Migraine

I am new here and approaching my 40th birthday. Like all people I wonder about things in my life I wished I could have done differently.

But one question that keeps coming to mind is: Who would I have been if I had not suffered from migraines from the age of 7?

As child/teenager migraines controlled decisions my parents made for me. Go to a sleepover party, no I needed regular sleep and low excitement levels. Go on overnight fieldtrips, no way. As other young girls developed social skills I became a loner. I wonder if it was my nature to be a loner or if migraines forced me to be.

At school I was the sick girl. I got sick and threw up in the restrooms. I had few friends. Most kids wanted friends who did not do gross things and attended school everyday. I missed upwards of 60 days a year... not including going home sick.
My grades suffered and college was not an option.

Jobs suffered from absences and low productivity due to migraines. How many times as I prodded through the day did I hear but it is just a headache.

Social activities, forget it. I went to a club one time. The noise, smells (perfume and cologne) and smoke sent me running for the exit within a couple of hours. The migraine was horrible afterwards.

So my conclusion is that migraines affected my social skills, education and career.
Migraine was a major contributing factor to Who I am today.


How have migraines affected who you are?

Migraine has made me more of a homebody.

Interesting that you brought this up today - I was supposed to visit a friend today. I had a horrible migraine yesterday and felt hung over today and was debating whether to go or not. My friend acutally cancelled on me and we rescheduled for next week.

I was very close to cancelling.

I bascially grocery shop, go to the bank, wind up at Walgreen's a couple of times a week to get something I need, go to the library and that's it. All within a two mile radius of home. I was so much more go, go, go before all this.

I'm ok with it. I have my work here. I don't know what I'd do if I didn't have this place to come to, that's for sure!

Hi AmyBeth,

I was technically diagnosed with migraine with aura when I was 17. But I was a sufferer long before that! I remember MANY ct scans, head xrays, upper and lower GI tests...I saw a stomach specialist when I was 5 and missed basically the entire 1st grade year because of migraine disease.

Fortunately, I did pretty well in school--even without teacher help. My parents always helped and I did the work by myself (no matter how lousy I felt). My parents also taught me to keep going and not allow my disease to rule my life. I think that's why I'm so determined to keep going today...It's important to me that I not allow migraine disease to win!

I often think about the ways migraine disease has changed my life (good and bad). BUT I prefer to think of the GOOD side of this whole situation:

Migraine disease has made me very appreciative of small, "insignificant" moments of together time with my husband and kids. Things other people take for granted are VERY special for me!!

Migraine disease has made my children into very kind, gentle, caring little people (they're 5 and 7). They are sensitive to people who are not feeling well and are very generous with hugs, kisses, and gentle snuggles. They are also more self-sufficient than many other kids their age--they can get their snacks and drinks, and occupy themselves quietly when necessary. AND they know when to call Daddy at work for help if Mommy is very sick!

Migraine disease has made me closer to my family. My Mom (who passed away a few years back), sister, two nieces, and son are all migraine sufferers. We talk often, share helpful info, and give each other a hand when things get tough.

Migraine disease has forced me to be an informed, assertive patient! I've had some crummy doctors in the past, and I've learned to ask for help when I need it and stand up to the doc if I think I need a better plan.

Sure, there are definite difficulties in my life because I suffer from daily migraine. I've had to take a medical leave from graduate school because I'm too sick to finish my dissertation. My husband often has to come home from work to help me--and that's very difficult in his line of work! A significant part of my family's $$ goes to my care and meds. I spend time with family and really have few close friends...Chronic pain does have a way of showing you who your true friends are!! Things would've been very different if I had better control of my migraines...

But think how many good things I would've missed!!!

jenny

I remember having headaches as a child... but no one ever called them 'migraines' until I started getting the aura before the onset of the pain. After college, I don't remember headaches per se... but I would have dark moods which, looking back, could have been part of what developed in to chronic daily migraine. I started looking for an answer to my headaches in 1996... and here I am 12 years later still looking for solutions... I'm way past thinking there may be a *cure,* but I'm hoping to manage it better.
For a lot of years I thought I was a hypochondriac. That certainly took a toll on my self-esteem. It was becoming a mother in 2003 that pushed me out of the closet, so to speak. I couldn't handle the pain and kids... that's when I found the Jefferson Headache Center.
How my pain has changed me as a person is that I don't feel as vibrantly alive as I could be without the pain. I feel like I am a sickly, moody, grumpy person with the pain when I know for a fact I am an optimist, a do-er of things, a lover of life. I really feel for my kids... they see me suffering and want to help. Without the migraines, I think I'd be much more carefree. The pain keeps my kite firmly grounded.

My migraine disease has affected my life in that I'm not as active as I use to be. I remember a time that I was involved in so many things that I was hardly ever home. Now, seems like all I do is go to work and then go straight home. My home is my refuge, my safe place. Luckily, my son is 16 years old and doesn't need me as much. But I still miss being able to do what I want when I want. My friends tell me that they miss me.

I feel sad that this disease has such a hold on my life right now. I use to only get a migraine once or twice a year. Now, I get a migraine attack 3-4 times a week. I feel like my personality has changed, too.

I try to cherish the "good" days when I don't have any pain.

Migraines has made me more of a homebody as well. I used to be the kind of person that was out and about, had a career at a vets office, now I work from home, dont get out very much, and my social life has resorted to quick phone conversations. I just never feel like going anywhere. My big "outings" is the grocery store. I have no energy, and my doctor said it was like a hangover, and suffering from basilar migraines I am afraid I will faint in public. I didn't realize how much it affected who I am until my last doctors appointment when my husband pointed out to the doctor that I am not the same person I used to be. It bothered me when he said that, and I put alot of thought into what he said, and he is totally right, I am not. I am fortunate he still loves me for who I am, then and now. This disease can really take a toll on a person emotionally as well as physically.

Migraines have obviously changed me. I have always been such an outdoorsy, active in sports etc. person. Always out playing with my kids. For years I used to only have migraines once or twice a month at most. They were enough to annoy me and not feel good once in a while. The last few years its gotten progressivly worse.

It makes it a LOT harder to raise the kids, getting them where they need to be, going to the park to play ball with them, and keeping my frustratins at bay! I get much more easily irritated at bad behaviours especially when I am in pain. Since thats several times a week... Its much harder on the boys. I try though to not take it out on them, and in the same token, they are old enough now to truly be a help, and understand when Im not well. It balances out well. In that sense, just like Jenny said, its a blessing in its own way!

One of my biggest frustrations is trying to plan things in advance. Here is my latest quandry: Every year there is a big white water rafting trip that my mom and her fiance and his family etc. set up. Most years I have been unable to go as it fell on a week where I had prior commitments etc. with the kids. Well this year they are SET that I am going! My mom and I love to do things together, and they have been dissapointed(as have I) that I havnt been able to go on the long raft trips.(last year was the Grand Canyon, this year Hells Canyon..)

We have gone on several day trips, but this is a week long thing. My problem is the what ifs I now have with all my migraines! What if I get a hemiplegic one? We are in the middle of nowhere, on a raft in white water! What if I get one that wont go away.. I hate the thought that migraines have to get in the way of life so much! I just wanna say YEA!! going on a trip!! and be done with it, but I cant. I am truly wondering if its such a smart decision to try to go. But on the other hand.. I want to say Im NOT going to get a migraine, IM NOT going to let this disease control my life!! I have to make a decision soon, as my spot is being held and not allowing someone else who may want to go be able to. any advice yall???

This is a really good question, and one that has really got me thinking(which is sometimes a scary thing!). My migraines have gotten progressively worse over the past 6 years, especially the last 2. I have had to leave a high paying, but high stress job because of my condition, which has caused me a lot of anger and sadness. Up to this point I had not realized how much my self worth and identity had been tied to that job(I had been there 9 years, had built a clientele, knew what I was doing, was successful at it, etc.). At this present job, it's lower stress but I'm the "new" person now, making half the salary I used to make, and feeling like a total loser. But after thinking about all of this, maybe I've actually learned something about myself that is more valuable than anything- the deficit in my soul , a spiritual issue in my opinion, which needs to be addressed. Thanks for the great question!

I think chronic migraines have definitely changed me as a person. For both the good and the bad, I have learned to try to accept the reality of pain, of being sick, of being knocked down in the middle of whatever activity I am trying to do.

As most of you, I have suffered with migraines for more than 20 years. I am 40 years old now and in the last 5 years, the migraines have intensified. I am more cautious, more irritable, less inclined to get involved so I don't get over-stimulated. I am also more understanding when dealing with others health issues, financial burdens, and stressors.

The hardest part is accepting this new person because it changes who you are not only to yourself, but to your spouse, children, friends, coworkers, etc. It makes you wonder if there is something more you could be doing to help yourself.

Nancy W

This is a difficult question for me to answer, because migraines are not who I am, just what I have, but that's not to say they haven't affected who I am.

The positive things: I'm very grateful for those close to me that I love and trust, because I understand how rare of a gift that can be. I value those few days that are low pain and have learned more to live in the moment and take things a day at a time. I'm learning to prioritize what's really important and needs to get done. I'm sympathetic to others with invisible illnesses.

The less positive things: it can be hard for me to trust others, especially about private issues, since I've been abandoned by too many "friends" at the times I most needed them. I have very little tolerance or compassion at times and am extremely irritable when I'm sick (which, right now, is all the time).

I feel sometimes like I live two lives - a public and a private life - and in my public life I hide my migraines as much as possible. Despite my daily migraines I still work a full-time job, and in order to do this a certain amount of denial is necessary. Right now my migraines are completely out of control, and I'm trying as best as I can not to let them control me. Do I succeed? Sometimes.

If nothing else I've really learned the value of those healthy days and loved ones who support me.

Boy, Momsbreak9 totally resonated for me! Before my unrelenting migraines (9 years continously as of now) began, I was the most high energy person you could imagine. Physically active, a swimmer, social, working as a professional ... my husband and I were always having fun with our free time, then we had our two kids and were busy with them and happy - then everything collapsed and I was dealing with being deathly ill and having to parent a 4 and 2 year old. It felt like someone raised a big sledgehammer and smashed my whole life, and my personality with it.

I think the most frustrating thing for me is that I still somehow FEEL like the old me inside, but every aspect of my life has changed, and my way of relating to people and the world is necessarily totally different. When I'm miserable, despite my best efforts, I cannot meet my own standards of good behavior - I'm irritable and perfectionistic and intolerant of slowness and generally difficult to be around, sometimes at least. Then I'm mad at myself about it. I'm also more of a loner than I ever was. It's just tiring to be around others, and I need to conserve my resources.

I have learned more patience, and more respect, and become more calmly assertive then I ever was. I have learned to humbly ask for help when I need it, and I'm way more grateful to others than I used to be. Because now - I can't do it all myself anymore. I also appreciate my children in a way that I might not have if I hadn't been sick. Had I waited any longer to have the kids, I would never have been able to do it, because of my medications. I'm so glad I have them.

The vacation question (the whitewater rafting trip) - I'm in no position to give advice, except to say "trust your gut". I have familial hemiplegic migraine, so I share your fear of having attacks away from medical help. My husband and I made a mutual decision years ago that we would not take vacations too far away from hospitals. We've also started building in contingency plans for illness. More importantly, I've started renting a mobility scooter for kid-oriented vacations. I would never have survived SeaWorld and the San Diego Zoo or a myriad of other "walk around all day" situations without it. I hate using devices - it draws unwanted attention - but it has made vacations way more pleasant for me and for my family.

Sometimes I just want to go on a camping trip like I used to, or be able to hike all day, or take a huge long bike ride ... and it bums me out. However, another thing I've learned through trial and error (that is, the stupid way) that I inevitably pay for my bad decisions about overdoing it. So, I guess I've learned to be more careful and planful and thoughtful. Not a bad thing.

I must say - I would never have chosen this particular path to change, though. I'd rather be the old me. I liked her better.

Lynne

quote:

Migraine disease has made me very appreciative of small, "insignificant" moments of together time with my husband and kids. Things other people take for granted are VERY special for me!!

Migraine disease has made my children into very kind, gentle, caring little people (they're 5 and 7). They are sensitive to people who are not feeling well and are very generous with hugs, kisses, and gentle snuggles. They are also more self-sufficient than many other kids their age--they can get their snacks and drinks, and occupy themselves quietly when necessary. AND they know when to call Daddy at work for help if Mommy is very sick!

This is very true. I feel the same about my kids. I also feel guilty a lot because I can't do everything they do. Like today I had to get an infusion, so I had to give my sister my son and she brought him to Kohl's with her. He couldn't
figure out why on earth I sent him to a dept. store with my sister. I explained that Nana was bring me to the hospital and he said okay. I got home and slept all evening and my husband, mom and sister took care of everything with my 3 kids. I hate not knowing what goes on during the day. I have lost so much control and I don't like that. But at least I have a great family that takes over!

Lynn, you said

quote:

I hate using devices - it draws unwanted attention -

Girl I can totally relate! When I have my Hemiplegic migraines, I have to use my walker(albeit hard to do one handed..) I hate going anywhere with it! but if my whole left side is not working, well, I gotta do something. I hate using it just around the house even. Sometimes my paralysis will last a week or so after the migraine. I will frequently be off balance and dizzy too for a few days. Blech no fun.

Miriam, Oh I know that guilty feeling too well! I hate missing out on kids events, or not doing what I used to with the kids due to migraines. Im glad you have a great family that takes over for ya though! I do too, and its so good to have great family support!

This is a great self-reflective thread. I have changed dramatically in the last 2 years, mostly a result of my migraines.

I was the queen of multi-tasking and that came to a screeching halt. Getting things done was my priority. Pleasing people and doing everything for them was high on my to-do list. I burned the candle at both ends, working 60+ hours a week, in addition to trying to be everything for everyone.

While this was going on, my migraines gradually became more frequent and more disabling. As a result of my migraines, I am now on temporary disability, awaiting news as to whether it will be permanent or not. I have stopped trying to make everyone else happy and focused on myself. This caused me to lose the majority of my friends. It has made me see who my real friends are and I have had to learn to let go of those who were "fair-weather friends."

I have also begun a spiritual path. Because of it, I am now experiencing more peace than at any other time in my life. I no longer need the approval of others like I used to. My days are focused on ME for the first time in my life. I still love my family but I have learned to let them run their own lives.

As painful as my migraines are, I have evolved to a more meaningful person. I don't know if I'll ever get them under semi-control and return to work but I do know that I am a better person as a result of this time for self-reflection. I am enjoying being selfish (it took me 50 years to get here though! )

Wow what a great question!

I am so glad to have found this forum! Reading all the shareposts, thoughts and experiences, relating to others who have migraines helps so much! After suffering with migraines for 13 years as of this week, I can say I look in the mirror sometimes and wonder if the OLD me will ever be back.( I will turn 50 this year) The me who could plan ahead, multi-task, hike, bike, enjoy so many things I cannot now. I was the closet migrainer, hiding my illness because it was all in my head! I hid my "puke pail" in the car, never asked for help. Not even my friends knew. For years I cried in the shower, alone on the bathroom floor. Finally, I realized I could not live like that anymore. I got the courage to tell my dotor my quality of life was not good, and stopped the "I am fine act". Now I am trying to say no, to over committing myself, no, to doing everything for everyone else but me. It is very hard. I look back at the years my kids were growing up and it is a blurr. It went so fast. Each day I do not have a migraine feels like a gift. I try to get 100 things done! Then the pain comes back and I think NOT AGAIN! Migraine makes me feel like a hermit at times. A weak person when I was always strong. I feel too dependant on my husband. I try not to ask him for help, then get resentful because he does not understand I need help. I am working on a new attitude, and accepting that I do have a disease, I am not crazy, weak, or a hypochondriac!
Trish