just sharing....

When I am in the most severe pain I feel the strongest need to be connected. I lie on the sofa with my laptop beside me and use one finger on the keyboard. Mainly on this site. People may wonder how you can be on the internet when you are in such intense pain. Well, that is how. The need to be connected is strong. There is a lot of fear involved with migraine. People do not usually talk about that side of this disease. I am very thankful for this site. It is pretty much the only connection I have. Having someone over is not an option when I am at my worst. This whole situation is terrifying. This is something the professionals do not speak of. I have heard anxiety talked about on this board. But not fear. I think it is a very important part that needs to be addressed.

This site is very important to me. I come to it when I'm happy, sad, mad...it's family.

fear is definitely a huge factor for me. Most of my fear happens when I have a good day - I end up worried about when the next migraine is going to hit or when the pain is going to increase. This probably makes my migraines worse but I always have those thoughts in the back of my head.

this is really a touching reply... I see there is only one other reply. It seems this is not an issue for most. surprising...

I have to check in here.

Nobody understands what I go through except people who experience the same thing.

This site is a nice respite from the pain, physical and mental.

I think the anxiety of not knowing when and how bad the next one will be is the worst for me and if the daily head pain will turn into a true M. Gee, do I take meds? Will this turn into the beast or will is stay at a 2-3 and be routine head pain?

I seem to live in a constant state of anxiety about if I will be able to keep plans, if I can take this med or not (or end up with MOH/rebound), if the meds will actually work (triptans dont really work for me), if I'll be stuck somewhere with the worse M ever, if I will have to go to urgent care AGAIN, etc..

Then, there is the fear and anxiety of really feeling alone with this disease, when you in the most absolute pain. Even if you have the most supportive people in your life (I have an amazing husband), they really do not know what it is like to live with this. At least my husband sees my agony, my friends, who are mostly sweet and supportive, really don't get it at all. My family I am not close with and are clueless.

So, I although I have mostly been a lurker for the past years and do post occasionally, I do come here alot to get comfort so I know I am not the only one dealing with this.

I often look in my local paper for a "migraine support group" either at the local hopsital or community center and I have never seen one. There are many for lots of other conditions. Sheesh! I mean, I wouldn't be able to go when I was migraining, but at least to connect with people locally so to have someone to talk to, that would help too.

It makes me feel that, once again, we are invisible, and not really considered to have a "real" disease and it really affects us and the anxiety we feel every day.

Nice to vent with all of you.
May we all have some pain free days.
Peace,
Jane

...we are invisible and not considered to have a real disease...... yes, why. This is how I feel as well. In my area there is no support group for migraineurs either. Nor, do I ever see a show on tv about migraine. everything else but not migraine. It is as if it does not exist. It is no wonder we question ourselves and have such low self esteem. I think we need to be acknowledged. Even the doctors treat us poorly. at least that has been my experience.

Gail

I seem to go the other way. I become fairly non communicative when I am in pain. Just can't formulate thoughts into sentences. I mostly just want to put a pillow over my head and block the world out. I do find the forum a very useful source of information and support though, with or without the headache.

I don't think it's that we are invisible exactly. It's just that by the very nature of our problem we aren't up to making much of a fuss. So it's easy for our troubles to get overlooked or underestimated by others. Its not fatal, just chronic. And then there is the problem of no easy fixes. So it's easier for this issue to be out of mind for most. I think that is why it is important to be able to band together in a forum such as this, where you can drop in when you feel up to it and it's not hard to get there.

M

Totally understand where your coming from Jane. Its the fear that I'm hoping the phsychologist I'm seeing will be able to help me. Maybe a long shot but worth a try. I was totally surprised to find it so hard to find a support group. Its like they don't exist. I thought it would be such a common thing yet so hard to find. I'm very glad forums like this exist.

I can honestly say though I didn't understand the true impact migraines have on our lives until early this year when I developed them. I've known the odd person in my past that had migraines and really just thought it was a bad headache - wow was I so wrong. Its true that you really don't understand until you've had them yourself which is why most Drs are useless (broad generalisation I know but none of them have been of any help to me). They simply have no idea.

Part of the fear for me is - what if this is all there is? What if I never get relief? After 40 years and trying everything, I guess it's pretty hopeless. I still try everything that comes along though, just in case.

There was a migraine support group starting in my area. I called the organizer several times but could never make it to the actual meeting because I always had a migraine. I guess that makes it a little challenging to have any support system. She finally gave up because no one could make it to the meetings.

at night even when she was having migraines in her early-mid teens. Sometimes fear seemed like an aura or symptom of the headache.