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OnandOn03's MAV STORY


#1

First acute balance issues :

Number & duration of acute phase(s) : Initial attack like BPPV, lasted a couple of minutes. Then self-contained episodic vertigo attacks of usually 72 hour duration, then a decade later became chronic 24/7 and vertigo attacks lasting 8 days. Episodic attacks were maybe 4 in 2 years. Once went 15 months between. Longer attacks gradually more frequent until they peaked at 4 or 5 in period of 7/8 weeks.

Any suspicious physical event/trauma leading up to dizziness : hit menopause

Start of chronic phase : December 2014

Age at chronic onset : Pass. Menopausal

Started medication : December 2015

Stopped medication : ongoing, dosage upped April 2017

Number & type of consultants seen to date:. Ophthalmogists and Eye Surgeons (3); three ENT consultants, one neuro-otologist (2015) one migraine specialist neurologist (2017)

Diagnoses received (one I’m “running with” first): “Probable Migraine Associated Vertigo” x 2! Twelve yrs before GP diagnosed BPPV,

Medications used successfully for MAV: Propranolol quick release, not LA

Failed medications for MAV: Bisprolol fumerate, 1st betablocker only lasted 3 days. Gave severe indigestion

Non-pharmalogical treatment tried which helped :

Non-pharmalogical treatment tried which didn’t seem to help : Vision training, Vestibular Retraining therapy, Alexander Technique

Dietary triggers identified : Chocolate and Oranges (aged 12): Red wine (as young adult): Blue cheeses (during episodic phase) and (since chronic) anything salty, ham/bacon, fermented things like pickles, MSG

Any hearing loss in either ear : None

Persistent or intermittent tinnitus and character : Persistant tissing. Controlled by meds 2018. Occasionally occurs briefly

Other chronic conditions I’m suffering from : None

Medication I’m taking for other conditions : None

Any personal history of migraines : ‘sick’ headaches and motion sickness until 12/13 years old.

Any family history of migraines : None

Any history of ear problems : None

How did friends, family, and doctors react to your symptoms?: Except those few that have suffered migraine/vertigo themselves, the rest dropped contact and ran!

I’ve extracted a few posts which should give some idea of the Ups and Downs of My MAV journey and explain how OnandOn became on and on. Firstly would like to say that I have retrospectively discovered that my MAV fits quite a common pattern for some women. Starting in childhood with motion sickness, ‘sick’ headaches and possible abdominal migraine which ceased at menarche only to return as dizziness, ie full on MAV, at menopause. Each change seeming to coincide with fluctuating hormones.

My condition went unrecognised and undiagnosed and therefore unmedicated for 12 years until I became my own advocate and went in search of answers once it ceased being contained episodes, and took over our lives. At that point I was experiencing 8 day long vertigo attacks that kept me in bed in the dark and from which it took months to recover. Soon after that the attacks increased in frequency, and the symptoms ceased to withdraw between attacks and I was dizzy 24/7 virtually one year before I obtained a ‘probable’ MAV’ diagnosis.

The MAV symptoms I found more disturbing/disruptive were the 24/7 dizziness, the severe photophobia which was also 24/7 for nearly two years, the visual vertigo (two Olympic Games running and I still couldn’t properly enjoy TV) and the balance issues, the inability to sit on any chair which didn’t have high back and head support and the lose of dynamic balance every time you bent forward and came back up. A physiotherapist once said ‘You really need to stand upright’ to which I replied ‘Would love to, if only I knew where ‘upright’ was!’.

Now, to the ‘archive’ stuff

In answer to a question of ‘When did my MAV start’ I wrote:

Fifteen years that I know of. Started with BPPV like symptoms, only lasted a couple of minutes in Nov. 2003 which, many yrs further on, I realised was within months of what turned out to be my last ever period. Continued, for a decade, quickly developing into attacks that lasted up to 72 hrs with constant rotary vertigo, the room spinning every time I opened my eyes, no headache but otherwise much like a migraine, including upset stomach etc, etc. These attacks appeared out of the blue, always on waking first thing then they would disappear and I would be back to normal then the next time. Attacks maybe once every 9 months, sent 15 months without one once, then after about a decade started getting intermittent balance issues. When the car stopped, I’d feel as if I was still travelling forwards and so on. Then the attacks increased in severity and duration until they might keep me in bed for a week, unable to stand without assistance. GPs still insisted it was BPPV and suggested nothing even though once I was nearly hospitalised dud to the vomiting. then in December 2014 after a meal in a restaurant (which by this time I thought of as a trigger even though I had no idea it was migraine) with my Tai Chi group, 36 hrs later, I became 24/7 dizzy. GP had no clue (anxiety) I then embarked on VRT vigorously for 6 months - ENT suggested it - then I collapsed completely, back to bed, no balance and full on attacks about 5 in 3 weeks, it was hard to tell beginning/end then LOADS of RESEARCH on the computer and in October 2015 saw a neuro-otologist who diagnosed MAV. It was only his questioning me about childhood illnesses that I even remembered I’d had ‘sick headaches’ that would only respond to aspirin, motion sickness etc, etc. He suggested migraine preventatives and GP started me on betablocker. First one she gave me cause the worse heartburn I ever knew could exist. Didn’t go to bed (GERD) for 48 hrs. Then propranolol.

To keep it short I cut out all the blind alleys and there were plenty.

Been on Propranolol 2 yrs now. Will cut long story about inadequencies of GPs knowledge. Suffice to say you need to be on maximum tolerated dose to achieve maximum assistance for a good period of time experience now tells me. I’m on enough to slay an elephant. In Feb 2016 I saw a second neurologist, a migraine specialist and she put me there.

It doing alot. I’m at about 85% most of the time, maybe more. It’s cut intensity of attacks by 70% and frequency probably back to the 9 monthly, but really bit early to tell. It’s virtually stopped the 24/7 dizzies, visual vertigo, nausea feeling, reduced photophobia considerably. Consultant said if I think it’s not doing enough, to add in up to 30mg of Amitriptyline. I have them to hand but reluctant to take them. I’m very med sensitive particularly to anything that sedates. Two diazapham many yrs ago and I didn’t open my eyes, was fast asleep for 10 hrs! Helen

When requested fuller details for possible inclusion in a film:

November 2003. Had short vertigo attack late evening watching TV. TV appeared to crawl up the wall. Visited GP who said it was BPPV, no treatment only Epley which would be one off, ‘it works or doesn’t’. My very experienced near retirement GP didn’t know how to do it so a few days later saw a colleague of his who did it, with an instruction sheet in his other hand. I drove myself to clinic and drove on straight to work after. No effects either way but I wasn’t any longer dizzy at the time. The attack had only lasted 2 minutes maybe. Given Buccastem to take if it recurred.

Some months later started having strange attacks if dizziness. Would just wake up with room spinning vertigo. Unable to open my eyes and/or stand unsupported by strong husband’s arms. These attacks would last 24-72 hours each time and occur once every six months maybe. This went on for ten years about. Totally contained acute attacks, no symptoms between. Come suddenly and stop the same. I would be constantly violently sick, unable to open my eyes, move my head, could sip water only through a straw. GP told me BPPV, No cure, sit it out. Literally he told me never go to bed til it stopped. Sit up on a chair throughout. I did that. For yrs until the attacks got so much worse and another doctor told me ‘Bed”.

After about 10 years, I started getting breakthrough balance issues between attacks. The car would stop but I’d feel I was still going forwards etc. New GP said ‘balance problem, nothing we can do a about that’. Eventually I got to see balance physio, two ENT consultants - no good, no problem, go away! The attacks became more and more like migraine, light sensitivity, ear pressure etc, etc. but NO headache. Said friend who had traditional migraine. Only trigger I thought was some of attacks started 2 days after eating out in restaurant. In December 2014 I eat out again, and another attack started and never left. 24/7 dizzy, light sensitivity here on in. I researched the net, found neuro-otologist, had MRI and given ‘probable MAV’ diagnosis, take preventatives. He left management to my new, yet another GP who doesn’t recognised MAV , and has no clue. After 18 months on too low dose betablocker, I saw another migraine specialist neuro who upped the dose, then I started to recover . .

All comes down to medics total ignorance of condition really. The key for the diagnosis was a full medical history taken by neuro-oto. I now see a pattern of MAV for me which started with sick headaches and motion sickness as a child, hormones related, my first attack started within months of me hitting menopause.
The real impact only hit me once MAV went 24/7. It just ruined our entire life as we knew it. It still does totally control our (hubbie and I) even today

Helen

Part II of the above

I’m not the emotional type and not the ‘freak out’ sort either.

I coped with episodic attacks because they cleared between and life went on as if they’d never happened. Didn’t expect them to ever stop and certainly never dreamt it was migraine or it could change into continuous state. That’s when it really got bad.

In 2003 I was working, in good well paid senior management position with responsibility for other staff etc. I had to reduce my computer time with Occupational Health involvement which made things difficult as I couldn’t fill in when short staffed etc. In 2008 the office I ran closed, and I ended up leaving because I felt unable to commit to much extended commuting to the office I would have been directed to had I been well (although I was clear between attacks, I wasn’t comfortable driving 70+ miles daily, to closing office was 15 round trip and I could have bused it).

I couldn’t have worked 24/7 dizzy but fortunately had retired before that happened. MAV just stops normal life. Four years without going in a restaurant hen e miss family gatherings, funerals etc too. Didn’t get to see newest family baby niece because it was July and too sunny to risk going out. Hobbies included sports event photography (and working to raise funds for charity through this, added interest) and birdwatching. Both impossible with balance issues. Holidays, car travel, all gone. Friends fade away ‘come and visit us, when you are better’ people say! All the usual isolation etc apart from the actual illness. Weeks in bed unable to stand up, keeping indoors with closed curtains because of daylight, lack of exercise causing other health problems, physical, emotional. Near agoraphobia, depression, anxiety.

Doctors certainly need more insight into Invisible Illness. All these troubles for something unrecognised and not even terminal.

I’ve often said I’ve a friend who had heart attack, an operation and made a full recovery during one third of the time period I’ve suffered MAV, and I’m still suffering. Helen.

Various ‘Ups and Downs’ of MAV: more ‘Downs’ than ‘Ups’ generally because that’s how it tends to go with MAV:

3rd September 2018

OMG it’s got me again. Last night had a faggott for my evening meal. Butchers obviously changed his recipe, it was noticeably salty so only ate half of the portion, didn’t have handy suitable alternative. Drank lots of water all eve. OK when up at 3.00am for bathroom but woke up 7.30am feeling like a hamster with full throat pouches and a good dose of mumps just neck up. Back of head felt tight enough to burst, then temples likewise. Tinnitus in right ear and both felt totally full. Dog barking in garden sounded miles away but speech sounds normal. Neck felt like it’s done a day’s holding her head up and would like to go to sleep now please. Hasn’t affected balance or brought dizzies back yet. I could feel the Propranolol take control and it’s reduced now to about 25% of what it was. Even managed to change security software prog on my PC I think since. Nearly put it out as a new topic but couldn’t muster … back of head (cerebellum and lower) still very tight, must surely all be constricted blood vessels, eh?

Well I do do 6C’s and avoid known triggers. Realised salt or other chemicals in ham/bacon trigger now - never used to but this is first apparently very direct obvious straight link. Wonder am I more sensitive since preventatives or just didn’t I notice it before, bearing in mind I don’t think I truly ever get the headaches, just vertigo attacks all along. Couple of weeks back chilli 2 nights running (bad housekeeping I know) did it for me.

Very interesting as restaurants were for many years my only trigger apart from red wine and chocolate which I avoided religiously all my adult life and I wondered ’lights’ or ‘food’. Bit of both? Now wonder as first attacks were always a couple of days post restaurant … food? … later attacks few were instant … lights? And also in other public buildings so other triggers obviously… fascinating but wouldn’t it be good to get answers. Here we go again. Helen

5th October 2018: day after a trip to the shops:

Well, makes one wonder if its ‘catching’ cos I’ve got it today myself, really badly. No I think it’s more likely to be because I spent 40 minutes yesterday in a Sports Direct shop trying on what seemed like every womens’ trainer in the place. Thought I’d got away with it, walked out feeling fine but I do tend to get delayed reactions to things, which is cruel because you don’t know you’ve pushed it too far until you fall over when there’s no immediate/quick reaction to stimulus. I just woke up this morning with it, and my balance is rubbish, knocked for six. I feel like one if those little plastic toys that roll around in the bottom of budgie’s cage when I walk around, and my balance has been steady for almost six months now. And I’ve the ‘not quite flu shivers’. A sign I pushed it too far. Forty minutes of artificial store lighting. Helen

October 11th, 2018 - success at the dentist!

Oh, yes, be positive. That’s the spirit! There’s always hope. After all, look at me. Fifteen years in come early November, and three years end of this month since I eventually got a ‘probable’ diagnosis of MAV, and yesterday I went to the dentist without needing two pairs of dark glasses and his horridly strong light had no affect at all! Then today I’ve been around three different shops/small supermarkets all, without dark glasses and came out NOT DIZZY! Before the meds 5 minutes in store, so dizzy I could barely stand and ended up days in bed, and months of living indoors like a mole/vampire in the dark behind closed curtains.

That enough positivity for you? (With fingers crossed behind my back for tomorrow!). Helen

Another October 2018 post

I’ve just had two brilliant days, virtually 100%, yesterday and day before, even first thing. Walked out yesterday and felt almost ‘normal’. Why was I carrying this walking stick? Got up this am, same again, fine, balance excellent, ears/head clear, then, mid-morning, for no apparent reason, BAM, full ears, head tight, nose ‘drips’, balance went crap, all in a matter of minutes! How weird!

Another September 2018 post:

More EARS!

Yesterday am I felt fine… good 85% maybe. Remember thinking how clear my head and ears were. Fully intended going walkies (40 mph winds scuppered that idea. I can do quite strong now but that’s too much). Lunchtime I ate Brie and horseradish sauce (new jar opened especially) sandwich. Do have horseradish with beef but no BRIE not for years. Really enjoyed it but within 40 minutes about my ear pressure flooded in and dizzy from totally steady. (Lasted the rest of day and got worse) Have never known this to happen before. I avoid known food triggers but never that instant anyway. I used to wonder about tyramine cos attacks regularly followed restaurant meals, usually 36hrs later but subsequently put idea to one side.

Now even wondering if this reaction cd be because the Propranolol is in control and giving me in some ways an ‘artificial’ restored sense of balance?

Could tyramine have influence. Cumulatively? Looking back day before I had pickled onion and few dried prunes then the preserved horseradish, or maybe the Brie though I eat Cheddar cheese virtually everyday and that’s supposedly got more tyramine content.

It would be so much easier if one cd get to bottom of these things. Helen

Success story from 25th September 2018

I’ve just had two brilliant days, virtually 100%, yesterday and day before, even first thing. Walked out yesterday and felt almost ‘normal’. Why was I carrying this walking stick? Got up this am, same again, fine, balance excellent, ears/head clear, then, mid-morning, for no apparent reason, BAM, full ears, head tight, nose ‘drips’, balance went crap, all in a matter of minutes! How weird!

Since last Weds I’ve tightened up my diet. Even no Oxo gravy! I can certainly see connection between salted caramel and MAV, but cannot really imagine I’d need allergy to anything in addition to hormones to have given my MAV in first place however …

Know it’s up and down but it seems, now with me, to cut in, suddenly. In an instant which somehow makes me think food for some reason.

Another late September 2018 post

Interesting. Today I’m exact opposite. Dizzy as a duck! After three full and perfect, no symptoms days. Yesterday out in bright sunshine, walking and sitting on backless bench, chatting with friends just happened to meet, turning head left and right. All perfectly fine. Got up without a wobble and walked off.

Not sure. How can u be? Could be something in yesterday’s dinner. MSG? Having trouble with finding things we can both eat. Need stock cubes without MSG. Suspect that may be a trigger. Ten days in struggling to find what I can eat. This diet’s knocked so much of my usual foods out.

Caffeine free. Tried once and failed. Too tired. Drink tea, not coffee. Hasn’t lack ofit made you tired. Friend with kennels physically demanding business tried to quit yrs back, 24 hrs in she fell asleep at breakfast table! Would be good to be able to maybe but makes one very tired, no caffeine, difficult cos that’s main betablocker side effect too.

October 2018, the Cold Season begins:

Cant decide Flu or cold? Usually obvious. Started Saturday . Balance was fine until mid morning today, now I rock on the way to the bathroom, and worse on the way back. Got raw throat, and a pain in my right hip joint? Odd? Eyes so bloodshot and blurry, text is difficult to read. Tears keep flowing down my cheeks, and cant stop coughing! Slept 2? Hrs last night. Shivering like a jelly. No temperature though, the internet’s brilliant. The experts cannot tell it apart either it seems! Main concern affect on balance. I was so good, improving almost daily in tiny ways.

Interesting though, the way subconsciously ‘we’ avoid certain positions/actions. Noticed middle of night got up to find extra pillows and sort myself out and noticed I performed couple movements usually subconsciously avoid. Running on autopilot, to get this done and back in bed. Good case that for not leaving people to ‘get worse’ as happened to me for so long,

Interesting too until about an hour ago no ears or head pressure at all so dizziness from the cold? Going bit muffled hearing now, first for weeks. Helen

Cold progresses:

fed up with this cold, thought I’d beaten it. Didn’t think it would get my balance. It’s Day Seven now and its got worse yesterday and even worse today. Now it’s worse than it been since it stopped 24/7 in Spring. Interestingly not only worse but different. Because its coming from the cold maybe? Last few days could do tai chi but not today at all. I call it a ‘weak knee’ cold, every time I go upstairs, knees dreadfully weak. No, not tired but it takes each differently no doubt. Up all day yesterday despite and climbed into bed 11.15pm, and slept well. At least so far it has had the grace not to keep us awake at night. Cough alot by day but, so far, nights good.

Learning to Live With It, I guess!

Wednesday 24th October 2018

because I had my hair done yesterday. Got lovely civilised MAV-friendly system going, up to half a dozen of females I know which conveniently includes a mobile hairdresser meet up at one house about once a month for a ‘Herbal Tea Morning’ rather than Coffee and all chat whilst getting our hair done as happened yesterday. Courtesy of my ‘labs’ friend who reacts in hairdressers every time too. This is called Living with MAV, I guess. Helen

Thursday 25th October 2018. An Autumn colour country walk

A long country walk up a rough grassy uneven (tractor wheels) track, a long but gentle climb up into some woods from where we can look out over much open countryside with trees in full Autumn colour. Most leaves still in place. A calm still bright but sunless day. Just the three of us, my SO, me and our large dog. Although still using a walking stick I found the going easy. Must be the easiest walk I’ve done since chronic MAV. Even managed to throw the dog’s toy a respectable way today, something difficult to do with balance issues. Lovely view from the top, then back we went. A super walk, nice and dry underfoot for balance confidence. I wore a hat but no wraparound sunglasses and not a bit dizzy/disorientated over rough sloping ground. I will probably suffer a bit tomorrow for this but I couldn’t have done it at all two years ago. I remember entering the consultant’s office on a dark wet Winter’s day wearing two pairs of dark glasses. How things have improved I thoight as we walked back to our car. All with the unwavering support of my SO, and the dog, Oh! And the drugs! Helen

Saturday 28th October 2018

I was calming sitting at table enjoying my home-made Chinese meal this evening when I looked in the direction of the TV at an old black and white film my SO was absorbed in between mouthfuls, and I reached the conclusion my eyesight seemed to have gone a bit blurry which is unusual but then I found I could see a reflection - of my own eyelashes maybe - out of the corner of my right eye. Seemed rather odd but, as the meal progressed so did this visual illusion. It became coloured, moving, sort of shimmering and it got a bit bigger but only in my right eye. I didn’t lose vision, I could see quite clearly all around apart from this small shimmering portion at about 1 o’clock high up in my right eye. This experience lasted about 20 minutes, then cleared quicker than it had arrived. Discussed it with my SO who says he’s experienced similar but in both eyes for more than a decade and an optician told him not to bother about it unless it got really often. He doesn’t get migraine.

Initially I assumed it to be migraine aura. As I don’t experience regular migraine headaches, just vertigo attacks, I think I may have had two or three auras all in the last two/three years, during acute attacks only, never before but if they were aura, they were very different from today’s experience, just large patches of deep pretty colours float from afar up close and then receding again and these only last a couple of minutes each time,

I haven’t been feeling great today, balance rather ‘off’ so sure it’s migraine related some way. Conflicting info on the internet about the difference between ocular and retinal migraine but I did read they can be caused by dehydration or caffeine withdrawal, and a lot of other things too. I’ve recently cut my caffeine to 1/3 or less and doubt today at least I haven’t been making up much of the difference in water, Cold water on a cold day isn’t something that appeals I’m afraid. A thread ‘Caffeine restriction and migraine diets’ records more detail. Helen


#2

Thursday 15th November

Things were going really well. I was a good 85%. Within the last week or so I’ve been for the Flu Jab, been supermarket shopping twice, and been to the dentist for a filling (no injection). Right at the top back, too near to ear to risk numbness - all just fine. Felt bit ‘odd’ - woozy during day for next two days after dentist. Now these last three days an increasingly woozy head, really swimmy today. I guess I’ve been doing more and also tending to ignore my own self imposed rules bending forwards to change shoes instead of sitting down, using the indoor clothes line (steep head bend there) but as my MAV regularly in delayed reaction MAV, no immediate, adverse reaction and I just carry on. Underneath balance steady, not dizzy, and noticing little improvements all the time. My delayed reaction MAV virtually always kicks in first thing next day and I woke up this morning knowing my head wasn’t right, got out of bed to go to the bathroom and my brain had alot of difficulty convincing my body that I really am a biped and need to stand on two legs. Having had clear ears, no rear head pressure and no tinnitus for days I have a tissing right ear and that distorted muffled hearing where you can hear people talking and radio/TV fine but everything else sounds distant and muffled and I have some rear head pressure. As long as my ears are playing up, my balance cannot be good. I’ve known that a good while now. I think, for once, I’ve realised what’s caused this flare up on this occasion. Yesterday I carried the microwave (heavy) across the room to clean behind it and I felt my ears react with pressure. What an idiot I am. After the initial ear pressure I was fine, went for a long brisk walk, came home, cooked a full roast and cleared. Watched TV and went on to bed eventually, then this morning, BAM. Balance knocked for six.


#3

Flu shot took 2 days and then knocked me out for a week. Vigs (@GetBetter) had a similar reaction.


#4

It’s so hard sometimes to pinpoint triggers. I’d heard people were reacting to flu jabs around but I’ve never done so before and that would involve a 10 day delay between the two events. Possible I’m sure cos the vaccine actually takes 14 days to kick in. I hadn’t thought of that one. Yesterday was my worst day for six months, and symptoms did seem bit different from usual somehow. Fingers crossed it’s on the wane, it’s much improved today. Interesting point though.


#5

Well, it’s turned four years since my MAV turned chronic, 24/7 dizziness etc following a Christmas. Celebration Meal with the Tai Chi group I’d joined to help improve my balance. The irony of this was lost to me for quite a while but I have to laugh at it now. It was then a year before I started Propranolol and I took 130mg for another year which did a bit but not much before seeing a second consultant in February 2017 who upped the dose. Then things started to improve although at a snail’s pace. Eventually, even the 24/7 dizziness started intermittently to stop.

The MAV is still very much up and down but underneath the baseline has become more consistent. This past week has been the best week I’ve had ever since chronic MAV set in. Amazing really because I collected new prescription glasses a week ago. This week I’ve had a couple virtually 100% days, even more amazingly this lasted, even outdoors. Despite balance feeling unsteady the day I collected the glasses I had no visual symptoms in town walking in the traffic. The previous week I did shopping in Morrisons for first time in four years. Completely naturally, without dark glasses. Unfortunately I had tight rear head pressure all the following day but still functioned. Another day I pegged the washing in, another task that’s been impossible for years although I still cannot guarantee to be able to do it every day. Recently I have restricted caffeine and started trying the John Hopkins Diet, and can see connections. It’s very hard to list the improvements comprehensively. I never made a list of all my symptoms/difficulties in the first instance and one advantage of being better is one forgets them sometimes once they stop. Also, I don’t intend to tempt fate. Never say ‘Never’ is something I learnt long ago. Suffice it to say it now seems an upgoing projectory, more normal life is slowly returning and I have high hopes MAV will slowly fade away more or less.

Such progress as recorded may seem small, petty even but I was really ill with MAV, and had a long way from which to come back. Tiny steps forwards seems all one can reasonably expect. Each one is a small triumph. Only yesterday I had visitors all morning, turning my head left and right, concentrating on faces, incessant chatter, and PM I went out to a friend’s house on a visit and repeated the procedure in a backlit situation until it was almost dusk, and all when I had head pressure and poor balance which I took with me. All of this would have been totally impossible, even this time last year. Small steps are all I expect but they do really please me because they mean progress. Helen


#6

Excellent. Hope it continues. I am going to look at the John Hopkins Diet.Thanks R.


#7

awesome my dear Helen! I hope it only keeps getting better!


#8

So happy to hear that Helen, little things like pegging the washing out for us is very difficult indeed. I hope your still feeling well :grin: long may it continue!!! :kissing_heart:


#9

Time is certainly a factor in recovery although I’m sure there are often several others, one’s age and overall fitness, and the length of time one has had the condition etc must all play a part. I’m four years in with chronic MAV and I’ve been on a higher dose of preventative for 20 months, reduced caffeine and following the John Hopkins Diet a couple of months. I’m at about 80/85% mostly. Occasionally I get a few 100% days, had three in a row only last week, ‘crystal clear’, no symptoms, normal balance and I forget all about MAV a while, then some trigger or another will set it off again. These days it does seem to get back to baseline afterwards quicker than it used to til the next time. As My SO observed the highs are higher and the lows not so low which hopefully keeps me more evenly functional. Helen


#10

Hi Helen, so happy to hear that you have days that are 100% sometimes! Wow cant remember those anymore!! I have taken some advice and done some research on the diet you follow I am going to give it a whirl, thing is I just dont know what to eat! Haha will take some planning im sure! Everything seems to be going ok with the Ami… too early to say if it will be of any help. I was also thinking like @LucyLabrador about going to see Dr Surenthiran in London, Ive started Magnesium 500mg and the diet will start when my shopping arrives on Monday. :thinking:

Your story gives me some hope that one day I will be 100% again even if its just for a few days in the week! :see_no_evil:


#11

2019 started well for me. First two weeks more than half the days were symptom free, 100% and on Thursday 10th January I experienced my Best Day Ever since MAV went chronic, 100% perfect, no symptoms even outside and Ii even rode in the back seat of our car, unheard of for me.

On the Saturday I had some spinning vertigo but it passed. On the Sunday I had a tiny bit of light sensitivity in a certain spot in my kitchen and in the evening a bit of visual vertigo (long gone symptoms) watching television, then, on Monday I woke up to full on vertigo attack. My first for over three years and since being on meds. (Ref ‘Caffeine withdrawal and vertigo’). I spent nearly six days in bed unable to stand, got up on the sixth day feeling like I’d just spent a week in bed. Quite natural but then, and it seems bit like a dream now, woke up on the next day, a Sunday, totally recovered. 100%, no symptoms at all all day… How I’d bounced back, Incredible but short lived. Next day second full on attack started. Two more days in bed just like the previous week. Day Three onwards I’ve been up and pottering but the recovery process seems to have reverted to years back

Recovery. It’ll probably take a month, and a short car trip or a visit to local shops would probably cause another bout. I’m back to BPPV-like vertigo when I sit up first thing, needing to relearn balance everyday when I get out of bed, severe backache (owing to posture) after a while when preparing meals, near visual vertigo watching television where my brain doesn’t appreciate the extra visual stimulation. The attacks under meds are only about 30% as severe as they were pre-meds and ‘underneath’ my balance, once it returns is steady, I’m not dizzy, I have to be very careful about bending forwards, My baseline is higher than pre-meds but the quick complete recovery was obviously only a one off. Those couple of perfect days where it seemed as if MAV had never existed were amazing but I cannot imagine what mechanism can have generated them. MAV is a Big Beast to crack. Helen


#12

Helen that is really horrible. It is really soul destroying when you think it is improving and then it rears its ugly head. I do sympathise as the spinning is the most terrifying feeling. I thought I felt slightly better today and then as I was making a drink the horrible sensation starts again. I am sure there is abnormal fluid in my ears. Do you think because you don’t get the headaches you get the vertigo worse? To be in bed for 6 days with the vertigo is horrendous. It doesn’t seem right to me. Hope you feel better soon. R.


#13

How horrid for you. It is soul destroying when it hits again and you can’t help but feel things are going backwards despite all your best efforts and when you have been “good” (no caffeine, socialising etc). I hope things continue to get better for you. It’s crap.

I’ve had a bot of a week or so from hell again and haven’t posted as I felt I’d bring everyone down but I just hold onto the hope that the general trend is in an upward direction (I think).


#14

I’ve never known how bad/little vertigo others experience so I’ve no idea if mine’s worse than anybody else. I’ve never thought about it really. I was really quite pleased that these two very recent attacks were so much less severe than the pre-meds attacks. Although I couldn’t stand, I could keep my eyes open, even use the Ipad quite alot, indeed only had about 30% of previous symptoms. When I had episodic MAV my attacks regularly lasted 72 hours during which I was unable to open my eyes due to the vertigo and I several times had to have injections to stop constant vomiting for fear of dehydration then later attacks lasted consistently eight days in length, and eventually back to back eight day attacks with maybe (no written records) five attacks in less than seven/eight weeks. I’ve heard of people in bed for many months straight off with MAV so I guess there is no ‘norm’. Anything goes, Helen


#15

Agreed. I was certainly on an upward trend, and On meds with these recent attacks have been in much better place than I was formerly. I too wasn’t going to ‘mention’ it but I was persuaded by ANO, and when you reflect on it, not to do so could be misleading to others following your progress from afar I suppose. Helen


#16

Hi Helen @Onandon03 I am so sorry you’ve been having a tough time of it! It is enough to bring anyone to the brink of depression! I have my fingers crossed things pick up for you very soon! What are your current symptoms today? Anything other than the terrible vertigo? I too am having a bad few days again… mostly with pressure, migraine, wierd vision, dizziness waking me up! to be honest I dont think im in any fit state to go back working in the gym! I feel a little down as I cant see much progress yet. We just really need a break eh?! X


#17

Symptoms still much as noted above. Very careful avoiding bending and head movemennt left to right and vice versa. Tiny bit head pressure this pm, first for days and bit of backache. It gets boring once you know it’s going to drag on getting back to baseline but I think I’m probably better than you sound today. Don’t despair. Once you are bit more medicated you should see progress. I’m sure I’d have been very much worse without the Propranolol all the way through. Helen


#18

Hi. Thanks for replying. I had no idea it could last that long? Are you sure it is not menieres? It sounds absolutely terrible having vertigo for that length of time. I have had it last several hours and feel dreadful and dizzy most of the time, but the spinning is the worst. Hope you feel better soon. R.


#19

Helen, I agree I think maybe without the botox my previous relapse might have been worse! Its just bloody crap! Im glad your a little better than previously, I suppose like you have had this for so long I keep thinking… how is this ever going to get better?! I know I need to avoid those thoughts but it does still pop into my head. It is the uncertainty I suppose. Like you out of the blue relapses after such good days really knocks me but we know tomorrow could be 100%. Crazy this MAV malarkey!


#20

Hi Helen,

Thanks for taking the time to write your whole MAV history. You were doing so well. I know it must be so discouraging when you can figure out what triggers caused this recent attack. I know when I feel the dizziness coming on and get the vertigo spinning attack I can’t move my head up, down, or turn to the sides either. It helps me if I wear the soft cervical collar when I am sitting to keep my head and neck perfectly still so I can recover faster. Hoping that you will recover faster this time since you did go a long time between your last vertigo attack and this one. Take Care.