Questions for the Silent Migrainers

Hi Everyone,

I want to know who at this forum are the Silent Migrainers like myself and how do you describe your condition to a friend, co-worker or family member?? I think of myself as having a “Migraine Equivalent Condition”… but i generally don’t have the excruciating pain or Aura. Yes…on occasion i have the run of the mill Headache but nothing severe. My symptoms tends to slant toward occasional Vertigo, Rocking Motion, Motion that feels like it’s in the head, + Tension and or Squeezed like feeling throughout my head. I realize were all different and will not have all the same symptoms. My 2nd question… Over the years how do you generally describe to someone your symptoms? I usually tell them that “It’s like a migraine but without the severe pain”…and “It brings on more Motion rather than Pain”. When folks here me describe this condition…most of them look at me like they don’t quite grasp what i’m trying to say. Luckily, there are a few who…even though don’t understand …empathise.

Thanks…

Joe

I now say, in a clear, confident voice, while looking them in the eye, “it’s ‘Migraine Associated Vertigo’ and it’s bloody awful”.

I’ve started to find people have either heard of it, think they’ve heard of it, or pretend they’ve heard of it, as I say it so definitively, rather than my previous ‘oh, er it’e er, not really sure, er, a bit weird, like a migraine but dizzy’ which tended to elicit looks of confusion, ‘you mean stress then :roll: ?’ etc. etc.

Some people are even quite interested.

DizzyIzzy

I don’t go into too much detail for the most part. When I do say something I tell them I’ve been diagnosed with vesitibular mirgraine which is a migraine with vertigo instead of the headache. And that it is probably one of the worst things I’ve had to endure. Severe vertigo lasting 4 or so hours (until the meds kick in)in which I can’t even move a millimeter. In between times I feel constantly motion sick. So far I haven’t found anyone who has heard of this, even the regular old migraine sufferers. I don’t like to talk about it too much because when I do I tend to start feeling more motion sick than normal.

Joe,
I normally say , I have vertigo caused by 24/7 migraine
Personaly I’m over explaining it to others who could never understand, it’s a waste of my breath.

If I could be bothered to explain I say I have Vestibular Migraine which means my symptoms are not your traditional headache but rather dizziness/disequilibrium.

I would describe my problem as ‘disequilibrium’ and not vertigo as i have never has a spinning sensation but a 24/7 sea sickness almost. the ground is simply no longer flat to me. I constantly feel as if I’m walking on a unstable surface a lot like a trampoline. Does anyone else feel this way??

My bloody brain knows the ground is flat! so why the hell do i get this TERRIBLE sensation that it’s not?

Hi Ella,
When I had my " bad " months last year I felt exactly like you. Like I was walking on a boat all the time and like I had no idea how far there was from my head to my feet , or how far away the ground was from my feet when I was walking.
I usually tell people I have migraine with no headache but continuous dizziness , like I am on a boat in a fairly rough sea. I find the boat thing helps people to relate a little to what I was going through.Most people then say something like… try not to think about it, like it will then go away. At that point I change the subject as I realize there is no point in explaining !!
They then ask me how my headaches are next time I see them , so I then have to start it all again.
And a few precious people are wonderful about it and really try to understand . But only a few !
Penny

— Begin quote from "ella85"

I would describe my problem as ‘disequilibrium’ and not vertigo as i have never has a spinning sensation but a 24/7 sea sickness almost. the ground is simply no longer flat to me. I constantly feel as if I’m walking on a unstable surface a lot like a trampoline. Does anyone else feel this way??

— End quote

I do have the 24/7 sea sickness feeling, it’s not pleasant and it is made much worse by so many things, but it’s not really a trampoline feeling to me. It is more like a carsick feeling inside my head. The only time I get the trampoline feeling is when I have severe vertigo or am seconds from it. Once in a great while I will get it without the vertigo and when I do it scares me because I think an attack in coming. I’m sorry you have to feel that way. :frowning:

Ha, ha, “try not to think about it.” Gotta admit, that made me laugh a little Are they serious? Can one really not think about this if it is there 24/7? I wish I could not think about it. I wish it wasn’t on my mind with every little step I take. I wish I could go grocery shopping without having to stop every few feet and pick up some box and read the label just because I need a few seconds to stabilize myself. I wish I could go to a restaurant or someone’s house and eat anything I want without thinking about it.

There is one girl I work with who tries to understand and every few months she will ask me if I’ve had any more spells of unconsiousness. And I have to explain to her again that I don’t lose consciousness but I get terrible vertigo spells in which I can’t move at all. But at least she tries too understand.

Thanks to all of you for your valuable input regarding Silent Migraines. Dr. Baloh at UCLA in 2007 diagnosed me with MAV or he used another term called… “Migraine Equivalent”. Actually…i’ve made a decision and decided…for now on if someone asks me what i have i think i’m going to say “I have a Vestibular Migraine”. If they don’t quite understand…i will give a little more detail and then i will be done. :slight_smile:

Joe