A year after I first posted on this site, I am pleased to be able to report that I have made a full recovery. For those interested in my ‘journey’ please see ‘Lindsay’s Diary’ - this will give you my full story.
I have gone from never thinking I would get my old life back to doing everything that I used to. Over the past few weeks I have gone back to playing hockey which was the ultimate goal for me - I have played since I was nine years old and wasn’t ready to give it up!
I am still on my medication but plan to slowly start decreasing it over the coming months. I am in no rush to stop taking it.
When I last posted in February of this year, I was very anxious about relapsing. Lockdown then happened and I decided to get a job working in my local supermarket as my normal work was all cancelled. I spent 12 weeks getting up at 3am to start work at 4am as a personal shopper, walking and lifting in a supermarket for up to 8 hours. I coped with this without relapsing and in fact the activity helped with the last bit of my recovery. I am no longer anxious as I feel pretty sure that if I can cope with the physical stress of that job, then I’m going to be OK.
I have also introduced all the 6Cs back into my diet with no adverse effects (apart from a slightly bigger bottom). I was always fairly certain that diet didn’t affect my condition but it was so hard to know what made me better or worse that I couldn’t be sure. On a recent holiday to France I ate a serious amount of cheese and chocolate as well as drinking copious amounts of wine. Apart from being mildly hungover from the wine, I was otherwise fine - much to my delight!
I became chronically ill after suffering from a virus - I believe that the virus injured my vestibular nerve which then caused my brain and CNS to have a meltdown. This was diagnosed as Vestibular Migraine. Rest and drugs helped stabilise my brain so I was then able to follow a program of Vestibular Rehab under the guidance of a therapist. Getting back to an active life has completed the rehabilitation of my balance system and my brain is now operating in its normal state. My condition was never episodic and although I had bad days and better days my recovery was slow but consistent. If you are reading this and have had problems after an illness or injury of some sort then I think you can be very optimistic about making a good recovery - it won’t be quick and it’s hard work but you will get there.
It seems to me that Vestibular Migraine or MAV is a ‘catch-all’ diagnosis for when doctors don’t have a better explanation for a certain set of symptoms. If you read through the posts on this forum then you will quickly realise that while we have many symptoms in common, there are many different manifestations of this condition on this site. My best advice is to try and find the posts that have the most in common with how your condition behaves as this will give you the most relevant information to absorb. Stay positive and prioritise your recovery above everything (where possible). I read and watched everything I could about Vestibular Migraine and its treatment which really helped me feel as if I had some control. The knowledge I acquired also helped me my steer my GPs who were pretty clueless.
If you are feeling as desperate as I was when I was at my worst then know that you are not alone - you may be suffering but you will get better and you can make a good recovery - this too shall pass. Please do let me know if there is anything I can do to help you…
Best wishes to everyone.