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OnandOn03's MAV STORY

Hello Onandon,did your tinitus get worse before it gets better? Also are you still on medication? Thanks

So many of the symptoms you describe ring so true to me! :+1:

Thank you for this post - very informative! :blush:

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Thinking about it, I suppose yes. Originally only ever had tinnitus during acute attacks then it would clear completely. Not sure when it became 24/7 but it accompanied the ear fullness going 24/7 but it must have started to be constant quite a long time after I became 24/7 dizzy. More than a year later at least I’d say. The two symptoms withdrew more or less together. I now only get a little tinnitus in my right ear occasionally and virtually no ear fullness. Yes I’m still on meds and expect to be for years to come if not ‘for ever’. Helen

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Strained eye muscles seemed to cause my ‘depersonalisation’ type symptoms due to incorrect eye prescription specs but they could just as easily be overwhelmed by visual stimulation coming from MAV which could be what happens to some other people. The result is the brain’s way of trying to cope. Helen

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I remember you telling me at Christmas that it sounded like strained eye muscles.
Still get it on and off but doesn’t seem as persistant. Perhaps it the meds? I definitely get it when I have been visually straining my eyes (occasionally forget glasses) :nerd_face:

The continuing Ups and Downs of MAV

Saturday morning, in glorious bright June sunshine (yes, this is The Woman who was confined indoors living like a mole for months and who didn’t dare to venture outdoors until dusk through two summers), I indulged myself in a brief moment of frivolity. Having had occasion to unpadlock our vehicular entrance five-bar gate for the first time in years, I took both feet off the floor and glided across the yard balancing on the bottom rail. Just for fun. Well to see if I could do it, and still stand up at the end which I did. To me MAV has proved very much a variant balance disorder and how. It most certainly disordered my balance throughout and periodically continues to do so. I spent whole weeks in bed - ‘balance-less’ - unable to stand and my sense of balance is still slowly returning. This applies particularly to dynamic balance. Oh, I can generally stand on one leg, either one, although, just like hands and eyes, we do each also have a dominant leg (something I’d never thought about pre-MAV), but, with poor dynamic balance, hopping, jumping, or kicking a ball or anything that involves both feet off the floor even temporarily prove impossible. So the gate ‘ride’ - look on it as my version of a roller coaster at a fair - was a great leap forwards, Quite literally!

Anyway Saturday continued well and turned out to be my Best Day Ever so far since chronic MAV. Not only did I feel 100% symptom free, I felt my “Old Pre-MAV Self” all day long. Launched myself into housework with gusto, and a vacuum cleaner, and ended up re-organising the airing cupboard (bit practical VRT there), and tidying out the storage units under our bed.

MAV is so unpredictable. The week leading up to Saturday was a bit odd. I’d had several days of a really badly ‘swimmy’ head every time I moved it which was possibly caused by pollen. Elderflower in full bloom may be the culprit which seems ridiculous really because pre MAV I picked and stripped loads of the stuff annually for Elderflower Wine, first for father-in-law and then for myself and never so much as a sneeze! Another MAV hypersensitivity - thanks very much! Treating the suspected pollen allergy with saline nasal irrigation which helps as does the weather some days.

Later in the week the balance became worse. At one point I was, very nearly, rocking because of it. This I think I could attribute to a bit of stress, the result of extra duties imposed by my Him Indoors being unwell. Then, on Thursday evening, I felt a but better and I spent 30 minutes route-marching our main drive. This was not a walk. It was brisk marching and continuous exercise. The ‘swimmy’ head gone, I was pleased to find I could march briskly albeit still with a walking stick, and turn my head to one side and maintain that a few steps quite normally. A bit of improvement which tends to come and go. MAV improvements wax and wane. Symptoms don’t just stop. Well, mine haven’t,

So, after quite a variable week, Saturday was a surprise to me, but a very pleasant one. Human nature being what it is, such improvement makes our expectations soar. We imagine we are almost there, and start planning. Sunday morning I was back to 89% maybe and today, Monday, might just scrape 75%. I’ve bit of rear head pressure and the stuffy pollen? nose is back and I’m wondering what I may have eaten to cause this but cannot think of anything. So, on we go again. Helen

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Helen, I’m curious as to whether you would ever consider increasing your Prop dosage in in the hopes of more consistently reaching those elusive 100% days?

Oh Helen, it makes me so happy and hopeful seeing updates like yours. I pray one day (hopefully soon or I’ll go crazy) it would be me typing them :heart::heart::heart:

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A very pertinent question D. Oh that it were that simple. I would have loved to be able to do so and have often wondered how well it would have worked out. Well I suspect. However the Trouble is, as you already know, the drugs used as preventatives are bring used ‘off label’, ie not for their original purpose. Propranolol is designed to control irregular or fast heart beats rhythm and treat high blood pressure. Very recently beta blockers have been removed as first line choice for the latter because they are less efficient than newer alternatives I believe. They are however extremely efficient at controlling, ie ‘slowing’ fast heart beats, and from my experience even more efficient at slowing normal ones (like mine). I daren’t lower my pulse any farther.

When it comes to adding in further preventatives the migraine specialist neurologist was very kern on me taking Sodium Valproate. I am very much against trying any drug of that class and I have contraindications for antidepressants, most particularly the tricyclics and most probably Venlafaxine so, I’m just a bit stuffed! When it comes down to it the apparent ‘huge’ choice of preventatives on the list is nowhere as huge as it might at first appear. Increasing the Propranolol would probably have been the ideal solution! Helen

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Ah, I see. Thanks for your generous response.

People don’t realise that Propranolol is a powerful drug. I couldn’t breathe on it at all and had to come off!

How about pizotifen? Or are you more keen to just stick it out with the likelihood that you will improve in time.

As someone who has never broken the 10% ceiling, I don’t mean to minimise your fantastic progress. Of course all medicines come with the risks of side effects or regression. Just a (friendly and welll intentioned!) thought.

So pleased for you for the progress you’ve made already and impressed by your fortitude.
Best,
D

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All these drugs are powerful. It’s unfortunate they aren’t MAV specific.

Pizotifen has a similar structure to the tricyclics. I think I read it’s also an antihistamine which isn’t supposed to be taken with beta-blockers though I have seen people on here on both at very low dose. Neither neuros (2) ever mentioned it neither has my own doctor. They probably don’t know it exists! Yep, looking back I’m amazed at my fortitude too. It’s probably only down to the fact I’ve yet to master how to swop skins with a healthier being and still stay alive. Oh that. and finding the mug who would want to swop! It’s so difficult to swop skins! Helen

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My morning after their Night Before!

The back end of last week a huge brightly striped marquee complete with flags appeared in a field adjacent to our house and on Saturday several hundred people arrived, carload by carload. Mid afternoon we heard singing sounding like hymns then all went quiet until about 6.00 pm when the, er, with apologies to Mozart, ‘music’? started. Loud constant musical noise accompanied by even louder drumbeats that I could feel vibrating through the floor until midnight when a fireworks display akin to a battle re-enactment brought the event to a close. Blessed with good double glazing and quite a cool damp evening we watched and heard television quite normally, thought no more about it, went to bed about 11.00pm and lay awake. Fell asleep once the fireworks passed (it’s light that bothers me, not noise so I didn’t get out of bed to watch). Woke up Sunday morning feeling fine, no rear head pressure, should have been good day and was, until I tried to sit up in bed. Vertigo. Vertigo like I’ve not experienced in years. Even a new sensation, ‘Internal Vertigo’. I’ve never had before. I couldn’t believe it. A new sensation after 15 years. Horrendous. Internal Vertigo isn’t relieved by shutting one’s eyes. In fact I didn’t seem able to actually close my eyes at the time. I could also actually feel my eyes jumping. Cannot remember the last time I’d felt that. Well I never expected to be getting up at all Sunday but I swallowed the meds, lay as still as possible for about an hour just hoping my stomach contents would stay where they were supposed to be long enough for the meds to hit my bloodstream which fortunately they did. About 10.30am I managed to get up, get dressed etc to face a lousy day. I was in limbo, just well enough to be grumpy about not being able to get on and do anything much all day. Managed to cook and eat an evening meal, watch 2 hours television and woke up this morning after a good night’s sleep in a peaceful environment, tent all packed up and gone, to a milder version of yesterday vertigo. Much like the rest of the day so far.

I’ve been suspicious since mid week that there was something afoot. I’d had a couple of very minor ‘almost vertigo’ey’ bits totally unheard of for me outside of acute attacks. I feel this is a mild ‘attack’ not a ‘relapse’ or ‘breakthrough’. I’ve had other migraine symptoms: runny nose, shivery, mood swings, not feeling hungry, thirsty but the trigger. Was it the vibrations from The Event. Although I was aware of them at the time the vibrations didn’t affect me neither did the noise. I’m not a headacher. Frustratingly when it comes to triggers, there’s always a bagful from which to choose. Looking back since I could have been given a cup of caffeinated coffee by mistake on Friday morning. It could be linked to tyramine - I can’t and don’t waste leftovers - or the whole shebang coupled with already decreased threshold tolerance levels from something undisclosed that must have happened earlier in the week.

Whatever caused it, it’s a bit of a temporary setback. I’ve been cruising at 85-90%, since March even had three separate week-long 100% symptom free periods. I still see an upward trend. Just a ‘Blip’ as the VRT therapist always said. Infuriating woman. It’ll take days to settle and I’m still experiencing strange almost vertigo/visual vertigo symptoms, things I’ve not experienced for months. It seems that’s just the way it goes. Helen

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Ain’t that the truth!

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Be kind to yourself. Do whatever you can to increase your thresholds. This too shall pass or morph.

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Love this saying.its very true

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Ur strong and very brave. It is just a blip. And I know you will be just fine Helen

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The WORST! Seems when I have a spin while up and at it, I can almost pull myself together to dampen its affects. However, the vertigo upon waking is absolutely terrifying and always shocking, like no matter how many times you’ve woken with it, it’s no less awful. Hope your feeling better Helen!

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Helen, I hope today was a better day …I pray this is only a small setback and you’ll be able to go back to your baseline in no time

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Strangely enough, my baseline’s there with this attack ‘underneath’, fingers crossed, so far it hasn’t left me. I’m getting the vertigo every morning on sitting up and suspect, now it’s been roused, that will happen every morning for a month maybe. It has taken longer to settle in the past than that. Annoying when on Saturday night the night of The Event I lay awake in bed for an hour trying to sleep through the noise before I realised I had taken my pills, so hopped out if bed, no trouble at all and fetched them from downstairs and I remember thinking that’s another symptom I’ve lost. I can now hop out of bed again after years of getting out of bed being a major problem since chronic MAV. Now this disturbance has knocked that to bits again. Still, that’s happened before and will mend, main trouble being the time it takes to do so. Again, for years an early morning bout of vertigo always brought with it a full-on attack which would result in 8 days confined to bed unable to stand. So far, this current bout confined me about 80 minutes. If that continues one can only class it an improvement although it’s early days as yet. I’d settle for vertical rather than horizontal any day. Helen

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Always open to suggestions though I think by now I’ve exhausted most options. It’s fine for consultants to tell people 100% is achievable just throw more n more meds at it but medication tolerance comes into the equation big time for many long before that. I’m fast reaching the stage where I think I need a diplomat with supreme negotiating skills rather than a medical consultant. Someone who can get my MAV brain and my hormones around a table and negotiate some long-term peace treaty. Helen

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