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My fault….?

When I was a child and teenager, my mother suffered from extremely debilitating migraines. For her, it was not just the pain that was the problem, but the extreme vomiting that went with it, sometimes lasting three days. In those days, 1970’s and 80′ there seemed to be little understanding of the condition and she was either ignored by doctors or told that depression was the cause of her illness. I am ashamed to say that I didn’t give her much support either, but selfishly thought more about the impact on me and my sister than on her. Fortunately, she had an early menopause and her migraines eventually stopped. She is now 66 and very grateful that she no longer suffers.

But I have taken her place!! I started getting migraines when I was 20, but only once a month when I had my period so I cold manage that. But over the years (and particularly after the birth of my second daughter) they have become uncontrollable and chronic. I am now 42. I have tried all of the usual medications and last year had an occipital nerve block and botox but nothing has given me any relief. I have given up alcohol and tried to pay close attention to what I eat but nothing seems to make any difference. Nowadays, I am nearly in constant pain.

I have given up a job I loved and barely socialize: the embarrassment of letting people down at the last minute has become too much stress for me. I used to love swimming, but I’ve also had to cross this off my list as any form of exercise brings on an acute attack.

Sometimes when I’m led in bed I think that somehow this is my fault, this, coupled with the guilt of not doing enough for my family is really hard. Does anyone else feel like this? I have 2 lovely daughters who are 14 and 10, I am praying that I don’t pass this on to them.

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Comments

  • Newdancerco
    5 years ago

    I am right there with you. A Mom, chronic for over a decade with few options left, and a 6 year old boy full of energy to raise. At least Daddy has him 50%of the time, but I am so tired of being sick and unable ti keep up with him. But a rambunctious boy us hard enough before adding in the noise of other kids, etc.
    I often feel like I’m a bad Mom- my parents are close enough to help occasionally (I’m in Madison,WI and they are 2 hours north), but my mom is quite good at making me feel like a poor parent as well. So the guilt comes from numerous angles, not just internally generated.

    I’ve considered giving up custody and my parental rights, since I can’t fulfill my part of the bargain. I dont want to lose him, but I don’t want to mess him up, either. I used to think about removing myself from the picture permanently, but now he is old enough to remember me and miss me, and I don’t want him hurting.
    I wish they could just fixt the problem so I didn’t have CDM anymore.

  • annam
    5 years ago

    Guilty feelings only serve to help one change behaviour. Migraine is genetic so guilt has no place. My mom also had severe migraines starting at perimenopause. She always said, “tomorrow will be a better day.” I stared getting them at age 38 & figured I was no worse off than my mom. Then I got chronic migraine which mom didn’t have. It eventually took away most of what made me human. Living in small rural areas I also suffered abuse from doctors who had no clue what I was experiencing.When things were about as bad as they could get I got the internet and some published writers invited me to join a discussion group. I will forever be grateful to them for making me feel human again. Shortly after that I finally found a doctor who would do lidocaine injections which have helped me quite a bit. I am still real sick but I feel God has led me in a new direction. I think there will be medical advances and that new treatments will be found for migraine. Also it sounds like you might be like your own mother and stop having them at some point. I think when they start late in life like with my mother and me, they might never stop.Your children will have the advantages of all the research which was not available even 20 years ago. I believe the future will bring miracles in medical science. My best wishes and prayers for you and your family.

  • Jan Piller
    5 years ago

    Those migraines will beat you down and beat you down.Don’t be part of the mob and beat yourself down too. Learn how to be kind to yourself. Say nice things to yourself. Show respect for your self. And on the off chance you do pass migraines down to your kids, you’ll be able to teach them the same. REmind yourself all the time that you have soooo much worth!

  • Ellen Schnakenberg
    5 years ago

    Jan this is excellent advice. I try to remind patients that how they live with their Migraines, teaches their kids how they should live with theirs, should they end up having them. There is an old quote:

    “Children learn what they live.”

    So, so very true! Thanks for the reminder!

    ~Ellen

  • ChoctawCharli
    5 years ago

    I understand what you are going through, Vicky. My migraines have continued to vet worse through the years instead of better. But that is because mine are caused by a TBI suffered while in the military. I fee, so guilty when my husband comes home and I am still in bed because I had such a bad day or the only reason I am dressed is because he has to take me to the hospital yet again! I have started Botox. The first series didn’t help much at all. The second series helped quite a bit, BUT, I am coming off of that second series and literally crashing! I have been in constant pain for two and a half weeks and half had to make FOUR trips to the hospital! My left eye feels like it is about to pop out of my skull and my nose has gone through two boxes of tissues. (Both are common signs of migraine for me) All I can do is pray for the days to pass until the 21st gets here. I am so fortunate that I have an understanding husband and that my kids are grown. They were still young when the accident first happened and I first started to get the migraines. But I was lucky enough in that they were both old enough to understand the situation, and that I didn’t have them all that often at first. And I had a wonderful Mother who lived with us who coulf take over when I could not. Later, when I got so bad, and was hospitalized more the military saw fit to give me a medical retirement thus ending what I had hoped would be a career. Had 16 & 1/2 years in at that point. But fortunately, that didn’t stop my military care and they take good care of me, as best they can under the circumstances. All this is a very long way of saying, there are people out there who know what it is like to feel guilty about not being able to take care of their loved ones. But know this, they love you, and want more than anything else for you to get better. So, work with your doctor, concentrate on that. And it will work out in the end. And maybe by the time your daughters hit “that age” there will be a cure for the hormonal migraine.

  • Vicky Wemyss author
    5 years ago

    Thank you for your encouraging words. It does mean a lot to me to know that people understand where I am coming from and your reply has made me think about my daughters and that they are very understanding and mature in their attitudes towards me. I hope that you are feeling much better soon.

  • AngelinaB79
    5 years ago

    Thank you for sharing Vicky, this could easily be a double of me. I’ve had the nerve block and trialling another medication, next step if this doesn’t work is botox. I am so scared and the guilt of my inability is unbelievable. Sending blessings x

  • Vicky Wemyss author
    5 years ago

    I really hope that botox works out for you if your new medication doesn’t work out. I know that for some it is a great success. I’ll keep my fingers crossed for you x

  • Lynn Gonyea-Dimit
    5 years ago

    I can sure relate, Vicky… I am also a Mom suffering with migraine and constant head pain. I have been diagnosed with chronic migraine in addition to a neurological condition that causes constant pain behind my eye and the right side of my head and face. I have been coping with migraines since age 19, and my chronic nerve pain started when my second child was six months old and she is about to graduate from college this spring. I am 52 years old and I have three children, a son age 24, a daughter age 22, and my youngest daughter, who is almost 10… so I’ve been coping with constant severe pain since my older kids were babies! I haven’t had one minute free from pain for over 20 years. I am sharing this, not to complain, but to let you and others know that I surely understand what it’s like to parent while dealing with migraines. It makes me sad that my children never knew me without pain, but in spite of this, my older kids have become more considerate and understanding of my condition as they got older. But they know what it is like to see me literally stuck in bed in pain and there were many times it affected our activities.. cancelled plans, not inviting friends over when I was having a migraine, eating frozen pizza for dinner… and I can tell you this: they survived it all!! My two older kids are both successful college kids who live on their own and thankfully, they are doing wonderfully, despite the fact that we all had to make compromises when my pain was overwhelming. They learned to pitch in when they were young… doing laundry and household chores when I needed the help. They would tell you that while it may not have been a “normal” childhood at times, that they are grateful for all of the skills they learned by helping more at home, and it has helped them become more empathetic and compassionate people. Over the years, I’ve learned to focus on the good memories, of which there are many, and I don’t dwell on things we may have missed out on… being in constant pain forced me to slow down and take a serious look at my priorities. My kids always came first… when I barely could manage getting out of bed, I would always have room for them… when they were little, I was still undiagnosed and I was on a mission to find the cause and to get relief. But because I was forced to rest much of the day, I spent hours reading with my kids.. and it was because of that, all three of my kids were early readers. So in spite of all of the challenges of coping with pain, there were actually good things that came from it. I consider myself blessed that I ONLY have chronic pain… I can still find many ways to have an enjoyable and satisfying life. Being a Mom isn’t easy under normal circumstances, and for those of us with migraines and chronic pain there are even more hurdles to jump, but I know this for sure… if it wasn’t for my children some days, I’m not sure how I would have carried on… So Vicky, and all of you mommies out there who are coping with this… please know that your children will be ok and they will grow up to understand that migraine is no one’s fault… nobody would choose this. But there is hope!! I have found some relief with some effective medications and a compassionate neurologist. Relpax has done wonders for me and has saved me from literally hundreds of trips to Urgent Care or ER… I know everything doesn’t work for everyone, but I had nearly given up after trying so many medications and treatments, but I finally found an effective migraine medicine. I have also studied extensively about chronic pain and coping skills and I try to reach out to others to share my experience and to let them know that life is worth it, pain or not… and I keep all of my fellow sufferers in my prayers every day!! Many blessings to you, Vicky, and to all of you who are in this boat as well!! Sometimes it helps a lot just to hear “I truly understand what you are going through”… so remember, we are not in this alone!! Stay strong ladies… and hug those kiddos!! All will be ok!! 🙂

  • Sara Gudmundson
    5 years ago

    Thank you for sharing!

    I got cronic migrane for a whole year, 2013, but I have managed to break it and now I am much better. Botox, mindfullness and talking to an expert in human behaviour have helpt me a lot!

    Hope you find your own way to get better!
    Sara

  • Vicky Wemyss author
    5 years ago

    Really pleased to hear that you got better. How many times did you have botox before it worked?

  • Teresa-Zehr
    5 years ago

    I can totally relate. I’ve had migraines since my teens (I’m in my 30s now) and became chronic in the last 18 months. I’m still hoping of that passing over and going back to “non chronic”. (anyone know if that’s possible)

    We’ve had horrible weather here in Manitoba (going from – 18 C up to +2 with freezing rain, high winds and blizzard warnings and then back down to -17 C in the span of 24 hours) and that isn’t helping. I was flat out yesterday and at the end of the day, feared it would continue (too early to tell for today though!). SOOOOO discouraged.

  • Katie M. Golden moderator
    5 years ago

    Vicky,
    You asked about Botox. Below is an article on the basics. I’ve been doing it for about 3 years now and find that it probably helps me the most out of all medications. I do remember my doctor saying that it may take 2 to 3 times before you feel the full effects. Typically you can only get Botox every 12-weeks, so it may be 6-9 months before it fully kicks in. Others find it works right away.

    Another disclaimer to know is that Botox has a life cycle of its own. You are likely not going to walk out of the doctor’s office without a headache. It can take a few days to kick in. In the same vein, it wears off too. For some, the effects may not last the full 12-week period and headaches can return.

    With that being said, Botox has been known to help control the severity and/or frequency of Migraines for so many people. It just may take a few tries to get the timing and dosage to fit your needs. If your insurance company will pay for it, it is definitely something to try.

    http://migraine.com/migraine-treatment/botox-for-migraine/

  • Lynn Gonyea-Dimit
    5 years ago

    Teresa, in my experience, my migraines have decreased in frequency as I’ve gotten older. In my 30’s, I was suffering with as many as three or four migraines a week.. ugh!! But since I’ve gone through the whole menopause thing, my migraines have decreased to maybe one or two a month!! Yay!! It’s been a significant difference for me.. I realize you are much younger than me, and I hope as you get older, you’ll find that your migraines become less frequent, as well. This seems to be the case for many of us who suffer. And I can relate to the weather issues as well, because I live in Northern Wisconsin and I am certain that the weather has a huge affect on my headaches. And the cold, dreary days don’t do much for my mood either… winter is especially hard with migraines… Depression can sneak in pretty easily when the weather is nasty… so make a special effort to treat yourself well.. I know I don’t feel quite as guilty when I have to rest if I know it’s cold and miserable outside!! Take care of yourself.. hope you’re feeling better soon!! 🙂

  • Vicky Wemyss author
    5 years ago

    Thanks you for your reply. I don’t know if the chronic stage can pass over, but I could easily live with one migraine a month now compared to this!
    I hope the weather settles down for you soon as I know that extreme changes don’t help.
    I live in Bristol in the UK and it’s just wet and grey here!

  • Megan
    5 years ago

    I too suffer from chronic migraines. Have been hospitalized and tried lots of meds. I feel the exact same way. My daughters are 5 and 8 and it’s super sad when they ask me nearly daily how my head is. They shouldn’t have to worry about that.

  • Lynn Gonyea-Dimit
    5 years ago

    That’s hard, Vicky, when our kids are starting to expect to be let down when Mom is sick.. with my youngest daughter, who is almost ten, I’ve learned not to tell her too far in advance about upcoming plans, in the event that we would have to cancel. Fortunately, I have very understanding friends and family, but I know as Moms, the last thing we want to do is disappoint our kids. Cancelled plans are part of my life as a migraine sufferer. So I try not to tell my daughter ahead of time when we have plans. What I usually do instead, is tell her I have a surprise planned.. for example, this Saturday, we’ve been invited to a playdate with her friends but she doesn’t know about it yet. This way, if my head pain is too severe, I can make the “surprise” be watching a special movie and ordering a pizza. That was I’ve avoided disappointing her.. but it doesn’t work all of the time, especially when she is aware of plans too far ahead of time. SOOO,it is surely a balancing act sometimes, but at least she understands that it’s about spending time together, and that we try to make the most of our days when can… I’m just very careful not to promise too much and she seems to like being “surprised” when we are able to follow through with things I’ve planned without telling her.. I wish you girls the best… nothing easy about parenting with migraines, but it IS WORTH IT!! 🙂

  • Lynn Gonyea-Dimit
    5 years ago

    I hear ya, Megan.. I didn’t want my kids to worry about me either.. For me, it helped to give my children as much age-appropriate information as possible to help them understand. I encouraged them to ask questions and to learn about migraines.. and I have found it has made my kids more compassionate towards me and others who suffer. Little kids obviously don’t need too much info, but I always reassured my kids that I would be ok and that my headache would pass. And when I was feeling better, we always tried to have some fun things to do. It’s easy to fall behind on housework, chores, and errands and I felt like I would never catch up. But I also didn’t want to spend every minute without a migraine, trying to catch up on stuff… there has to be room during our good days, to have fun and relax and enjoy our families. I wish you all the luck, Megan… just know that I was where you are 20 years ago, and my kids and I have survived it all… with perseverence, a sense of humor, and by the grace of God… many blessings to you!! 🙂

  • Vicky Wemyss author
    5 years ago

    Yes it makes them grow up too fast doesn’t it? I feel sad that they have stopped asking me to do things with them because they know I’ll usually end up letting them down.

  • kathy-phelan-delaurodelauro
    5 years ago

    Sorry you have to deal with this. My kids both got them as well..I am 46 and they are 23&21 and they understand now! Don’t feel bad or guilty… Not your fault. Just sucks!

  • JenParis
    5 years ago

    I know exactly how you feel as I too have had to give up a job I loved, and socialising. My daughter suffers as well because I have to cancel plans we make. I hope one day to get these under control.

  • Vicky Wemyss author
    5 years ago

    I hope so too. I’m sure your daughter understands but as mums we still feel bad . I’m just getting over a particularly bad one and now have to catch up on everything before the next one hits. It’s a vicious circle .

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