Dont know what to do!

I dont know what else to do. i started with spinning vertigo 3 months ago and a feeling of pressure in the left side of my head.I went to my opticians and everything was fine. The vertigo eventually eased and i was left with feeling constantly off balance and every day i have some kind of headache/pressure in the side of my head. I feel like i have been hit in the side of my head. I feel a bit confused and generally feel unwell with nausea. I have saw 3 gp’s and an ent specialist who all cant find anything wrong. I am getting worse and the headache is getting more severe. I have told my gp i fear i have a brain tumour and they say i have no signs of anything. I have muscle twitches at night and i woke up last night with my left hand tingling and numb.
It’s all getting me down and feel like no one believes how ill i am.

It sounds very much like you have vestibular migraine and it’s very normal to feel so alone and down about it esp when you first get it (i am into my 4th year now) The symptoms can be VERY scary at times and make you feel very anxious too but try to tell yourself that it is ‘only’ migraine and nothing life threatening (though very life changing!) I used to think i had a brain tumour too, i think we all have at some point but that is very unlikely as you would probably get much worse very quickly and have other symptoms such as severe seizures etc
I would advise to you to start by reading up on all the info on here regarding lifestyle changes and diet etc, things you can try at home to try and improve your symptoms, it does take lots of patience and perserverance (esp the diet) but it is totally worth doing.
Can you also ask to be referred to a migraine/neurology specialist? This would confirm the diagnosis of migraine to put your mind at rest and maybe they could start you on some medications to see if that helped.

You are not alone! We all know how it sucks to feel like this but keep positive and i hope you find some relief soon xxxx

Hi thanks for the reply. Do you think if it was something sinister the optician and 3 gp’s would have picked up on it? I just feel so ill and I feel neurotic going to my gp every few days. My head constantly feels heavy and foggy, my left eye sometimes feels like it aches and even hurts when I move my eyeball and my cheek too. My gp did my bloods yesterday just to try and reassure me. I do get normal migraines a couple of times a year but this is totally different.
I woke up with vertigo at the end of November and I haven’t been the same since. Is this normal for vestibular migraine?
I told my gp about the side of my face and head and he said it could be trigeminal neuralgia which people who get migraines have bother with. But when I looked it up it was sharp pains but mine is constant pressure/headache and constant dizziness/ off balance.

Hi Zipster,
I wouldn’t get worried , you sound just like me ( 6 years ago) . I woke up one day so violently spinning I couldn’t stand up but also with severe facial pain. The pain was in one side of my head , all around my left eye, in my cheek and down into my jaw. No one took any notice of the pains which were so severe I couldn’t lie on that side of my face at night. I thought I was about to loose my sight and seemed to be constantly at Doctors / Opticians. At one point I even had a sinus operation which was a complete waste of time. Five years later they came up with the diagnosis of MAV and I’m now on 20mg Nortryptaline and 100mg topirimate and feel much better.
Your symptoms sound like MAV and you need to see a migraine specialist for proper treatment.
Good luck!!
Anne x

Thanks dizzyanne. I woke up one morning and tried to get up and also had violent spinning vertigo. I was off balance 24/7 and got vertigo if I layed down/sat up/look left/right and up and down. It eased a little over Xmas and then a few weeks ago I was laying watching the tele and my head swayed again and my balance went. I got up for the loo and the floor and wall was bouncing and shaking with every step I took. It’s my head that’s worrying me, I have had an excruciating left sided headache all day that hasn’t eased at all. I always have some odd feeling on my left either pressure,headache, aching, burning etc. I am not eating much either and worrying myself silly I have a tumour and it’s being missed… Is it best to see a neurologist because I don’t know if there’s many migraine specialists in uk.

Unfortunately MAV does make you feel rough all the time, i also have daily foggy/groggy head and dull headaches/head pains sometimes plus the 24/7 off balance/dizziness. I also get lightheadedness like i will faint, falling feelings, eye symptoms, things in the corner of my eyes, flashing lights and i could go on.
It’s a horrible horrible condition but please try not to worry that it is anything else, it’s almost certianly MAV but you could get a confirmation of this to reassure you.
Also remember that worrying about it can make it so much worse, it really can, i know this from experience, i always feel my best when i am doing things that take my mind off of it like spending time with famly/friends :slight_smile:
I’m sorry you are suffering but things can improve and you do kinda get used to living with it too.

Forgot to add to ask your GP for a referral to a neurologist, they can treat migraine too :slight_smile:

Ok thanks deethedizzy. My gp will be sick of me I was there yesterday and he done my bloods to reassure me and he done neuro tests again.
Also does light and noise bother you? And I keep getting pins and needles and numb patches in various places.

Yes flourescent lights kill me, esp in large buildings like offices, supermarkets, shops etc and i hate too much noise.
I do not get too much pins and needles luckily but have had it before, i also have very tense/painful neck/shoulders/upper back.

I know its hard to approach doctors, mine have labelled me anxious and all sorts and one even said that i couldnt be that ill or how would i have gotten to the doctors! Good luck getting a referral x

I started anti depressants on Monday because everyone thinks I have depression and anxiety. I am but because I am so ill.
Since the vertigo my anxiety has been sky high.

Migraine conditions and depression are closely linked but it does not mean that anxiety causes your symptoms, anyone who feels this ill would be anxious! Sometimes the tablets can help with the anxiety linked to this condition, i hope they help you to feel a bit better.

Why don’t you try the diet for a few months? Some people have really good results from it, i definately notice my symptoms getting worse if i eat certain things. Caffeine is one of my biggest triggers which includes chocolate :confused:

Hi Zipster
It’s so hard for you not to worry but honestly I was just like you. I couldn’t stand any light. I always wore sunglasses and we don’t get so much sun in England and I couldn’t stand the flickering of candlelight or anything like that. As for noise I was terrible !! Couldn’t stand even my husbands loud voice!! Everything somehow seemed much louder than it probably was .
I was anxious and depressed all the time and cried constantly. (prior to the night I woke up dizzy I was perfectly happy ) .
No one really understands just how ill you really feel ( we all do ) this MAV thing really knocks the life out of you but you can & will improve with the right help, diet and medication.

Best wishes

Anne x

Thank you. Me too I was happy the day before I had been Christmas shopping in Manchester and then woke up the next day with the vertigo. I suppose if i think about it if it was a tumour I don’t think you would be ok one day and wake up with full on spinning vertigo would you? It’s just so frightening waking up to violent spins it’s bound to make us anxious.
I said to my gp when I went with the vertigo and pressure in the side of my head could it be linked to migraine because I had a normal migraine a few weeks before and he said no its too far apart.
I am not meant to be fit, i have had m.e too for 12 years but I had learned to manage that and then this happened.
I feel like I will never be normal again. I just haven’t felt myself at all, crying all day and I don’t want to go anywhere and I am struggling to get up in the morning. I am hoping these anti depressants will pick me up in a few weeks.
Is the diet to avoid chocolate, cheese, red wine and dairy?

Zipster it sounds like migraine to me. What anti-depressents are you taking, is it one that can help migraine?

I live quite near Manchester is that where you are from? If so, then you could go and see Dr Nick Silver a neuro specialising in migraine who consults from Liverpool or Warrington. Then there is Dr Surenthiran in Kent if you are able to get there? He is the UK guru in VM/MAV.


Hi Jem. I am in Cumbria so Liverpool Or Warrington would be ok.
So you all think I am on the right track with mav?
I started fluoxetine on Monday because I have been crying non stop every day and felt like I was dying.
I feel sick and jittery and I try to do something and I can’t. I don’t want to socialise and feel anxious around people.
I keep feeling like my arm and legs weird on my right but I pass all the neuro tests.
The world and everyone around me looks different if you know what I mean. My left side of head always feels odd with either pressure, headache or burning.