Migraine

Did you feel very alone in the process? I do? Will this get better? My primary doctor is hard to see, I have only seen my neuro once and my family keeps saying "you need to get these headaches under control, your kids need you". Adn they do and I need them. I just don't know how to get them under control?

quote:

Originally posted by Darcy:
Did you feel very alone in the process? I do? Will this get better? My primary doctor is hard to see, I have only seen my neuro once and my family keeps saying "you need to get these headaches under control, your kids need you". Adn they do and I need them. I just don't know how to get them under control?

I know I did. Once I found the old forum, I was so psyched to have a safe place to go to read and see that there were others like me out there. People at all stages of the game. Yeah, it's lonely when we're the one curled up in pain- I agree- sometimes, that's the worst- being in such pain, and even with someone holding you, you still can feel alone...

But at times like that, now I know to come over here and ask for help. I remember when hearing the word "migraine" and it being slapped as a dx on me would freak me out. But, thousands of dollars, and loads of education later, I have a neurological disease... and that's just the crux of the situation.

Does that help at all?

Darcy,

Alone? Sure. I've heard the same things you mentioned from my family and friends as well. (I have four young children.)

The bottom line is you are not alone. If you ever feel that way, come here and we can remind you.

Liz

Hi Darcy!

You're not alone--You have us!!

Come here to talk, read, or just relax...the people here really do understand and want to help!!

I know how hard it is to be a good mom and a migraine/headache sufferer at the same time. I have two little ones, and I fight with guilt a LOT! First and foremost, your kids need you to take care of yourself...They need a healthy mom!

Please don't get discouraged. Keep looking until you find a doctor who is knowledgeable, patient, and interested in truly helping you. And remember, there are hundreds of different medication combinations out there! Keep working hard until you find one!!

jenny

I know I felt alone until I found this forum, even though I'm fortunate to work with many people who have or have had migraines. You just hate to go around complaining all the time.

I was enrolled in a "migraine management" program through my health insurance, and that helped; I really found most of the "health coaches" I talked to very supportive, even though I really couldn't make much progress through trigger management (my major triggers are hormones and heat/sun).

But this forum has introduced me to many people whose migraine disease is more disabling than mine. While I'm sorry those people have to go through so much, the perspective helps me. I've visited the forum nearly every day since I registered. It's something I really need.

I'm one of the lucky ones with enormous support from my husband, my mother in law and my kids.

I'm lucky that my daughter, at least, was old enough to understand (and then shortly after started her own migraines, but that wasn't lucky.) My son has never known anything else but his sister keeps him occupied when I'm down.

My MIL has them terrible, for as long as I've known her. My husband learned from her how to act and take care of me.

My primary doctor was very understanding and sent me immediately to a wonderful headache clinic.

But, as the others have said, come here when you feel alone. We may not be people in real life for you, but we understand.

Sure, but it was an isolation by choice, more or less. Several years ago, when my migraines went rampant, along with severe hyperthyroidism, I became so sound sensitive that I would feel sound as much, if not more, than I heard it. I would also become overstimulated very easily. It was very isolating, in a way, because whenever I could I would hole up by myself, away from as much noise and stimulation as possible. I spent quite a bit of time holed up down here with the computer, where there wasn't a lot of background noise.

It can indeed get better, once you find a treatment regimen that works for you. Even though I'm still sensitive to sound during a migraine, it's not nearly as bad as it used to be. And you do have us, so you're really not alone support-wise, either. It will take time, hard work, and an open mind to treatment options, but we're here to help you along the best we can. You're not alone.

Even though my migraines are pretty well handled at the moment by medication, there are certain triggers that even my medication has no chance against them. One of these is smoke. I feel isolated from my friends because at the end of a stressful week in graduate school, they all like to go have a drink. I can't go with them because the smoke in those environments immediately sends me into a spiral of pain. I know that to them it probably sounds like an excuse that I "might" get a "headache" (especially since I don't drink). They "understand" to an extent, but a lot of times they just don't ask me to hang out. My best friend (who lives 4 hours away) is walking the same path, so I constantly have a shoulder to lean on (through email and phone calls), someone who understands exactly what's going on! Unfortunately, we don't get to see each other as often as we'd like.

My mom is wonderful, a fellow migraneur. She is very understanding and constantly monitors my progress with my treatment. My father doesn't understand really, but he just wants me to feel better. My boyfriend is understanding and knows exactly the environment I require when I fall ill. He also handles my crazy moments pretty well.

So yeah, isolation from my friends is really depressing. But having a best friend and a mom who have migraines as well really makes the walk less lonely.

If your children are young, they will not understand now. But I hope that one day they realize how hard you worked to get rid of this to be there for them! I know that personally I'd take a migraine every day of my life if it meant that my mom never had to have another one ever again.

One of the best things about finding the forum was the reassurance that I'm not a freak of nature, that others are going through the same things I am. There's always someone who has been through something similar.

Your kids need you, but you're doing all you can to get better. They'll do fine. I started on preventives when my son was 2, so he doesn't remember a Mom that wasn't dealing with headaches and migraines. He missed karate classes when I was down and couldn't drive, but he's 21 and has turned into a very pleasant, responsible young man.

You're never alone. I come here to whine when I'm feeling sorry for myself, and I'm always comforted. Lean on us. We're here.

Gretchen

Darcy,

How I understand feeling alone with the migraines! Oldest daughter & I started down with them when she was 11 & I was 41. Our PCP was pretty good, but our first neuro wasn't. My inlaws were not good at all.

3 years ago, we switched neuros, after going without a neuro for 2 years. I'm under control, Kat isn't. Kat has other issues she won't address - long story.

Finding this forum (& the one before it) has been a godsend for me. I now have answers. I am now educated about migraines. I am looking forward to the (inlaws) family reunion this weekend as an educational opportunity instead of a torture trial.

My youngest daughter was 4 when all this started. She doesn't remember when Mama wasn't sick. She also doesn't remember when Mama worked full-time. (I'm now a Teaching Assistant and have summers off.) Sallie is also the only member of my family who is not horse-crazy. She'll live.

So, keep coming here. We understand. We'll bouy you up. We vent to each other, laugh with each other, cry on each other's shoulders. This "family" helps keep me sane.

Rebecca

Oh Darcy. Please don't let that pressure get to you. You are A victim
Not A participant. Yes people need you, Yet you need support also. It's just A headache, Can't ya just take A couple aspirin? Wish I had A dollar for everytime I heard that statement. Out of all the people you know find one that understand's. Ask them for help. You need help dealing with the pain, You need someone to help explain you'r condition. If you'r having A Migrain it's very difficult to deal with the outside world. You need support. You have it here no doubt about that. As much as I wish I could, I can't be there to face you'r family. Somebody has to step up to the plate for YOU. I've lived the Migrain life for many year's. It really get's to me to think about people going through this agony. Do as best you can Darcy, But you can't do it alone. As I said you have it here for sure. If that's all youv'e got for A while, Then use it. Be assured you won't be turned away. I get pretty passionate about this subject. There's A reason for that though. I don't come to this forum for fun. I come here because I, Like so many other's truely care. I live it everyday of my life.

Darcy,
You are not alone! I agree, it is so isolating during a mig. I endure 3 or 4 days a week but on my "up and about" days, I spend as much time as possible with my DH and 3 kids. My children have only known me as having this condition and have grown to become more passionate people. My 16 y/o makes sure I am feed and watered; my 14 y/o helps with my 8 y/o and my DH makes sure everyone is productive. They all give me love and hugs through my tears.

I agree, the children need you well...keep trying for preventative meds (I keep on trying); eventually it will get better and more manageable.

This online family is a great family to have! I don't post as much as I could, but I read it all the time!! It is a great feeling to have knowing you are never alone!

Pain free days to you and everyone else!