I’ve been living with vestibular migraines for 15 months now. The main symptoms being the 24/7 dizziness, exhaustion, insomnia and anxiety.
I have tried nearly every form of medication, epilepsy drugs, nortriptyline, stemetil, toporimate, amitriptyline, propranolol the list is endless. I seem to be very sensitive to meds so for most of them I couldnt even last a few days on them, even though I’d take them at night on the lowest does, I would be so drugged up until 3 the next day that I couldn’t function. Not to mention the natural methods I have tried. Magnesium, Acupuncture, B12 patches, hematite grounding bracelets, Reiki and alternative healing methods. Although some of these things has helped my symptoms for a few weeks, So far nothing has helped me get this under control.
I had a really good 2 months and for the first time my vision was probably back to 80% and I could walk short distances and go out for a drink with friends ( If I wasnt dancing! ) but then it all came crashing down again 3 weeks ago.
Here is what I have learnt living with an invisible illness
Friends – You don’t see them as much. Your social activities can never be planned as you never know how you’ll be on the day. In time, they stop inviting you to things, not out of spite, but realising you are limited when it comes to travelling on trains, busy bars, bright lights and loud music.
You LOOK Fine – I can scrub up pretty well each morning : ) But underneath I still can’t walk more than 20 minutes before I feel the need to go home as the floor is moving, or my legs are like jelly. You also end up having anxiety just trying to do normal every day things, like get on the Tube, or cross a busy main road. Also, on my good days, I will make the most of it and go out. As I’m a blogger, you will see photos of me smiling and laughing, but you won’t realise it took maybe 2 weeks of resting and building up my strength to have that night/day out, and If I do, I can guarantee a few days/week resting afterwards.
Its Lonely – A lot of us had to give up careers we really loved when we were hit by this illness. I was working in travel and content and was ready to move into a dream job role when this kicked in. I had to give up my job and find a home based one – which I did – and luckily I really enjoy. But when you’re in your flat day in day out, for 5 months on end, on your own without your co workers, you start to get depressed and think of the life you had before, and is this my future?
Loved Ones – My partner is incredible, but he gets tired too, He works 10 hour days and he worries about me constantly. Can I go out today, have I used my laptop too much? Am I eating? I suppose it shows just how strong we are to get this far, as everything is on hold. I’ve already cancelled 3 holidays as a few weeks before I was meant to fly I was exhausted and couldnt leave the house. We are now trying to book a long haul and I’m terrified of it. I’ve flown over 50 times so I never used to have any fear of flying, but now I have constant anxiety of being ill or not being able to go out when I get there and it’s just too much. When did it get to the point that the happiest time of your life is turning into something you dread?
Weird Symptoms – Recently when i refuse to stay in and try to go out for long stretches, I start to slur my words like I’m drunk. I also get my words mixed up and can’t seem to string together a sentence on really bad days. I laugh it off most days, other it really frustrates me. Another one, weird symptoms seem to pop up every few months. More recently, tingling in my legs for 5 days and then I could hardly take a few steps, it felt like I had no muscles to hold my body weight up and my legs felt like led. Another weekend trip away was cancelled.
Acceptance – I think this is the most dangerous one, accepting it. You always have to find a way to get better, or at least get it under control. But recently I’ve been thinking this is my life from now on. I’ll never get my career back, struggle to save for a pension, money will always be a worry, I won’t be able to go out and socialise like I used too and I can’t plan anything as this is so unpredictable. It get’s you really really low. I want to work full time again, travel, surf as much as possible, start up running again, go and have a few mad nights out, or go for a really long hike.
I’m currently trying a new med candesartan that helps to lower blood pressure with NO side effects! It will take a few months to see if these work.
You just have to hold in there and wait for the cycle to break….
As an update it’s now been 2.5 years and I am doing a lot better! I am not on meds other than stemetil in emergencies and although I still get headaches, I am now getting physio instead on my neck as I often wonder if all this resulted in a whiplash accident years ago.
I started a facebook group a while back if anyone needs support so click here to join
Also the video quality is terrible lol, but I have recorded my progress on Youtube so click here