As some of you guys know, I myself do not have this but my mom was diagnosed with vestibular migraine or migraine variant of sort. Therefore, I do not understand what an aura is… I’m not quite sure if she herself knows?
Can some one describe what an aura is? She describes a weird sensation as if like energy (?) is leaving her body with weakness/numbness/coldness of the upper arm, leaving her weak. Does this sound like an aura? Can aura happen multiple times a day?!
It’s been theorized that VM/MAV/Migraine Variant Balance Disorder is a more or less chronic migraine aura. I have brain stem aura migraines (BAM) so my list of symptoms includes more than most MAVericks’. Here are some of my aura symptoms:
Halos, refractions, arcs
Bright pulsing lights or portions of my field of vision
Rotating barrel vision
Full ears with crunchy sounds
Photo, audio, olfactory and tactile hypersensitivity
Numb face, tongue, pallet, hands and arms
Migraine babble, aphasia
Loss of consciousness
Purging (both vomiting and diarrhea)
Out of body sensations
Electric shocks and muscle twitches
Wow… do u feel this constantly?
No, lately it’s just occasional bits and pieces of that list and for the most part only mildly. (Except hypersensitivity. That and intense visual snow are constant. IBS is frequent.) I have had them all simultaneously and in full force during a brain stem aura that lasted a week. That particular fiasco added several other features as well (the conspicuously missing pain aspects of migraine). For a year I had most of that list going on all the time to varying degrees.
Aura is strange. You can consistently get the same symptoms or sometimes get some but not others or get some novel mix. Brain chemistry is complex and it’s actions on the central nervous system aren’t always predictable. Migraine is a global disturbance of the sensory input system. Pretty much everything is on the table.
When people mention ‘aura’ with respect to migraine I always think of the visual stuff - hallucinations I suppose they are really - that migraineurs experience in the early stages of an attack. I worked with two women both of whom always had the same visual aura at a certain point before an attack. Each was different but theirs were consistent to them and after many years they both knew exactly how long they had to get to their safe space. This was years before I knew I was one myself so I was always impressed at migraine’s apparent civilised approach. How wrong can one be. I was surprised to see you list all your - what I would call - ’symptoms’ as being part of an aura. I did read that some ‘experts’ believe the constant 24/7 dizziness is an extended aura but think this has recently been discounted. Until more research has been carried out not a lot is known and it’s all a matter of individual opinion. Helen
i used to get weakness and tingling in legs to add to that list, and ataxia (poor coordination) during attacks
I get that, too, but I couldn’t remember the word for it.
do you guys have sweating as well? is sweating normal?
Normal? MAV’s conception of normal is pretty skewed.
Yes, we have sweating and it’s common. MAV likes to pile on the minor indignities.
A lot of that stuff is aura for me, as in accompanying or preceding more classic migraines. We could add inattention. I managed to run a red light today. Fortunately I didn’t hit anyone. I was too foggy even to react. That could have been awful. I got lucky and parked the car a while. Today’s migraine features brain fog, nausea, dizziness, diarrhea, ataxia, body aches, numb extremities, aphasia, fatigue and chills. Plus a 7.5 hour drive. And good God if the whole damned world isn’t overexposed, loud and stinky today. I see a nap at a rest stop in my near future.
Wow, these are interesting lists. I’ve had visual scotomas daily for years (vibrating zigzag lines). I’ve recently had issues with tingling numbness which travels around my body along with muscle weakness and ataxia. Managed to stub the same toe three times in one week, sprained the toe on other foot, cut myself twice on kitchen knife, stumbled repeatedly on brick sidewalks.
The neurologist at my local community hospital seems bored and dismissive. I believe I will see if PCP will hook me up with one of the migraine specialists at the Boston teaching hospital. I’d like to have a good long talk with someone knowledgeable about vestibular migraines and the many symptoms it can present.
Fire away. What do you want to know? (joke). Actually seriously you are probably already in the right place for that. You couldn’t find more expertise elsewhere.
Apart from questioning The Crewe have you read the ‘FAQ’ section under Wiki. Lots of knowledge there from collection of top US experts gleaned by a former forum leader called Scott who is a neurologist himself. Mind you I’m not suggesting you don’t get a referral to Boston. Some of US top bods seem to work out of there. Ask @rosjane who she saw sure she’s Boston. You are certainly vestibular and with daily symptoms- although I wouldn’t call them ‘aura’ - some treatment wouldn’t go amiss. Good luck with it. Helen
I don’t want to take this thread off topic. It’s a little learning curve for me, how to navigate this website.
Lots of questions! I’ve seen folks here mention diarrhea, IBS, cognitive. I have that but never connected any of that to the migraine variant. Nor have my doctors. Also the muscle weakness and in-coordination (a large part of my picture- two sprained ankles, one sprained wrist, about 5 fractured toes, cuts, bruises, all in the past 4 years alone). I’ve always known that exposure to perfumes, glues, paints, any kind of fumes sets off muscle weakness and in-coordination. But never associated that with migraine. And none of my local doctors have either- including Neuro at local hospital. She acts like it’s some kind of psychiatric issue. It took the Boston ear doctor to make the migraine diagnosis. And that diagnosis until recently was ignored and probably discounted by my local doctors.
When I developed burning in my fingertips and toes it was quite clear there was an association with gluten consumption: in my case a very direct cause and effect. However, now I’m well off gluten and have developed new unusual numbness. A fluttering numb feeling, travels around my body. Accompanied by weakness. Again, these symptoms are met with skepticism from local docs. I’m woozy much of the time, I have outrageous flashing lights in my vision, even with my eyes closed! It can keep me from sleep at night. My home, an apt in large complex, has 25 “Smart Meters” next door. All of which send electromagnetic pulses all day and night. I’m sure it is effecting me. No one but the Boston ear doc gave this any credence. When I stay at the home of a relative, the crazy flashing lights subside.
This is why I want a good sit down with a true migraine specialist. Im mad. I want answers and I want respect.
Anyone recommend someone good in Boston?
Hm. So perhaps this weird feeling she feels may be an aura or it could also potential be a symptom of MAV (?). She describes feeling of “energy” leaving her body and then she would have weak/numb/cold upper limb, fatigue, and I guess that is followed by head/neck pressure (?) - she is not very articulate and has a hard time describing her symptoms (likely because they are so bazaar). This can happen multiple times in a day to varying degree but on “decent” days less.
Interestingly, my mom also randomly has diarrhea for seemingly no apparent reason what so ever. I’m not sure if she was ever officially diagnosed as having IBS however, she is EXTREMELY sensitive to food and has been this way ALL of my life that I remember. She can’t tolerate many foods and I guess some how unknowingly avoided foods that were a “trigger” for her w/o knowing that they were linked to migraines. She also cannot stand perfumes/smells.
Please do a search on, I don’t know, ‘boston doctors’?
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