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OnandOn03's MAV STORY

#21

Oh, the ‘whole story’ needs tweaking sometime, and I want to write a chunk on photophobia too. Just hope it’ll help somebody else in the future. Some of it at least. I’m blaming these relapses on trying to go completely caffeine free. By timing it seems so much more than coincidence, unfortunately I haven’t bounced back from milder second attack as I did from the first. It’s more a slow crawl. It’s frustrating, as round two. Last couple of days I’m really stuck with symptoms every time I move my head. Today looking down, even a little, is bringing it on. I’m more usually hit by side to side head movement. It’s so restrictive. I would really like to be able to get on with housework but that all involves bending. I’m bored with sitting it out because apart from first thing needing to relearn balance each morning on rising, and the head movement thing, I feel just fine. No other symptoms at all. Just have to be grateful for the meds which have reduced the attacks in severity and frequency and also permit me sit here looking out at glorious winter sunshine on a frosty morning without having to close curtains and don tinted glasses, Helen

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#22

Photophobia

It was most unfortunate I was unable to record my experienves with photophobia in real time. Would have been so much better. However at the time I also had such bad visual vertigo screen use when not totalky impossible whuch it was for months on end woukd have been too uncomfortable to contemplate.

The forecast for snow issued a couple of days back reminded me of a previous snowstorm soon after my MAV went chronic and I was surprised to find looking out at falling snow increased my constant dizziness and nausea tenfold. I just couldn’t do it. Now today, sitting looking out at blizzard like conditions I find I can look at the falling snow although prolonged scrutiny of the snowy scenery (six inches overnight maybe) is making me light sensitive and causing rear head pressure so I’m certainly not looking forwards to tomorrow’s forecast of bright sun on deep snow. All this recent experience has reminded me of my days of extreme light sensitivity. A dark place that was for me. Quite literally as well as metaphorically.

As most of my episodic MAV attacks occurred following meals out in restaurants I eventually concluded some connection and lighting would seem the obvious one. Photophobia per se during acute attacks was one of the last symptoms I developed. I suspect I’d had ten years of attacks before it kicked it. The photophobia became chronic, constant after a prolonged spell of back-to-back attacks which occurred nine months after my MAV turned 24/7. It then got alot worse before it got better.

I remember putting wraparound sunglasses on in the neuro-otologist’s waiting room in October 2015 and I was doing the same when I saw the second migraine specialist neurologist in February 2017. It must have been extreme for about 18 months during which time I wore a sports visor and tinted glasses indoors and had to keep the curtains closed against any light. Dull days were as bad as sunny ones. Any light would increase the dizziness and feeling of nausea, A couple of minutes outside complete with hat and dark glasses in sunshine would make me so dizzy I’d be on the floor. I remember reacting to reflected light off a dinner knife or a stainless steel casserole dish.

I had home visits for the optician who made up tinted lens especially and the time was fast approaching when we were talking about total wraparound prescription goggles to exclude all light. During this period I could only venture outside in summer in deep shade or approaching dusk and I went - nowhere. Doctors appointments were by telephone and the optician came to me.

I contacted the neuro-otologist who had diagnosed me with MAV and suggested preventatives about it but he said he was unable to help me because he didn’t know ‘where the photophobia was coming from’! My doctor kept telling me I really ought to get out but not to go anywhere that might trigger symptoms and she couldn’t suggest anywhere that wouldn’t happen. She repeatedly told me she ‘didn’t understand anything about light sensitivity’ and suggested I might need glasses. Just in case I hadn’t managed to reach that conclusion myself. And so it went on. I know at one point I never left the house for five months. The first time I went outside, we have a large garden, my husband literally had to hold me up. MAV had certainly brought me - a country girl - to a dark place BUT with time and meds this has improved. All of it.

It’s possible, nay probable I’l have to search out a pair of amber tinted wraparound glasses to wear indoors tomorrow because of the snow but I haven’t used them for at least 18 months. I may still have trouble with other peoples lighting/some store lights but not at home, and I can walk outside these days in sun with just reactalite lensed glasses. Light sensitivity varies depending on how sensitive the brain is day-to-day I guess and there are strong links for me at least between photophobia and visual vertigo. Or at least they both show heightened hypersensitivity. At the same time I was reacting to light, a stripey tablecloth on the table and flowing river on television would ‘get’me. All gone now.

I write up this story now because I sense so many people on here with MAV are presently feeling so utterly hopeless, I felt it might restore their faith that it can and will, eventually, improve. Just as I have.

Update on Photophobia posted on 25th March 2019

Yesterday I went into a small quiet country town walked around for about 20 minutes then called into one store to buy fence paint and then a fluorescent lit pharmacy and then stood in a supermarket carpark chatting to a friend in the brightest Spring sunshine for about 15 minutes and felt just fine. I was wearing a brimmed hat and Reactalite prescription lens but I was good. Later in the day I walked out with the dog for over an hour identically attired and felt fine. Things can improve. Helen

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#23

You are an incredible lady Helen! Your photophobia reminds me of myself in so many ways. I remember telling my ophthalmologist that while moving in a car, it is like my eyes are taking still photos of any vertical structure… poles, trees etc, Not like I am moving 70mph past them.
I also remember having great difficulty with candles flickering on the tables at swanky restaurants with clients. I tried desperately to suffer through the affects they had on my vertigo without my clients knowing. Finally I simply picked them up and placed them on a table beside us out of my view. I never told my clients why and they never asked :wink:
The VP of my company always wears shirts with stripes, I can hardly look at him and tell him so :grin: He now has cut back on striped shirts since I complain mercilessly :joy:
All of my photophobia issues have reduced greatly on Ami and I believe more improvement will come in time… comparatively, I am in a very good place as it stands.
Renee’

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#24

Well it’s a month since my recent major relapse now and its brought me back to a better place balance-wise than I was at before. Still getting bit of BPPV-type vertigoy feelings on sitting up first thing but that’s now beginning to recede. Apart from that the last 10+ days have been Good, very Good. Pretty much symptom free 24/7 although until this week I’ve not been exposing myself to the strong triggers. I’ve been at home not out and about but busy baking, cooking, vacuuming, sorting out rubbish, clearing out old household bills etc. Good to be able to start and finish a task without having to take a break. Keep going most of the day doing things, ditto. I’ve even felt a increase in my intellectual capacity I hadn’t really noticed had been missing before. I’ve had to restore my Ipad to factory settings, sort alot of online goods for Him Indoors and with the lack of customer services these days that took some concentration and patience, two things MAV tends to deprive me of on occasions. All good.

As things seemed to have stabilised so much I decided to see how far the Propranolol really is coping because I sense it struggles when pushed so Monday I did supermarkets. Monday I went in a local department store for 15 minutes maybe and couldn’t wait to get out but after a short while outside in fresh air, did some shopping in Aldi and felt fine so went home pleased. Wednesday I tried more, Mole Valley proved fine. Asda not so, I soon felt a bit disorientated but stuck it out about 20 minutes but that meant I avoided the next shopping port. I sat outside the third store with fast developing rear head pressure which did recede within an hour maybe. Disappointment continued when next day my dynamic balance was really upset worse than it’s been in months. Fortunately I managed to stay upright all day and function pretty much but obviously I’d pushed it too far, apart from feeling really tired, so unusual for me, by late evening I’d recovered,

This MAV really is brutual. I’ve never had much management advice from medics but have always been told to avoid triggers hence I’ve not eaten out in a restaurant in over four years now and I doubt I’ve been in a supermarket more than ten times in the same period. I really think it may just fade into the background eventually but there’s going to be a huge gap between my actual and other people’s idea of ‘normality’ to bridge.

I found a big leap forwards by restricting caffeine 3/4 months ago, and things continue to improve. Diet. Maybe. To identify triggers, and I think, I may have found another one. I bake all our own bread, usually in bulk and freeze it same day so virtually never eat ‘fresh baked yeast’. By coincidence never since chronic MAV but always very dubious of the ‘avoid fresh baked yeast products’ idea. However yesterday I baked sweet dough cake (made with yeast), couldn’t resist a slice, didn’t intend to, and woke up today with very slightly full ears and bit rear head pressure. All through recent attack I had clear ears!

One more strange thing. Anxiety. I never had any understanding of ‘anxiety’ pre-MAV then, with symptoms at their height I was waking up every morning with that “you are to be shot in five minutes time’” or maybe the “butterflies the size of elephants pounding around” feeling in your stomach. A pyschologist told me it was ‘body anxiety’. I find if I get it now symptoms are much less it is in fact my brain warning me something’s not right. I experienced it this morning on waking to find ear/head pressure. Some days I find my brain a nuisance. Some days It just amazes me. Helen

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#25

Hi Helen

This is such a positive post! I am so glad for you that you’ve been able to venture out to the supermarket! Even the department store?! Really impressive! :grin: I similarly to yourself seem to always be a little woozy first thing and have noticed in my diary I have written (right ear pressure) seems to subside by noon and have this most days! I hope you get a chance to see the sunshine today! Well it is sunny up north! How about west? X

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#26

Yep. Yesterday was wall to wall clear blue sky and brightest sunshine out west too, today’s the same and it’s predicted to hold several more days too. I got outdoors in it yesterday marching around our garden which seemed good, particularly if you’ve read my ‘photophobia’ post. All I used as protection yesterday was a brimmed hat and reactalite glasses. I do have wraparound dark overglasses on hand but am trying to do without them. I seemed fine outside. My balance was no worse outside than in which was good however I’m much of a ‘delayed reaction’ bod. (For years I didn’t clock the connection between acute vertigo attacks and meals out in restaurants because they occurred 36+ hours later.) Yesterday, after my exposure to the sun, my balance seemed to go really off about three hours later, and isn’t as good this morning still and despite the fact I sat up in bed this morning without BPPV-type vertigo for first time since I had major attack on 17th January - over a month, I’ve had a bit of vertigo-ey wobble on Ipad this morning which seems very positional but mercifully very brief, and I’ve had to pull a curtain over a bit because of the reflected light bouncing back off my brand new stainless steel kettle sitting on my Rayburn. Winter sunshine today is so bright and so low in the sky still it only being February. Since being medicated and not being 24/7 dizzy it’s much easier to spot triggers but my triggers seem to have remained much the same. The thresholds don’t seem to have dramatically improved although the resultant reactions to them generally seems less severe. Helen

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#27

Having experimented with a few supermarket trips over the last couple of weeks without dark overglasses and with mixed results I tackled a Morrisons this morning conplete with dark glasses. Oh it’s so much easier to be able to see what you are looking at, without them. I was fine in store but usually get the delayed reaction 3/4 hours later or sometimes just short of 24 hours later so will see,

Not at all sure what the significance could be but I did notice something strange today travelling. You know how your ears ‘pop’ - pressure supposedly - well I travelled the same car route as the route to Morrisons daily for eight years and coming home both my ears would ‘pop’ most nights at exactly the same spot (travelling up into the hills), right by the same tree/bush on the right. Don’t travel that route daily now but maybe 20/30 times a year and since Chronic MAV I know my ears have never ‘popped’ once until today! When just my right ear ‘popped’. Cannot help but wonder if full ears is inflammation and that meant ears couldn’t pop. Not that I’ve always had full ears even since chronic. Must be a connection. I’ve not had any significant ear pressure now for some time. Assume meds control it now. Helen

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#28

Dizziness and Balance

I found the persistent 24/7 rotary vertigo/dizziness the most wearing and debilitating symptom and I many times found myself both saying and thinking, ‘if I could only get that to stop I’d be fine, that’s all that’s wrong with me. Apart from that I’m Just Fine’, But for many people, but not everybody, that’s just not really the case. Retrospectively I realised that was a stupid thing to think because that constant dizziness is a sign the balance system is struggling/not working correctly and needs to reset.

I’ve heard MAV recently described as a ‘Migraine Associated Balance Disorder’ and for me that’s exactly what it is. Even the 72 hour episodic vertigo attacks I had pre chronic MAV and the constant 24/7 dizziness, would make it virtually impossible for me to walk unassisted by people, walls, furniture etc. Once I was having more severe attacks I’d always lose my balance completely for as long as a week at a time unable to stand. After these attacks I would have very poor balance for weeks or months. It has never yet come back properly.

Pre chronic MAV I remember having difficulty pegging washing on the line and Looking back I can see now that that was one early sign of balance issues. Anything, such as turning to look left or right whilst outside walking, indeed anything that removes my eyes from focussing on the horizon or wherever they look to keep me upright in the absence of correct signals reaching my brain from elsewhere caused problems. Both feet needed to be flat on the floor and that floor needed to be firm. Different shoes, even other flat shoes, would cause problems. Chairs needed to be solid too. A tubular chair was like being on a trampoline. At home I would always sit in a high backed chair with headrest which I needed. Without that I would develop a stiff neck and other symptoms within a shirt time. Any vibration, such as the dog panting in the car or the fuel going into the tank would make the car feel like a boat in a storm. Because I’m very much visually dependent and light sensitive, not a good combo., I needed to make sure light didn’t enter my eyes as it would immediately cause dizziness. Peeling onions make you cry and tears blur your vision and cause dizziness, The hypersensitivity caused all manner of problems for my struggling balance system.

The 24/7 dizziness began gradually to withdraw after three years and after some months of upped dosage Propranolol but the imbalance - disequilibrium as the neuro called it - remained. It has gradually improved but my actual balance is still sorting itselt out. Like other symptoms settling it does so intermittently for a few hours only to drift away again for a while. I suddenly found I could once more kick a ball and still stay upright, and notice other tiny improvements then a couple of weeks back
One day I put on wellies(different shoes - big trigger one time), and went on in 25mph wind (another trigger), and light rain (blocks glasses for vision) and DUG UP leeks in garden with fork. No probs. Impossible even few months back because such activity involves removing eyes from the horizon.

Another day i was really excited to naturally turn my head both left and right in the open market, only the second occasion since chronic MAV. I can also walk much faster as my balance has improved even though it’s still only improving in quite small steps. Helen

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#29

Tai Chi, Balance or the lack of it

I’m still surprised at how long it took me to really see the link of dizziness and balance long before I’d heard of MAV. When I had episodic vertigo attacks I’d be unable to stand but as soon as they cleared - for many years 72 hours after they started, and I could almost check the clock by them, timing was that regular, I would have no breakthrough problems/balance issues til the next time. I could - and did - completely forget all about the attack and get on with my life, then, after about a decade I started getting breakthrough symptoms, not that I realised that’s what they were at the time, neither did the doctors I suppose. The car would stop but I’d feel I was still moving forwards: I’d be walking across a room and stop, and feel I was still going forwards: I’d be out walking and suddenly notice I was veering off at an angle of about 45 degrees to the right. The doctor said my balance was at fault and ‘there’s nothing we can do about that’. I took up Tai Chi in hope it would help. It improved coordination but I don’t think it did much for balance. It did make me somewhat more ‘body aware’ most particularly I noticed because learning Tai Chi Walking made me much more aware of how much weight I was placing on each foot. I was certainly favouring my left foot. I started to notice how the hairdresser would always have to straighten up my head when cutting my hair and noticed, my lack of balance, meant I tilted my head slightly to the right, (later on I really noticed the difference when meds improved my balance and my head moved naturally back into line - made me feel really queer for a few days as that adjustment took effect). I remember a supposed Balance Specialist Physio telling me to ‘stand up straight’, and responding that I’d love to ‘if I only knew where upstraight was!’. (She discharged me then saying there was nothing further she could do to help)

MAV is most certainly a ‘variant balance disorder’. I stopped attending Tai Chi classes once I became 24/7 dizzy as one hour sessions were too long. I continued doing a bit as and when at home alone but have always found too much would confuse my brain somehow. Most particularly Tai Chi walking because of the constant changes of weight between feet with each step, so different from normal walking. I’d always assumed once I was no longer 24/7 dizzy the Tai Chi walking would seem easy again but it continued to prove too challenging fir a long time and was a guaranteed way to bring the dizziness back for many months after my dizziness stopped which I presume means balance takes much longer to reset than the dizziness, Straightforward, ordinary outdoor walking proved less challenging although, at times, even that could easily be overdone.

Much like other symptoms, once medicated and no longer 24/ dizzy, it’s much easier to ‘see the wood for the trees’ as they say. So much easier to realise that a stiff neck, back ache, tight muscles etc are really all signs of affected balance causing us to walk incorrectly in order to continue functioning. These days, well medicated, when I have discomfort my balance is struggling. Helen

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#30

My own brief timeline for gaining control over MAV with medication (I don’t intend to jinx myself by talking ‘recovery’). I just live for today

2003-2011. Episodic vertigo attacks lasting 72 hours. Misdiagnosed as BPPV, Untreated, unmedicated,

2011-2014 intermittent balance breakthrough issues. Attacks now 8 days in duration.

December 2014. Vertigo became 24/7 following meal out in restaurant

2015 In February declined GPs offer of Citalopram (‘anxiety’), and started six months extensive VRT in April. By Late Summer attacks were coming thick and fast eight days long and back-to-back so saw neuro-otologist, diagnosed MAV and started Propranolol in December. Unfortunately ended up at too low a dose for control for many months. Stress could also be a factor. Life rather got in the way,

December 2016. I fell out walking and broke my shoulder.

January 2017. We discovered our much loved dog was terminally sick and nursed her until we lost her in April.

February 2017 sought second opinion from migraine specialist neurologist who upped my dose.

March/April 2018. The 24/7 dizziness started intermittently to stop. Major Improvement!

August 2018. Decided I’d try the John Hopkins Diet and caffeine restriction. Although no longer dizzy 24/7 still rear head pressure and tinnitus. Not ‘crystal clear head days’

September 2018. Started getting intermittent days where I had virtually no symptoms. Up to three in a row. Tinnitus starting gradually to withdraw.

December 2018 the diet and caffeine restriction seems to help. I’m getting more n more ‘crystal clear head days’, (no head pressure) and tinnitus only occasionally, when balance challenged, in right ear.

January 2019. 50% of days until past middle of month virtually 100% then an acute attack which kept me in bed on/off nine days and which I attribute to trying to completely quit caffeine. Being medicated meant the attack was less than 50% as severe than previously. Still took more than a month to fully recover and vertigo hung on longer.

Late March 2019. Despite ups n downs suddenly first time ever I seem to have taken a Really Big Leap forwards rather than a tiny step. So big in fact I went out yesterday, as car passenger, and in beautiful Spring sunshine and left my wraparound sunglasses at home! Can’t believe I forgot them!

Cannot really explain how much better I’ve suddenly felt these last couple of weeks overall but to say I hadn’t realised there was such a difference between being 100% and really feeling The Old Me as I do at this moment. It’s wonderful. Most probably far too wonderful to last and I have the Propranolol and the migraine diet to thank for it all. I would never have dreamt I would end up on daily medication but if that’s what it takes, so be it! Why struggle?

April 1st 2019. Well, I knew the gilt would fall off the gingerbread again, and it did. Last day or so I’ve reverted back to about 90% plus a few queerer bits on/off and lost ‘The Old Me’ feeling. This morning I even had some side head pressure making functioning a bit more challenging again. Changing drug brand yet again may be a feature but the drop back started before that anyway. Still, if it can do it ONCE…? Helen

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#31

Why indeed!!!. Im so happy you picked up from your relapse earlier this year i was so worried because i knew how ill you were
Keep it up!:grin:

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#32

Yep, I was rough. Quite surprised me after so long, over thre years without major put-me-to-bed attack but being on meds helped immensely. I was ill but it was only perhaps a third as bad in severity as attacks before meds. I could even use my Ipad almost as much as I wanted all through. Previously unheard of for me. Thanks for your concern. Helen

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#33

Helen, I’m so happy for you. Reading your timeline gives me shivers… you’ve been through so much, and wow, how you persevered, and still do. Amazing, and inspirational.

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#34

It has taken nearly two years since hitting an effective drug dose to truly see proper improvement. I doubt anything would have improved that by much. Had local,doctors recognised and understood the condition initially, the timeline would have been much reduced. Had I had access to a neurologist/headache clinic on other than a one off basis I might have not have wasted fifteen months struggling on too low a dose. Helen

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#35

That’s exactly what I mean, I love how you persevered on the medication, how could you know it was eventually going to work, but you put your trust in it and waited patiently. I need to remember to be patient with my med trial.

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#36

Oh, I didn’t know it would work. I knew very little at all. I had never heard the words ‘Migraine Associated Vertigo’ until Saturday 17th October 2015. I had no idea I was a migraineur til that day. I had actually turned down one NHS hospital appointment with a neurologist because he was a Migraine Specialist and I remember saying that was no good for me because I didn’t get migraines! I researched the internet about vertigo and possible related conditions but not migraines. I’d been just about to join this site, thinking it was ‘called myvertigo only to find everybody was moving to FB. If I’d been a paranoid type I could have imagined some conspiracy trying to keep me from obtaining help but ascI’m not, I just went on I doing what I’ve always done. Going it alone.

I remember being amazed at the diagnosis *at last *but delighted there were preventatives to take. Couldn’t wait to get some. My own GP was left to choose a betablocker for me. I got on OK with her second choice. I had no side effects, good or bad for months. By then I’d researched and knew they take months to work then timely enough I read a comment from Dr S’s clinic about people being 70% better nine months after start of treatment. So I waited, and waited. After three months I saw some small improvements whilst trying non medical interventions such as Alexander Tecnique, tinted specs etc, etc. I conversed copiously via email with a psychologist and another extremely photophobic person who ‘blogs’ and I just kept hoping. I never dared hope the meds would stop the acute attacks but I noted it a good sign when I passed the 15 month mark without one as I’d never gone much over a year without before meds. In fact after starting meds I went over three years until next acute attack. A miracle! I strenuously kept avoiding triggers, and got back to as much outside walking as I could - the only two management recommendations I’d ever been given. My own doctor kept telling me I couldn’t expect the meds to control all the symptoms not ever and I was ‘as good as it gets’, and also telling me to keep medication doses as low as possible. As I was a tiny bit better, still 24/7 dizzy etc, she didn’t want me to.expose myself to any known triggers and never suggested other drugs. In fact she was afraid to upset the apple cart as they say by changing anything at all. Eventually Wanted another opinion so I sought one and the Migraine specialist upped my dosage quite considerably, and so, I started off the ‘70% better after nine months’ matra again, marked a date on my calendar which brought me into January 2018 I believe, and waited it out yet again. Seems quite incredible even to me now, but that’s how it went. Helen

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#37

Wow, well done for persevering and doing the research to help yourself heal.

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#38

So glad to hear that you are on the up Helen! Jan xx

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#39

’Derealisation’ and much improved walking outdoors

Just this last few weeks I‘ve been noticing my delayed reaction to over-challenging my balance which usually kicks in the following morning when I wake up has changed from rear head and ear pressure to a strange sort of ‘I’m awake but not really Switched On’ feeling which could also be described as ‘Brain not keeping up with my Eyes’, or ‘My Eyes are not working together’, the latter of which must be complete nonsense because, despite this feeling, my vision is perfectly clear and steady. So just maybe this is my version of ‘Derealisation’ which must be where the brain has switched some stimuli because it feels overwhelmed. I guess it’s just another stage. Usually within half an hour of the first dose of meds it clears although some days, like yesterday and it seems today, it leaves me feeling odd for much of the day. If I was a computer I’d say I needed a Reboot.

I have been finding walking outside quite suddenly took a leap forward in easiness. I seem to have lost the visual vertigo and can walk much more briskly and without as much dependence on the walking stick and can even have an occasional look around left and right whilst marching along. All far more comfortable than it was. Therefore I’ve increased the distance I cover and challenged it further by crossing more rough and uneven ground and whilst in action I‘ve felt fine. Good and quite comfortable. So much as that I notice I return to the parked car at the same brisk speed I left it and I am not longer mentally counting off the steps until I can sit down during the last leg of the return journey. I am however noticing this ‘Derealisation’ feeling kicking in instead and my reason for thinking it’s because my vestibular system is overwhelmed is because as soon as I get in the car and therefore give my balance more sensory aids (bottom of seat), the feeling disappears only to return the following morning. I guess it hung around all day yesterday because I just tried to ignore it and pushed on doing stuff around the house and in particular cooking, making up home-cooked ‘Ready Meals’ to stock up the freezer. Because of that I woke up with it again this morning together with a bit of side head pressure. It’s certainly a weird sensation. Some days it’s much worse than others in intensity. I guess it’s just a stage in progression but trust it’ll pass in due course as other sensations have. MAV continues to give me plenty to think about. Helen

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