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Why does MAV constantly morph?

#1

Hi all… hope you had a lovely xmas! I feel asif im going around in circles!! Just when I think im starting to feel a bit better an array of symptoms hits me all over again a little bit like this…

Head pressure
Facial pressure
Ear fullness like fluid wishing about
Nausea
Visual disturbance
Unsteadiness
Dizziness
Migraine
Faintness

And then… the cycle starts all over again!:thinking:

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#2

Nobody really knows what causes MAV so I doubt anybody could honestly say why MAV constantly morphs. It just happens. Possibly it has something to do with the fact the hypersensitive brain doesn’t like change and it is constantly subjected to change. We eat different foods, expose ourselves to different lighting, take our feet off terra firma by riding in vehicles, go into supermarkets, nail saloons, bend over over hairdressers sinks, lie down on flat surfaces without neck supports, bend over to pick things off the floor, In other words we try to live a life with which, in its heightened state of sensitivity, our brain cannot cope, so it rebels. MAV tends to hang around for a long time, years often, and throughout that time it does change. We take drugs to try to increase our thresholds of tolerance to triggers but meantime we should try avoiding those triggers. The drugs we take also cause changes which are necessary to bring about improvement however quite often our brains don’t take kindly to them and that causes symptoms to change.

Another long-term MAVer said to me very recently ‘I’ve been up and down since last spoke which is normal’. You list most common MAV symptoms which we all experience and which can change constantly… that I’m afraid is the condition we call MAV. Helen

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#3

Yeah, what is your total turn around time? 2-3 days?

#4

Ive been unable to work or drive my car since 17th dec so I was hoping this would have passed enough to a degree by now. I guess I need to rest my hypersensitive brain because when I rest I do find my head pressure goes away. During this time though I have had periods where I have thought, Oh im ok now. Unfortunately it hasnt really lasted though :thinking:

@Onandon03 Hi Helen, indeed yes I have been trying to do things within my means but you know what is it like… everything still needs to be done. I guess im just getting frustrated but im still on a very low dose of Ami and havent been on it that long. I suppose I will just have to wait it out. What is the Migraine diet you follow? I have been looking into it today. Somethings got to give
:roll_eyes:

#5

Unfortunately, the thing that often has to give is the hope of a quick fix. Think of MAV as a traumatic closed head injury and you start to understand the scale of healing needed and the time involved.

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#6

So, Kirsty isn’t it, but a week is nothing with MAV. As @flutters says you must give up the hope of a quick fix. It’s not likely to happen. When I started meds for MAV I read most people might expect to be 70% better after nine months with MAV. I marked that date on my calendar and worked towards it.

Yes, one lives thinking ‘everything needs to be done’ however, not necessarily by you, and, in cases of chronic illness, it’s amazing how little really must be done in order to survive. I lived many years in house where others had chronic illness (not MAV) so knew that before ever MAV hit. It’s frustrating but as you say it’s a case of sitting it out.

I follow John Hopkins Diet. I take the meds, Cut caffeine, walk outside every day and avoid triggers. It’s a package route of attack. Helen

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#7

I hear you, I suppose I am just so used to living with it that everyday feels normal until I have to be off work or can’t do the things I normally can. Im lucky I have a good support network and now I have found this forum with all you lovely people to help me through so, I do feel blessed for that.
Now I have started some new meds and know about this diet thats so popular on here I am hopefully armed for recovery.

Just being on this forum makes me feel more informed and I am interested in having the MTHFR mutation analysis to see if I have a mutated gene as I also have a auto immune condition… so i’ve learned lots already :grin:

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#8

My sister was over for Christmas. She and I both have a range of disorders with some overlap. Me - MAV, PCOS - the severe phenotype, TMJD - also severe, IBS, hypothyroidism, endometriosis, high BP, Reynauds, Eustachian tube dysfunction, suppressed kidney function, subluxed atlas and arthritis (4 car accidents), rosacea, eczema, and a bunion for good measure. Her - PCOS - milder presentation, hypothyroidism, anxiety, insomnia, severe scoliosis, melasma, other stuff I’m sure. Both of us are consistently in pain from her back surgery and my hysterectomy scar tissue that’s grown quickly and copiously. Mom’s got skin problems - psoriasis, plus a bunion. Dad’s got migraines though probably that has to do with dying of COPD. Turns out my sister has both MTHFR mutations, plus another I forgot the name of. All 3 are very common mutations, but it’s rare to have all 3. Given 7 of the disorders on my list have been at least preliminarily linked to MTHFR, you can bet I’m more than a bit interested in getting tested, and more importantly - treated.

#9

@flutters as if MAV wasnt bad enough - I actually cant believe the battles you have to face daily just to get through. Its very admirable. Are you in the UK? I am definitely interested in getting the blood test, currently looking for a reputable lab to do the test, I have read that the supplements are Methylated folic acid? Does your sister by any chance take those? Or is there some other way they treat it? There has to be a link in auto immune conditions a mutated gene. Very interesting stuff. I shall keep you posted on any progress regarding the test. I am very keen to have it done sooner rather than later, however need to be well enough to endure a car journey first :see_no_evil::face_vomiting:

#10

You will get well enough for the car journey. I’ve had medical issues my whole life. MAV didn’t get disabling until about a year ago. It was truly disabling in Jan/Feb, better as I started medication trials and progressively better after I started Effexor in the late spring. Now, I have a lot of good days. Even the bad days are manageable. Attitude is key. When you can control only one thing, put your effort into that. Today I had the rare day where I needed a couple of rescue drugs (Meclizine and Promethazine). Too much holiday stress suddenly relieved caused a flare up. That used to be daily, so I’m counting my blessings.

I’m in Seattle. I’m going to try my sister’s doctor since my GP vanished from the practice and they won’t tell me where she went. Look at the MTHFR thread going, there are a couple of good online, relatively inexpensive places you can get your genes tested with a mail in saliva sample. They come back as raw data, but there are also good internet translators out there to tell you what the results mean.

Yes, my sister takes certain methylated B-vitamins and follows a paleo diet. (I forgot to mention our dizzying array of allergies that don’t overlap. She’s celiac. I’m allergic to eggs, lactose, nightshades and do poorly with gluten and sugars.) She’s looking awfully good, too. I’m guessing she’s sleeping better and has less anxiety. She seems a lot more grounded these days.

I think she and I have different presentations of the same issues - all affecting GABA, dopamine, serotonin, norenepherine, and I’m guessing glucose metabolism plus electrolyte homeostasis. Lord I wish I hadn’t gotten a D+ in Organic Chemistry II. (Dr. Grove, where are you when I need you? Also, I’m sorry I bought the chemical model kit but only made a jeep out of it.)

Join the other MTHFR thread and keep us all informed. This is VERY interesting.

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#11

I believe MAV morphs because it represents a instability in your vestibular system for which your brain struggles to compenstate.

I believe it’s an issue with homeostasis of the inner ear where the ear’s response changes too drastically over time for the brain to keep up (stressing the brain into a migraine state periodically)

This must either be because of an issue with or injury to the inner ear, or some external influence somewhere else in the body that impacts on the homeostasis of the inner ear. For me the ear symptoms are too obvious to discount inner ear involvement. The most obvious culprit is an imbalance of the inner ear fluids (perilymph and endolymph) which sets up all kinds of chaos - for me this perfectly explains the morphing and fluctuating symptoms, pressure feelings, tinnitus, odd sensations, then neurological fallout and so on. Any impact to the inner ear is going to have a knock on effect on the brain that gets confused with the signals it is receiving versus what it expects and what the other ear is telling it.

All the processes that govern your vestibular system are in balance when healthy, but once something gets sufficiently out of balance you end up with all kinds of fluctuations and exacerbations, issues caused by systemic feedback loops including anxiety etc. All this collectively leads to the morphing symptoms.

If you are lucky, despite the fluctuations, the condition will eventually morph back to some kind of balance.

Everyone has their own theories though … some people think it’s purely ‘central’ but that’s not convincing to me as there is very little explanation of that mechanism. Also the body is one very integrated system, not isolated components.

#12

I’m in the same dizzy boat as you right now. I had months of mild and just annoying dizziness and nausea but it returned stronger yesterday. Even woke up this morning with dizziness which hasn’t happened to me in maybe two years. Could it be holiday stress, changing weather, different foods, and whatever? Just hate having a setback…