Migraines changed my life

I used to be normal. I used to be active.Then, my body turned on me, & now I often feel cheated, because the migraines keep me from doing almost everything. I try to stay positive, easier said than done.

Migraines came on me later in life. As a child & young woman, I was very healthy, & active. I had three children, with easy pregnancies & deliveries. I worked, as a nurse, part time. I got the occasional headache, took Tylenol, & kept on going. Those were not migraines.

The first time I got what would turn out to be the beginning of my chronic migraines was when my husband & I went to the Grand Canyon. We had hiked down about a mile, were coming back up, when it hit. At first we thought it was due to dehydration, even though we had been careful to drink lots of water, or maybe the change in elevation. I took Tylenol, no to avail. And, it lasted throughout the night, & into the next day, making me, sick, light sensitive & miserable! What was going on?

The headaches kept coming back, every few days, for the rest of that vacation. As soon as we got back home, I went to the doctor the next day. You see, I also have another health issue. And it makes a world of difference. To make a long story very short, I’ve had 6 blood clots since 1998, in my right subclavian vein. Because of this, I’m on 2 different blood thinners. Why does this matter? It matters because it severely limits the medications I can take for the migraines. I can’t take anything that will compromise my clotting situation, either making my blood too thick, where I may clot again, or conversely, enhancing the anticoagulant, where I could bleed too easily. I’m walking a fine line all the time, as it is.

I had to stop working. I was trying so hard to continue, but it was really becoming impossible. I would wake up in the morning & wonder if I could go in. Then, my husband would drive me in, since it was so early, the headlights would do me in before I would even get to the workplace. I wore sunglasses when there & a hat, & had a special tent like structure over my work cubicle, to protect from the fluorescent lighting. Even so, way too often, I would have to go home before my shift was over. Once, a supervisor who didn’t know me very well almost called 911, because I stutter when my migraines are severe, & he thought I was having a stroke! Fortunately, a co-worker who did know me, was able to talk him out of it, & my husband came to pick me up.

I’ve had so many Scans & MRI’s, I can’t even tell you. I have 4 stents, all telescoped into each other. I had my top right rib removed because they thought the collar bone was compressing the vein between that & the rib. That seemed to have worked for a couple of years. Then I got 2 more clots. Two of them while I was on the warfarin, the heavy duty blood thinner. So, I’m in no way able to take any risks with meds for the migraines.

I’ve tried accupuncture, biofeedback & Botox. I’ve gone to an herbalist, who was quite limited with what she could recommend for me, for the same reason as described above. I’ve seen an Ear,Nose & Throat specialist, in case it had anything to do with my sinuses. I’ve gone to a big teaching hospital where the doc made an erroneous recommendation with regard to me taking Tripans.

My husband determined, through logging when I got my headaches, where we were at the time & how severe they were, that a major trigger of my migraines was relative humidity. Because we lived in a very humid area right on a major water way, we moved. It’s been somewhat better here, but far from as good as I’d hoped. I’m currently taking Topamax & my neurologist recently increased the dosage. I can take a bit higher dose on this, & then there’s one more anti-seizure drug I can try. If that doesn’t work, I’m out of options, as far as preventative medications are concerned. Then, I don’t know what I will do.

I’ve missed out on so much. Family gatherings, neighborhood picnics, work parties. I don’t really drive much anymore. Even if I don’t have a migraine when I leave, there’s no guarantee that I won’t get one before I have to get back. And there’s no way I trust myself to drive when I have a migraine. My perceptions & reactions are completely messed up.

Anyway, that about covers it, I guess. I keep telling myself that it could be worse, that it isn’t fatal. And that’s true, of course. And, I’m also blessed to have a wonderful husband who takes incredible care of me when I’m sick. I also have 3 great kids, 2 great stepsons & 5 wonderful grandchildren & an absolutely fabulous 95 year old Mother, who is in good health & who I love with all my heart! Count your blessings, right? Right!

I don’t know why the migraines happened to me, or the blood clots, either, for that matter. I believe in G-d, & that everything happens for a reason. Just because I don’t get it, doesn’t mean anything in the grand scheme of things. It’s just not pleasant, & I can’t help but pray for some relief.

For anyone reading this, if it helped you, I’m glad. It does help me to know that I’m not alone in my discouragement & frustrations by reading the posts on this site.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • Alison
    2 years ago

    Hi Naomisdtr 18
    Thank you for sharing your story. I too used to be normal until chronic migraine hit me out if the blue twenty years ago and never stopped. Additional health problems make my situation worse too so I understand every word of your story. Work had to go within a year as I had a new baby to care for also and the migraines were daily, driving stopped about 10 years ago. Somehow in a haze of pain I brought up 2 children. My family’s lives have been severely affected by my migraines as well, the missed holidays, outings, socialising etc etc. The list goes on. Yes, I too count my blessings daily and try to stay positive, but sometimes a migraine free few days would be nice. Thank you for sharing your story. More than any other, it has resonated with me. This is tough and you are courageous, we all are, every one of us who suffer frequent migraines. Take good care of yourself my friend, you are not alone.

  • Savta45 author
    2 years ago

    Hi Alison,
    I am gratified that you wrote & commented that my story, in particular, struck a chord for you. One of the things I’m most grateful for, is that I never had the migraines while my children were young. I can’t imagine how parents like you could possibly cope! I mean, I had 3 kids, each 2 years apart, thank G-d they were normal, healthy children, but they kept me running! I very much admire your perseverance. You must be a very patient person. How do people survive having young children & chronic migraines, at the same time? It’s beyond me.
    Blessings to you, Alison. I agree, it certainly does help to know that I’m not alone in this chronic migraine world I live in. This site, & hearing from sweet people like you & the others who have responded to my story, as well as the moderators who are kind & supportive, have made a difference. I had previously felt quite isolated, which was leading to increased depression. I don’t feel that way quite so much anymore.
    Sincerely,
    Ruth

  • Brooke H moderator
    2 years ago

    Hi Alison, Thank you for sharing and for the kind feedback! We’re glad that this story rang true with your experience. It is no small feet raising 2 children while dealing with chronic migraine. I’m sorry that it’s been such a struggle. I hope you can find a plan soon that works for you and can give you some migraine free days! Are you working with a headache specialist? They are medical providers who work with people with migraines day in and day out. Here is further information if you’re interested in learning more: https://migraine.com/blog/seeing-a-board-certified-headache-specialist/. In the meantime, feel free to post here or on our facebook page: https://www.facebook.com/MigraineDotCom/ anytime for support. We are so glad you are part of the community. Best, Brooke (Migraine.com team)

  • Ann
    2 years ago

    Hello naomisdtr18 and all you courageous sufferers. This site is amazing. I am so taken with the endurance and the courage you possess. Yes, it takes courage and endurance to face each day.
    After joining this site, I found out I wasn’t alone and that many of you suffer horrific symptoms worse than mine. I marvel at your courage.
    To all of you strong I wish you peace and comfort. Keep remembering you are not alone in this journey.

  • Savta45 author
    2 years ago

    Hi Ann,
    Thank you for your comment. It’s very kind of you to refer to me & other sufferers of migraine as courageous. My mother said something similar to me, not that long ago, & it took me completely by surprise. I mean, my Mom is 95 years old, lived thru a great deal of terror, upheaval & very difficult times due to WW2, & SHE’s calling ME COURAGEOUS?!? I couldn’t wrap my head around it.
    She explained to me that I have an illness for which there is no cure. That I have to contend with very, very frequently, & that even though it’s not terminal, does effect my quality of life. She apparently admires me for the way I cope. Again, I was stunned.
    I cope because I have no choice. I don’t feel especially courageous. I feel like I’m just managing it, just dealing with it. I was dealt this card. I’m having to play out this hand, this game. I don’t want to. I want to run away. I think everyone on this site would, if they could. But, we can’t. We’re stuck.
    Like I’ve said before, it helps to put things in perspective, to know that others have illnesses that, to me, are worse. I’m a retired nurse, so I’ve seen stuff. I also have faith, & believe in a greater purpose. It may not do anything for someone else, but it helps me.
    You are very kind to write, Ann. You haven’t said anything about yourself. Please feel welcome to do so!
    Very best wishes,
    Ruth

  • stophurting
    2 years ago

    Hi. I’m Nancy and I just joined. I wanted to say that your first sentence says it all. “I used to be normal.” You have additional health issues as if migraines weren’t enough. I have had them for 46 years but they have become significantly worse in the past 5 or so years. The ER docs recognize me. I take a handful of preventative Meds in the morning and at night. I also have the standard abortive drugs. Retirement should mean that you get to do fun things not hide under the covers for days at a time. Do I hear an amen?

  • Savta45 author
    2 years ago

    Nancy,
    I also want to say that I’m so sorry your migraines have gone on so long but have gotten worse over the past 5 years! That has got to be SO frustrating for you!
    My very best wishes for speedy relief & comfort for you!
    Big hugs,
    Ruth

  • Savta45 author
    2 years ago

    Hi Nancyavoss,
    Thanks for your comment. Yes, I certainly didn’t envision my retirement to be like this. When I had to retire early, some people, who didn’t know the situation, said,Wow, good for you! How great! Depending on who it was, I might explain, well, thanks, but, really, not so much because…But sometimes, I’d just let it go. It wasn’t worth the energy to explain.
    I had plans for volunteering at my place of worship, at the library, at the animal shelter, all of these things when I retired. But I can’t do them, because even though it’s not a job, & you don’t get paid, these organizations require a person to be reliable, to say they will come in for x many hours on xy&z days, & actually show up, & fulfill their obligation. I can’t do that. I can’t promise that I will be able to be there, any more than I could be at or stay at my workplace. Heck, when I have a migraine, just getting from the living room to the bathroom & back is an accomplishment! No joke!
    So, I don’t know about you, but I have to keep reminding myself that it’s not my fault, because I so often feel like such a lump. You know? Just worthless. Can barely get housework done, very often not. Thank G-d I have a VERY understanding & helpful husband!! Or we’d be living in a chaotic mess! I do what I can, when I can, but it’s sporadic.
    Anyway, Nancy, again, thanks for commenting. Welcome to the site. I do find it helpful to be here, as so few people who don’t have migraines really understand the challenges that those of us who suffer from them must contend with on a regular basis. Blessings to you.

  • DonnaFA moderator
    2 years ago

    Hi, Naomisdtr18, you are absolutely not alone. Thank you for reaching out to share your story and you positivity with the community. We’re glad you’re here! -All Best, Donna (Migraine.com team)

  • Savta45 author
    2 years ago

    Thanks, Donna. I try to be positive. Sometimes it’s easier than others. I do get depressed about it, especially if I get severe headaches that last several days in a row. That’s the worst. It doesn’t help to be depressed about it though, or to cry. The crying makes it much worse, I’ve found. So, I have to get myself out of that, get myself positive, or at least neutral, & pray. That does help calm me. I learned that when I started getting the clots. I was in pain & scared to pieces, & I found that reciting the prayer that meant the most to me, the one I learned when I was a small child, over & over again is what calmed me the best. Oh, I also had my “Angel kitty”, my Sweety, at that time, who stayed right next to me, & had the most therapeutic purr ever! She’s a real angel now, & no more cats for me, my husband is allergic. But, to anyone out there who might be reading this, do not underestimate the power of therapy animals/pets! I believe they have been sent to us from heaven to help us!

  • DonnaFA moderator
    2 years ago

    Hi, Naomisdtr18. I agree, “active” crying always makes it worse. Some days my eyes “leak” and that’s kind of like a pressure release valve (sounds strange, I imagine). I can understand how that familiar prayer helps to soothe you, it’s really a form of meditation and mindfulness.

    I’m sorry to hear about your Sweety, but I know that she is still with you. Animals are such a comfort, they have unsurpassed empathy. I definitely agree with you that they are heaven sent. My children have Sensory Processing Disorder, and their counselor kitties have helped them through some hard times growing up. Have you and your husband ever considered one of the hairless breeds, like the Sphynx? They look like little aliens, but really have the sweetest little personalities. -Warmly, Donna (Migraine.com team)

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