Life Doesn't Fit in a File Folder

The Curse of the Migraine

I started getting migraines when I was about 14 years old. The first time, my father came in my room to find me writhing on the floor. It is my understanding that I howled. My father squeezed my head, vise-like, between his magical hands.

He got me to relax, so I could sleep off the pain.

But my migraines continued, relentlessly, for decades — until they stopped.

Animation of an MRI brain scan, starting at th...
Image via Wikipediauntil they stopped.

After I had Tech Support, my migraines disappeared completely.

I joked that having a baby was a miracle migraine cure. I could eat bleu cheese again. I could eat chocolate and drink red wine — not that I’ve ever been a big red wine fan, but I could have chocolate – as well as lots of other foods that had been considered verboten for so long.

And then it happened.

The headaches came back.

Once a month like uninvited guests, frequently appearing at 5 am, they came with clunky shoes and suitcases and set up shop with their giant hammers inside my head. Sometimes they wouldn’t leave for two or three days.

Once, Tech Support came home from school to find me on the floor, crying and banging my head against the wood floor.

I’m pretty sure I ruined him for life scared him.

Because he called my husband.

When my husband came home, I begged him to kill me.

I asked him to buy a gun and kill me.

To please buy a rifle and put it in my mouth and pull the trigger.

I said all of this in front of Tech Support.

(Which was probably not good.)

But I couldn’t help myself.

(I never claimed to be strong.)

As my husband stabbed my leg with IMITREX, he told me to make an appointment with my doctor.

I got an MRI.

Everything looked good.

I was incredulous.

How was that possible?

How could my brain hurt that much and be perfectly fine?

So I became really good friends with my neurologist who put me on Topomax, which has been a wonder drug for me.

My migraines stopped almost immediately. I take the lowest possible dose of the medication –15 mg in a “sprinkle capsule” — a dose not infrequently prescribed for children.

The hardest thing about being on Topomax is that is kills my appetite.

And it is really hard to go grocery shopping when nothing looks appealing.

So our refrigerator is nearly always empty.

It is difficult to cook meals – something I used to love to do. I remember fussing over chicken enchiladas with tomatoes and cilantro, a little yellow rice. Spooning spinach salad with onions and pomegranate seeds, taking care about plating them on my rainbow-color Fiesta Ware plates.

Tech Support took Health class last year where he learned how important it is to eat three healthy meals a day.

Now he worries about my lack of calories like a Jewish grandmother.

“Taste this,” he implores pushing a forkful of something at my face. “You have to eat, Mom!”

Sometimes I try a bite.

But sometimes I don’t eat anything.

Not a single morsel. All day.

It’s very hard to eat when you feel full.

I know a lot of people who suffer from migraines, and everyone has a slightly different variation on a theme. Some people get a visual aura. If they can catch the headache during this phase, they can sometimes abort it. I think of them as the lucky ones. Some people get ocular headaches. No real pain, just weird visual symptoms. Some people see blue dots. Some people see swirls. Some people vomit. Some people don’t. Some people have migraines and are laid out for days.

That is something beyond my comprehension; I cannot imagine living with that kind of pain.

But I know people do.

So I’ll keep taking my Topomax, keep hoping that I won’t be laid up with an axe-to-the-skull-splitting-migraine while simultaneously praying I’m not cultivating a kidney stone the size of my fist that will one day need to be surgically removed.

Because that can be one of the unfortunate side effects of Topomax.

You can get kidney stones.

And it is my understanding that kidney stones suck way worse than migraines.

Have you ever had a migraine? What are your triggers? And what do you do for relief?

49 thoughts on “The Curse of the Migraine

  1. Ouch. I’m so sort that you get these! They’re awful, aren’t they?

    I used to get them monthly, too. I had to change my diet to get them to stop.

    {It’s funny how so many people’s variations has something to do with food, doesn’t it?}

  2. I completely empathize with you, I get migraines very frequently. I take Advil, or a generic form of immetrex when it gets really bad, but if I wake up at 3 am with the feeling like my right eye is being removed by a melon baller, I know no matter what I take, that pain will be with me all day. It really is a lost day. I’m just greatful for every day I don’t get one.

    1. Hi Stacey! I didn’t know you were a migraineur! It’s not a great distiction, but there are so many of us out there.

      So your right eye feels like it is being removed by a melon baller?

      I see blue dots and, if I don’t catch it, someone with a chainsaw moves in.

  3. I started getting mild monthly migraines after I turned 30. I wasn’t banging my head on the floor, but I’d have to lie perfectly still in a dark room to tolerate them. I pop a Zomig which works if I catch it early enough.
    When I eat really clean (no sugar, food additives, etc) I don’t get them. It’s weird. I think my hormones changed after 30 and certain chemicals can spike them.

    Thank goodness for modern drugs…and I’ll pray you avoid the kidney stones. I’ve heard those are most painful.

  4. I can related to your migraines; mine started when I was twelve. I thought I was dying. I thought I had a brain tumor like my aunt. Imitrex has been a God-send but not a cure. Topomax has helped some. The migraines are less frequent but still happen but aren’t as severe and don’t last as long. Curling up in a ball with the dogs and hibernating gets me through the bad times. I have no one who even checks on me to see if I’m alive or dead. One day someone will find me with my leg chewed off when the dogs get hungry, I guess.

    1. Maire! I hate the idea that you are alone with your migraines. Even if I am hysterical and saying inappropriate things to my son, at least I have someone to check in on me.

      The next time you have one, can you bop over to my blog and send me an SOS? And send me your phone number. I’ll check in on you.

      After about 12 hours.

  5. I, like the posters before me, feel your pain! And so do my darling teen girls. Gotta love genetics.

    My youngest was around 10 when she had her first. I rushed her to the pediatrician (who is literally up the road from us.) She was hurried into a dark room and just after they gave her something to ease the pain, she got sick and was told they couldn’t give her anything else that day. That was the start of her journey with migraines. Though she doesn’t get them quite as often (sometimes 3-4 times a week) as she used to, she can usually catch them at the aura and head off to bed. (Another homeschooling benefit. 🙂 )

    For myself, because of issues with an auto-immune disease, my doc won’t give me any of the prescription drugs for fear it will trigger other problems.As an experiment, I went gluten free 2 years ago after suffering through multiple migraines weekly for several years, I’ve had less than 3 (maybe 4) in the last 2 years. (Yes, that is the VonTrapp family you hear singing from the mountains…)

    Good luck with the Topomax–and I’m sending happy thoughts for no kidney stones and even happier thoughts for a magical disappearance of your migraines altogether.

    1. Hi K:

      I passed the migraine gene to my son, too. I hate when he has them! Interesting that going gluten free has helped reduce your episodes. That;s the one thing I haven’t tried…

      Maybe menopause will bring relief once and for all. 😉

  6. I started getting migraines at 40, just after I became a lone parent – and no, I honestly don’t think there’s a connection there. Every month without fail for more than 10 years. The horror of those days, lying perfectly still in a darkened room,unable to sleep through the pain remains with me still. Eventually they were controlled though drugs. And eventually, one month when I was in my 50’s, I realised that The Migraine wasn’t hovering around waiting to beat The Drugs (I couldn’t take them until I was sure one was on the way, or they didn’t work. If left it too late, they didn’t work). And I’ve never had one since. For me, migraines were totally diet unrelated, so that year I gave up coffee completely (and I am an addict) was a complete waste, and just added to the stress. Good luck. I feel for you. And I’m pretty sure they will stop one day, but sadly, only the migraines can decide when.

  7. My daughter ended up in the emergency room with stroke-like symptoms. We thought she had meningitis from West Nile. OMG! She couldn’t talk or use her left arm for hours. Then after all the testing they concluded by elimination it was from migraine. She suffered with them for years.

    Later we discovered her eye teeth were growing across the roof of her mouth. Once she had surgery, she never had them again.

    I am glad that you found something that worked. We used to put ice on her head and heat on her shoulders to get the blood flowing back out…

  8. I used to get hormonally triggered migraines and I still get stress migraines (the last one in November). I vomit and suffer for about four hours and then it gradually dissipates. I’m not a candidate for Imitrex because I have high blood pressure, so I wait it out, sick as a dog, but knowing four hours has thus far been my limit.

    I have what I call migraine hangovers which means I have relatively bad headaches for two or three days post migraine. Strangely, I consider myself fortunate since I know people who suffer with migraines for days on end.

    Your dad was one smart cookie. I find clamping my hands on my cranium helps a little bit. I know migraines have something to do with the blood vessels in one’s head and perhaps the pressure relieves the blood vessels from dilating…or not dilating (I can never remember which way they go).

    It’s a shame you don’t enjoy eating any longer, but you’ll survive as long as you consume a proper amount of FUEL each day. That is how you must view food, as the life sustaining force it is. It isn’t a function of enjoying it as much as it is fueling the wondrous machine that is your body.

    Kidney stones are no fun and I found the pain about the same as end stage labor pains. The only thing about labor pains is that you get a lovely reward at the end. A kidney stone, alas, is no jewel. I managed to vomit my guts out while suffering the kidney stone passage as well. You may find your migraines start to diminish as your hormone level drops. From time to time you may need to really scale down the Topomax even more to ascertain if it is still necessary.

    See, you have something to look forward to as you reach menopause! More than anything it is critical for you to be able to assure Monkey that you are properly fueling the machine. If he becomes a caretaker too young he may carry this behavior into his adult life and end up with very ill life partners. Caretakers tend to get self esteem from the degree they help others and find little reward in personal triumphs. I want to see a well balanced young man live up to his potential and that means caretaking for others kept to reasonable and not altruistic levels.

    What pulls me through my darkest hours? Knowing that this too shall pass.

    1. Teresa:

      Don’t you think someone should create a device that squeezes your brain during a migraine? There is nothing like it, and few people know how to do it just right.

      Let’s design one and make sixty billions dollars. 😉

  9. Ugh. I’m so sorry. I hate admitting here that I’ve never had a migraine. And that I can’t imagine not eating.

    I kind of love food. A lot.

    And truthfully, I can’t relate to physical pain at all. I don’t know how people who live in chronic pain do it.

    You are stronger than I for sure.

    I’m not sure something COULD pull me through. I’m fairly weak.
    And often hungry.

    Hang in there, friend.

    1. I’m not strong.

      I am marshmallow soft and wimpy, too.

      Did you not see me say that I cry and bang my head on the floor as I begged my husband to kill me?

      I’m not kidding.

      But I did have unintentionally natural childbirth.


  10. I’ve had migraines off and on my whole life. If I look at something bright and look away and can’t quite see, I start to panic that a migraine is coming. I’ve said unkind things to my kids during migraines. I hope they forget that…

  11. Topomax – 150 mg per day. Nice dose, eeh?

    No, I don’t get migraines. It’s also used to combat severe neuropathic pain. While it can cause appetite suppression, it doesn’t all the time. I lost about thirty pounds, which was good, but then stabilized, which was bad because I’m still about seventy pounds overweight.

    My wife does get migraines. I’ve never had one, but after seeing what she goes through, I’m convinced that migraines are worse than the constant pain from my leg.

    Migraines seem to be hormone related. Far more women than men suffer from them, so it may have something to do with estrogen, though scientists are still investigating.

    My mother-in-law suffered from migraines for years. She had them from puberty, until she hit menopause, then the migraines went away. So cheer up, the hot flashes may have their up side!

    Glad the Topomax is making a difference. Hugs.


    PS: Kleo had her operation yesterday. She is one confused puppy today. She hates the cone, but we have to leave it on because she keeps on trying to take the stitches out of her belly with her teeth. Rose is real confused. Kleo smells funny. Of course Kleo smells funny. Kleo isn’t technically a girl anymore.

    1. Wayne:

      In my house, two out of three migraine sufferers are men. Hubby and Tech Support BOTH get them. Yes, we are quite the trio.

      150 mgs of Topomax? Wowzers.

      I’m on 25 mg, and I have no appetite. Ever. And it’s been over a year. I’ve been trying to eat because my doctor said if I lose any more he might take me off the med. I’m terrified that the headaches will come back.

      I’m sorry your nerve damage is a constant source of annoyance and pain. You, however, are dreamy.

      Sorry Kleo is confused. And just because a girl looses some parts doesn’t mean she’s not a girl. 😉

  12. Oh, I’m so sorry to hear this. I’ve had a few migraines in my life, and I wouldn’t wish them on anyone. (They seem to be associated with ‘that time of the month’ for me.)

    Are liquids as unappealing? Booze has a lot of carbs. Oh, that’s funny, I think I just answered your question. 😉

  13. OOH, that sounds terrible. And it kind of made me feel a headache coming on.
    I used to get tension headaches. Same time. Everyday. For about two years. They’d knock me out for a few hours at a time. (not handy when you have toddler twins)
    The neurologist prescribed a handful of drugs, but before taking them, I tried a last ditch effort at the natropath. Took a few months, but…gone. I now only occasionally get a headache.
    I feel for you…

    1. Elena: No joke: writing this entry made me feel headachy.

      There is definitely something to the power of suggestion.

      I hope everyone is okay. I would kind of love to know what the natropath did. Did it involve oils and chanting? That would be cool. 😉

  14. I had my first migraine when I was sixteen. My mom knew what it was before I did. My step-dad used to get them a lot and I wondered why he was in so much pain until I got my first one. My doctor prescribed Topomax for me a couple months ago, I get the rare migraine now, but I do get the taste issue, especially with carbonated drinks.

    One of the other side effects I discovered is I have no desire for alcohol, none. I have Max-Alt that I take in case one starts.

    When I got a migraine for the first time when my wife and I were dating she thought I was faking, she changed her tune when she got her first one after our son was born. She is a full fledged believer now.

    My triggers for migraines are sweets, I only noticed this recently unfortunately. When I start craving sweets I know that one is coming because I am not a fan of candy. Great post, nice to find other people with the same head problems.

    1. Hi BB:

      Nice to hear a man weigh in. It is fascinating to me that you have Topomax and have the carbonated drink taste thing. But then, I am on a very low dose; my doctor can’t even believe it works for me.

      Weird that you can anticipate a migraine because you know you want sweets — but also stressful! There is nothing worse than knowing you are going to get one!

      I find I often get migraines on vacation, when I’m off my normal routine. Schedule changes throw me for a loop.

      So I’m really fun on vay-cay! 😉

  15. I get migraines occasionally. Not nearly as bad as yours. The first time was a long time ago. In Germany. With Mom. She called a doctor to the hotel room. He came in the middle of the night and gave me a shot. All better.

    Now I get them once in a while. Always on the weekends. Always in the middle of the night. No idea why. If I catch it early enough I take over-the-counter migraine medicine and put a hot washclolth over my eyes and lay in the dark. Usually that helps. If not, I lay there in pain until I puke. Then it gradually gets better. Most of the time it’s better by morning. I know some people have them for days at a time. I couldn’t even imagine!

    I remember how bad it was for you when I was there. And I slept through it. Sorry. But you do have an unusally comfortable guest bed. Maybe it would help if you and Mark moved into that bed. Have you tried it? Sooo comfy! 🙂

    I’m trying to give up (or cut way back) on chocolate for diet reasons. I will not give up red wine. Nope! 🙂

    Hope you’re feeling like your perky-self when I see you in June!!

    1. Larisa:

      I ended up on the hospital that time you were here! I forgot that was because of a migraine. I think that I was really dehydrated because of all the activity the day before… if you know what I mean.

      I didn’t know that you’d had migraines! I can’t imagine getting one overseas. Gah! You’re lucky your mom was with you.

  16. I have been a victim of migraines, though I’ve been fairly okay recently. I get auras and spots that last for 10-30 min and then a cracker of a headache. I’ve had tests. But, it seems to be fairly under control.

    What scares me is that Vivian had one two weeks ago. Age 7. I’m hoping it was an isolated incident.

    Be well, you. And eat. 🙂

  17. I don’t know how you’re able to write such funny, poignant and even (all in the same 1,000-word entry) scary blog so well, but I dig it. I do not dig the migraines, and I don’t dig the side effects caused by Topamax. I’ve been getting migraines since I was a kid, and there is not much I can do once they break mental shore. If I can take enough Excedrin and lock myself in a dark, quiet room before the hammer starts swinging at my head (top, left side), and either run or go swimming, sometimes I can avert them (which leads me to think that stress is often responsible for them). Otherwise, I curl up on the bed and wince and grit my way through them. Grr. Please eat hun.


  18. Funny you should ask:
    1) I just finished a migraine this morning.  Left work early yesterday after puking in my office (lucky I have an office with a door vs. a cube).
    2) Mine usually are characterized with intense sinus pain and throbbing with some facial numbness along with a good dose of neck and left shoulder tightness.  Once vomiting occurs the headache begins to subsidize (crazy to be looking forward to that stage).  
    3) I’ve learned migraines are typically hormone related and peak during child bearing years (yes this may be an upside to “hot flashes”).
    4) I’m happy to report that my company markets a migraine med (Maxalt) and has others in development (which luckily keeps me employed… another upside to this suffering?).  Stay tuned!

  19. Ugh… I started getting migraines around the same time as you did… about 3 years ago they disappeared for almost 2 years straight. I was so freaking happy!!! but then one day, they returned…. 🙁 My biggest pet peeve is people who claim a migraine… but you can TOTALLY tell they are just experiencing a common normal mild headache. I would to have their heads ran over by a train… so they can see what a REAL migraine feels like!!!

  20. Yup, I can relate. I haven’t had the terrifying, roll on the ground and pray for death headache in a good while. Healthier living no doubt helped, but I do get sinus related weirdness and those ocular things occasionally. I can really empathize w/ people who get them. Of course, then there are people who say they have a migraine as they walk into the room and pour a glass of water. I don’t believe they’d be walking and seeing and drinking if it was a real migraine!

  21. Yikes! I have had migraines, but it doesn’t sound like they’re on the scale of yours. I’m not sure what triggers them because they’ve been fairly rare, but I do know I always feel them in my eyes first. I’m going to start paying attention to the circumstances around them now . . .

  22. Very interesting… I’ve gotten migraines since I was 6 years old, multiple days a week. I would wake up in the middle of the night and spend the rest of my time throwing up. Scary for the parents. It turned out that I had high blood pressure. At 6 years old. They put me on liquid medicine that I took 3 times a day. Migraines cut down to once every couple months or so. when I was 10, I had another round where they got super bad and I had some other symptoms. Blood pressure was still high. Even though I was on meds. I got upped to the liquid and a pill (captopril) 4 times a day, then slowly worked down to just the pill, 4 times a day. My brother, who is 5 years older than me, moved out when I was 13. The same summer I became too busy to remember taking meds. Blood pressure stayed good. Migraines were not frequent.

    Nowadays, the blood pressure is a non-issue; it actually runs low. Migraines, on the other hand, are still there. Different kinds of birth control made it worse, in that I could tell you what day during the month I was going to have one. I’m also prone to regular headaches. The problem is, most times I don’t know that I’ve got a migraine until the nausea sets in. Then it’s too late to take an Imitrex, which only sometimes works. Surprisingly an 800mg ibuprofen works wonders in the early stages.

    I had a couple rounds with my doctor back in Tennessee who refused to put me on topomax; that the birth control was a major factor of me getting them, whatever method I chose, he then suggested abstinence. To a 23 year old living with her long term boyfriend. I couldn’t tell you what my triggers are. I don’t feel as if I do anything different from day to day that should set them off. Especially, because 9 times out of 10 they are going to be in the evening/ night, and that I generally sleep for a bit then wake up with extreme nausea. And flail around the bed, burrying my head in the pillows, kicking off the blankets, pulling them back on, terrifying the dogs. Not so much the boyfriend now. But then I’m sick. All night long. Lights, sounds don’t bother me. but smells do.

    It’s not my favorite thing in the world, for sure. But the harder thing is to get people who have not had one, to understand that it’s not your every day headache, where you pop a couple tylenols and continue working.

  23. I’ve been getting migraines since shortly after i started dating my husband, about 21 years ago. Coincidence or correlation? Good question! I’ve tried lots of different medications over the years. Some made me throw up (if the medicine didn’t, the migraine did), some made my heart race, some made me loopy, and some just didn’t work. My best friend these past few years is Maxalt. It seems to work about 90-95% of the time, even if I don’t take it early on. Which is good, because I always try Excedrin at the first sign of a headache, since I don’t know if it’s going to be a regular headache or a migraine. And I don’t want to “waste” my Maxalt if I don’t need to.
    I can totally relate to transplantednorth’s description of the melon baller scooping out her eye. Mine feels just like that, too. Along with stiffness in my neck and the feeling of a knife jabbed just underneath my shoulder blade. Of course, that’s in addition to the intense pain in one lobe of my brain.
    My migraines also got better during and after each pregnancy, but did gradually become frequent again. I looked forward to hopefully being rid of them with menopause, but alas, that isn’t the case. Before, I could usually predict when I’d get one (about every other month, at *that* time of the month). But now they just come at seemingly random times, and sometimes much more frequently than before.
    For counter-pressure, I used to tie a folded bandana around my head really tightly. (I haven’t done that in years; I wonder why not?) Also, a very cold flexible ice pack on my head in pitch dark silence while waiting for my Maxalt to kick in is what gets me through.
    Best of luck with the Topomax. I prescribe for you a daily milkshake made with Carnation Instant Breakfast, milk and ice cream!

  24. I am epileptic and also have debilitating migraines. I cannot take Topamax, that drug makes me hallucinate, suffer short term memory loss and paralyses. The combination of Clonazapam and Deapacane ER has all but stopped my migraines.
    No real side effects other than my love if food. You should consider this combo of drugs. Godspeed my fellow Axe-to-the-head-migraine-sufferer.

    1. Hi Tony! I have to write something — eventually — about my experience with clonazapam. I have to figure out how to do it. everyone is different, as you touched upon in your comment. Let’s just say I’m glad you’ve found the combo that works for you.

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