I’ve seen many references to ‘crystal clear headache days’ on here going back as far as 2007. I first came across the term, coined by Dr Silver of The Walton Centre, years ago when investigating Preventative Medicines the aim of which he wrote
is to achieve 28 or more ‘brilliantly crystal clear headache-free’ days per month.
As a person whose main MAV symptom has, so far, always been vertigo/dizziness and who always claimed no headache years of attacks past before I realised that since their severity had increased to an extent they would confine me to bed for a week at a time that the presence/absence of rear head pressure was a deciding factor in my debility. Slight rear head pressure might mean I could stand up and walk, excessive head pressure always meant no way. I remember the first time I met the VRT person offering symptoms of 24/7 dizziness and rear head pressure. She smiled without recognition or response. I remember thinking how odd it was have such head pressure when supposedly I’d had labyrinthitis at some undisclosed time in the past that Had obviously slipped my memory and never got recorded in my medical notes (ENT explanation when he couldn’t find anything wrong with me and it wasn’t Menieres).
I’ve long since come to recognise a rear head pressure day is a bad day, a pressure free day a good one. The head pressure became more and more obvious once other symptoms were controlled by meds. It hung on and on but caffeine restriction reduced it considerably but it’s always linked with worse/bad balance days.
I was told my symptoms were ‘migrainous’ and as the same preventatives are used for straight migraine and MAV to try migraine preventatives. Nobody medical seems to be able to reach an conclusion as to whether 24/7 dizziness is or isn’t a substitute for a migraine headache and the same drugs are used for both I think the choice of drug used may depend on the presence/absence of headache aka ‘head pressure’. Propranolol is excellent at controlling migraine attacks but not so hot with vestibular issues. Dr Hain states Effexor is brilliant for visual vertigo and so on. Beyond that I suppose choice order depends on the consultant’s personal opinion. Whichever way it goes I’ve found success for me relies on ‘crystal clear rear head pressure free days’ just as much as it would with a classic migraineur. When I experience a head pressure free day my head sits comfortably on my neck, my neck muscles are completely free and I can look from side to side perfectly naturally and my balance is OK cos ‘underneath’ it’s not damaged. Helen Migraine treatment – Nick Silver 2013
I find once the rear head pressure has completely cleared all the neck tightness is gone and movement just flows. How much is cause or effect who knows. Tight muscles can mislead the brain. Whatever causes it release from head pressure sure feels good. Helen
With the current UK heatwave, with temperatures due to peak tomorrow in the region of 38 deg C, we too have had some severe thunderstorms overnight last night or so I was told when I woke up this morning. Apparently I slept right through. However it’s hot, heavy and humid, not MAVer good for sure. That combined with recent events has obviously lowered my threshold somewhat because although I woke up with a crystal clear head today less than ten minutes out in the morning sun putting washing on the line, despite baseball cap and wraparound sunglasses, brought on instant rear and side head pressure. Ten minutes back indoors and it was ceasing. Within 30 minutes it was gone! Helen
Vertigo was mild this morning. So far I’m coping with the heat though I avoid sitting out in it. Beta blockers and heat just don’t mix well and I’m trying to increase those crystal clear headache days in number. Helen
Oh me too after the Conifers yesterday I got sun burn on my back even with sun screen and a very sicky head that evening. Today played it safe and went to air conditioned gym
Usually heat affects my MS fatigue in a big way -dont wish to jinx it but so far I am managing OK!
Not sure whether this is anything to do with it but for about 2 months now I have been doing some intermittent fasting and fasted cardio to try to reduce inflammation. I eat my first meal at 2pm and last meal 5pm. Seems to be helping my usual MS stuff
Strange how we are all so different. It was reducing caffeine that reduced my constant head pressure more than anything. The Propranolol controlled the attacks but not that. For me the ‘constant head pressure’ is the whole essence of MAV. If I haven’t got it, it’s a ‘crystal clear day’ and the balance is fine. Your MAV’s obviously quite different. I remember telling VRT on first acquaintance my symptoms were 24/7 rotary dizziness, rear head pressure with occasional flat-out vertigo attacks that lasted days. The rear head pressure seemed even more obvious during those attacks and once the Propranolol controlled the 24/7 dizziness. So ‘crystal clear headache days’ are the aim. Helen