Please review symptom list in wiki: (was: can we do a SYMPTOM SURVEY?)

Constant nausea
Nausea and vomiting with movement
Vertigo and nausea whilst performing repetitive tasks, ie stirring a saucepan, chopping vegetables, cleaning etc
Alice in Wonderland syndrome
Loss of perception of distance, height and depth making navigating curbs very tricky

Those were my constant companions on top of all of your suggestions!

Well done Emily. Let’s give the poor guy a break. He needs a break. I’d willingly assist too. With any admin I cd. My computer skills bit out of date but cd be fixed I guess…

A point in itself maybe.

Hehe, thanks guys.

It’s not a huge effort once we have a refined list (it’s a Wiki you have access to edit (Edit button bottom right of post), fill your boots with refining it :slight_smile: ).

Most of the effort will be in refining the list so its nice and readable, doesn’t duplicate anywhere and not easily misunderstood (e.g. no symptoms that can be misinterpreted) so that it’s ready for the poll.

The Big Med poll took me hours and hours to write because getting the choices right is soooo important. (and even then we eventually missed a med (Prednisone) :frowning: )

My main concern is performance, but on balance happy to ‘have a go’, we could always delete the post (and I may be able to delete the entries in the back end).

But until the list is ready for prime time …

Cheers,

James

That cd be a difficult one. Noticed that recently trying to get to grips with somebody’s symptoms. I think their ‘numb’ ‘inability to feel’ - which I equated to the dentist’s numbing - was what I would always refer to as ‘tight’, ‘full’. Certainly cd be difficult one. Are they ‘symptoms’ or sometimes ‘sensations’ one wonders and we all feel so differently depending on past experience I suppose.

Yeah, maybe that’s too restrictive … symptoms are ‘what you experience’ so maybe it’s ok to just confirm ‘this was what it was like for me’ … if not … no issue?

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OK I’ve done a tidy up and deleted a load of dupes. Take a look.

Just my two cents, but there are so many different reasons why each one of us has the symptoms we do, I don’t think a poll would really help anyone. It would take up James’ time, but for no real benefit of the users. I think a comprehensive list of possible symptoms should be sufficient for people to decide it “could” be MAV and go to a doctor armed with that information. I love that everyone here is willing to share their stories. Some I relate to, and others I do not, but I definitely have compassion for everyone here. It’s life altering in one way or another. No matter what it’s actually called (or diagnosed as), we’re here to support each other. I say leave the survey for the doctor’s office and let’s just give support and honest feedback from our own personal experiences.

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This is a great idea :slight_smile: only symptom not mentioned and is by far my worst is the spaced out dream like feeling :grimacing:

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Disassociation, or Alice in Wonderland syndrome? Focal Brain Dysfunction.

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As a newby to this I love the idea of a symptom survey but looking at everyone’s replies think it might be difficult as the list is getting longer. The wiki re symptoms is great - I hadn’t found it until now. That in itself is so useful. What if the survey had an option to describe ‘other’ symptoms not listed? You might then be able to keep the survey 's main list a bit shorter? If this is a silly idea please ignore it :sweat_smile:.

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I’m new here…and so relieved to see a few of my symptoms here that I haven’t seen elsewhere. I get split-second brain zaps. It’s as if someone shakes my brain upside down and then rights it in a matter of a fraction of a second.

I also am extremely taxed by the following: looking at books or other items on bookshelves (e.g., floor-to-celing shelves) and cooking. The bending and back-and-forth moving in the kitchen required in meal prep are quite challenging. Anyone else experience this?

i could not cook for a few months, it was very difficult. I am now able to do it without feeling super dizzy, tired and freaked out, particularly breakfast ans lunch. At dinner i am very rocky so it is still a little challenging to cook a that time.

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I only had brain zaps when coming off an SSRI. My sister has them though and she is not on an SSRI. I had one once when I was a teenager. I suspect its related to sleep deprivation, that’s when both me and my sister have had it. But who knows?

I had so much anxiety at the beginning that I could barely read bedtime stories to my son. The pictures were just freaking me out, like I was having a bad drug experience or something. So yeah, minimal reading or watching TV for at least 6 months.

And yes, cooking was one of the hardest things because of all the stuff everywhere and constant turning and looking and bending.

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With active unstable MAV your balance is challenged and your brain has to channel more of its limited resources to ‘just’ keeping you vertical and it’s not alot of spare capacity for other things.

It’s pretty common. One that would finish me for a long time (serious nausea) was making any sort of sauce. Just watching it go around and around the pan as you stirred it. Like the book situation I think it’’s probably the lack of a distinct focal point for the eyes. They just don’t know quite where to look. Maybe increases nystagmus perhaps.

Water coming over your head in the shower will do it as will heavy rain running down a car windscreen. Well people just don’t realise how much of what we see is controlled by the brain, not the eyes and MAV/migraine affects the brain. Hence all these seemingly weird symptoms when the brain’s a ‘bit hyper’ as a migraine specialist neurologist I saw said.

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