As of 2016, there is little evidence that any type of VEMP is useful in Migraine. Their main role is to diagnose other illnesses that might be confused with Migraine. We agree with Fife et al (2017), who in a practice parameter published in Neurology, stated that “VEMP may not be used to assist in VM diagnosis or management”.
I think the point of this article is that testing for vestibular weakness has no place in VM or MAV diagnosis. I guess I agree with this - in that I believe for me and many others with vertigo and migraine issues - the migraine symptoms are caused by the vestibular problems and not the other way around.
For me, my issues are clearly tied to huge attacks (some callMeniere’s attacks) that are characterized by complete loss of balance function, inability to stand or walk and horrendous spinning, andnausea/vomiting. After the attacks I have clear vestibular issues that do get better over time until the next attack. These show up in VEMP test and HIT test that show severe weakness on left side. And I never had or have migraine symptoms before the attacks. So I am certain the migraine is caused by the brain struggling to deal with bad signals from the damaged vestibular system. Although my neurologist still thinks it’s MAV and all related to the migraines but he is just wrong. I still went through the drugs he prescribed because I had some hope they would help with the symptoms although none have really helped. If the testing shows vestibular disfunction I’m pretty sure that’s not caused by migraine.
Vemp might not help migraine diagnosis but it can certainly aid other ear related damage diagnosis.
Infact when VEMP shows deficit on one side then my neuro-oto thinks VRT can help.
Do you have low frequency hearing loss?
Has diuretics helped you ?
Mine is definitely a migraine issue first that’s strongly tied to inner ears. I hated VEMP testing (which I failed impressively), but VRT has been hugely beneficial to me. It’s made a difference between not being able to work and keeping my company afloat.
Though today my VRT PT looked at me during the first exercise and said, your pupils are very dilated and they are not the same size, do you have your meds? Within an hour, I was making a pit stop home for my rescue meds. Now I have a pill bottle on my keys, like an old lady.
Your rescue meds are fioricet? Any triptans ? Do you get rebounds taking floricet?
Triptans have proven useless for me, at least the couple types I’ve tried. I don’t take Fioricet often enough to get rebounds - never more than 2 a day, or more than 2 days in a row or more than 2x a week. Sometimes that’s brutal, but mostly I don’t take anything. One today handled it. I went back to work afterwards. My client’s office has big windows and they kindly turned the lights off in the whole office for me. (Without me asking.) Spent time shying away from my screens but pulled it together after lunch. Ok the rest of the day.
This a thousand times.
Dave, it doesn’t have to be Meniere’s that you are experiencing.
As you may have read elsewhere, and sorry to repeat myself, but I have been diagnosed with Secondary Hydrops, which presents as continuous (if fluctuating) imbalance and dizziness, punctuated with vertigo attacks - just like MAV.
And oh yes, I’ve been diagnosed as MAV too, as you may have read elsewhere, and this was my reaction!
The continuous element sets it apart from early to middle stage Meniere’s. And the lack of low frequency hearing loss sets it apart from Meniere’s late stage.
Also, let’s be careful using the word ‘damaged’. Sure there is a vestibular deficit but imho it could be reversible. It’s a lot to do with some fluid imbalance and resulting pressure. I’ve been improving a lot over the years(!) and the outright vertigo attacks have ceased. My hearing, whilst initially impacted, has not deteriorated further and in fact has improved (I get less distortion with louder noises now). I have no low frequency loss whatsoever (and never have had). I suspect the hearing impact is down to fluid pressure and if this were to drop, I’d recover my former hearing levels.
I like to think the ‘vestibular deficit’ is more like a change and fluctuation in the characteristics of the ear leading to an unstable response making it very difficult for the brain to fully compensate. It is this lack of compensation you experience as imbalance and dizziness. That is not damage, that’s lack of tuning!
It’s very interesting that Hain does not cover Secondary Hydrops on his website, yet he does cover MAV, Meniere’s and PLF. My symptoms are closest to his description of MAV & ‘PLF’ but the latter is a highly contentious diagnosis and I suspect its more to do with Secondary Hydrops and the ‘PLF’ element is when the pressure causes a temporary breach in the inner ear window to release pressure (I get very occasional evidence of dried fluid in my eustachian tube which causes it to stick and ‘crack open’!).
Have you read the section on Secondary Hydrops on vestibular dot org? It reads like MAV, except for the lack of discussion of migraine, which is odd, because at one stage I used to get migraines quite often (though I’ve not had a full scale migraine for a long time now!)
Anyway, given my SH is so like MAV, this is why I personally believe they are the same thing. The causes may be different for different people, but the underlying aetiology is probably very similar. There may be trauma cases (like mine), and those with some idiopathic cause that might influence homeostasis? Who knows … I hope medicine gets to the bottom of this soon!!
Saying the ear can have ONLY a fluctuating damage like hydrops is trivializing it.
There are many possible one time permanent damage. And lifelong partial compensation as a result of migraines. At this point the bad boy in the class is the brain and not the ear.
I’m not trivialising it, and I’m not calling it ‘fluctuating damage’. I’m calling it fluctuating response due to changes in the characteristics of the inner ear, most likely due to changing pressures and fluid balance.
Once this system gets out of homeostasis it seems to struggle to return to equilibrium, perhaps because the mechanism that can achieve this (thinking optimistically) is slow in action - ie combined processes which regulate the fluids.
One: ‘lifelong partial compensation’. A stable lesion takes weeks/months not years to compensate from. Let’s hope ‘lifetime’ speaking compensation slowly improves (with imho, sensory stability).
Two: you don’t get migraines if you have compensated.
Three: I don’t see why we should paint the brain as the bad-boy in the class? - it’s surely doing its utmost to compensate but the instability of the senses is driving it over the allostatic threshold and into spasm? It’s not perfect. But it’s not unhealthy of damaged either, just doing its thing? This is fundamentally my problem with the whole ‘MAV’ explanation … there is no brain damage, so how can migraine be the cause?! (nothing on my MRI anyway, and I don’t see any reported with any regularity!).
95% of effexor i know 10 people…how did effexor fix the inner ear homeostasis ?
That might be playing around with the allostatic threshold I suspect, increasing the brains tolerance for instability.
Another possible explanation is it’s dampening signals from the periphery resulting in lower spikes …
Oh and PS without detailed telemetry, you don’t know if their potential inner ear instability is improving … which may be why a lot of people can come of meds (Suki, Beatles … me!)
I hope you are wrong wrt to permanent damage …
Agreed. Deficit in one side to me means there is something physically wrong on that side that is different than the other which is the problem and not some overall issue with for instance unbalance in brain chemicals or homrones. Like most of the diagnoses in this area, everything I read says that the causes are not well understood and unfortunately the science is not great. It could indeed be that there is a “vasospasm” or something causing an imbalance in chemicals/hormone production that primarily affects one side but to me that means there is something different/wrong with that side.
For those with balance issues, I believe that there is something wrong with the balance system which entails many parts (mechanical sensors, mechanical to electrical conversion, transmission of electrical signals, autonomous processing of those signals for use by other systems for balance and for instance vision while moving) and that the brain is struggling to account for the bad signals from that system which sets off the migraine symptoms as well.
I do believe that vestibular therapy can help to re-train those autonomous systems to improve your balance and reduce the affect that causes issues like brain fog and migraine. However I think part of the issue for some is that the system is not broken in a fixed manner and varies so much that it is a moving target that is hard to accommodate. I still do extreme VRT and on good days it doesn’t bother me much, but on bad days I get nauseous and very unbalanced. I still think its helping in some manner, but 2 years after my last attack, I don’t think my improvement is great. I was hopefull that it would get me to the point where I can walk without worrying people will think I am drunk. I am better, but especially at night (tired brain?) I have a lot of trouble with my balance.
Bottom line is - yes if one side shows weakness, VRT should help and I would encourage anyone to do this every day and to get out and walk and do things even if you feel very bad. But just don’t expect it to fix the issue but just to make some improvements. I do think laying around when you feel bad just makes it worse so if you can you should get out and about as much as possible.
In my latest refinement of my mental model of a possible culprit, this is Hydrops. The fluctuating over pressure in the ear causes a change in the ear’s response and if this flucuates too much, you breach the allostatic load on the brain, leading to migraine.
The Hydrops interacts with CSF pressure via the Cochlear Aqueduct. This CSF pressure combines with the Hydropic pressure to breach the windows occasionally, leading to a fluid imbalance which sustains the Hydrops as the inner ear tries to re-balance the Perilymph fluid (CSF has replaced Perilymph, so this needs to be addressed), by pumping out more fluid, raising the pressure. Hence why this is chronic.
This is not about significant damage to the inner ear, this is about a fluid imbalance so bad that it no longer keeps homeostasis reliably.
It is possible to recover from this I reckon, but my model describes a potential for exacerbation and relapse pretty well.
Agreed on Meniere’s - which is why I worded it (some call Meniere’s attacks). I think of Meniere’s as just a DX for a set of symptoms as apposed to something specific. The attacks I have seem to be exactly as described when I first investigated my attacks and so that is also what I call them until I have a better name for them. They started as short episodic attacks (5 minutes maybe once a month) and progressed to huge catastrophic attacks which I am convinced made my steady state balance system worse each attack. Steroids and bedrest after attack and then lots of time made me better but still extremely concerned about having another attack even if I am feeling much better I still occasionally get that same set of feelings but so far avoiding another one.
In fact if you research Meniere’s, I find that for instance in this article
They state taht a big factor impairing treatment progress is the lack of consensus on a mechanism for the disorrder. Specifically the Migraine group and the endolymphatic hydrops group. I ascribe to the hydrops group and this theory makes the most sense to me. I think hydrops and menieres are the same. I think the hearing loss differences just point to some differences in the varying details of what caused the condition and in some cases it also affects the hearing parts more. I don’t have much hearing loss and mine is mostly higher frequency, so that should tell the doctors something about the location of the issue but I still think they are similar issues.
I think there are a number of different reasons for this type of attack and variance in exact parts of the balance system that cause it. In my case, I do think it has to do with the pressure and contents of the parts of the ear that are tied to balance and somehow not particularly damaging to the hearing parts even though close in proximity. I think that some combination of excess production of endolympth or some growth or vascular invasion of the organ space causing compression of those organs might be the issue. The fact that high ear pressure becomes very noticeable just before the attack and then if feels like something breaks and you are instantly unable to stand (and with extreme vertigo/spinning) tells me that the pressure caused a break in the system and spilling of fluids that are required. Not so different from a PLF - Fistula of some part of this system. It makes sense to me that this tear in some part of the system can heal over time making you better over time but perhaps still having a weak spot at the tear location that may tear again (another attack).
- And about the word “damaged” - I do think something is damaged and that it “heals” somewhat over time. In some cases it may heal enough that you can get back to 100%.
“unstable response making it very difficult for the brain to fully compensate. It is this lack of compensation you experience as imbalance and dizziness. That is not damage, that’s lack of tuning!”
I agree totally - and I think this is what makes it more difficult for VRT to “Fix” your issues. I think if the hearing organs were completely healed up, you would be able to retrain through VRT to go back to completely normal condition. But I think in my case, there is still some issue that causes this left side balance system to vary so much (leaking, too much endolymph production, perhaps pressure from some vascular system), that it becomes very difficult to function while still using this varying and “broken” part of the system. It may be somewhat functional, but not good enough for consistent and constant without issues (brain fog, migraine, imbalance).
Agreed - if there is a one time damage to the ear and it heals to a point where it can provide consistent and usable signals, then you should be able to re-train through VRT and get back to normal. This is why I continue to do extreme VRT in the hope that the system becomes stable enough that I can get back to normal. I am certainly much better than I was 2 years ago after the last attack, but progress is very slow and the condition varies so much.
Hope the VRT helps you. I carry my rescue meds in a content lens case which doesn’t bulge in my pockets so much. Valium is the main one which is the only thing that has ever helped me short term when feeling bad or like an attack is coming. I also carry Zofran in case I do have an attack as it melts under the tongue and helps stop the constant vomiting so I can keep down the valium. I have to stay vigilant and always carry these as the last attack I didn’t have them because it had been a long time since the last attack and I was feeling better and got complacent.
So, forgive me, but I don’t want to call MAV ‘Meniere’s’, as ‘Meniere’s’ seems to be a special case (10%?).
My ‘MAV’-like condition started pretty much as a big bang and not as a set of incidents spread over years (as is normal with Menieres).
“Hydrops” just means over pressure. I’m assuming there could be more than one aetiology for this as homeostasis is presumably complex.
Some possible culprits:
- Intercranial Hypertension leading to raised CSF pressure
- Over production of Perilymph
- Over production of Endolymph
I bet MAV is something to do with the first two, or both, as the last one would give you low frequency hearing loss, the others wouldn’t.
So I don’t think we are talking about an increase in Endolymph volume - this would rule out a Meniere’s style Hydrops.
What we are talking about instead is something going wrong on the Perilymph side of the Reissner membrane … and I think this is what is making it distinct.
It’s EXACTLY like a spontaneous PLF … highly contentious but there you go.
If you think about the engineering, the low pressure of the middle ear versus the high pressure of the inner ear suggests that the thin window membranes are FAR more likely to breach than the Reissner membrane (a popular but totally common-senseless theory imho).
And get this … the perilymph leaks into the eustachian tube (possibly with some blood), clogs up and you get ear fullness. During this breach, the fluid moves a lot and pressure changes, stimulating the movement senses and giving you vertigo.
Between attacks, the higher pressure may sustain a low level of fluctuating high frequency tinnitus and the pressure on the windows dampens the HF response of the ear. The pressure also changes the resonant frequency of the ear. In short, there are plenty of odd impacts to hearing, but I reckon absolutely no death of any neuron at this stage, its purely a transfer function change.
Not everyone has pressure high enough to cause tinnitus, so that might explain the ones with only balance issues. (I had balance issues before i had hearing issues).
btw, the ‘one time damage’ could simply be a large leak of perilymph in the case of trauma.
Over extension of the stapes can easily puncture the oval window, releasing a lot of perilymph, which then, under pressure, draws in CSF and the hydrops process begins.
This, imho, is why PLF surgery is unreliable and pointless - the underlying problem is Hydrops, not PLF. No amount of patching will instantly make up for the internal fluid imbalance (i guess there’s an outside chance that ‘beefing up’ the windows might help break the cycle though, but I’m not so sure).
Anyway, that’s my current mental model and to me THIS is the level detail I expect from an explanation of MAV, not ‘it’s migraine’, ‘migraine causes a stroke which damages the ear’ … this is totally superficial imho.
The migraine explanation also lacks a kick off. I once challenged my neuro-oto and she said it could be down to a DNA mutation (that was it … also lacking detail).
I know this is all very contentious, but I am not the kind of person that can tolerate a poor explanation, a lack of common sense or too much uncertainty.
Of course, this model DOES NOT undermine the well trodden treatment programme. which is clinically proven
In fact it may support the use of Beta-blockers and the like that influence CSF pressure. There are reports of hearing improving with Verapamil, a calcium channel blocker that also must influence CSF pressure.
The migraine meds DO make sense. You ain’t gonna compensate whilst in the grips of a migraine! (which may represent another potential vicious cycle) The VRT may do (didn’t help me much).
But in addition to those I would say: Don’t stay in bed too long (to limit head CSF pressure), prop yourself up on pillows, don’t strain, don’t bend down too low, keep a healthy weight (this is tricky when on migraine meds!)
It would be great to have a med that could directly impact the Hydrops but I don’t think that’s going to happen anytime soon … you simply have to be patient and wait for mother nature.
VRT has helped. I put Fioricet, Promethazine, Meclizine and Ibuprofen in my case. First day out I was digging into it for 1/2 a Meclizine. My neurologist thought I might do well to switch out the Meclizine with a low dose Clonazepam. Half of those are sedating, not that I can even tell anymore. I’m drugged often enough, the people I work with think it’s my personality. Recently started Effexor. If that works, they’ll be surprised to see I’m not Eeyore, I’m Tigger. My friends know this.
Hey i like Eeyore !
I’m not digging on Eeyore! But you’re wrong if you think I’m just going to resign myself to losing my tail. Don’t get sad, get mad little donkey.