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Jan's MVBD / MAV Escapade

First Acute Balance Issues

April 2018: I noticed that I was occasionally feeling dizzy when I ate /drank something - this lasted for about 5-15 minutes before wearing off.

Start of chronic phase April 2018

About one week later I went to a ‘Power Hoop’ session which followed on from a Pilates class. All fine until later that day and then wham, the vertigo/ dizziness hit me straight after I had been out for a meal with my husband on the journey home - but this time it didn’t stop. It got worse and then then nausea started followed swiftly by vomiting and not being able to walk in a straight line - that was scary. This lasted until about midnight and I eventually got to sleep and I stayed in bed until late the next day.
After a few days of this - unable to eat - and constant vertigo plus pulsating tinnitus I headed to the Drs and saw the practice nurse who diagnosed Labyrinthitis and an ear infection - she thought my glands were swollen too. I was prescribed anti nausea tablets Prochlorperazine 3mg Buccal tablets an antibiotic and ear drop. 5 days later nothing had improved so I went back again and was given Betahistine Dihydrochloride . I was also tested for possible brain issues - follow my finger etc. Unfortunately I couldn’t tolerate the Betahistine, but it took me some time to realise that it was that making the nausea worse rather than the illness. GP consultation number 3 revealed that the two drugs together were fighting each other and I was switched to Prochlorperazine 5mg tablets. This stopped some of the nausea but I was still unbalanced and dizzy which got worse ever time I ate something. Feeling no better I went back once more to see another GP who thought I had ear crystals. Next stop a Physio who specialised in the Epley manoeuvre. He tested me and said I had no ear crystal, but I had positive romberg and he felt I needed to see a neurologist . :worried:
I was very fortunate that I found my way fairly quickly to Dr Surenthiran , Neuro-otologist , at his London practice as a private patient, who prescribed his 6Cs diet and Pizotifen.

Age at Chronic Onset 64

Started Medication
Pizotifen in June 2018 - a gradual build up to 4 x 0.5mg per day dosage will be reviewed by Dr S in September 2019

Number and type of Consultants seen todate:
Physiotherapist
Dr Surenthiran

Diagnosis Received:
Migraine Variant Balance Disorder
2 degree mild visual dominance

Medications used successfully
Pizotifen

Failed Medications
Betahistine
Prochlorperazine 5mg tablets.

Non Pharmalogical treatment tried which helped

Not applicable yet

Dietary Triggers identified
I am still on the 6 Cs diet so I am not sure about these. I suspect cheese, red wine and yoghurt might be culprits.

Any hearing loss in either ear?
Despite having tinnitus my hearing is ok - I had a hearing test at Specsavers in January which came out as normal.

Other chronic conditions
IBD - this had improved since I have been on the 6 Cs diet, so I suspect there is a strong link with food for me.

Meds taking for other conditons
Antibiotic cream for Rosacea - Metrogel

Any personal history of migraine
occasional throbbing headache - always needed to take tablets and sit/lie down with eyes closed

Any family history of migraines
My Father and eldest daughter

Any history of ear problems

Mastoid operation as a toddler
Ear infections as a child
Glue ear in my 40s
Perforated ear drum - left ear

How did friends, family and doctors react to your symptoms
Drs: You did very well to find Dr S !
Family: Very sympathetic, very concerned - very supportive - brilliant husband.
Friends surprised, sympathetic and supportive

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Thanks for all of that information about yourself. I think this helps anyone who might have been through something similar. It was indeed fortunate that you found a good neuro-otologist early on. It’s great to see that you have so much support. It really makes a difference.

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Thursday 5th September - update:

I have had a very good summer - still have tinnitus and occasional ear pressure but that I can cope with that and I think it is my new normal. I have noticed that whenever my ears are off with pressure it generally coincides with a change in the barometric pressure in my area. The MigraineX /weatherX app seems to work for me (although I know some people have had issues with it) and gives me regular warnings of the pressure changes.
Dr Surenthiran - I had an appointment with him this week and I can start to reduce my Pizotifen dosage by 0.5mg every 8 weeks so I have now dropped from 4 to 3 x 0.5mg per day. I have to stop reducing the dosage in December, as Dr S says that is when people tend to have problems - Christmas stress? - and then I can restart in January. Diet: I have to stay on the 6 C regime for anther 6-9 months as Dr S doesn’t want me reducing pills and re-introducing food at the same time. Makes sense to me, although I had fantasised about having some chocolate!
Dr S has confirmed he is moving out of Medway but is not sure where but has assured me that I would be transferred to where ever he is, which is quite reassuring. :slightly_smiling_face:

Work: I could have retired in July but have felt well enough to keep going for at least another year all being well. I have been very lucky to have got sorted so quickly I just hope that it doesn’t turn round and bite me on the proverbial!

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Jan
I am over the moon to read this…you had been so poorly but proved this isnt for life if its diagnosed and treated relatively early. Hats off to you for being the ideal patient and following Dr S instructions word for word…well done my friend and keep it up
Jo💖

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Thanks for the updae, great news. May it continue!

Hi Jo
Thank you - I just hope that I can wean off the pills without having a relapse! Plus it would be good to be able to lose a bit of weight rather than putting it on. Not sure if it is the Pizotifen or my age that has seen my weight creeping up! Jan x

Thank you - I have my fingers crossed that it does!

Oh, never blame your age. You cannot change that. Well, not for the better anyway. Blame the Pizotifen. It’s the main reason most don’t use it apparently I’ve read though in reality talking on here most of the other drugs, whatever class, do seem to have the same effect so can’t see it makes much difference.

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Sound advice as always Helen - age is an inevitable factor of life. The notes in the Pizotifen packet do say that weight gain is a common side effect because it increases appetite, but I am not eating any more than before and I’d have thought that not having red wine, chocolate or cheese etc should have helped keep my weight down. Hey ho time will tell.

Well if it’s any kind of comparison cos I am on Propranolol I haven’t eaten chocolate ever since I was twelve, have never drunk red wine or any alcohol really other than one small glass on special occasions, and none in last four years ever though I do eat regular Cheddar and I didn’t put on one oz. (never been overweight), in fact I think I lost some more on 130mg Propranolol for two years. Soon as the consultant upped the dose, BAM. And still eating the same. Helen

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I accidentally had a bit of chocolate this week - I thought I was eating a mini flapjack, turns out it was a mini caramel shortbread with chocolate on the top. It was yummy! However 2 hours later the room span for about 3 seconds - coincidence re the tiny bit of chocolate or what? Jan

Not a great believer in coincidence when it comes to such matters, me. Just the smell of chocolate does me. Helen

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Chocolate never made me spin. What it did do was make my brain ‘pain’ worse.

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That’s not good Helen - I love the smell of chocolate, but I wouldn’t be as keen on it if it got to me like it does you. James - not sure what’s worse the spins or brain pain! At least my spin didn’t last long. My father’s migraines were triggered by chocolate and red wine so perhaps I am following in his footsteps. Thanks Dad!

My sense of smell really is something else. Not just for chocolate. Totally unknown to me Hubbie raided the freezer and left a half a sultana cake out in the kitchen to unthaw this morning. As I walked through the adjacent room I subconsciously thought I can smell fruitcake. How ridiculous, after all can you describe what a mostly still frozen fruit cake would smell like, I can’t but my brain certainly could. Still I may one day be grateful to it if the house ever catches fire. I’m sure my sense of smell’s more acute since the development of MAV, sure of it. Helen

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Fruit Cake - I can smell it from here, yum!
My sense of smell has always been quite sharp and I really struggle when I am in close proximity to someone wearing strong perfume or after shave. There is a perfume that I can’t tolerate at all which seems to be very popular and I haven’t a clue what it is called - I just know if makes my ears and eyes go funny and sometimes makes me feel nauseous.

I am having trouble keeping up with mvertigo news and postings since I can’t access it via my ipad. I hope James sorts it out soon! Jan

Hi Jan,

I get that smell thing. Sitting in my favorite restaurant, not eating. I was relatively ok with the noise and motion by sitting in the back corner, not ok with the heavy cologne at the next table. I guess I’ll reheat that tasty looking lunch later, if my teenager doesn’t get to it first. But fruit cake - I love it.

Take good care of you,

Em

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You using it on the app or something. You picking it up from a bookmark or something. Just Search it. Just call it up direct instead from scratch and omit the ‘www’ bit. It should then picked it up no trouble. Helen

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Yes, remove the www. from the address and update your bookmark. If you’ve saved an icon to home screen, delete it and resave after using the new address.

Make sure when you type the address in, it doesn’t fill in the ‘www.’ . If it does, just remove it.

Open this on your iPad (eg from within an email notification) and you will see why:

https://mvertigo.org

It’s that simple :slight_smile:

Apologies for the inconvenience.

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