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 donāt 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 havenāt 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 Iāve reintroduced most of them pretty successfully. Iāve 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 TVās 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 Iām 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 isnāt 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, āThe Screamā. Iām not scared, Iām not depressed, just frustrated. Helen
I get that. My husband and I are staying 9 days in our new camp trailer that used to be owned by heavy smokers. Itās 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 weāve 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!
I have to fumigate myself when I leaveā¦ even my bra is completely overwhelmed with the stench! It really is dreadful! Then low and beholdā¦ migraine later that evening
Iāve a friend like your Grandma. If Iām visiting I deliberately donāt wash my hair beforehand cos I know Iāll want to do it the instant I get home. Smokeās 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. Iām hyper to smells. Always was. My Him Indoors gets his exasperated look again every time I say āWhatās that smell?ā At home and start hunting around. He flees. Thatās the trouble with same triggers. You just cannot avoid them. Helen
Oh yep! Same ladiesā¦ my mum is terrible! She just squirts as much perfume on even if Iām meeting her for lunch! She doesnāt realise how much it bothers me!
It seems much like everything else about MAV there is no answer. I went more than two years, probably nearer three and didnāt 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 Iāve tried to get reacquainted with quite successfully. In Octoberās consultation with the neurologist she suggested introducing āshort frequent visits to cafes and restaurantsā 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 canāt 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.
Thatās 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.
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.