No way! Almost all dizziness is down to an issue in the inner ear (and then the brain getting confused from mixed unexpected messages) You are not going mad! Sure anxiety can exacerbate but that’s chicken and egg.
I do agree that there may be slight vestibular dysfunction in my ears but at the same time I believe my vertigo this time is more of central vertigo, meaning it’s stemming from the brain. The amitriptyline was working for a while but now I don’t believe it is and I notice I have less motivation to do things. So I’m almost hypothesisizing that maybe there is a chemical imbalance making my already mild dizziness worse.
I’m really not sure central vertigo exists. It’s just a hypothesis to keep neurologists employed :). A variable leak of perilymph from the ear together with a disturbance to the pressure regulation of the ear makes more sense to me. The migraines are caused by the sensory upset. So many sufferers speak of ‘pressure’ in the ear. What if this was actually just … I dont know … pressure?!
The problem with the central vertigo hypothesis (and that’s all it is) is it just doesn’t explain spontaneous onset - why do you wake up one day with this horrendous condition? A brain injury?! Nah. And all these symptoms we have 24/7 are somehow constant hallucinations and mostly vestibular ones at that?! Why would they only be vestibular and not any other kind. It’s a load of baloney.
On the contrary we’ve known about Hydrops and Fistulas for decades. I don’t know why theyve fallen down the diagnosis top 10.
Well, people with MAV on this forum experience dizziness due from migraines, and migraines are in fact a neurological condition. Also, I’ve been reading a lot of articles about serotonin and dopamine and I have learned that decreased seratonin levels can cause conditions like migraine. Which might explain why amitriptyline, an anti depressant, helped me feel more normal for a while. It balanced the chemicals in my brain, and I also didn’t experience a headache for a while why they were working. So although there may be an underlying vestibular issue with my ears, I think there is something chemically or hormonally that makes my dizziness feel worse. Of course this is just my theory, but it may also explain why doctors cannot find anything on my MRI, because you can’t physically “see” chemicals and neurotransmitters in your brain. Make sense?
Also, central vertigo is vertigo that can be caused by illness or even migraine. So I wouldn’t necessarily say that it is “made up.” The vestibular system uses the eyes, brain, and ears to keep the human body balanced. So there really is no “one way” to think about dizziness that people on here feel. So I find it very interesting but I don’t think there is only one theory of what is going on.
And there’s the rub. Migraine as a cause for dizziness is only a theory. It’s a popular theory and has become medical dogma, or “flavour of the year/decade”. Previous owners of this crown were ‘Menieres’ and 'Perilymph Fistulas". And notice how they were very careful to call it “migraine associated” not “migraine caused”.
We should all be very wary of dogma.
I think the reality is a lot more complex and involves inner ear dysfunction. Sure, of course there are neurological elements to the issue. I believe that the migraine process and the nature of the root cause (my bet is on a degree of hydrops). may be preventing compensation. The drugs help calm the neuro transmissions and aid the compensation process by helping to block the brain going into some kind of electrical spasm.
But nevertheless there is a change in the vestibular apparatus due to some lesion or injury for which a compensation is required but more difficult to achieve because the issue fluctuates. On top of that I’m very sure the acute vertigo episodes are not migraine as I’ve had full on spinning vertigo whilst on prophylactic meds and off them. They only helped prevent me vomiting not from feeling a spinning sensation. My money is on something going on in the inner ear during those episodes.
What I wouldn’t dispute is that the medical treatment is reasonable. But as another clue to the complete story note that people diagnosed with Hydrops and fistulas also get the very same meds because it helps them. Very suspicious if you ask me. And if we keep backing the wrong horse there will be less investment in research into the ACTUAL root cause. It’s sad to say but the treatment is a very convenient 'take this and you’ll feel better" and let you go home and deal with it … And for years on end!! Who wouldn’t want something better than a nebulous theory?!?
Although I’ve had problems for ten years, ( with varying diagnosis ranging from, a mini stroke through to me being a hypercondric and needing psyciatric help). MAV was only suggested as a possible diagnosis three months ago., after being reffered to UCLH in London. So other than sea sickness tablet, Amitriptyline is the first set of tablets that I’ve been prescribed, although the consultant did say there were others I could try.
Yea, I agree at the fact that there must be some type of injury to the vestibule system, however, I’m just not sure how my vestibular system compares to others. What tests did you go through that you got diagnosed with a fistula? I do not have any fluid leaking from my ear. The only thing that happens is sometimes it will pop on it’s on and sometimes I experience a very very mild pain in my right ear.
No test. Just based on my history. It all started a few minutes after I pointed a shower into my ear. I had severe imbalance for 5 weeks then it all went away. Until 5 months later.
I was diagnosed with MAV, and separately MAV or Hydrops ( and given Amitriptyline). I was not satisfied with the answers and my progress so I saw another surgeon who told me he agrees it must have been due to the original incident and I’d caused a fistula. He told me that Secondary Hydrops then appears later when the fistula has all but healed. The symptoms are the same as MAV and so is the conservative treatment.
As I’ve written elsewhere there is a new test for fistula being developed in Japan but the fistulas heal by themselves in most cases. The tricky part is the Hydrops which occurs with any fistula: the inner ear fluids get out of balance and it can take years for them to return to balance, if at all. The high pressure causes vertigo and dizziness. Basically when you have a leak the perilymph pressure goes down allowing the endolymph part to grow and distend. The trick is for the ear to push back with perilymph and the endolymph area shrink again. I’m not sure if any doctor or scientists knows how to encourage that to happen. Diet is considered one possible option.
The spooky part is that the Hydrops diet is the almost the same as the ‘MAV’ diet. Draw your own conclusions to that one.
Hmm very interesting. I looked up some of the symptoms of a fistula but I’m not sure how much or how little they pertain to me. My balance will fluctuate but I rarely if ever get bad ear pain or pressure. More of just a mild dull pain like right now and a couple of times a month my right ear will pop. My symptoms also seem to fluctuate after my mensturla cycle. Trying to figure out a way for me to get better. Also scared to travel by plane which is sucky since I want to travel.
Dull pain is how I’d describe my feeling sometimes, but other rare weeks I have had phases of sharp pain. Doesn’t bother me. None of this would now bother me so much if someone could tell me that it will definitely go away at some stage! But it has got loads better. Which makes me wonder if there is indeed a level of compensation involved. The brain rocks!
I agree with you. But there is a gap which i am not able to explain. Which is how does SSRI fix the problems for some folks that they start feeling 90% to sometime even normal. If the source of imbalance is vestibular then the imbalance should always exist. The SSRI probably increase the threshold of the brain and prevent it from freaking out which cause migraines and further dizziness. Even on SSRI the person should be able to sense the imbalance especially if it is variable and the brain treats this as noise.
In my case Amitriptyline has avoided the migraines at 20mg. But there is a constant sense of imbalance 24/7 sometimes worse and sometimes barely noticeable. So in my case i am with you that the source of my troubles lies in my inner ear. But at the sametime could there could be people out there whose problem is in the Central(CNS) and fixed by SSRIs nd hence able to get to almost 100%. This could also explain the ladies experiencing more trouble during the day of the month.
Very interesting @GetBetter. That was kind of my point too, that maybe most of what I am dealing with is central vertigo. But I’m also wondering what hormones have to do with all of this too. I’m hoping that I can find a better treatment option for myself as I feel kinda the way I used too right now.
Sorry for slow reply, I’ve been running around like crazy trying to clear my flat and putting all my stuff into storage (yes symptoms are generally good enough to do that now, hurrah!)
Identical to my experience. But we need to distinguish ‘migraines’ from ‘vestibular attacks’ because what I discovered to my disappointment 6 months after starting Amitriptyline was that it didn’t help avoid the latter.
I just don’t believe (and I accept this is a personal opinion), that the vertigo sensation (violent spinning) is caused by anything other than a dysfunction of the inner ear - because THAT is the organ that senses motion!
Also I understand the inner ear windows between the inner ear and middle ear are supposed to be the thinnest membranes in the body. Perhaps this is so they prevent damage to hearing - ie if the inner ear pressure goes up too high (easy, its surrounded with bone), this membrane breaks first and lowers the pressure - thus saving your hearing!! Evolution is a wonderful thing. So next time you get spinning think yourself lucky - it could be preventing hearing loss!
Unfortunately this also means they are REALLY susceptible to injury. Which to me suggest injuring them is going to be more common than many people realise.
Fluctuating tinnitus too - that is surely an issue with pressure in the inner ear. Hearing loss definitely is, unless its down to wax, an issue with the stapes, ear drum, swollen ear canal or a blocked Eustachian tube, but they are in any case ear related.
So if you have episodic vertigo, tinnitus and a feeling of ear pressure that is surely to do with the ears?! If you have all that and any impact to hearing at all, that’s definitely ear trouble.
If its just dizziness and NOTHING ELSE there might be a chemical cause? E.g. when you drink alcohol. But I’ve never had tinnitus from drinking alcohol. And the violent spinning I’ve had with ear trouble has been VERY different to the spinning I’ve felt when woozy.
I really don’t think we should, however, be blaming the brain for all these sins, its nowhere near as delicate as the ear, so far less likely to suffer injury or infection.
And if its was the brain, how come its only affecting vestibular aspects? Why wouldn’t you be getting a feeling of pressure in your feet or cold hands? Sorry, just not convinced. This is surely ear trouble!
There IS however, MOST DEFINITELY central INVOLVEMENT. Because I’ve had episodes of ear pressure/pain and unusual tinnitus in my GOOD ear, as well as migraines, brain rumbles, brain fog, etc. etc. I suspect there is a pressure regulation process that covers both ears simultaneously and if you hurt one ear, it can cause issues with the pressure regulation of both.
Thanks James. Not being able to definitely know what is wrong in the ear is fustrating.I have never felt normal after my initial vestibular event (Not calling it VN as no one can tell with certainity). The migraines were a comorbidity which made the ride bumpier and now have eased the migraine part. But the truth remains to be seen if something else is going on. I am getting a VEMP test done to rule out superior canal dehiscence and possibly secondary hydrops.
Do you know for endolympatic hydrops the effect is constant or episodic ?. Since my symptoms are constant in the case have a floating sensation while i walk i think it is some damage done during the intial vestibular event and the fine tuning (compensation) is not 100% there yet slowed even more by the migraines.
Both constant (a baseline) and fluctuating. My baseline has improved but it’s still not great. But apparently the brain can adapt. And in some lucky people it can go altogether … so they say … especially once the ‘underlying cause has resolved’
The underlying cause no one really knows. I pray that things heal on their own and save us a lifetime of trauma. This thing is really the worst form of illness and needs every ounce of our strength to match forward
Oh I think the cause of hydrops in the case of a fistula is pretty obvious:. If the perilymph pressure drops due to a leak the endolymph area will expand. When the leak is stopped you end up with perilymph trying to take up its original volume which is now taken up in part with endolymph, they clash and symptoms evolve into a new phase of Secondary Hydrops. If this pressure builds up beyond a threshold you get a leak from the weakened membrane where the fistula was. Then you get the episodes and the constant stuff. This fight apparently resolves eventually for most: perhaps it takes a while for the pressure to return the endolymph to its original size (by which time the pressure drops). I wonder however just how the pressure regulation works? Is it by volume somehow or pressure on some sensors?
I also wonder if this is the primary mechanism for loss of hearing with age. My bad ear shows the same loss you get with age. Caused by the changing physical audio response of the whole ear due to pressure and not necessarily anything do to with hair cell death although that may be another factor in later life. Suggesting that maybe this aspect is reversible of you can bring the pressure back under control.
I wonder if there is another part of the body with a similar ‘balloon in a balloon’ set up like this. Should imagine there is a similar mechanism there
Nice description. What you described is that called Secondary hydrops. I like the balloon pressuring each other analogy. Does this mean Fistula and hydrops go hand in hand. Can hydrops exist without a fistula ? I have heard of Cochlear hydrops and endolymphatic hydrops not sure what the difference is.
I beleive Meniere’s is when the membrane between perilymph and endolymph gives away and both fluids mix and cause the attack and the membrane rejoins and the attack stops. Hence Meniere’s goes by the name primary hydrops ?
Possibly. Though I’ve read many accounts of this being an outdated concept. It may be the same mechanism as for fistula. Difference is in Menieres there’s also structural destruction and this shows up as loss of low frequency hearing. This is not reversible. I wonder if Menieres is caused by both an increase in pressure plus a scarred or over stiff window into middle ear which allows pressure to increase to destructive levels in the ear instead of the window breaking to release the pressure. Or same pressure just overly weak membranes in cochlear. Btw menieres patients lose low frequencies mainly because the low frequency end of the cochlear has a structure that’s suppoosed to be 100 x weaker than the high frequency end.
Don’t forget there is essentially liquid on each side of a membrane pushing against each other. Whilst the membrane might be squeezed I can’t see why this would lead to it breaking. I don’t think it is being stretched though this would need to be visualised in 3D as it’s not a simple surface. Perhaps there is some deformation due to the variable pressure on each side which breaks some structure eventually. And if it broke I can’t see why this would lead to the pressure dropping as liquid on both sides is at pressure so there is no additional room created. No I think the middle ear windows have to be involved for pressure to drop: that’s the only escape. I think medical scientists need to consider physics more.
And perhaps ‘balloon in a balloon’ should be ‘balloon in an egg’ because the outside fluid container is stiff. It’s bone.