Im 26 and Im suffering for over a year and a half now.. I can barely stand, even sitting down is a big ask as my dizziness is soo bad.. Im having a really bad day today.. Ive got a wierd feeling in my head that i cant even explain.. Just really restless.. Had bloods done mri been to ent an everythings normal.. Does anyone else get this?
yes. many people do, and many of them come here. Be assured, if you are in the uk, you will eventually find your way to medway hospital. Very expert physiotherapists can show you how to cope or diagnose you accurately. It will take time, but it will get better
Where is medway hospital? As im in bradford
It is in Kent. Medway Maritime and Dr S Surenthiran in Neuro Otology is the expert. There is a long waiting list and your GP will have to refer you. I only found out by persistent enquiries via specialist physiotherapists. Good luck
Hi
I'm sorry your having a bad day. I have all kinds of dizzy feelings and the worst part is when they happen my anxiety kicks in and makes things so much worse. But from what I'm learning and its been 16 months of this and yes its taking me forever to understand, that anxiety can be be a big part of these disorders. I have migraine associated vertigo. But the dizziness i have can be different and hard to explain. I didn't have anything yesterday, but today its back to feeling like I'm on a fair ride and slightly being josseled around with this falling feeling and i have it wether i'm sitting, standing or laying down. It makes me crazy, make me feel like i don't want to move, also having a slight headache and tops of my shoulders feel tight. The other thing is when I feel like this, I can't get it out of my head, its all I think about and thats probably the anxiety to, because i worry about things like how long will this last, will it get worse, why today when yesterday was good. Honestly none of it makes sense. Its just there now and I don't know what normal is anymore. The whole thing sucks.
Have you been diagnosed with something? Are you on meds?
Thanks so much! Long way to travel but if it helps its worth it! Doubt my gp will refer me as their really bad
Oh my gosh i feel exact the same i can relate to your every symptom it sucks! Have u had an allergy test? Ive been told by alot of people to have one.. I had anxiety over a year ago but that went but with my dizziness because im constantly thinkin about it i get the anxiety too! I hav a slight headache too today.. Been given all sorts of tablets none work.. Been told its vertigo and labrynthitis been given medicine for that still doesnt help
Hi rahela. I have ended up seeing Dr surenthiran privately. He does a clinic in London and your gp doesn't have to refer you. Thing is now I'm under him on the nhs so I'm seeing my gp today to get them to refer me to Medway for my follow ups and I won't have to pay then!
Dyu know if he doesany clinics that are nearer to me?
No I'm sorry he doesn't. I asked the exact same thing as I live in the North west. There's another neuro otologist who is supposed to be good too called Dr Rea and he's based in Leicester. I'm hopeless at maps so don't know if that's nearer to you?
Im in bradford so anything near to yorkshire lol.. Leicester is about two and a half hours away from me
I"ve not had allergy testing and the doc has never mentioned it. He is sure its MAV and I do have all the symptoms. i just hate all the different dizzy sensations, they scare me. After 16 months of this I would think I would get used to it, but for some reason the fear is still there.
I started taking propranolol about 6 weeks ago but I'm on a low dose only 20mgs and the ENT says the therapic dose it 80mgs but I wonder if i"ll ever get there. It does help some with the panic I was having so I am thankful for that.
This is quite a lonely disorder, no one can really understand it, but I do have support from my family and friends but I still worry and I just keep that to myself.
So still quite far for you when you're feeling rubbish. I travelled on the train to London to see Dr surenthiran and that took the same amount of time. Why the hec we don't have anyone nearer is beyond me!!!
I worry loads too.. My panic attacks anxiets i very rarely get its mainly the dizziness that even after a year and a half still scares me.. You think your going to get used to it but u cnt!
I know! The nhs an doctors up here are not the very best! It sucks!
Hi Patty - you need to look on facebook on MAV SUPPORT or VESTIBULAR MIGRAINE PROFESSIONAL - it helps a lot, we all have MAV or something similar. It makes not so lonely.
I thought i would get used to it, but I think the reason we don't is because it changes so the worry just keeps going.
Hi Rahela - Dr Silver is at the Walton Centre in Liverpool and he is the UK guru - I think thats nearer for you.
Hi
I read youre post
Im 55 and going insane with worry
I cant explain the sensations i have in my head
I wonder if yours are like mine?
I started witj a very bad spinninh attack.whilst i was out walking my dog
No warning
Very very scary
So doc dent me for mri
Showed clear btain
Meantime still having them randimly
Sometimes in my sleep i
And if im not havin them thrn i have strange feelings like my brain is expanding and shrinking
Real sensations
I am so scsred of what it is and what may happen
Doc says to me
He wont refer me toanyone else
I am getting panic attacks tooat the thought of what it may be and ehat couod happen
Is this like yours?
I can relate to your symptoms mine came on randomly one day aswell been for mri bloods ent but all clear. They cant seem to find what it is im always heavy headed it freaks me out because i think what if its a brain tumour. My symptoms are same as yours