Hi Guys n gals,
Does anyone here get the aura in your vision (scintalating scomoa or however the hell its spelt!) before a big bad killer headache??
And if so, have you continued to have these types of aura when you started experiencing the dizzies?? :?
I’m really suffering in this current relapse and it seems something has changed in the pattern of how I am since I’ve been back at work. Yesterday I had what I’d call my ‘normal’ migraines I was having before this MAV stuff hit… I would get the aura in my vision of zigzags, etc etc, and then 20mins later, the headache would hit. However, I have not had this aura since May 1st which was barely a few days into the start of my MAV issues… Because I hadn’t had it in all that time, I concluded that was because my brain was now following this chronic status and was permanently sort of in ‘aura’. Pre May, I would have this classical auras about 3 times a month!
So the fact I suddenly had the classical migraine with aura yesterday for the first time in 5 months has realy thrown me… Anyone know why ths would happen?? One difference occured this time though however… straight after the vision issues left me, not only did I have the classical crushing headache but also was majorly dizzy- the dizzy factor has seriously ramped up.
Sigh… Im rambling. Sorry, I just have no one else to talkto about this, I think my colleagues think I’m mad. I fell asleep on a couch at work today for half an hour… Pretty… not. Someone should invent something that shocks you into waking up if you fall asleep in public, mouth open, dribbling…
I actually had my first migraine with a visual aura since I started with MAV. I’ve had migraines for over 25 years, and although I get a lot that are the same, I always occasionally get ones that are different (e.g. once I had one where my speech was affected and what was coming out of my mouth was totally different to what I was saying in my head, but I never have had that since). I’ve only had two migraines with a visual aura and both have been in the last year, and both when I was on migraine preventative medication that was generally working pretty well. The weirdness of migraines never ceases to amaze me…
I used to get the scotomas all the time which were my warning. Then the patterned changed the last 10 years or so where I would get other sensory aura (smelling weird odors, numbness, tingling) prior to the actual headache (or lack of headache - sometimes I get the pain, sometimes not). When the MAV started last July I wasnt getting scotomas at all - just extreme dizziness and ear ringing. Then THIS July had a 3 day run with scotomas out of the blue! I also had one last month. Nothing since. It seems to be very random - I can’t see a pattern at all. Migraine is SO weird!!
I get scintillating scotoma (but what follows is a rotten hangover feeling, but not headache). That’s what I got, to the exact same script, for years and years and years (maybe 2 - 4 per year). Then MAV.
During chronic MAV I continue to get scintillating scotoma migraines, probably more than non MAV times but really, not significantly more.
What my neurologist has told me is that migraine DOES change over time. We just have to roll with it - expect the unexpected. My rule of thumb now is that if I feel crap (weird crap) and can’t find another explanation, it’s probably migraine.
I agree with Vic. Migraine does change over time and any weird crap that I get now (lately it’s been LOTS) I pretty much chalk it up to migraine.
My visual migraine auras and classic migraines disappeared when I developed MAV. When the ami starting helping the dizziness I got my first classic migraine with a 20 min visual aura in years. It was as if the migraine was tranforming back to what it was originally.
I had vision auras when my hormones were at their wacky worst: once during fertility treatment I had a ten minute colorblind aura, and then years later during perimenopause I had a few tunnel vision auras - it was during the first tunnel vision aura I ever had that my first severe dizzy spell hit me, and my MAV journey (or should I say, bad trip?) began.
This does highlight something that may give someone some hope: since I started on Topamax, even the low starting dose of 25 mg, I’ve never had tunnel vision again. It could simply be that the hormone rollercoaster wound down, and the trigger that was needed to push me to having auras was gone. But it could also be that the Topamax stopped the auras, because my severe dizzy spells stopped early on in the treatment, while the mild and moderate dizzy spells did not stop at 25 mg. It took awhile to get up to 100 mg, and then it was after 3 months of being on that dose before the daily wobbliness and head motion intolerance stopped. I later had some breakthrough dizzy spells and minor head motion intolerance, and am now at 150mg, with pretty good (not perfect) symptom control. My life is SO much better now.
I have visual auras - and numbness and speech aphasia that are my migraines. I actually don’t get the headache. My aura cyles through each thing and lasts for about 60 minutes in total. However after starting the verapmil I did have what the neuro things is an aura and it was just blurry vision (I say just bc I actually would rather have that then the blind spot and all those zigzagging strobe light things that I get). The blurry vision lasted for about 20 or 30 minutes maybe… so for me it does seem like things are morphing…
MaryAlice - I am probably perimenopause now as well and my auras went from happening every 2 years to about 6 per year when I hit 42. Now they have decreased back down to 2 or 3 per year but this MAV has hit… So if you are on topamax now did you not find that things cleared up after menopause?? Although I am probably a few years away I have really been hoping that that would be OUT from this horrible thing. Did you try other drugs before topamax??
Glad to hear it has worked so well for you!!!
Topamax was the first drug my doc gave me for MAV. I didn’t know I was a migraineur before the dizziness - I thought that one colorblind thing several years ago was maybe something wrong with my eyes, so I went to my eye doc who found nothing (of course, because there WAS nothing wrong with my eyes!). I’d had headaches, but always thought they were “sinus” headaches.
I tried backing down from 150 mg to 125 mg earlier in the year, but I started having fairly frequent mild dizzy spells and head motion intolerance again. (At 150 mg, I’ll still get headaches and an occasional brief, mild dizzy spell or bout of head motion intolerance). I’m clearly not done with migraine headaches or dizziness, so I’m sorry to report menopause hasn’t ended it all yet. However, I think I read somewhere that there can be some hormone simmering down for up to four years after your official menopause date (one year after your last period), and I haven’t gotten there yet. Maybe I’d never get a visual aura again if I stopped Topamax, but I don’t want to stop it now to find out. But after my four years are up I may try again to go down to 125 and see what happens with the headaches and dizziness, in case they are mostly hormone related too.
I do have other triggers, though, so I’m not getting my hopes up (barometric changes, cigarette smoke, strong chemical odors, skipping meals, etc). If the hormones are the big monster trigger, though, maybe the other ones won’t matter as much. I can only hope…