So 10 years ago today, 30 Aug 2003, BOOM – I woke in a dizzy fog that would forever change my life. Hard to believe it has been a decade. Wow.
But instead of freaking people out with the 10 year tag, the silver lining in this is that I can say that I have this thing under my control. I run the show, it doesn’t run me. If I had to say one thing about all of this, it’s that you’ve got to know what your triggers are. Sometimes you think you have the whole picture, and you don’t. For example, it took me 9 years to realise fully what the impact of my neck was on this condition – i.e. a major migraine trigger.
Second thing, is knowledge of course. Knowledge is the key. This is made very difficult when there is a sea of garbage on the internet we continue to plow through even now. Such is the way with vestibular migraine – a diagnosis of exclusion for which there is no test with a blob that glows on a page or a scan that says, “yeah that’s you, you have a migraine brain”.
So never give up with this. It IS a very manageable condition. We all seem to have different paths to discover and follow in getting there.
Scott,
Well it’s a milestone I’m sure you’d rather not have, but you have made a tremendous difference in so many people’s lives since then. I cherish your friendship and we wouldn’t have met if it wasn’t for this crap! So! Silver Lining!!
Hugs!
Kelley
Yeah i agree, i wouldn’t wish this shit on anyone but you having this condition Scott has helped so many people so much, this group/website is the only one i have come to trust and it has helped me no end - thank you!
I am new here and although I have had MAV/VM for 7 years now, this site has been the only place that has made me feel as though I am not crazy.
I can now go to doctors and tell them what is going on with me with some measure of certainty. Where before it was just a mixture of nonsense.
I am so thankful for this site and all the information contained within it.
Big milestone, and I’m glad you are in the driver seat with this crazy thing called MAV/VM.
I just had my one year “anniversary” the other day and I can definitely say the same…I’m trying to see the silver linings (there are MANY) and realize how much more I am in control. I have to thank you b/c I owe most of that knowledge to you and this site. It is b/c of this site that I knew what was likely going on with me in weeks rather than months or years.
Thanks for keeping it real and peer reviewed…so many could be led astray if it weren’t for all the solid articles you have posted.
can i add to the thread - i have found this forum invaluable., so thank you Scott for it.
I dont know where i would be with out it - much more dizzy i guess.
Totally agree with everything you say Scott. There is a lot of info out there but nothing like what you get here, and without this website I think we would all be convinced we were going mad.
I have hit the 5 year mark, although I am sure I have had it for longer when I think back to certain situations and how I felt. I have learnt a lot along the way and am still learning. I have not got this under control yet, although have a good idea of what my triggers are. Very hard though when you tell people you can’t do certain things, like swim in the sea or even sometimes walk on the beach…really miss that!
But thank you for what you have done, bringing us all together and obtaining such solid information from health professionals who know about these things, but also bringing them to this website in the hope that they can take away information from sufferers to help make diagnosis quicker for other people in the future and finding a way to live with this and be able to carry on normal tasks everyday (something which I just cannot do) and of course to show the world this is a disability. It may not be visible but how would non-VM/MAV suffers deal with it in their everyday lives.
Perhaps we could have a international MAV/VM day, and of course I know you are on Twitter but still cannot find you on Facebook. This is such a good way to get out there and tell the world about this condition and people need to know!
Thank you Scott…x
Hi Scott, Im glad you have found your trigger! It has been 11 years for me and I still do not know what the hell causes this to come on. I know my neck is an issue too. Horrible neck pain, but I don’t know what to do about it. Can’t fix it. If you can offer any advice as to how you treat your neck it would be greatly appreciated! I have tried chiropractors, muscles relaxers, excercise, ect…all to no avail. And I really think its all connected.
Congrats to you on taking control of it and not the other way around!
Hi Scott, Im glad you have found your trigger! It has been 11 years for me and I still do not know what the hell causes this to come on. I know my neck is an issue too. Horrible neck pain, but I don’t know what to do about it. Can’t fix it. If you can offer any advice as to how you treat your neck it would be greatly appreciated! I have tried chiropractors, muscles relaxers, excercise, ect…all to no avail. And I really think its all connected.
Congrats to you on taking control of it and not the other way around!
— End quote
Hi there, I have neck problems too and had a whiplash injury when I was 21 although not front to back it was from the side, anyway have spent years going to chiropractors, osteopaths, physio, traction, you name it, although havent tried accupuncture, neck no better and desk job doesnt help, my neck cracks all the time even when doing stretches and I have come to the conclusion that my neck has been worked on far too much and has become very worn and irritable, we all know that migraine causes more neck pain and that receptors in the neck form part of the balance system, I think this all has a major impact, so I have given up on treatment and bought a foam neck brace and cut it to fit my neck comfortably so it sits in the right position and wear it when i get neck ache or evenings to give my neck muscles a rest, realise that i may look a bit of a wally but I have noticed that as soon as I start to wear it I am not so quite all over the place as I am before I put it on, although dont always benefit when severe boughts of migraine attack but even then it can just support your head and stop your neck moving so much when in pain, maybe give it a go and let us know how you get on. Make sure though if you need to cut the foam to get a comfortable fit otherwise it does make your neck feel worse.
