Virtigo: Hi all Just been DX with... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Virtigo

taffydaffy profile image
6 Replies

Hi all

Just been DX with BPPV = Benign Paroxysmal Positional Vertigo I get so dizzy when I bend or turn my head I loose my hearing and sight feel very sick and fainty it's all over in a few minutes but it's horrible anyone got it or have any advice for me x

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taffydaffy profile image
taffydaffy
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MaryF profile image
MaryFAdministrator

Hi there I found this on line for you - however I would check with your main medical contact first - at least if I was in you position I would, some of these exercises look quite gentle if you scroll down the page! The bit that says

Cawthorne-Cooksey Exercises

brainandspine.org.uk/inform...

Mary F x

DorothyItaly profile image
DorothyItaly

Blimey I didn't know it had a name :-). I started to get this over two years ago after I had a bowel spasm, fainted with the pain and hit my face on the washbasin as I fell, breaking my nose and giving me whiplash! It was really bad to start with but it has gradually lessened to the point where it just tends to take me unawares. It is worse when I am in bed and roll over onto the right hand side so I have developed a way of moving my body that restricts the movement of my neck and head so my body does the work. I tried neck support pillows but they made it much worse, as did a rolled up towel under the pillow, having raised pillows - you name it I tried everything. The change in the way I actually move in bed was the solution for me. Unfortunately, this also means I actually wake up when I turn over! I also had to make adjustments to the position of my office chair and the way I looked at the computer screen, the height of the screen etc. And finally sitting in my chair in the living room, thinking about how I look at things and adjusting the height of the television - I have to look up to look at our television now as to look down triggers it. All a bit hit and miss but it really has settled down now, I forget about it and then some slight dizziness will start and when I look at what I have been doing it is usually something positional that triggered it. I also have arthritis in my neck so my partner massages it for me (though are some good self massage techniques you can use). I am afraid it was hit and miss for me, and I guess you will need to figure out your triggers and what to do to lessen them. Good luck - I know what it is like to hang on for grim death when it happens so I really sympathise. Dorothy

kathyD64 profile image
kathyD64

i had 2 episodes of what you are describing both times triggered by neck position plus had uti and abdominal infection - it was related to aps i saw an ent doctor learn exercises to reduce it - both times it took several months to settle with still blips there after - horrid i do sympathise - i to have had several whiplashes currently having physio on my neck as cervical joints very stiff not sure if arthritis or not

kathy x

kathyD64 profile image
kathyD64

sorry i meant to say it was not related to aps

Mommaleda profile image
Mommaleda

I went to the hematologist today...sigh

Went to see him about vertigo- wasn't familiar with APS... Ended up saying he was testing me for lupus and that I should be at a neurologist office, then he checked me for lumps in by boobies.

Whatever.........

I can't seem to find a doctor that knows more about aps than me, which isn't saying too much...

Advice or suggestions

Xx to all

SharontheSheep profile image
SharontheSheep

Hi there

Suffered with this for a couple of years to the point I only go out for hospital appointments or a very very occasional trip. Have fantastic neurologist and will be starting balance therapy at Guys Hospital soon. There's no guarantee it will help as some people can't tolerate the therapy but I have to give it a go as I'm becoming a hermit - have lost my job after 25 years and been almost housebound since last October. Even people or things moving on the television trigger it.

I have every sympathy, It was suggested my migraines are the cause!

My daughter spins round in circles to get the same sensations I get just sitting down....she does it cos she likes the feeling, lol.

Sharon x

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