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Root cause of my VM

I am torne between continuing the search for the cause of my vestibular migraine or going back to see doctor S and get another med to add to the mix.
The more i read the more I think that we all have more or less the same symptoms but we have different thing causing it.
Gluten, hormones imbalance, gut dysbiosis, vitamin B12 def., vitamin B2 def, iodine def, atlas, … there are so many reasons for this to happen.
Wondering how many of you had a chance to have a full blood, urine, stool tests done and didn’t find anything wrong?

Never had any chance to have any of these things or anything else either than a CT and a MRI scan. Even denied a B12 blood test despite Grandfather had deficiency. Nibody has ever in over fifteen years suggested any tests of any sort to try to establish cause. Neuro-otologist told me it was ‘multifactorial’ but omitted to mention any of the ‘factors’ involved. Helen

No one understands the root cause or causes of MAV. At this point, we’re not even sure if we’re dealing with one diagnosis or many, similar but different causes and diagnoses. The search for cause in each of us and by each of us individually is probably fruitless. Try to feel better instead. That may mean you keep searching and find other issues you have. Treating other issues can help you feel better in general. I have MAV and a slew of other genetic issues that affect a lot of things. Tracking those down and treating them have improved my quality of life.

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Just read all the discussions in this Category. It will give you an idea of the theories out there but also how little we know for sure.

It certainly appears there are different causes for different folks.

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Agree entirely. You could drive yourself crazy just thinking about it. WhatnI could and perhaps should have added to my original comment above is that, despite not knowing the root cause, I followed the advice and tried preventatives and they do work up to a point. I do regularly wonder how realistic it is to expect to keep adding in other drugs, making further lifestyle changes or whatever assuming doing so will necessarily result in a return to ‘total normality’. It’s good to aim high but is it realistic. Bit of a different argument that comes to mind. Helen

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I don’t agree, not for every case anyway. For some it may be as simple as being gluten free, for others of course not.
I guess at some point I will give up into changing my current meds

I can only speak for myself, my money is on damaged nerves sending abnormal signals to the brain and confusing it. An out of control immune response can damage nerves(autoimmune disorders), this explains the persistence of our symptoms.

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That may well be but there must be other factors physiological and predispositional. I say that because I’ve one sister-in-law with presumably unstable autoimmune disorder (thyroid issues) whose latest problem is a skin condition which won’t heal. Now in very recent years she’s had cataracts removed from both eyes, and had a total of three hip replacements all or any of which can affect balance and therefore cause dizziness/vertigo and so far she’s never had a bit of either. Her balance is as steady as a rock. Must be other factors in there somewhere. Helen

No, my educated guess is it is NOT direct damage. It’s instability. Damage can be compensated for. The brain is extremely good at that. Instability beyond a threshold is however much more difficult for the brain to deal with. And every time the system response changes beyond a certain delta, the brain is irritated and you may feel dizzy. Go even further and I propose this escalates to migraine.

This is why I think the problem is much more likely to involve a fluctuation issue like pressure.

Evidence of this includes a study where they got healthy people to wear prism glasses which made the subjects see turning right as turning left and vice versa. The subjects were initially confused but adapted enough within 3 weeks to do daily chores like cooking and negotiating a maze. They wore them every waking hour. It took them less time to adapt to taking them off again.

Essentially this mimicked a stable lesion.

MAV is a condition in which there is clearly chronic decompensation. Migraines may actually contribute to or inhibit compensation but I don’t personally believe it’s the root cause. I get the feeling migraines are an outcome of sensory instability. Or worse, one outcome of migraines might be a physiological effect on an already unstable inner ear causing further sensory instability, more impetus for migraine activity and boom, a vicious cycle has been created.

Yes. You could well have something there. Instability is involved and that’s what the brain cannot deal with or not quickly enough perhaps. I could see my case in such a light. Somehow fluctuating hormones cause instability, ie varying blood pressure or something because of hot flushes or whatever and that causes vertigo. That could fit in with my pattern of years of self contained episodes of vertigo which settled completely between, then increased fluctuation caused extended length attacks and dizziness, all of which resulted in migraine like attacks (without the headache in my case). Would fit quite well. The earlier attacks lasted 72 hours and for years were ‘just’ full rotary vertigo with accompanying vomiting and diarrhoea. Nothing else. All the other migraine type symptoms came on bit by but very gradually. No record of the order of play. Rear head pressure, ear fullness not until the later extended length attacks (eight days). and then hearing distortion later again, and then definitely I do know photophobia last to kick in.

Then, where ever the root was, as you say

Helen

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I’ve had lots of blood work tests, nothing shows up. I’ve even done various naturopath tests, which you need to be careful with because it seems they will always find “something” that is wrong and that needs adjusting like probiotics, hormone replacement therapy, IGG food sensitivity, hair/mineral analysis, etc…

It could be that I’m missing something. But I like to think of that term “central sensitization”, as it describes the general situation lots of us are in. How ever we got it, we have an overactive nervous / pain system that needs to be calmed down. And I get more confident in this story the longer I go with MAV because nothing helps really except pursuing migraine treatment in the form of drugs, Cefaly, supplements, diet, etc… Gluten free didn’t do anything, probiotics didn’t do anything, fish oil, etc… The naturopath started to get frustrated, eventually I think she just concluded I had an anxiety problem and that nothing was going to help. So I got a new doctor and pursued the migraine treatments and got a lot better.

The trouble was when I was suffering so much I wanted to “gamble” in a way, trying to find the “one thing” that would finally present itself as the cure. But it never came and I really don’t think there is one.

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It’s sort of a stages of grief thing, if you substitute the word ‘gambling’ for ‘bargaining’.

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I thought between the Nort and Effexor you had good control. Why the third med request from Dr.S ?

As you said, it’s different for everyone and sometimes I think you will never find the root cause, because migraine isn’t understood well enough. “common” triggers aren’t even thst common, since studies revealed people are wrong about what triggers them alot of the time. I’ve had a basic blood count done, a thyroid test, diabetes test, but all was normal. I’ve been referred to an Endo to check adrenals out because of my anxiety symptoms but that’s pretty much it. The consultants aren’t bothered about searching for root cause, and I understand why, we don’t understand migraine well and tests aren’t black and white. It depends on if you have other conditions or symptoms that may suggest other problems. I don’t. It’s all migraines related. I used to obsess about looking for cause, but I try yo let go of that now and accept I may never know, and that focusing on treating the symptoms is the best thing i can do, rather than searching for answers that likely will never come as i don’t have obvious signs of cause.

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Dr S said (1 year ago) to increase the effexor and decrease the nort. Every time i try to increase effexor I get horrible symptoms at the third attempt I gave up. So I am stuck with 2 anti - depressant and the only solution was adding a third medication :frowning:

I haven’t seen him in 1 year as I moved to Switzerland … I would need to go to see him in the UK

As a long time-served forum member I suppose you’ve already tried increasing in tiny tiny increments?
Together with not reducing the Nort at the same time. Just a long shot. Helen

Why don’t you try contacting Dr S’s secretary or even writing an old fashioned letter to ask what to do. He told me that there was no point in taking a drug if if it gave you horrible side effects as there was always another drug to be tried that could work in the same way.

What is the reason for trying Effexor increase ? If you have good control using Effexor + Nort continue on the current combo and don’t change a thing. What do you gain by reducing Nort and increasing Effexor, that is the part i am missing. Is Nort causing any unwanted side effects ?

Overall i am trying to save you a trip to Dr.S in the UK :slight_smile:

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Yes taking a flight is pretty extreme. I wonder if he’s licenced to consult over the phone, or perhaps only in the EU?

At one point I was tempted to fly to Chicago!

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