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Do you have "Migraine"???

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Post  pen Mon Feb 15, 2010 4:47 am

Prompted by an article in our paper.
The world is told we have migraine because.

We have one sided pain nausea and sickness.
We get any time from one or twice a year to once a week.
We get flashing lights before it occurs.
We treat it with a "special" OTC paracetamol compound and special wonder drugs called Triptans.
We lie in a darkened room. In 4 to 24 hours we are all better.

I just wondered if anyone actually fits this profile and what we can do to get it changed.
It irritates the life out of me.

I get one sided pain, I get no warning. I never vomit and seldom feel nauseous. No lights. And as for a darkened room, I have trouble keeping still and would have to be dying to take to my bed because it feels so isolated. I would be there every day.

Sorry, is this a rant....apologies.

pen

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Post  Ivy Mon Feb 15, 2010 6:15 am

A very very very summarized version of migraine, the list should be one mile longer Mad

Anyway, just to comment the points:

We have one sided pain nausea and sickness. - OK, I relate
We get any time from one or twice a year to once a week. - Actually up to 5 times a week in bad times
We get flashing lights before it occurs. - NO; only migraine with aura causes visual disturbance, I have no aura but I am a genuine migraineur
We treat it with a "special" OTC paracetamol compound and special wonder drugs called Triptans. What about the other 1,000 anti-inflammatories and ergots???
We lie in a darkened room. In 4 to 24 hours we are all better. - I wish it lasted only 24 hours without abortives...Mine can torture me up to 4 days
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Post  pen Mon Feb 15, 2010 6:50 am

Thanks Ivy.
What chance do we have of even getting our "friends" to understand, let alone the rest of the world.
I have given numerous interviews via paper, and radio and put the record straight, but still this is how we are represented in the media. No wonder people offer platitudes....

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Post  rileyoday Mon Feb 15, 2010 9:29 am

I think alot of the public thinks that is M. They dont understand.

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Post  LG Mon Feb 15, 2010 9:31 am

I see a lot wrong with those statements. In fact, in rare cases not all migraines are one sided either. I know, crazy..but I did come about that a couple of times in my research. I would write them an article on their article..
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Post  alli Mon Feb 15, 2010 9:34 am

it is rather annoying to have migraine reduced to such a short and inaccurate list. I used to get an aura with an attack that at least worked as a warning. Now I rarely get an aura or a warning, just a migraine attack. Yes I have one sided pain and no they rarely last as short as a few hours. It is usually 2-4 days, sometimes longer. Or one attack after another for several days.

Umm I'm allergic to triptans. That doesn't mean I'm not a migrainer. And I get attacks as often as 4-5 times a week. More often when the weather changes a lot as in winter, spring, and fall. My best time of year is summer, unless pollen counts are really high, then all bets are off.

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Post  HeelerLady Mon Feb 15, 2010 10:29 am

What I will say of the list....when I would get them every once in a while, yes that described them pretty well (the aura thing, well that's the exception, I rarely have a "classic" aura but sometimes have visual issues but not all time). Usually lasted one day and then things were better.

Now...well not even close. Mine last 3 days with few exceptions and I can get them back to back (total misery). If they were so easy to cure, we all wish, then why do we have all the meds we do - they shouldn't be necessary. I think there is a lack of understanding in the severity levels. I would say that we are all severely affected while people that fall on their list are only minimally affected. I think this is the part that is missed - that there are levels of affection with migraines.

Alli - I hope you are right...I've been so miserable most of the winter and I hope it gets better in summer (I don't have allergies though). Smile

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Post  AuntieBubbs Mon Feb 15, 2010 11:39 am

How the world sees migraine is affected by much more than just a list - btw, where did you get this list, Pen? In what context? I've seen much longer lists like this one. But of course, I'm in the US.
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Post  pen Mon Feb 15, 2010 11:49 am

It is infuriating isn't it? Its not as if there aren't enough web sites, support groups, not to mention US to get the true picture.
Almost always when there is something its the darkened room for a day. All better, then back to work....

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Post  pen Mon Feb 15, 2010 11:52 am

Not a list Bubbs. Its a precis of an article in our local paper a few weeks ago...i was clearing out for recycling.
It was a basic article, but given they did an interview with myself a few years ago it struck me how they minimize our situation and havent learned anything..

I see these points again and again. It makes it sound rather trite by comparison to our real deal.

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Post  dizzyflower Tue Feb 16, 2010 5:37 am

Sounds like the one that my auntie sent to my mum, then my mum sent it to me. Did it also have in big letters at the top how much we cost the economy as if it was our fault? Or did a few of them have the same idea?

There is a new lot of adverts for one of these papers this week because they are doing a health section trying to make themselves look more important. So I expect more well meaning people will be phoning or emailing me suggesting I take some over the counter meds and walking a mile a day and eating spinach or something soon.

The bit that I hate about these articals is that you then get people telling you that you don't have migraine, or that you are doing something wrong in trying to treat it, honestly believing that one size fits all aproach will work because it was written in a newspaper.

best wishes

Di

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Post  AuntieBubbs Tue Feb 16, 2010 12:28 pm

Yes, it does simplify our condition quite a bit. I was wondering what the purpose of the article was, sometimes they have ulterior motives.
The darkened room bit always makes me laugh (ironically). i rarely lie down in a darkened room, no matter how bad the migraine is. I take my meds and move on, and ignore the migraine, unless its like a 8 or more. Of course, I just realized as I write this, I'm sitting in a darkened bedroom, with the laptop screen as dim as it can go... but I'm not laying down, being helpless. I guess that's the image I resent, that once a migraine hits, we "give up" and lie down in a dark room. We adapt, but we don't give up!
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Post  pen Tue Feb 16, 2010 1:40 pm

There was no real purpose Bubbs. There never is with these things. They just pedal them out every so often.
I just clipped it as an example. It wasnt meant to do anything. It just struck me, is this how the world sees us, and no wonder if that is the best some of the media can do.

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