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:
- hearing loss
- persistent tinnitus
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:
- MAV exists
- It’s a terrible affliction
- It’s treatable to an extent with medication
- There is a genuine chance of significant recovery (complete TBD) and coming off meds completely.
BUT I also believe
- It’s not caused by migraine, though that is a prominent symptom at some stage in the condition (in my case, the middle)
- The medication improves quality of life but recovery is down to your body only as it’s not addressing root cause
- Delusion in the medical community is rife
- Diagnosis depends on who you speak to
- Migraine is a useful nebulous affliction that can conveniently be used to explain almost anything and is great for hand-wavy explanations
- Migraine does not cause migraine, yet migraine apparently can start spontaneously after an entire half a life without any so another root cause TBD simply has to exist
- Effectiveness of meds does not prove anything because take them away and many patients relapse permanently (it does prove that they help to control symptoms & improve quality of life and I would not refute that)
- Meds have done zero for my ear symptoms, they have been completely useless for this, so again this suggests something else is going on in addition to (and in my case well before) the migraines.
- There are probably many causes of MAV, trauma is one of them, but there may be more insipid causes which are spontaneous in nature or due to congenital predisposition.
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.