Sunday, September 12, 2010
Living with Vertigo
Remember when you were little, did you ever play that game where you spin and spin and spin in one direction and then STOP! The whole world seemed to whirl and swirl around and your head with it! You couldn't walk at all and you would fall about laughing like a giddy fool with no direction and no bearings. How fun that game was. But the sensation only lasted a few minutes, before normality and balance returned – but just imagine feeling like that all the time. Imagine, if like me, that had been your reality day after day for an entire year!
How it all started…..
I suffer from a condition called Migraine Variant Vertigo – bit of a mouthful, so we'll call it MVV. I believe MVV is a fairly uncommon form of the illness and certainly one I had never heard of before. It started last July after what had been a pretty typical day at the office, you know the sort I mean phones ringing non-stop, clients calling to rearrange meetings you'd moved heaven and earth to arrange in the first place, a to do list that was growing by the second and the half eaten remains of something which should have been filed in the nearest trash receptacle in the first place! Around early evening I began noticing that strangely I was seeing smoke. Though there was no smoke around me, through my eyes it appeared as though every room was filled with a hazy cloud. Naturally I assumed this was due to tiredness and decided to have an early night and THAT'S when it all started!
Having not been a migraine sufferer before, the head ache I developed that night was so severe that I actually thought I was going to die. Anyone who has ever had a migraine will know exactly what I'm talking about. The muscles in my neck, around my scalp and face were getting tighter and tighter which made my head feel like pressure was building up inside ready for an explosion! I wasn't able to open my eyes, couldn't speak, and couldn't move. No-one could help me, no-one could comfort me.
I'm not sure how I managed to sleep that night, because none of my normal pain relief tablets had worked, but by morning, thank God, the head ache had gone. However, I did notice that I was feeling slightly dizzy, but returned to work regardless. No sooner than I had got back into the bright office lights , computers screens, people talking and lots of movement all around me, the "slight dizziness" immediately escalated into a major earth quake and I was back in the playground age 6 spinning and spinning and spinning totally disorientated , confused and knowing something was very wrong indeed.
Time to Call the Doctors……..
I went to see my GP straight away. I'd had a couple bouts of vertigo before over the last 10 years but those had been caused by ear infections. On full examination my ears were fine, blood pressure was fine, there was no fever and nothing to indicate any other cause for my symptoms. Yet I still felt dizzy and as the hours went on so the dizziness was increasing. My GP prescribed Stemetil a drug I'd taken before. After a few days of taking Stemetil and feeling even worse, my GP referred me to an Ear Nose and Throat specialist. Luckily the ENT specialist that I was assigned to happened to be one of if not "the" MVV specialist in the whole of the South East, a Consultant Neuro-otologist called Dr Surenthiran. By the time I saw Dr Surenthiran , which was 4 days after I'd had the migraine, I had gone from feeling like I was a little tipsy to feeling like I was in a tiny boat sailing on a very very rough sea. By that stage I was in a pretty bad way . I wasn't able to drive at all , I wasn't even able to walk unaided. I couldn't stand without holding onto something or someone otherwise I would sway violently. I couldn't sit without my head being supported otherwise it would literally bob up and down uncontrollably. My eyes would catch every single movement around me. I couldn't bear bright light or loud sound, even lying in bed I felt as though I was moving. I was exhausted from all the movement in me and around me and yet all I was able to do was SIT! And this is how it was from morning till night, day after day after day!
Dr Surenthiran immediately diagnosed me with MVV. He explained that what had happened, in very simple terms, was that the migraine had caused damage to the nerves between the balance system in the ears and the brain. My brain was now no longer trusting the messages it was getting from my eyes, ears and muscles regarding the position of my body resulting in total confusion and zero balance. After an MRI scan and a whole series of Vestibular Function Tests he was able to assess how severe the problem was and decide on the best plan of action.
The Treatment …….
Dr Surenthiran was great – the first thing he told me was "this is probably going to get much worse before it gets better!" Don't you just love doctors? But he wasn't trying to scare me, he'd seen hundreds of patients like me before some much worse, what he was doing was PREPARING me.
Straight away he:
• Took me off Stemetil
• Put me on a special diet that cut out things like caffeine, dairy products, citrus fruits, chocolate and red wine (this was going to be tough!)
• Started me on daily Vestibular Rehabilitation exercises three times a day.
• Prescribed a drug called Nortriptyline.
Dr Surenthiran also told me that I had to eat regular meals and get PLENTY of rest. He explained this condition was not easy to treat and that I was going to have to be patient, but in the early days I didn't quite realise what being patient really meant and quite what he was asking of me when he told me to take it easy!
Six months have gone by and I'm still off sick!....
Picture The Scene – Christmas had been and gone. I'd been off chocolate and red wine for a long time and was not a happy girl! I'd been taking Nortriptyline for months and was up to maximum strength plus taking another medication on top. I still wasn't driving, I'd been house bound for what seemed a life time. I'd feel better for a week and then have an attack which would wipe me out for three . This would result in a dose increase in my medication which meant I'd get another week or so of feeling OK and then WHAM another attack! It was like being on a terrible "illness roller coaster" I was really feeling desperate by this point and having promised my boss I'd be back at work in the New Year, I felt like I was letting everyone down by just not getting better. I was seeing Dr Surenthiran every 6 weeks and thinking "this is NEVER going to end!" Then during one of those appointments I finally had a breakthrough. My consultant told me that I had to stop putting unreasonable demands on myself that I had to JUST LET GO! He said that I had to accept I was no longer able to run around cramming a million and one things into my day as I used to before and that, for now, I was just going to have to focus on GETTING BETTER and not on GETTING BACK TO ANYTHING! That suddenly made so much sense. Having always had zero patience, my body was now making me stop and teaching me patience. The lesson I was learning was that the harder I was kicking myself to get better fast, the more I was actually prolonging my recovery because I was not giving myself time to heal.
Finally Getting Real…….
It's now been just over a year since this started. Thankfully the acute attacks that used to last 2-3 weeks are under control with my current medication, which is combination of Nortriptyline and another drug called Topiramate. The vertigo has not gone away but has now become rather like an old friend that I've gotten used to. The medication is very strong and very sedating and because the dose of both drugs is so high, the side effects do have their own problems but you do get used to that too. I feel very tired all the time and sleep like a log but that's not a bad thing. The dizziness is still there, but it feels like I'm sailing on calmer waters now. I still need a lot of help from my family and friends who deserve medals for keeping me sane through all this. However, even though I try to stay calm and try to be as realistic and kind to myself as possible, I still find it difficult to answer people when they ask me "how come you still haven't got better!" Dr Surenthiran warned me about this too. He told me that vertigo is a very disabling illness, more disabling even than having one leg! But it's an illness that's not well understood and no one realises what you are going through because on the face of it you look perfectly healthy and normal! Though this has been a very difficult year for me in so many ways, I am still thankful for what it has taught me and that is that I'M STILL STANDING (it may not be straight - but I'm still standing!)
I'd love to hear from anyone who is suffering from Vertigo and needs someone to talk to. I know only too well how crippling and isolating this illness can be, so if there is anything I can do to encourage and give hope that there are good days and light at the end of the tunnel, then I am here and happy to help.
For further information on Vertigo:
Radio 4 programme by Dr Mark Porter Aug 25th 2010 - Balance Disorders
Lucy Atkins Guardian 2008 - Spinning out of control