Just wondering if anyone can shed some light regarding my ears. They are both always full and popping upon yawning etc. Also sometimes I get mainly in my left ear a fluttering noise for a minute or so and can hear my heart beat in my ear then it goes. Is this linked to mav?
Yep I get this too… aparently its to do with the blood vessels being restricted. I think the name is Pulsatile tinnitus (dont quote me) I often find this to be when im exercising or if I have overdone it. I probably would describe my ear symptoms as crackling when I move my jaw - it sounds congested but I think sinus issues are also quite common. Maybe one other is a fullness and I also get a fluid feeling almost asif the fluid is wishing from one ear to the other. Its very common with MAV.
I wasnt aware until I joined this site that most people with this condition have similar ear symptoms too.
Hope this helps
I had a fluttering and even muffling in my ear every morning I’d wake up at the moment I rose up from bed. It’s diminished over time but still get it slightly when I have a cold. I get spells now where it stops.
I get stuff in my Eustachian tube which squishes and even cracks if I open my jaw wide enough on rare occasion (presumably dried)
I get tinnitus pretty much permanently but at varying levels of annoyance. It used to pulse really badly after some meals. That’s eased.
Thanks Kirsty for your reply. So if it’s blood restriction what drug would help that.
Also if I stand up sometimes the blood feeling rushes up through the back of my neck and in to my head then it beats in my head.
It’s so frustrating isn’t it! Also sometimes I can here my voice in both ears when they are really muffled.
Are these symptoms linked to mav? Get ear ache as well sometimes
Hi Natalie, yep I have this also. For me it ranges from high pitch sound to that pulsing where I can hear my heart pumping. I also get that crackling sensation when moving jaw left to right and currently experiencing a lot of discomfort with noise. All part of mav I’m afraid. Meant to say I get a lot of echo also.
It’s so frustrating isn’t it and so hard to deal with all these symptoms
You do get used to the tinnitus eventually and for some it goes (apparently). It has certainly diminished in ferocity and significance for me.
The best remedy psychologically is healthy distraction of some interesting past-time, work or social engagement.
The better you get the more the symptoms are overwhelmed by the distraction and not the other way around!!
Hi there. I have had tinnitus for years and it does vary, my sister gets it too. I get the sound like’your heartbeat in your ears’ at times but the ringing/hissing never goes. Also I get the fluid in my ears and when I blow my nose and swallow my ears either stay blocked or I can feel the fluid moving. Do you get that? Thanks R.
It is both amazing and frustrating in equal measure that so many of us suffer ear symptoms yet in my experience there is not an ENT or a Neuro who can explain the mechanics of how a migraine causes this in a way that is reasonable to understand. To me there is a vast difference between a “feeling” of pressure or fullness and actual “popping” - I get that a headache can make your ears feel pressurized because your whole head feels like it’s inflated but if the ears are actually popping on yawning or valsava that surely means they are actually blocked. So what is causing them to be blocked? Surely ears popping is purely a function of the Eustachian tube - that tiny tube about the width of a hair that connects the ear to the back of the nose - has anyone come across a credible medical explanation of how migraine can cause the action of this tube to cause symptoms in so many of us? If you look at common examples of how this tube can act up the causes are easy to comprehend eg on a flight ears can block and unblock because they are affected by pressure changes in the aircraft cabin, if you have a head cold or sinus infection the Eustachian tube is affected because it is congested from the mucus in your nose, improper ear drainage from otis media, allergies like hay fever cause increased mucus production which in turn blocks the ear, ear trauma etc - these all have documented and credible explanations for ear popping but if you have migraine and ear popping it seems all that is offered is a vague explanation and yet for many of us this is such a debilitating part of this condition. Is there already a documented explanation out there for this and perhaps I just haven’t found it yet?
When I went to see an ENT Professor in Oct he specifically asked me if I could hear my pulse beating in my ear, as I don’t have this I didn’t ask him why he asked me that question - in hindsight he obviously had a reason, it must be an indication of something specific that he was trying to rule out. I am sorry now that I didn’t explore this with him because perhaps his answer would have helped those of you who suffer this. As you know I have a recently discovered sinus issue that requires surgery on 24 Jan and I am hoping that many of my symptoms will cease post surgery. That same Prof told me to go back to him if I still have the ear popping and dizziness post surgery (he’s not doing my sinus surgery as ears are his speciality) so perhaps he has a suspicion of something ear specific at play that may require more than sinus surgery intervention.
On the subject of tinnitus, my Dad who is now 74 started to suffer hearing loss and tinnitus in his 30s. The hearing loss was attributed to a genetically inherited condition from his mother called otosclerosis. The tinnitus was caused by nerve damage from over exposure to loud noise ( in his early 20s he used to play guitar in a band and on stage he always positioned himself in front of the amplifier - those days nobody wore ear plugs or protected their ears). Again credible medical explanations of symptoms…
The thing is I don’t get tinitus as in ringing/ beeping much only now and again my ear will go mute then I get that.
If the ears are full, beating sometimes, when I get up too quickly the blood rushes up my neck then pumps in the back of my head, I also get where my eyes pulse sometimes. Surely this is all issues with restricted blood flow?
Sorry to hear that. My ears just pop and block all day upon swallowing etc. I don’t get the ringing/beeping all of the time.
I agree Karen there has to be a link to these ear symptoms and the migrane. Doctors always see them as two separate issues! But this all started when my ears started playing up after flu
Well I was on Candesartan which is a blood pressure lowering drug but it is supposed to open up blood vessels so that blood can flow through freely, I suppose a little bit like viagra.
It didnt seem to work for me but I have heard lots of people take Propranolol which again for me didnt help but we are all different so - maybr worth a try? Best bet is to speak with your neuro and see what they would suggest?
I think it’s more complex than that but yes, agree there’s a connection. If you are interested study ear anatomy, it’s very interesting but can make you feel anxious if you are too early in the condition.
I tried both Propanolol and Candesartan - neither of them touched the head pain, head pressure, ear pressure/blocking or the dizziness/unsteadiness. The only thing that both of these drugs did was to lower my already low blood pressure which caused me many pre-syncope episodes.
Perhaps the answer to this awful condition lies in a dual therapy approach - a treatment plan which addresses the typical migraine symptoms of head pain AND something that addresses the vestibular component. I have watched a few YouTube diaries of fellow sufferers in the US and their successful treatment regime seems to consist of a typical “migraine” drug accompanied by a drug known to have specific affects on the vestibular system - eg one guy was on Cymbalta (similar to Effexor) and a very low dose of Klonopin (Benzo). However when I suggested that to my Neuro he looked at me as if I was looking to become a drug addict asking for a Benzo - apparently it is more “beneficial” to spend years trying a multitude of drugs all with side effects that have little proven track record than learning from our US counterparts who have had success using a combo of meds. Even Hain himself says there is little worry for addiction to Benzo when dosage is kept very low - eg 0.5mg x 3 daily or less if symptoms become manageable at lower dose. If my sinus surgery does not address the vestibular symptoms I will be pleading with my new ENT Prof to give me a low dose Benzo as a trial - it it stops the vestibular symptoms in their tracks then surely it warrants further discussion as to why it works.
This is a contentious subject but the reason the ‘migraine hypothesis’ simply does not work in my opinion is it fails to explain why the migraine occurs in the first place. Many people just seem to accept it but it doesn’t explain anything. It’s as if ‘having a migraine’ is totally normal. Worse we are expected to believe MAV is just ‘one of those things’. It’s not and no-one should accept that. Just taking pills to work around it may work for an individual but no-one should accept taking psychoactive medication chronically as a strategic solution for humanity, that’s ridiculous!
What frustrates me is why so many of us have not had success despite trying so many different drugs? I know lots of people who have migraine and within trialing maybe 2 drugs they are fully back on track with their lives - yes they have to take a med everyday BUT they are not debilitated, they are not at 70% or 80% - they are at 100% with the exception of a very few bad days over the year. This means to me that they have the correct diagnosis and thats why the typically used meds work for them. But why are we not like them? are we all just so unlucky that we haven’t met the right med after 2yrs, 5yrs, 10yrs? Is the makeup of our bodies so unique that the side effects from these drugs prevent us from getting to that elusive magic dose that will stop the symptoms? At what point in time does one draw a line in the sand and re-evaluate? Hain’s flowchart recommends re-evaluation after trying meds in each class of drugs but he doesn’t expand on the results of those he had to re-evaluate - what if anything did he find as a differential diagnosis? It would be interesting to know…
It is said if the migraine preventative drugs do work, it was MAV you had so just maybe this was some indication that your problem lies elsewhere, ie with your sinuses. I take Propranolol. As far as I’m aware I have no ear/sinus trouble at all. And my MAV comes from elsewhere. I don’t experience head pain or ear pain or ear clicking or popping, just ear pressure, head pressure both of which could easily seem restricted blood flow, tinnitus and the dizziness/unsteadiness and true rotary vertigo. Propranolol has, eventually, controlled all these symptoms. It stopped the 24/7 dizziness, tinnitus, head and ear pressure and although some imbalance remains I only get symptoms with strong triggere and they last far less time than before. It hasn’t reduced my blood pressure one bit unfortunately because that was why the doctor chose it for prevention in the first place. Guess you can’t win ‘em all!
Symptoms with vestibular conditions overlap so much but one I’ve read that’s almost diagnostic of migraine is light sensitivity. Propranolol sorted that too for me. Has it ever been one of your symptoms. Helen
Just maybe he works his way through the incredibly long list on his website
Years ago I worked fir a vet who always said diagnosis was made on the principle of’common things are common’ which is probably why so many people get a migraine diagnosis initially. Helen