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Another bad day


#61

Hi Kirsty,

So sorry to hear you are having a rough patch. I’m sure this will clear very soon. This illness is so up and down. Last year there was a point where I was 80% now I would say I’m 50% god knows why?

I too feel like I have been on a night out and I’m hungover but still drunk. I have this feeling 24/7z My head also feels floaty and numb and I feel detached like my vision is so odd. Like when you are really hungover and you feel like your on a different planet.

Like you I also get ear pressure and fullness and my head pressure gets worse the more I do.

Have you thought of trying venafalaxine, I am yet to try this med but heard that it helps a lot with visual symptoms.

I just want you to know you are not alone :kissing_heart:

I hope your symptoms lessen soon xx


#62

Sometimes it’s easier for somebody else to work out what might have caused a particularly deep fluctuation in symptoms. Guess In your current situation Botox is involved in the equation plus overstimulation of shopping, driving, visiting neurologist (long car journey really great for upsetting balance, taking feet off terra firma) together equals over stimulation of an already hypersensitive system. It’s always so annoying one only discovers it retrospectively when it’s too late. And it takes a seemingly disproportionately tine to settle down again, so frustrating,

One very interesting piint you make though, which I’m sure applies to many in this forum,

I’m not saying anxiety or any other mood causes MAV. Far from it but I’m convinced it affects it once people have got it, and it can exacerbate symptoms and prolong the condition. I’d swear you felt better that day because your were seeing the neurologist. You see her as your passport to a better life so you felt positive. And better! Helen


#63

Hi Natty,

Thank you for your lovely reply!:grin: Im so glad you guys understand this! Its been awful - quite like a vestibular endurance test! How are you getting on with nort? Have you seen any changes/improvements? As for Venlafaxine I did mention this to my neuro, her reply was that she thinks Pizotifen works much better and so she would try that first. I wanted to ask you, are you managing to work with this?

Today I am a little teary and your lovely reply made me cry… tbh I felt like I needed it :triumph:

Hope your day is better too!! :star_struck::hugs: xx


#64

Hello Helen,
Thank you for your reply!

Has your vertigo settled down at all?
Yes I agree, because I was feeling better I was doing lots more, now Ive got polarized glasses I think im Wonder Woman! :joy: no, but on a serious note I agree with your comment! The day before seeing neuro I felt a lot less symptoms albeit they were still lingering! But yes it makes sense!

Im probably looking for something to blame - a third party source ie: Botox, but I do acknowledge that Ive been doing normal things to a degree overstimulating my senses. I guess Its a wait and see carry on again! With botox im not sure I will persue with it yet but I of course want to give it a good go first I also want to up the Ami but neurologist wants to wait a while yet.

Hope your having a lovely day! :grin:


#65

Aww that’s ok Hun, I know how mentally tiring this illness is.

We will get there just got to keep going until we hit the jackpot so to speak.

I’m on 10mgs ami at the moment. It’s only been 10 days so not expecting miracles just yet lol

When this started all the pressure was at the back but now it’s moved more to my front and sides. My eyes feel swollen and like there out on stilts. :tired_face:

Hopefully the ami will work for both of us. :pray:t2:

I’m here anytime you need an ear although mine are blocked :joy:

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