this Friday with Dr. Oas in Columbus, Ohio at Ohio State University. I was on many different drugs the first time I experienced this before finally finding success with a high dose of Topamax and Pristiq. This time, that combo didn’t work, Botox didn’t work either, and I’m having very limited success currently with Effexor.
Thanks for any insight you have!
My migraine, dizziness/imbalance, tinnitus/ear fullness AND bppv vertigo all hang out on the right side, as those an invisible force is pushing my head & the room is turning with it. On occasion I’ll get the rare ear pop in my left ear but for the most part everything is localized to the right (my fibromyalgia symptoms tend to radiate down the right, too).
Hope this helps!
Thank you, Primer! I can so relate to the invisible force… It’s been a little different for me this time than the last time, which is why it’s been so frustrating to decipher if it’s still the migraine or if it’s something else going on! (Probably just migraine in one of its many manifiestations!)
Yes. I’ve been treated for bppv for the past week and it turns out that my migraine started taking on bppv symptoms. it took my vestibular therapist three different maneuvers (with me wearing the goggles) to sort out that the bppv was gone but that the migraine was manifesting in a bppv way. VERY confusing. i’m just going to call it: migraines are lame.
The first go round I had with vestibular migraine in 2007 through 2009, I also had BPPV (just like you), but this time, I’m not showing it at all. So…yes, just lame migraines causing all the weird, one-sided dizzy feelings (and a host other symptoms, along with just regular migraine pain). Thanks again for replying - I will let you know what I learn later this week from my ‘second opinion’ neuro-otologist!
Well i saw ent on weds and hes confident i have vestibular migraine…i soooooo want to believe him but the only thing i can find about the sudden ear pressure and tinnitus is menieres!! Its scaring me!! X
Did you pass your hearing test?
If so, you don’t have menieres!
One thing I constantly remind myself is that our migraines have symptoms that aren’t typical migraines. So right now I have a classic migraine with level-7 dizz, low-grade tinnitus and ear fullness/popping on par with a plane landing. This is all part of our migraine. It’s neurological. It’s nerve endings going cattywampus. So if you passed your hearing test, you have a different journey ahead of you: start identifying your migraine symptoms & triggers as soon as you can. Don’t let them scare or overwhelm you. Stop looking up menieres symptoms and applying to yourself (I did the same but it was with a misdiagnosis of a damaged carotid artery). You’re going to be fine but it will take time and understanding. Stay calm (anxiety exacerbates migraine symptoms) and map out your routines, migraine diets and supplements. Schedule an appointment with a neurologist or a neurootologist to get on the proper migraine meds.
But first things first: if you passed your hearing test, it’s likely that you don’t have menieres!
Yes i did i know i need to stop it im just scared of having it.According to dr im “classic vestibular migraine”.i had unexplained vertigo betweenn the ages of 5 and 18,then at 21 i satrted getting migraine sbehind my ears and in my face,at 30 i started getting auras(kalediscope vision& dizziness) then the head zaps started(never linked them to migraine till dec when i jad them alot during a 4 week migrainy time)at the end of the 4 weeks i had my first episode of the sudden ear pressure n tinnitus,then all fine till 1st march when it happened again nthsi time i remembered id been migrainy day before n had a stinking migraine on the 2nd,the follwing 2 weeks were awful,so kuch dizziness,talking wpuld make me dizzy,vibrayions made me dizzy,my head and areas of my face would constantly tingle and feel full of pressure.19 days of morning vomiting.Ive still got alot of all thsi now so am clueless what could be my triggers.I am so pleased im not the only one whos done it xx
Yes, forget about Meniere’s. Focus on improving your migraine. I know the sx are crazy, but don’t chase after them, focusing on each one. Say to yourself: it’s just migraine - ALL of it.
Trust me, when I had periods when I felt a bit better, ALL the sx improved.
Hang in there and do as primer says.
Oh golly I sobbed when the fourth neurologist confirmed I had migraines (they all had, this one felt like the nail in the coffin!). It feels like a life sentence! But you can gain control over it as soon as you begin to understand it. Here’s the migraine 4-11:
find a solid neurologist (I highly recommend going through a research hospital - it’s been a life-saver for me. Research hospitals are like a carousel of opportunity for you). Do that this week. When you go to the neurologist, go with a written list of questions: meds, action plan, exercise plan, supplements, etc. Write the answers on the paper. Be open to alternative treatments like biofeedback and acupuncture. Don’t let any of it scare you.
download the Migraine Buddy app. It helps you track your migraines & sleep. Since yours are vestibular you’ll need to adjust some of the settings but that’s easy enough. Migraine Buddy will help you understand your migraine’s habits & behavior.
adopt the migraine diet. And not just the elimination diet. Pump up your leafy greens, increase your potassium & magnesium intake. Avoid msg, soy, gluten, dairy and aged cheeses and meats. Joy Bauer’s website has a ton of great info about it. Stop drinking coffee. Stop drinking sofas & sugary juices. Drink buckets of water. When I crave juice I mix aloe Vera juice with mineral water - great source of vitamin c + electrolytes. Basically: eat smart. This will nourish your body for whatever meds you’re going to take.
don’t freak out about the meds. I’ve been on a ton of them. Don’t over-research them - ask your neuro educated questions (i.e.: when should I take them, what foods should I eat & avoid), and understand the science behind the side effects so that you can protect yourself against them (i.e.: if you go on topamax, eat yams & coconut to avoid leg tingles from potassium deficiency). Anxiety is a big part of migraine so get ahead of it.
start working out. Exercise and habituation is key for getting better. It’ll be jarring at first but it’s really, really important for migraineurs (I’m on the bike right now & I’m battling a really, really nasty migraine). I like the recumbent bike because it’s sitting & you don’t have far to fall - but others prefer yoga & tai chi. Walking around the block is also important. Get your heart pumping.
once you get your neurologist, talk to them about taking the right supplements. Magnesium, feverfew, butterbur, riboflavin, fish oil and B2 are the migraine favorites - but some may conflict with your meds. Also ask about dosage & ingredients. Make sure there aren’t hidden ingredients like msg in them.
find a therapist through your insurance - anxiety & depression is such a part of migraines. Regularly seeing a therapist will help you sort through scary things (grocery stores), as well as making healthcare decisions. I go twice a week and definitely would not be as well adjusted were it not for my therapy sessions. My therapist actually bought a copy of Sacks’ Migraines and he would read me passages from it so we could discuss it - therapists do stuff like that. It’s helpful shit!
don’t feel sorry for yourself! Don’t panic! All of your symptoms are your migraine and nothing else. Empower yourself to overcome the feelings of anxiety about having them, then the migraine symptoms will feel less scary and overwhelming day by day.
Here to help any Qs when you have them - hang in there !
Wondering how you are doing and how your one-sided dizziness is doing? I’ve definitely made a little progress, but it’s still up and down. I think some of my relief has come from a higher dose of Effexor + PT for my neck. I’m still not doing VRT and am going to reach out to my neuro and see what he says on that front now that I’ve had some reduction in the headaches. Fill me in when you have a moment. Thanks!
Well Danni you’ve certainly been with mvertigo.org a long time and I see you’ve been down this road before with the Menieres/MAV dilemma. Not surprising really. All the bizarre symptoms we suffer with these vestibular conditions it’s a sheer wonder we don’t at times doubt our own names yet alone diagnosis. I must admit @primer seems pretty clued up on MAV. I’ve a strange feeling I recognise the dog from internet posts somewhere else. I wonder how she’s doing now, eh. She hasn’t posted on here since 2016
Hi, yes I have, I pop up every now and again lol. Posts get lost and new people join so it’s always good to see if others have the same, it’s the one symptom which makes me think… Is it??