Hello,
I have been recently diagnosed with vestibular migraine, I don’t currently have headache, but have the rocking sensation and some head pressure.
Two questions:
Are these symptoms of an active migraine attack? I have had the rocking sensation since January.
Does vestibular rehab help?
No-one knows and I personally very much doubt it.
The 24/7 symptoms of MAV are not migraine attacks imho.
The medical establishment has been incredibly good at developing a pseudo-religious dogma, but has not come up with a very convincing explanation for MAV symptoms. “It’s Migraine” is about as sophisticated as the explanation gets. To this I ask, “So what is causing the migraine?”. They have no answer to this pretty obvious and fundamental question. It’s an absolute disgrace if you ask me. Especially considering the cost of specialists. Unfortunately, vestibular medicine has a long way to go …
On the other hand the clinical treatment is fairly good. If not a cure, it can and usually does provide significant relief.
VRT may help though the data to support this isn’t particularly positive I’m told. It can exacerbate the condition. So VRT is a bit of a marmite pot. For me it made things worse and precipitated migraines. I gave up on it. Which saved a lot of money.
On the other hand, the medication can be very helpful and dramatically improve ones quality of life.
To give you some hope, my rocking sensation spontaneously went away even without medication, though overall it took about 2.5 years.
Hello dizzy3, and welcome! Read through some of the threads here (especially those from new members) and you’ll see that a lot of people describe the same symptoms.
I’ve collected quite a few articles and you might want to read through some of them. Here are links to a page where they are posted:
I’m going to act as counterpoint to James @turnitaround. We don’t really know what causes migraine. Each of us has theories. James is pretty specific in his thinking that this is homeostatis and inner ear. I lean toward a much more neurologic and metabolic approach because my symptoms are much more global in nature and simply cannot be explained without the neurology being involved. My digestive issues and numb hands require a mechanism that affects neurology to make sense.
Yes, medical science is starting to see migraine as a much bigger phenomenon than just the classic pain. There is some speculation that vestibular issues can be manifestation of migraine with or without headache. It’s kind of like abdominal migraine. Different expression of a central issue. And I do think my 24/7 issues are very much migraine. My thresholds are very low.
VRT has been very helpful to me, albeit expensive. I continue to improve week to week. The fact that I can look at this screen and type this has a lot to do with the visual exercises we do in therapy. It’s made a significant difference to me.
So far medication hasn’t helped me in a way that was worth the side effects. But then, because we don’t understand the mechanism of VM/MAV and don’t really understand how the meds work, it’s always a trial and error approach. I’m game to keep trying new classes of meds until I find something that makes me feel better overall.
thanks for your answer. I guess my question is because my neurologist told me that the rockiness will not improve until migraines are under control. But if rockiness is migraine, then it is not in control, no? and in that case, vrt would work? i read the paper that vrt does improve vestibular issues plus diminishes headaches… anyway, it is a puzzle for me.
wow, 2.5 years… my baby is 8 months. It is hard to cope with the idea of feeling like this for so long. I am glad is gone for you.
On this point, I agree with James. Meds make the difference. I had to get the migraines reigned in before VRT helped me out. I just said I wasn’t on meds. That’s true. I made significant lifestyle and diet changes. That got me to about 70% better after which I saw rapid improvements during VRT. The rest of the way is going to take meds. Some folks do ok with just the meds.
I’ve been a dizzy migraineur for the better part of two decades, with and without headaches, sometimes very dizzy others just ‘off’. It waxes and wanes. You get used to it to a certain degree and learn ways to work around it. Some people improve completely. Some of it is getting through the stages of grief and getting to acceptance. When you get there, you learn to adapt and thrive. Read through the old posts and you’ll see me mention about a billion different medical issues. I still thrive and I’m a happy person. VM/MAV isn’t the end of the world. It may not be a problem that we can solve. But, it is a predicament that can be managed.
No, that’s not quite what I think.
Migraines are thought to be caused by allostatic load and most are not vestibular in type. Ie I don’t think most migraines have anything to do with the inner ear, though they may be caused by a homeostatic issue somewhere in the body, perhaps the eyes.
Vestibular Migraines, however, are, I believe, caused by inner ear dysfunction. However, what causes the inner ear dysfunction? Well clearly in my case it’s obvious - injury. Some people have inner ear injury they are not aware of as the effects can be delayed and there is often zero pain at point of trauma.
Others may have something going on which relates to fluid balance in the body, which in turn affects what is going on in the ear, e.g. Sodium regulation in CSF (CSF is one input to the fluid in the inner ear).
Others still may have congenital weakness in their ears which pre-disposes them to trouble later in life.
The evidence is in plain sight, the persistent tinnitus, ear pain, fluctuating hearing loss for some, feeling of pressure, feeling of fluid leaks, fullness … none of this is migraine! It’s so ridiculous a whole discipline in medicine seems convinced (without any conclusive evidence) that this is all down to migraines! It’s a fantasy dreamed up by people who’ve never had the condition and has somehow become doctrine in the vacuum created by science having not determined a definitive root cause.
Migraines are an outcome, not a starting point and I for example had dizziness on and off for a year before I developed the first migraine. Of course the dizziness is coming from an issue with my ear!
Migraines are not a healthy state of being, so no argument that fails to explain the cause of the migraines is worth anything.
Medication helps but it largely only seems to address the neurological fallout and doesn’t seem to cure you: you come off the meds and you may be back to square one - this is not evidence that migraines are causing your problems, its merely evidence you are not recovering spontaneously enough and need to stay on the meds to keep the symptoms under control. A lot of symptoms are neurological because we are talking about instability of a critical sense, one that feeds in to processing which takes up 60% of your brain function - is it any wonder that inner ear trouble gives you a migraine?!
Currently I believe most of the medical profession are barking up the wrong tree and this is wasting time, probably misdirecting research funds and prolonging suffering.
We are just given this medication to make us feel better, but are largely left to recover only spontaneously. If you don’t recover sufficiently spontaneously (achieved in part through compensation and in part stabilisation), you are out of luck and destined to remain on the medication.
True, but it seems just as likely to me that Dr. Godfrey is right. Ear issues could be brought on by migraine just as sinus issues and digestive issues are. Systemic inflammation can manifest in a myriad of disparate ways. I’m certain that’s also true with migraine. The question is the starting point. And on that, we’re going to disagree until we know for sure, which may be a long time.
Emily, I physically injured my ear and developed MAV. There was no migraine involved for a year.
Yes, but you’re a little bit of a unique case, James. And who knows whether the MAV was even related to the ear injury.
I wish we could watch Dr. Godley’s talk again, or get a transcript. In the first part he explained something about the nerves (I remember him specifically mentioning the trigeminal nerve, and maybe others) and how those nerves could cause symptoms that seem like something else, such as sinus pressure and pain. He said that he has a lot of patients who go to him saying “I have sinus pressure and pain so I must have a sinus infection,” but when he does a CT scan on their sinuses they are clear. He explained that as being caused by something in the way the brain and those nerves interact.
OF COURSE it’s related.
And yes a special case that blows a big hole in the entire story, because that’s all it is!
My gift to you all after pointing a shower in my ear!
But there are other “special cases”, I’m sure I’m not the only one - like @Carriep who came on here complaining of MAV symptoms that turned out to be due to a cholesteatoma which required surgery - but she was also suffering the whole gamut of MAV symptoms before that was rectified.
It wasn’t for me.
As you can’t get back to Dr Godley’s speech Suggest you check out page 3 of the John Hopkins document entitled ‘Migraine - more than a headache’. Very similar info. Might save some fretting. Hope so.
Which was exactly my experience.
Ahh, yes, here it is:
“Another element in migraine is the release of chemicals by the trigeminal nerve. This nerve supplies sensation to the entire face, scalp, lining of the eyes, nasal cavity and sinuses, teeth and gums, jaw joints, parts of the neck and ears, even shoulders. This nerve releases inflammatory peptides – short pieces of proteins – into the tissues nearby. These peptides (CGRP, substance P, etc.) can cause the local blood vessels to become “leaky,” losing their serum into surrounding tissues. The tissues can even swell and become painful on this basis. Classic migraine headache may occur when branches of the trigeminal nerve going to the lining of the brain get inflamed, causing painful throbbing headache due to sensitization of the blood vessels around the brain by the inflammatory peptides. But if branches going to the sinuses are involved instead of those going to the lining of the brain, the symptoms may not seem like classic migraine headache, but instead may be sinus congestion and runny nose. These patients often feel that they have sinusitis, but scans show no anatomic abnormality of the sinuses.”
This is from:
“Migraine–More Than a Headache” in this thread:
https://www.mvertigo.org/t/other-reading/15138
Right! That’s what I was talking about. It also explains autonomic issues like the links between migraine and IBS, dry cough or neuropathy. Starts in the brain, activates different things. I did the classic thing Godfrey talked about - antibiotics for multiple ‘sinus’ infections that turned out not to exist. We also thought I had Eustachian dysfunction, but I think probably not. Migraine is inflaming tissues all over inside my head and symptoms crop up in all the corresponding parts of my anatomy.
I actually saved that video he did. I’m tempted to purchase the set cause there were many videos of days before that I missed and wanted to know like triggers and such.
I was actually on a pretty good road to recovery but then the antibiotic messed me up big time and 2 weeks later my right ear now has tinnitus and fluxing inner ear pressure sometimes but not as often like my left ear.
And as far I’m doing now with that, slowly recovering each week, but dealing with headaches almost every day due to the crappy rainstorms we’ve been getting. Yesterday was a good day, no real blips at all except later at night when the pressure from a storm was rolling in for all day today.
Still waking up in the middle of the night tho sometimes when it’s a rain storm a bit dizzy.
“Hoping” to get back to baseline in a month or month in a half… I’d also like this tinnitus and the pressure thing in my right ear to “heal away”. (Hoping the right ear thing is just temporary) I feel as if the tinnitus in my right ear is louder than my left ear now.
Ps tonight’s dizziness sucked as the evening progressed.
Wanted to elaborate on this because I cannot be convinced otherwise, because it is blindingly obvious and you’ve rattled my chain.
I became spontaneously dizzy for the first time in my life 15 minutes after pointing a shower into my ear (which wasn’t painful but felt very ‘uncomfortable’). The following morning, for the first time in my life, I felt a build up of fluid somewhere in my ear and this muffled my hearing for several seconds and made a sound like the sea does on the beach as it apparently drained away as I got up. This sensation has been with me almost daily for 3 years since. No-one in their right mind could surely argue this sensation is a migraine thing?! It’s ABSOLUTELY PHYSICAL!
I had huge amounts of imbalance and nausea for 4.5 weeks and then it all disappeared except this fluid sensation. At no point did I have a migraine nor even a vestibular attack up until this point.
I had a very enjoyable summer except for a couple of instances when I got stressed I felt dizzy for a brief moment. This was in retrospect the first sign of a progressive issue in my ear.
However I had no tinnitus nor hearing loss until 6 months later, about 2 weeks into relapsing big time, when MAV phase started.
From this point on I could increase the tinnitus (and still can) by simply clenching my jaw. No-one in their right mind is going to say I’m experiencing a quick migraine clenching my jaw!!
It wasn’t until a complete year after the very first incident did I have a proper migraine. Before any of my migraines I had had:
The list goes on …
I’ve also recovered extensively since stopping medication and have been improving for months despite not having had a single migraine.
This whole thing was diagnosed as MAV 6 months in, but later I got additional diagnoses of SEH after PLF and Hydrops. That got me thinking, and when I ask my present Doctor about the similarity he said “Yes people can often be diagnosed with MAV who have SEH because the symptoms are identical”. However, going back to the original clinic they remain convinced I have MAV despite these other opinions.
More enlightening still, according to two doctors, the treatment of both conditions is the same - in my case with Amitriptyline!
Of course the penny dropped and I realised MAV & SEH are probably the same entity and it is simply dogma, politics and professional guidelines (to which doctors must be seen to adhere) that keep this diagnoses separate. Indeed as you know research has been published since 2013 that shows hydrops in VM sufferers ears. This can’t be explained by Migraines which have never happened in the first place, like me, who did not get migraines until a year in.
It is also very self serving for Neurologists to argue that this condition is in their domain. It is true that the only treatment we have available are drugs that are prescribed by neurologists, but it is also true that neurologists and the like are rewarded handsomely, especially in private practice for their involvement in what is very little effort on their part (no surgery, just office consultation where someone else does all the testing for them!). They are taking a huge cut from what used to be the domain of the ENT.
And of course once these guys get on their soap boxes and start proclaiming that its all migraine they have reputations to consider. In an almost cynical turn, it’s almost breathtaking to see papers that claim migraine is causing Hydrops in ears - a classic where they are modifying their argument as new information appears but in a way to support their initial position, showing no real effort to rethink things properly. And in my case, from personal experience, all my ‘hydrops stuff’ happened very early on, well before any migraine.
And it seems few care enough to get up and refute these wild statements as they are too keen to preserve their own reputation in the face of widespread endemic dogma.
My case fully illustrates you can develop MAV like symptoms from physical trauma. That sheds a whole different light on MAV which for many appears to appear spontaneously, though actually if a lot of sufferers think back its incredible to note a lot of ‘instances’ of problems after flying, blocked sinuses, traumatic child birth and diving.
The other thing it illustrates is that an initial trauma can lead to a very delayed onset of the big bang and in fact there are many people who have suffered what they think of as VN months or even years before the onset of the MAV syndrome.
Finally, I want to make it clear that I believe:
BUT I also believe
I ask myself this: How are we going to make progress on finding the root cause if all this time, money and energy is wasted on migraines! No matter how many of these meds you chuck down your throat you are still left with this thing. And people struggle with the medication crap shoot as that’s the best thing that is available, but it doesn’t move things forward at all! Indeed apart from the new MRI evidence, things don’t seem to have moved on in 10 years?
No amount of paying Big Pharma for antidepressants is going to support more varied and novel directions in research. Private healthcare systems are fat and satisfied with the status quo.
I have no trouble thinking SEH might be a complication of migraine.
I have no trouble thinking migraine might be a complication of SEH.
I also have no trouble believing one can exist without the other.
I have Migraine Associated Vertigo and a whole host of full body, multi-system complications that only have one thing in common - the signals all originate in my brain, often as autonomic functions. Many of these things mimic other discrete conditions (IBS, sinusitis, neuropathy). I do not have symptoms of SEH, even with prior trauma.