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Something positive :)

As there’s not always positives with this mav rubbish I thought I would share this photo of me and Sian ( a fellow MAVer ) some of you may of seen her YouTube videos as she’s made loads about this condition. This is how we first connected. We met up for tea and after 3 years she’s now 95% some key points I should note .

She failed most meds the first 18 months I also agree with her when she said her vestibular system was so bad at that point throwing anything at her brain was just making her worse but over time a preventative then did help ! ( flunarazine )

It took her 18 months just to be able to walk further than 20 minutes without getting dizzy . Now she can walk miles :slight_smile:

She still to this day can’t be on her computer for 10 hours without getting some symtoms but nothing major or too bothersome

She drinks alcohol eats everything and drinks coffe and is fine . :wink:

She was bed ridden for months on end and now she is living a normal life :slight_smile:

She also told me I am apparently far further in recovery than she was at my stage ( I’m a year in now )

Either way I hope this brings hope and helps I know it did give me a lot of hope :slight_smile: picture below

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@Amylouise, this is just wonderful! I do not know her, it will look up some YouTube videos of hers. Such a nice post, beautiful smiles and very inspiring! Thanks for sharing!

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Yes I was getting a little lonely in the Positivity Category recently :wink::+1:t2::fist_right:t2::boom:

So pleased for her. Thanks for sharing!

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Anytime happy to jump on the band wagon :relieved::blush:

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Aw your very welcome it was lovely to meet her … this mav journey is tough but we’re stronger together :slight_smile:

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Best thing I heard is that she drinks coffee now :slight_smile:

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Great news Amy. Sian suspected she had labs/ VN so i followed her religiously on youtube as i thought i had the same. When she switched to VM i thought wtf ! Then i later got my own diagnosis which was VM as well. She did surfing recently truly a great inspiration. Is she still on flunarizine?

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Yeah i don’t think food is a trigger for her :slight_smile:

Yes Sian even told me that the labs diagnosis was ridiculous as her mum has mav too! She was off flunarazine for 8 months but she recently started back again because she is going through a hard time and she’s scared she’ll relapse :grimacing: which is understandable

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One thing she might strongly consider is making sure she minimises or eliminates caffeine and see if that does the trick. This is a far better for your health imho than taking meds. This is certainly working for me atm (switching to a high quality decaf in coffee shops that serve it is a good workaround). If I start to drink coffee again I can get an increase in symptoms and risk a full on relapse (usually takes more than one cup).

I have a friend with an anxiety disorder on 220mg(!) of Effexor and she drinks buckets and buckets of diet coke - like wth?!. I’ve been giving her a hard time about this because she’s almost certainly negating some of the benefits of the drug and might not have to take such a high dose if she were to drop caffeine (and the drug plays hell with her skin to the point where she gets bloody sores on her face).

Just because caffeine exists, doesn’t mean you have to imbibe it … and I’d rather give up coffee & black tea than stay on a prescription drug.

HMMV.

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‘As her mum has MAV too’. But who diagnosed her initially. Had they taken a full history. Was it a neurologist she saw. It’s much a question of asking the right questions. I’ve a friend who supposedly had labs 5 yrs ago and gets occasional attacks that get more and more MAV like. I’ve known her thirty years and it was only a few months ago I found out her Dad had migraine and her daughter gets them too. Surprising cos she always rings me when symptomatic because I understand. Helen

I agree with you @turnitaround but I didn’t really want to be over opinionated , but yes I would rather cut foods and caffeine than drugs ! I don’t touch caffeine or msg I have especially noticed msg as a big one for me . But hey each to there own as for Effexor and your friends skin that’s awful I def would consider adjusting my lifestyle and take less of that med !

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I agree Helen I didn’t actually ask I think they only realised her mum had it from sians diagnosis her mum worn undiagnosed for years apparently tho she did say her mum was no where near as bad . As for your friend that sounds very mav like ! It’s a hard one if you would of told me two years to cut caffeine and follow the hyh approach because I was having minor episodes of symtoms I probably wouldn’t of bothered because you never in a million years imagine anything could be as bad as when this mav goes chronic . It’s a funny one no one ever does anything untill it’s too late :grimacing:

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How true. Until it happened to me, I’d never have dreamed ‘it’ - whatever it was, I was undiagnosed at that time - could ever become 24/7 dizziness that didn’t stop. Not in a million years. Mind you if you’d told me five years ago I’d be goobling betablockers like sweets I think it woukd have made my teeth curl! No way I can convince my friend hers might be migraine. I’ve another friend with classic migraine with aura - her dad had it too - she’s not dizzy 24/7 but gets alot of one day long attacks but was offered preventative by GP but read the side effects list and wouldn’t try even one pill! You just cannot help some people, Helen

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I so agree ! It’s so hard ! So much of my childhood makes sense with this diagnosis altho for Sian she’s never ever had any dizzy stuff till her first massive attack . I didn’t even think anything could be so long lasting or so debilitating part of me still can’t grasp how this condition exists and yet no one has heard of it . I don’t believe it’s that rare I feel so many are misdiagnosed . I met a girl through my YouTube videos and she has had chronic mav for 10 months only diagnosed through showing the doctor my video yet her brother had “ labs “ for a year and a half all the same symptoms and he still doesn’t believe he ever had mav that’s just crazy and it angers me that more isn’t done to raise awareness but what can you do.

As for meds I’ve never been drunk done any drugs and this year I’ve tried 6 different strong drugs never would I of ever thought that a few years ago :woman_facepalming:t2::face_with_raised_eyebrow:

A x

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