Waiting to be diagnosed

Hi all - nice to meet you, I’m a newbie to this site having spent the past week reading many, many posts.

My name is Carrie-Leigh (nickname Muppo) and I’m 33 and from London, UK.

I thought I would post to gain some opinions as some days I think I have MAV, and others I dont.

My condition started on 11th Nov 2010 at work sitting at my desk - I had (what I know understand to be) a “mini spin” - but the rooms spun for about 10 seconds after the hit. I completely freaked out, had a full blown panic attack and work sent me home in a taxi. I went to my GP the next morning and he said Labs and gave me Stemetil. I calmed down, went to work and then 4 days later another hit, again whilst sitting at my desk. Sent home and my folks took me privately that evening to an ENT. He did the hearing tests (some minor low level hearing loss on the left side) and then some other tests. Told me Labs also and give it 6 weeks to go away. He said stop taking the Stemetil as it was only giving my brain another thing to think about and I would not compensate - he also gave me the Cawthorne Cooksey exercise sheet to follow.

2 weeks passed and all ok and then bam, a 3rd and 4th attack on the same day - this time the 4th one resulted in a full blown panic attack and I was sent home from work. The following week I deteriorated in terms of simply feeling very unwell the whole time and I had to end my contract with the bank. I just felt ill every day but couldnt explain why and the GP kept saying ‘you’ve been hit with a virus’. The attacks started following a severe head cold that lasted 3 weeks.

I was then seen by a Neurologist and he ran all the tests and said he could find nothing wrong with me and he thought it was migraines because I suffer with mild headaches but my mum is a severe migraine sufferer. He said the symptoms would die down and no further action would be needed.

I have since been off work as I feel so unwell all the time and have had all the usual tests (2 bloods, MRI, eye tests etc). I then saw another ENT who diagnosed Menieres and I exclaimed ON WHAT BASIS??!!! And she prattled on making no sense as to how she came to that conclusion. She prescribed Betahistine 16mg 3x p/d.

My symptoms started out as mini spins (have never - touch wood - been struck with full blown vertigo that I’ve read about), ear fullness and head pressure, episodic tinnitus mainly in the left ear but only lasts for seconds, no hearing loss, slight visual disturbances in that things look a bit off. This past month the symptoms have developed into the rocking sensations, seeing the ground move, feeling like my feet are not on the floor properly, nighttime episodes of random feelings the bed is tilting and my eyes start to flicker and the mini spins). I’ve always been in perfect health, slept soundly and been fit and active.

I found out about the Neurotology Department at Addenbrooke’s Hospital in Cambridge and had my GP refer me to Mr Patrick Axon. I have had one consultation with him, a repeat hearing test that showed full normal range and an improvement on my previous hearing tests, he performed the Eply and ruled that out and he ruled out Menieres. He said the tinnitus would be roaring or a constating whoosing, I’ve had no hearing loss and no true spinning vertigo among other things. He said he wasnt prepared to guess at a diagnosis until I’ve had my ENG tests which are this coming Friday 25th Feb and to quit the Betahistine. I am then seeing him for my evaluation on the 18th March.

Things took a dramatic turn for the worst after seeing Mr Axon when the following weekend I decided to chance having a couple of glasses of white wine (I have given up coffee and alcohol as soon as this all started and generally have a good diet). The next day after the wine I deteriorated into full blown hysterics because the rocking was so bad, I couldnt see or stand. I went to my GP who prescribed Citalopram. I took one table and that night I ended up in A&E as the nausia was out of control, I couldnt keep food down, I had burning in my arms, I couldnt get out of bed and my head was like a pressure cooker. All tests at hospital normal and they kicked me out at 3am even though I couldnt walk. I spent the rest of the week in bed in a horrible state, eating maybe 2 pieces of bread a day and very weak and my legs began to get very uncomfortable due to the lack of use!

I have slowly each day managed to get up, eat more, and get out for a walk but have stopped driving. I took a couple of Diazepams over a couple of days to help with my anxiety (esp after the New Zealand quake as I used to live In Christchurch and was due to move back there the day it happened!).

All of my belongings have been shipped over to NZ, all flights bought and paid for plus trips but I’m still struggling at home with this 3.5 months in.

I have mini spins nearly each day, painful pressure in my ears and constant popping in the left ear, rocking sensation all the time that varies in intensity, and the only time I feel ok is being in the car going along and walking outside in the fresh air. I dont have motion sickness.

Sorry my post is so long but I guess I wanted to give a full run down so that someone might be able to give me some insight. Mr Axon said he was surprised I had to quit work but I kept saying I just feel ill all the time and not right!!! My job is very pressuried even though I love it. I just cant do it at 50%. I was such a confident, outgoing person but my confidence has been absolutely shattered by this.

I’m not currently on any meds and only taking Gingko 120mg, Vit B Complex, Ginger Root and I was taking the Cocculus but have stopped that. I was also thinking of going to visit Steve Troman justbewell.com (see his video on dizziness).

Wishing everyone on this site health, happiness and a speedy recovery from this nightmare.

Love Muppo xx :cry:

Hi Muppo - welcome to the site - but sorry you have to be here.

I can relate to a lot of your symptoms - like you if I’m bad then driving is one of the best things - or any movement really - if it’s bad then I have to walk around - it seems to counteract the movement in my head. Anxiety is one of my auras / co-symptoms as well, although it’s physiological anxiety (ie in my head I’m not anxious about anyhting buy my body has all the classic symptoms, stomach in knots etc

I’m not a rocker, but hopefully Jennyd will be able to chime in as rocking is one of her big symptoms.

Did the diazepam help your other symptoms (dizzy etc)? Many here find benzos v good

have you seen the MAV survival guide? http://mvertigo.cloudapp.net/t/vestibular-migraine-survival-guide-2014/2244 there are some other lifestyle tips you could try while waiting for your follow-up with the Dr. Also Magnesium and CoQ10 are the other clinically tested supplements that help a number of us (magnesium also ensures you’re never constipated, if you get my drift :lol: ).

Hang in there and ask as many questions as you need to - or just have a whinge on a bad day - we’ll all understand!


I just want to welcome you and say I’m soooooo sorry you are suffering so much. I sure hope you get to the bottom of this and get some help. I can relate to a lot of what you are going through but i’ve been on and off for 30 years. i couldn’t handle citralipram either it gave me horrible insomnia for three nights like i had had 50 cups of coffee made me feel awful.

i haven’t found anything to help except valium takes the edge off a little.

Hugs to you!


Hi Muppo,

Welcome to the board. You will find support and good information here.

What you’ve described sounds very very familiar to me and I too have had the rocking, feeling of spongy, wonky floors. And I have been diagnosed with MAV. But I would concur with our learned friend Mr Paxton and wait until tomorrow when he gets his test results in. No point jumping the gun. The good news with MAV is that it is treatable with lifestyle changes and/or meds. So don’t panic and don’t think you’ll feel this way forever.

Hang in there and please keep us posted.


Hi Muppo,

I went to the ENTs and neurologist in Oxfordshire, had tests which thought I had menieres. I then went to London to Prof Luxon and had more tests which came out with a slight abnormality. Then I too, went to Addenbrookes, more tests (bit basic I thought, standing on a leather stool with my eyes closed and walking up and down the room with my eyes closed) not quite the same as the calorics, spinning chairs and ECOG. They recommended Catherine Cooksey excercises to help balance, they did nothing for me. I ended up at the neurologists in London where they said I had vestibular migraine.

I kept a diary and the bad vertigo attacks were before or after a bad migraine. I also had motion sickness as a child and zig zag lines without the migraine in my teens. I am not sure they ever get a definite diagnosis on this, as the ears affect the head affect the ears… At the end of the day, you can try the various preventatives and hopefully one will work for you.

By the way, I tried the cutting out salt and drinking hardly anything (recommended for the menieres) and it didnt help, probably I felt worse. I keep on the betahistine because I think it helps.


Hi Muppo, firstly, I’m so sorry that you’re feeling so rough. What you’ve written sounds so familiar with me! You obviously need to get a diagnosis, but I think many on here will say that in some cases it can take a while to get this - you may need to keep pushing. I was like you going from GP to ENT and Neuro, being told to come off this tablet and go on that one. I suffered massively from panic attacks brought on by this too. Also, as you have said, it’s really hard to explain how you feel -I just know I’ve never felt so ill in my life, but couldn’t explain what it felt like! I also agree that its a massive blow to confidence levels, mainly for me as I couldn’t see any end in sight and with the anxiety it made it worse.
There is light at the end of the tunnel though, you need to find out whats wrong and then start to work on it with lifestyle changes and meds. I also take Gingko, Magnesium, B complex and COQ10 - read somewhere that these help, so I’ve taken them ever since!
Good luck in getting the help you need.
Tracey x

Damn,Muppo, sounds like you’re in a hell of a fix. In your boots, I wouldn’t dare try the long flight back to NZ, and yet I know how important it is to feel some stability! I hope you can create that for yourself where you are, for as long as you need, and not feel perched, half where your body is, half back in NZ where you shipped your things.

So I passed the ENG tests … But of course!!! Now back to the drawing board and waiting to see Mr Axon in 3 wks time.

At least I’m now standing but the rocking and motion is driving me nuts! Back to the Valium me thinks!

Bless you all xxx

im so sorry. i honestly don’t have a true diagnosis after 30 years so i can relate. i hate that i don’t more than anything. i am beginning to think it’s just allergies and anxiety but i don’t know