Too much spinal fluid that causes migraines. . just the word "migraines" is enough to make people understand how much it sucks.

I usually say I'e got a neurological condition which causes migranes and vision problems, among other things.

I tell them I have chronic daily migraines. If they dig for more info I tell them it's caused by a disease that causes high fluid pressure in my head.

So Sea,
You call it a disease. That is one thing I needed to know.
Randie

I say I have a condition that causes really bad headaches, an that you can go blind an to much spinal fluid on the brian.

My daily answer is: "If you have ever had a migraine, imagine it consistant and most likely worse due to spinal fluid If you have any other information google it.?" I know how you feel I have been doing the same thing since I was twelve, about five years now.

I have found that by telling people its just a condition or illness they don't take your condition as serious. Even thought calling it what it is.. a disease sounds scary, it also sounds scary to them and they take u more serious and not just look at you like a whiny butt when u complain of the numerous things we suffer from.. I tell people how it is.. I have a disease in which I have too much spinal fluid. I keep it shirt unless they want to know more.. but I do not sugar coat it. I do not want speacial attention but I will not be pushed under the right at say work for just a measely illness or condition. It is an incurable disease unfortunately

I eventually had more than one pair of eyes on me at work that took notice that something was up, I'm not sure why really, what they saw or whatever...I've been asked jokingly if I was on drugs but it did hurt. I didn't have a diagnoses at all.
I don't even ask why anymore when questioned if I was ok or anything...I even had a lady at Walmart approach me once to tell me she was a nurse. I don't remember what she said about why she did that but I do just remember saying I had a migraine though I didn't at the time know wth it was I just wanted to get my crap and get out of there.
It's a bit embarrassing actually to have something going on inside that I don't feel like talking about but people can see it anyway.

I just tell people I have a neurological disorder and leave it at that.

Imagine working with nurses and being a nurse and still no one knows what this is, IIH, Pseudotumor cerebri.....until I would just say neuro condition and migraines. I talked to one of my NP friends and told them IH and he said...OMG that's terrible! Did you need a shunt? How's your head pain? I hugged him and let out a tear. He knew. He understood.
That's the problem with rare, invisible disease. No one knows...and you don't want them to pity you, you just want so bad for someone to understand!

Yes ladyhorn you are so right. I have yet to find one.