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