Supermarket syndrome ! Did anyone se... - Pernicious Anaemi...

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Supermarket syndrome ! Did anyone see the Mystery Illnesses programme last night ?

Cherylclaire profile image
CherylclaireForum Support

I watched a programme late last night presenting three cases of mystery illnesses and resolutions. For one person, who had had unexplained vertigo for her whole adult life, they showed what it felt like for her when she went into a supermarket.

It was exactly what happened to me when I first became B12 deficient !

They called it "Supermarket syndrome" - a term which makes it sound like a fairly common occurrence, although I've never heard it mentioned before.

I just Googled it - and found mention of all the things I found most difficult: supermarket aisles and continual turning of head (food on supermarket shelves, cooking at home), peripheral movements (especially traffic but also people), fast action on cinema screen, unexpected movements (ceiling-fixed clothes racks, springy floorboarding)- all throwing my balance off-kilter and giving me dizziness, nausea, confusion, tiredness. Even turning over in bed with eyes shut.

No mention that I could find relating this to B12 deficiency though, which is a shame. There must be a reason why the brain can no longer do the work and visual compensation is required ?

Anyone else recognise themselves ?

Rectifying the problem seemed to involve a lot of retraining of the brain by introducing a simulation of these situations in milder form, gradually and frequently.

Mine has either rectified itself over time, or the frequent B12 injections have done the job.

50 Replies

I didn't see this ,but my partner said that on Wednesday night gp s behind closed doors there is a case of a person with dizziness and problems with numbness I think.... will be interesting to see what the outcome is.

Yes definately since the brain injury.Thank god I’ve finally found a neuro who agrees he said it’s caused the chronic migraines that I need injections for as meds unsuitable because of medical history ,kidney stones etc,and also I have cervicogenic headaches caused by injury to my neck by double whiplash which needs ongoing physio to try and restore the brain neck balance.all those things you’ve pointed out are everyday occurrences for me too and have all been ignored by gps,it was such a relief to get someone to say yes of course it’s all happened as a result of smashing your head in during that fall.I just wept to myself when I got his copy report it’s so difficult to try and explain and not relive that moment again.I have NCS/EMG appointment now at John Radcliffe too in two weeks so I’m hoping that I get a decent feed back from that but I’m happier now things are going in the right direction.take care Cheryl and thankyou for sharing x

Sallyannl profile image
Sallyannl in reply to Diddlydot

You must be walking In my shoes !

I had these studies at John Radcliffe oxford too,

I also had car accident, car turned upside down left hanging by my seatbelt. I was knocked out .

Are you sure your not my twin

😜😜😜😜

Diddlydot profile image
Diddlydot in reply to Sallyannl

How awful for you.I hope your improving now.Mines was losing my balance on turning my head and I came down on the edge of concrete tried to get myself up then came crashing down again hence the double whiplash in neck but my head injury was awful and my eye all split open jaw all cracked and a lot of bodily injuries too,couldn’t believe the damage a fall would cause or it would take so long to recover.

I’ll be your twin if you still want me 🤣

Sallyannl profile image
Sallyannl in reply to Diddlydot

Yes we have things in common,I also note that you had kidney stones... just like my sister, who has dementia.

Since receiving b12 injection last month I have improved, not pushing myself doing what I can when I can.

My worst time is around 4.00 in the morning,

Restless legs etc., I guess this is when the body is repairing it self. Come down stairs and get coffee,

Back to my friend (my bed) and sleep for another few hours.

I will know when I go through the night without pain etc I will have recovered.

Sallyannl profile image
Sallyannl in reply to Diddlydot

Hi , an interesting article I just read,Brain injury @ b12 deficiency (hope brain website)

Perhaps that is why so many footballers have dementia.

Yes, me exactly, when I was bad.

I wonder if you can get back to them and suggest B12 and folate deficiency?

Cherylclaire profile image
CherylclaireForum Support in reply to deniseinmilden

There did not appear to be much else they could do beyond slowly retraining your brain by introducing mild and frequent "unbalancing" conditions. Can't imagine that being offered now as very slow, very expensive and highly trained staff required on a one-to-one basis.Poor woman had had the condition for many decades. B12 trial wouldn't have hurt.

Not something that many GPs would take too seriously as ClareP5 has pointed out.

Not my worst thing either, just a bit of a fortnightly ordeal. Also was quite disappointing to find it still there, fortnight after fortnight after...... especially if I'd just had a good day or two.

Sounds very familiar. I will get my daughter to watch it. Thanks.

Cherylclaire profile image
CherylclaireForum Support in reply to Nackapan

When I Googled it, I found Lifemark (Canada) came up first: Don't Let Your Eyes Deceive You with Visual Vestibular Mismatch (VVM). Talks about triggers - including vibrant clothes ! Remembered you saying that once, Nackapan, about getting your family not to wear loud colours or busy patterns.

Yes still csnt tolerate stripes and busy patterns and lights. Have given away so many clothes .

'Pattern Glare'

I had so many !!

Wide stripes not as bad now .

Strange as small babies learning to focus Need stripes and black and white patterns to learn the process!! Sone expert coujd make senses of that

I had to go into a busy environment(hospital) to get bloods done. (Tues) as deemed urgent. Coped better than last time .2 years ago

However day after ill with bad headache and vision down. One small trip!

Last time bad migraine type / event and 111 call. Starting amitriptyline!

So progress.

Still waiting to get back to where I was before .

Programme not found yet . Perhaps it was an old one re shown.

Theve not given up yet looking fir it on catch up

I looked up visual vertigo . Describes me!!!

Even has light sensitivity on it.

So thank you for that

Never heard the term.

'Shopping trolley syndrome' before

I realise j had a very very mild form of it 'well and healthy as avoided big malls and open escalators anyway.

Reading on Google.

Much rather a high street or open air market!

Also have always hated heights so cheap theatre tickets up high a no no .

Had to face a column on the ground floor instead lol.

I've said from the start to every specialist I've seen. It's my eyes /brain processing wrong.

Other symptoms too but the above is what us lingering the most .

So perhaus b12 deficiency hits and affects our underlying weaknesses or dispositions and tharx why everyone so varied with symptoms??

The most I've had given as a title us a 'vestibular disturbance ' that quite frankly didnt mean alot .

I asked the neurologist how to get better. His answer was 'no quick fix . One if those occasions I wish I was quicker as didn't really answer my question.

So I'm hoping the referral asked for by a professor I saw for his opinion on eyes(3 levels of opticians agreed eyes healthy )

who developed the colour metre for mainly dyslexic problems is right with thus referral.

I got a coloured pair if tinted glasses ti help but all were disappointed I still could not tolerate lights or read a book ect.

Was helpful to get into a food store fir a while.

So roll on neuro Opthalmologist appointment.

So hopefully the programme is found in catch up. For more understanding and treatment options.

Instinctively I booked with a pysio fir vestibular disorders right at the start to get walking again .

If anyone reading has similar problems I also gained some very useful information from pinkvision on headway. The professor and pattern glare and far more complex things i still don't really understand.

Some caused by head injury

Well so many had that as well. B12 deficiency causes falls of a kinds .

Also vision problems.

All so complex.

A better day for all I hope.

More reading

'Vestibular mismatch '

Thank you

Cherylclaire profile image
CherylclaireForum Support in reply to Nackapan

To be honest, Nackapan , there weren't any real answers or miracle cures to glean from the programme - It was just strangely comforting to see the world as I saw it being represented on TV for a minute or two. Let's hope GPs watch late-night TV with ridiculous titles.

You are right- it probably is a repeat: a lockdown filler. Still...

Yes I definitely want it found it for that reason. Recognition

Labels also help with explaining and coping with 'stuff

As one who watches little broadcast TV - can I ask what channels the 'supermarket syndrome' programme was on, what channel 'GPs behind closed doors' will be on?

Sallyannl profile image
Sallyannl in reply to fbirder

Gps behind closed doors is on tonight (not wed)8.oo channel 5

Sorry fbirder dont know the other cheryl claire would know.

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

Sorry - I was too busy shouting "That's me exactly !" at the TV.....

I have a feeling last night's episode part of a series: 3 unconnected cases per episode, also channel 5, very late .... I'm not being much help here, I know, memory appalling-

but perhaps someone could help out with a title ?

(Think next week's title is The Boy Who Can't Stay Awake. )

fbirder - let's hope for a response.

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

GPs Behind Closed Doors is on at 7pm tonight, Channel 5. Will be watching !

I think the other program you were watching was either mystery diagnosis or medical mysteries.

I watch this months ago , what channel I not sure.

Was it on sky, or normal channels?

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

Normal. I think also channel 5.

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

Yes, Medical Mysteries, channel 5: The Woman Who Couldn't Stop Vomiting. Thanks, Sallyannl .

Don't let the title put you off, fbirder - it's better than that would suggest.

fbirder profile image
fbirder in reply to Cherylclaire

Thanks all. I'll fire up My5 tomorrow and watch it while I have lunch (can't be more icky than Game of Thrones which I am trying to watch after failing before).

Nackapan profile image
Nackapan in reply to fbirder

Did you find it on my 5? Also go behind doors wasnt on ch 5 I'm told . Sone Hyksnd vet programme.

Oh I miss tv at times

Nackapan profile image
Nackapan in reply to fbirder

My husband and daughter not found if yet .Medical mysteries was on ch. 5

They usually have 3 cases . I think vertigo heading . That's what I've added them to try. Cherlyclaire saw it Monday night j think.

My husband di far can only find old ones so u imagine one of those.

I think ch.5 gp pgm.

Just seen above posts!! Woman who couldnt stopped vomiting i admit woujd normally put me off ?

Cherylclaire profile image
CherylclaireForum Support in reply to Nackapan

Still, that is the title you want !

Yes . Thanks . Must be good yo get something to make senses of what's been happening.

Also for others awareness

I shall be sitting in the hall once found to listen in. Or try again with my tinted glasses to peek. !

The frequency of the b12 also giving you that placebo effect thus the two combined has improved your situation. Amazing how things can change if we believe strong enough about anything.

Sallyannl profile image
Sallyannl in reply to Dickydon

Again this a balancing act. After 1st injection thought I was cured, resumed my activities, only to fall over, mentally was confident, but my body not cured.I was naive. thinking what's going on, I feel fine but my body wasn't responding . 12 months later I was even worse, left in bed for 6 months, gps saying it was depression, anti depressants making this even worse

(Many anti depressants deplete b12), then I was labelled as not compliant with medication. I couldn't stand up crawling everywhere. Eventually getting 6 injections some 26 months later. How many people who are first diagnosed know what B12 is ? I had no laptop etc to educate myself, and wrongly trusted my gps, who admitted to me they knew nothing about b12 deficiency.

I excepted this as an apology, eventhough I had lost my job, and then have to payout around £15,000 To get

Operation on spine, physio etc.

IF I had been treated correctly in the first place I wouldn't have such a distrust of gps, after all they are just General Practitioners and not experts in this field.

I have just received phone call from GP. After writing to them and explaining what happened years ago.

He has now reinstated my B12 Injections

😀, and has agreed to injections monthly and will review in several months time.Received one injection last month, blood test after

Shot and level only just over 1100.

A lot of hard work, but grateful to a gp that could openly discuss the situation without feeling I was disrespecting him.

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

Yes, a lot of hard work- and a way to go yet. Quite literally a balancing act sometimes.A good example of exactly what I was just explaining to Dickydon.

Nackapan profile image
Nackapan in reply to Sallyannl

At least some acknowledgement .Also good to get b1e treatment back.I've also been 'told off for not taking antidepressants and several other drugs offered .

Wad told I woukd not get better as i dint take anything.

I had to point out j took tok many painkillers.

Trued amitriptyline

Trued hrt

Had diazipam to get put of an awful head/ neck spasm.

If I'd followed the I stfuctikbs of taking ir evey dag 3 times a day I would sure be addicted by now?

Pointed out j was glad for it that night ax couldn't tolerate the pain.

She calmed and said okay I now realises you are not depressed.

Since that 'blow up ' it wad a bit better.

Shoukd not take uo so much energy getting really listened to.

Much better for you to ve able to communicate with your gp again.

Noone ljjes being treated as a 'nuisance ' or outspoken

I've cried too many times over this. I've never been rude

One Gp blocked a referral. Also tried tk block b12 treatment.

Stemming from a failed Epley manouvre he performed.

J said it haxnr worked would he repeat it.

The answer no.

Akso hadn't taken medicine. It wS to stop vomiting associated with vertigo.

J didnt vomit ??

He actually said that ENT referral will not be made as I not complying .

So I've been there oo Sallyanni it's awful when you so ill hardly standing

'To stand your ground

Interestingly this Go in the practice I've actively avoided rang me yesterday .

Call back. My gp off sick.

He was 'like a rash

Charming understanding.

Proactive.

Some of it was empathy ad ged been very ill frome z different baseline si hot it.

I coukdnt resist saying I'd nit spoken to him sine 2018 but the b12 had been a life saver!

So gkad to gear hie you've git on with your surgery now

Respect goes two ways.

I totally agree 'general practitioner '

Has to refer on if out of their expertise

Sallyannl profile image
Sallyannl in reply to Nackapan

I wrote to explain the awful treatment I got from previous surgery. The procedures I went through,including icap etc before contacting my mp. Which resulted in verbal abuse from that surgery. I was never rude, when my partner and I were told to get out of the surgery we left, then I contacted M.P. We didn't argue.

This doctor is new, very polite and understanding, he asked me what plan for b12 injections I would like.

😀We ve agreed a plan. He also said that if anybody tries to stop them refer them back to him, and would review it all in several months time when I'm better.

I am so pleased to have sent the letter and a doctor willing to work with me. One happy bunny.

The stress and anxiety of what to say do next has been lifted.

👍

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

The good ones are out there. I'm so glad you found one.Agreeing a plan together with GP is not something we hear much of on this forum.

Always promising to begin by being considered a partner in your own care !

Yes, its early days yet.

I wish you all find a common ground with a gp.

Relationships are based on trust !

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

Absolutely, Sallyannl - it can take a while to build. I remember first having to convince my GP that I did not need Amitriptylene, which was offered three times, and we had a few words, but once we'd moved on from that, she was a real gem.

She told me she wouldn't give up on me and she didn't. She did all the pushing for tests, consultants and experts. I really have had all the medical help possible, and because she has been supportive throughout, she is able to understand why I ended up self injecting. She gave me a diagnosis, quite early on, of functional B12 deficiency, and has given me exceptional primary care over years.

It isn't about finding a B12 deficiency expert (who is ?)- it's about finding someone who is willing to do all the research and pushing for you because they believe you.

This condition is difficult enough to deal with.

Nackapan profile image
Nackapan in reply to Sallyannl

Very happy to hear this

Cherylclaire profile image
CherylclaireForum Support in reply to Dickydon

NO PLACEBO EFFECT !

Just years and years of working out what can be gradually improved and how: B12/ferritin/folate/vitamin D problems all causing various symptoms and other issues such as susceptibility to infection and slow healing ability.

Then the hardest part: accepting what you are left with, and how to live with that. None of it is gone -just kept under control most of the time now.

B12 deficiency symptoms include balance and vertigo issues galore. Only B12 can fix that and only sometimes.

So probably watching this programme was more like winning £25 on the premium bonds:

no life-changing event but comforting to know you're still in the game.

A win's a win, no matter how small.

And a lovely way of putting it!Thank you for your above reply too! x

Cherylclaire profile image
CherylclaireForum Support in reply to deniseinmilden

Thanks, deniseinmilden - when you answer people, I see honesty, courage and a sense of humour. Despite everything.You have had to work so hard over the years to rescue yourself.

Makes for an awesome read.

Oh wow - I didn't expect that!Thank you for being so kind! xx

Yes i agree.

Yep - reaching for things on high shelves and turning to put them down we’re a problem pre B12 - try telling my GP about that🤣🤣🤣

Cherylclaire profile image
CherylclaireForum Support in reply to ClareP5

Bright lights, noise, peripheral movements too made it a trial. Loss of direction and memory made it a farce. Would then have the yawns all the way home in the car with the window down (obviously as a passenger), literally throw the things into the fridge and cupboards in a race against time- and finally hurl my glasses onto the coffee table and fall asleep immediately on the sofa for 2 or 3 hours.

Shopping was the hardest thing I was still doing at the time.

Yes I can relate to all this. I'd cling on to trolley for dear life, but I would walk around kicking the wheelsEnding up cutting or bruising my toes. Get to pay and would feel anxious and have hot flush .

As for the radio going no no. My partner couldn't understand how I could just sit there looking into space. Why I had to wear sunglasses in winter. The list goes on. Thank God I'm NOT MAD

What about going to the toilet ? Getting from A to B

Safely. The first thing on arrival at the supermarket

Go to the loo, after shopping go to loo again to make sure I got home again.

Cherylclaire profile image
CherylclaireForum Support in reply to Sallyannl

...and they wonder why we can't go to work !

Gambit62 profile image
Gambit62Administrator

When I was really bad the only way I could get around the supermarket was to find something to focus on that wasn't motion and gave me an anchor - it usually ended up being the continual beeping of the scanners on the tills.

Cherylclaire profile image
CherylclaireForum Support in reply to Gambit62

Nowhere to hide and recoup in a supermarket, is there ?

No

Nackapan profile image
Nackapan in reply to Gambit62

I cant look up. Ive a good memory if the map of the store. Avoiding the Busiest aikesc tins and lit up onez if shampoos the worst.Then they move everything. !!

Also at one point made one quere only in the brightest lit toiletry aile. That s the only time I've had to sit on the floor otherwise abandon shopping.

I wadnt going yo do that as taken me so long!

Yes focusing on one spot

Like ballerinas fo before lots if turns.

Spotting.

That works for me also when j walk along the pavement otherwise it start to tilt ....we yo ne it does.

Perhais blinkers would work like horses have??

Might stop the walls looking concave??

I suffered from supermarket syndrome for more than a year after I had recovered otherwise from ME. I just had to avoid them and use smaller shops instead.

Cherylclaire profile image
CherylclaireForum Support in reply to Budsa

The worst ones of all are the ones where the car-park has a time-limit system - like you need the added pressure ! To be avoided at all cost.

Has anyone managed to find it on catch up?? My 5

Medical Mysterys

The woman.

who coukdnf stiop vomiting

Or supermarket syndrome

Series?

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