First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness: Whiplash in January
Start of chronic phase: May 2019
Age at chronic onset: 25
Started medication: June 28
Number & type of consultants seen to date: 2 ENT, 1 neurologist, 1 gp
Diagnoses received (one I’m “running with” first): MAV
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: Not yet
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character: Tinnitus both ears
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines: Never had one before this year
Any family history of migraines: Dad had severe ocular migraines
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:
Friends think I’m making it up
Doctors , save for GP, think I’m making it up
What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: Can function but its hard, Internal swaying (MDDS-like), Heavy bowling ball head, Weird vision problems, Left side of face very tense, Feeling worse after motion, Feeling the world is swaying, or like a plane cabin
My Worse Day Now: (description of the worst day you get now)
- May 2nd – First start. feeling ‘off’ exhausted
- Then head pain, then dizziness
Start of Journal
I figured this would be a good time to post, on this forum, my ‘journey’ (more like odyssey) so far with vestibular migraine. I have, as many of us, read through so many of these posts, looking for hope, light, and support. I am now two months into this journey, as I believe my migraine started on May 2nd. But, I would say that the migraine/this has been building up for quite some while.
I have been under chronic stress for the past two years of my life: waiting for ‘something bad’ to happen, perhaps something that would maybe allow me to escape the day to day suffering – ‘ordinary unhappiness’ – that I was going through at the time. I have always had a bit of ‘health anxiety’ veering on hypochondria so after coming down with VM, it took me a lot of time to believe that this was a ‘real’ diagnosis. I have always had a complex relationship with my body, and if this is getting too personal I apologise: although I do not think VM is psychosomatic, I can’t help but shake that there is a message or a link to our current states. That VM, is, in many ways, a cry for help or a cry for attention-- maybe an emotion or a memory brought to light in the only way it knows how? I don’t know-- perhaps that’s the ‘romantic’ in me? But that’s besides the point.
My story started about two months ago, and at first I just felt a bit of pressure and dizziness- I had worn glasses the day I noticed it (I am usually in contacts) and simply put it off to my glasses prescription being stronger than what I was used to. I remember being aggravated by florescent lights, but not knowing why or how. Then, I started having MDDS-like symptoms (with no head pain): just internal swaying, we know the drift. My GP said it was VM, but I didn’t listen to him (because, of course, it had to be something much more dramatic, correct? Needless to say, VM can become dramatic enough on its own). I was still able to function, albeit I was constantly exhausted and had a few panic attacks (that I didn’t really realise were such).
However, with time, my VM got worse (of course). My head was hurting, bowling ball, I barely left my room, stayed in, and always-- ALWAYS-- wanted to sleep. I did an MRI (came back with a few lesions but radiologist deemed them to be not warranting any attention). I saw a neurologist who said that my MDDS like symptoms were a result of central sensitivity syndrome-- that my brain had essentially gone haywire and needed to calm down. He prescribed propranolol, which I tried for three days, but I had some bouts of tinnitus with it and decided to stop.
In the past week, my VM shifted from vertigo/swaying inside me to feeling like the room was swaying, or shaking, and some ‘falling’ sensations. I think the scariest thing bout all of this is the social isolation-- the inability to explain to others the thing that you feel. Of course , they can’t understand. How could they? I know, of. course, that some people think that I am making these up (especially as I have suffered through a break up two months before the VM started).
I have an appointment with Dr S lined up (almost seems like a rite of passage, no?) and am now on 10 mg of Ami as per my GP (for the past week). I am exhausted, and scared, and extremely sad. I feel robbed, but I also am not surprised that this happened to me (and I wonder if any of you feel this way?) I think I also had undiagnosed depression before this VM came to light, albeit not severe at all.
I am also trying to see this experience, in the ways we all do, I think, as a learning experience. I am going to do everything I can to get back to 100%-- or, if not that, 90%. I feel lonely, but I also feel lucky that I can share my story and feel heard by people who know that this does to you. Who you are as a person, the way you interact, and view life. My symptoms are getting ‘scarier’ and scarier but I think that fear is a poor friend to listen to.
I feel blessed that I can still go out (for now), and take walks, and see friends, even. if it takes every inch of me. I hope I will be able to go through this, and more importantly, to learn what it is that VM can teach me. We are, after all, our bodies: if VM is a monster, then I am a monster too. I know the road is not easy, and if I could I would definitely choose not to go through it but we never really get that a choice do we?
Sorry if I waxed poetic but, if I cannot control this migraine (for the time being), I can at least try to control the narrative through which I experience it.
Thank you for listening.