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Where does Trigger Avoidance end?

Continuing the discussion from NEW LED TV and increase in symptoms:

Well, is it? Really in the long run. Surely such an experience is strongly indicative that there are issues that do need to be addressed. Fair enough such a huge assault on already heightened senses is the other extreme and personally I don’t think, having had MAV, I would ever expect my brain to tolerate such a megatron or even one half the size but I still have to ask the question. Is accommodating it or ignoring it going to make it go away? I think not. Surely it must be far better to embark on a preventative whilst symptoms are still episodic and the vestibular system is still able to reset itself than wait and end up trying to medicate a system that is already hyper sensitised 24/7.

The necessity for Trigger Avoidance was about the only piece of advice I ever received from the medical profession. Everything else I had to work out for myself. But Trigger Avoidance was thrown at me consistently by my own GP, the VRT body and the migraine specialist neurologist. I avoided supermarkets for over two years and 4.5 years on I still haven’t been inside a restaurant. Having been chronic since December 2015 and having had extreme light sensitivity I had a lot of triggers to avoid but gradually I’ve reintroduced most of them pretty successfully. I’ve improved dramatically over the last two years and even more so this year. I can use a Ipad all day if I want, a PC but less and TV’s not a problem. I can do Step Ups again, stand on a step to extend my reach even sit out in summer sunshine for an hour. But there are still Triggers which will get me. I still cannot pick the runner beans in the garden, peg out a whole line of washing or kneel down to do weeding.

Yesterday we went into town. Not big town, or the county town just small county town. Despite being Saturday it was very quiet, no crowds at all. Bright and sunny. We shopped briefly in Argos then went into quite a big department store. Very few people about. Before we drove home we popped into a bakers and queued a while. All no trouble at all. I felt fine. Totally comfortable in the shops. A very slight something outside, just momentary and quickly forgotten. Came home, cooked light lunch then did one of our accustomed walks with the dog, back home, cooked a meal during the eating of which a hot flush brought on some dizziness as tends to happen these days and then felt bit off all evening. As a result of that outing today I’m about 85%. My head is tight, My eyes feel like they are long since divorced and going their separate ways and my balance is just off.

So too many triggers (a bit of shopping) has wound it up, again. I know perhaps I should be out and about exposing myself to these triggers much more often perhaps but it just isn’t going to happen. Trigger Avoidance can only go on for so long. At this moment I feel as if I could do a very passable interpretation of that famous painting, ‘The Scream’. I’m not scared, I’m not depressed, just frustrated. Helen

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I get that. My husband and I are staying 9 days in our new camp trailer that used to be owned by heavy smokers. It’s been cleaned but it will need a major renovation to stop off gassing. No amount of airing out and cleaning will make me not sick. First vacation we’ve had in years and I feel like crying.

Oh Emily I totally relate! Visited my ill Grandma yesterday and her house has been smoked in for the last 50yrs! Honestly when I opened the door I immediately felt this wave of sickness come over me the smell was so intense! :nauseated_face:

I have to fumigate myself when I leave… even my bra is completely overwhelmed with the stench! It really is dreadful! Then low and behold… migraine later that evening :woman_facepalming:

I’ve a friend like your Grandma. If I’m visiting I deliberately don’t wash my hair beforehand cos I know I’ll want to do it the instant I get home. Smoke’s not a trigger for me but Chocolate is. I can smell it two rooms distant. And Bleach and most of those household cleaners that contain the smallest amounts of it. And perfume. Do many women bath it in neat? Often smells like it. I have to move in queues sometimes to get farther away. I’m hyper to smells. Always was. My Him Indoors gets his exasperated look again every time I say ‘What’s that smell?’ At home and start hunting around. He flees. That’s the trouble with same triggers. You just cannot avoid them. Helen

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Im also like a bloodhound…smell anything a mile off.
Jo x

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Oh yep! Same ladies… my mum is terrible! She just squirts as much perfume on even if I’m meeting her for lunch! She doesn’t realise how much it bothers me! :roll_eyes:

Same! Scents just kill me. (Bathing In perfume neat made me laugh out loud :joy:).

We’ve been scouring this trailer raw. We’re getting there. It’s going to take time but I’m now less tempted to use my Cefaly on repeat.

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:joy::joy::joy: I know! I love to smell good but some perfumes really are killers!

I wear Creed “Love in white”
It’s the only thing I can get on with these days! :woman_shrugging:

Everything of mine is unscented - deodorant, shampoo, soap, laundry detergent. My life has always been as scent neutral as humanly possible.

Then came along my teenage boy and his love for Axe body spray. Also, he appears to be phobic to actual bathing.

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Phobic to bathing!!! :joy: Surely thats a boy thing?!
I’m still having to remind my other half to shower daily… :woman_facepalming: he is 33!!

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Don’t get me started on the child’s shoes.

It seems much like everything else about MAV there is no answer. I went more than two years, probably nearer three and didn’t step inside a supermarket. The very occasional small local type shop but none with the high stacked food shelves and huge fluorescent lights. I did enter any restaurants between early December 2014 which resulted in Chronic MAV kicking in and 8th October 2019. Not one still one, for one minute. Other triggers, car journeys, lights etc very gradually I’ve tried to get reacquainted with quite successfully. In October’s consultation with the neurologist she suggested introducing ‘short frequent visits to cafes and restaurants’ in the hope that that would reduce their future potency as triggers. She further acknowledged that the long absence would by now have sensitised my brain against such environments. You just can’t win. Helen

You might be able to in the long run but I firmly believe a lot of front-line doctors have this fundamentally wrong.

MAV is being caused by an instability in the sensory feedback loop imho.

You might be able to compensate more the more you expose yourself to aggravating stimuli, but unless you treat the issue which is causing the instability in the vestibular system the brain will struggle to learn and adapt.

Basically even with the same stimulus what the brain is reading today will be slightly different to what it reads tomorrow because the information is subtly different so it cannot reinforce the same pathway.

That’s what unifies us all imho.

The only path to med-free recovery is treat the physiological issue that is causing the instability or hope that it stabilises with time.

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There is no known ear condition which can last for decades -quote from Dr.Baloh. I agree with him .

If you have PLF get a surgery if it does not heal in 6 months. All PLF is accompanied by hearing loss and trauma at time of dizziness. Do not ever lose sleep over whether you have a PLF, once a neuro-oto told you so.

Migraine meds have stopped 100% dizziness in multiple patients over the last decade proving beyond a shadow of doubt migraine as the cause of dizziness.

While ear conditions can cause migraine like dizziness , it is illogical to conclude migraine cannot cause dizziness.

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