The Other Kind of Migraine

For the last few days I’ve been reading layouts of my poetry book and going over the finishing touches of the cover design with the publisher. On top of that I’m being audited by our lovely IRS (what a waste of good writing time to go through all my old records) and I have to get my memoir draft finished in a few weeks.

No wonder I’m migraining. My migraines aren’t “regular” ones. In fact, (usually) they aren’t even quite headaches. Instead, they appear to be mini-strokes or transient ischemic attacks (TIAs), scrunching my face on one side. I get intense vertigo, which comes on instantly. And my body feels as if it weighs 10,000 pounds. Then I start throwing up. My limbs become very weak and tingle and/or become numb. I’m sure there are other symptoms, too, but as I said, I have been migraining, which leaves me for days and even weeks with a pretty bad case of brain fog. And weak limbs. Physical clumsiness.

In case you’re wondering if I take Imitrix, my neurologist says that people with “complicated migraines” can’t take migraine meds as they can be extremely dangerous. So I am stuck with being on a blood pressure med and, occasionally if I get an aura warning me, I can take an aspirin to try to head off an attack. Aspirin isn’t so hot for my ulcer, but the CMs feel so lousy I would rather aggravate the ulcer!

An aura can be little whirls in my head, as if vertigo is just starting. Dark spots in front of my eyes. The weak limbs, the clumsiness–in short, all of the symptoms but not as intense. I spend a lot of time avoiding triggers. My worst triggers are fluorescents and other lights which have a flicker, even if you can’t tell there is a flicker. I wear sunglasses and a brimmed hat whenever I am going to be in fluorescents.

Have you ever read Didion’s migraine essay “In Bed”? It’s really great, and I can relate to a lot of it. But it’s still not quite the same, and I have never read anything about complicated migraines, except web medical articles.

I didn’t get this form of migraine until I entered peri-menopause. Before that I had migraines that were never diagnosed. They started when I was a child. For some reason nobody realized what they were in those days–maybe because the vomiting was what they noticed. When I got them as an adult, they were misdiagnosed as “sinus headaches.” What part of “800MG Ibuprofin doesn’t touch it” and “all I can do is lie on my back with a mask over my eyes” didn’t my doctor understand?

Even after the complicated migraines began, they were misdiagnosed for quite awhile as TIAs. The first doctor I went to put me on Plavix to thin my blood and my eyes bled. Lovely. I went to another doctor who diagnosed me properly.

But I read something the other day about there being a possible danger of stroke for people with complicated migraines. And I admit that that terrifies me.

Have you ever had a migraine of any type?

 

51 Comments

Filed under Blogging, Essay, Memoir, Poetry book, Publishing, Writing

51 responses to “The Other Kind of Migraine

  1. I had them severely in my twenties. Thank goodness I grew out of them. I feel for you and hope they stop soon.

    • Oh, I wish I did. What happened was I had them as a kid, then they went away and came back when I was mid-thirties. Then they suddenly changed to CMs. It gives me hope that they will go away again, but definitely been going on a long time now.

  2. Ugh, what creepy migraine experiences, Luanne. I’m sorry you have had any and all of them. Right now, I am ready to compose a letter to my doctor re: the propranolol (blood-pressure meds) I am taking to ward off migraines. Maybe I should call. My ankles and feet are swelling.

    • Yes, you should call. I got swollen calves (well, more swollen than usual–since I have lymphedema) from the Verapamil as first prescribed, but I got my dr. to lower the dose and we found a therapeutic dose that doesn’t cause the swelling. I hope your dr. can do something like that for you–or find one that doesn’t cause the swelling.

  3. Sorry to hear this — and the IRS on top of it all! I too have had experiences with the health system in which things are misdiagnosed or not diagnosed at all–this seems especially the case with chronic health problems like migraine, etc. It seems that we have to be the masters of our own health. Take care and good luck with your writing. I know you can do it!

  4. I’ve experienced vertigo on an off all my life, Luanne, but haven’t had much experience with migraines. Sounds unbearable, but it seems you’ve managed to navigate around them and mustered some productivity out of it. Hope you feel better soon. xoxo

  5. I’m in the club-perhaps there is a link between migraine/creative writing. The only thing that works for me is a benzodiazapine and immediate dark quiet room. Since I am too crazy to follow my own advice, I often wait to long “just let me finish this one thing!” and end up on the evening news. “Woman sticks head in freezer, (unscrews ligh-tbulb first), takes nap there for migraine relief.”

    • That made my day. Hah, so funny. That is what I used to do with migraines–wait to finish one last thing. But then these CMs started in and they wait for no woman. They strike instantaneously and immediately put you out. My first one came as I drove into my kids’ high school and I had to stumble up the steps and get help. I thought I was dying. Re the freezer, hubby eventually figured out to give me an ice pack, but I couldn’t grasp that because the first thing to go, which I forgot to mention above, is the thinking.

  6. Oh, Luanne, I am so sorry. These kinds of illnesses with unknown origins and no quick fixes make it difficult to feel in control of scheduling and commitments, not to mention how debilitating the episodes are.

    I can’t tell you the number of auto-immune illnesses I had that cleared up once I passed final menopause stage. Peri-menopause is fraught with hormonal and immune system interactions and complications, few of which are studied, understood, or acknowledged by the medical community.

    I do hope eventually some of yours will be relieved when your hormones stop running amok.

    • Sammy, thank you so much for your kind comments. I’ve been going through this for 16 years now, so I am less sure that it’s going to go away. And there is definitely a hormonal cause to it in some way. It’s getting pretty annoying, that’s for sure!

  7. I’m so sorry to hear this, Luanne. I used to get terrible migraines as a teenager and in my early 20’s. Now I have what they call ocular migraines which is the vision disturbances but no headache. When it hits, I can’t see anything. Chewing up an aspirin and drinking some Coke always works for my mother, she gets them as well.

    • Aspirin is amazing for migraine stuff, isn’t it?! Sometimes I wonder if caffeine is a trigger, but honestly, it seems to help keep them at bay very often. So sorry you get these ocular migraines!

  8. I get migraines with aura – used to get them weekly in my 20’s but it’s slowed way down to a few a year. And the aura I quit getting almost entirely – for the past 15 years or so I’ve only gotten the aura when drinking diet drinks.

    With the auras, I get blind spots, and the scintillating lines that start as a small dot in my vision but slowly spread out across the entire field. Usually in the right eye, along with the blind spots. Started in my early 20’s and freaked me the hell out until the Internet came along and gave me an answer in about five minutes.

    I would get brain fog too – sometimes to the point that I could not speak. I have always been told by doctors that people who get migraines with auras are at a slightly higher risk of stroke. I never get any nausea or vomiting or light sensitivity though – and sometimes I don’t get a headache. I have always been able to keep functioning through a migraine (and nowadays, what I mostly get is the headache without the aura). But I know most people are not that lucky, and that it could change at any time (over the summer I had a bout of aura that stretched out over a few days, it really surprised me because I haven’t had that in forever).

    Anyway sorry yours are so awful! I hope they subside soon and you can get on with life.

    • I’m so sorry you get the migraine stuff, too, but wow, so good to be able to “keep functioning” through the pain, etc. I was shocked to see that the moment I moved from California to Arizona, I had aura or CM every single day until I started medication. There is something about this climate that makes it way worse. I suspect it’s the dryness. I hope yours never get worse or, better yet, go away forever!

  9. I’ve had temporary partial loss of vision that was first misdiagnosed as a TIA but turned out to be a silent migraine. It’s pretty scary when it happens. Haven’t had it for quite a while now so I think it must have been just stress at the time. I guess the IRS could bring it on!

    • So you’ve been through that TIA bit. Did you slur your words? The first few times I had it I also had the word slurring, all the complete symptoms of a stroke, in fact. Anneli, you are right: so scary the first few times. I’m glad it wasn’t TIAs for you either.
      Re the IRS, I have some bad words all lined up for them. I’m still working on the word lineup because I want to get it just right . . . .

  10. I get an iridescent oval on either side of my eyes. Sometimes I cannot see. If I lie down in the dark and take tylenol (cannot take aspirin), they may go away soon. Then the headache sets in. Your typical migraine headache. I am sorry for you.

    • Hollis, wow, I am trying to imagine this iridescent oval. So it’s like the black spots (blank or blind spots), but iridescent? Ugh. Are you allergic to aspirin? If so, that is tough, knowing how good it can be. So sorry you have to go through this. Man, look at how many migrainers are chiming in here!

  11. Funny, I had one earlier today. I was first diagnosed when I was 18 with “migraine-equivalent headaches.” The doctor didn’t really think it was migraines, but something similar. (A subsequent doctor said — “that’s stupid; you get migraines!” I get the aura and the numbness — mostly in my tongue and I get aphasia if I don’t take Tylenol right away. Then I say really weird things. Like I can’t actually spit out the word “migraine” — I tell people that I have a “microwave” instead. It does not improve peoples’ opinion of me much! Yours sound much more complicated. But six hours later I am still feeling the residuals from the one I had this morning.
    Do you have any food/drink triggers? Beer and Chardonnay give them to me (but apparently this one was from something else)

    I wrote an early blog piece about it — and about Michelle Bachmann (http://fiftyfourandahalf.com/2011/07/21/twinsies/)

    • You are a hoot, Ms. Elyse. Ugh, Migraines come in a lot of packages, obviously. The first few times I had the CM version I slurred my words terribly, like a stroke victim. But now it doesn’t happen any more. Only everything else. Tylenol? Can you not take aspirin either (like Hollis)? Or you prefer Tylenol? My father had migraines when I was a kid and anything with mold like wine? might set him off. He doesn’t get them now that he’s old. I know I am allergic to mold, but wine doesn’t give him migraine. I think it’s fluorescents, hormones, sleep disturbance, stress, maybe bad smells or noises. When I was a kid one of my first migraines was from the smell of cooking game (duck) in the house.

  12. I had to be hospitalized a few times but that was over 20 years ago – good luck!

    • Oh my gosh, Julie! What symptoms caused you to be hospitalized? When I first got the CMs I had to stay in the ER for hours, but that is because they thought I was having TIAs and also it would drive my blood pressure way up. Do you get migraines any longer?

  13. No, no, I’ve never had anything like what you go through! My heart breaks for you. If you think this is related to peri-menopause, perhaps they will lessen once you’re finished with that. I hope so. And shame on the IRS for auditing you. Really, they should be auditing Google or Apple or Facebook, for goodness sake 😉

    • It’s been 16 years now, Marie. Unfortunately hah. But I sure wish they would go away! Maybe if I moved to the beach? 🙂 Re the IRS, YES. You are so right! Why are they wasting their time on me?!

  14. I get ‘lightning’ headaches that feel like someone stabs my head with a hot spear but it only lasts for a few seconds, but that’s due to my MS. I had odd symptoms for years and was misdiagnosed many times. I really feel for you getting these hideous headaches – it’s crippling 😦

  15. Ooh, how awful, Luanne. I hope you’re your lovely self again soon. I’m afraid of the IRS and I’m not even American. You have my sympathy.

    • Hahaha, that cracked me up. I know! I have no reason to be afraid of them, but the amount of work I have to go to to present my case is ridiculous. It’s all handled in the same model as a legal case now. Like everything. Thank you for the sympathy! That makes me feel better as I have been feeling sorry for myself.

  16. I’ve had a few- with the onset of a virus. I’ve also had bouts of vertigo. Inflammatory arthritis, lupus like symptoms. Please rest (can be hard to “just rest”) and get well.
    x

    • Wow, Lynne. Lupus like symptoms? Are they sure it isn’t lupus? I went through a period with so many lupus symptoms (including the butterfly rash) that I had several doctors tell me I had lupus. But I don’t. It was all during perimenopause and right at the beginning of menopause and my body went nuts. I am a person who used to roll my eyes (mentally) when people talked about “the change of life.” Silly stuff, I thought. Then I got slammed worse than most. It turns out my lupus symptoms were mainly menopause symptoms. Isn’t vertigo just disgusting? I had it a few times before the CMs where it was regular vertigo and I “took the valium cure.” Isn’t the human body a mystery though?! Take care of yourself, Lynne.

  17. I occasionally get ‘optical’ migraines. They screw with your vision, but are painless. My husband suffers from the killer migraines – and they are killers.

    I am sympathetic to your condition and wish you well.

    You have a very nice blog.

    • Thank you, Kate! Oh, those optical migraines sound scary as at first you must have thought you were losing your vision! Killer migraines are a good name!!! Thank you for stopping by!!

      • You’re welcome. Regarding the optical migraines, when they first began they did indeed scare me. I went through all sorts of testing and scans, convinced I had a brain tumor! 🙂 Fortunately, it was not.

  18. I feel terrible that I didn’t have chances during the week to check on your posts. I am horrified at these mini-strokes type of migraines. I imagine you wearing a hat and sunglasses in fluorescent lights, like at the store and feel really bad for you. I used to get these as a teenager and during one of my pregnancies. The teen years it may have been stress, eye changes and possibly one year my contacts. I would use hot compresses in a dark room and try to take a nap. In the ‘old days’ I used aspirin, but it upsets my stomach so I use a mixture Tylenol and Ibuprophen, one of each. My old school nurse at the preschool where I worked for 9 years said, each of these does something to help the ends of your nerves which create migraines. She called it her “migraine cocktail.” I am sure each person has suggestions, but hope you won’t have to live with this for long. Isn’t it strange how many say, “this happened during this period of my life?” Like it may be transitory… I hope so, for your sake, Luanne! Hugs!

    • Yes, I am in disguise a lot of the time! The hot compresses are good. I wish I had a migraine cocktail hah. Or maybe just a cocktail! I am starting to give up hope that mine are going away as I’ve had this version now for 16 years! Happy Thanksgiving, Robin!! I hope you get to spend time with your family! xo

      • Thank you for your kind wishes, Luanne. I am saddened once again, to really imagine 16 years of headaches. I always figured my teen years was due to a combination of peer pressure, working too hard, (studying and a part time job), and adolescence ‘growing pains,’ I cannot imagine this more than once a year, which is where I am these days. I think I would recognize you incognito, by the way. I have seen your face and can picture you with glasses and a sunhat on… hugs for your pain and suffering. Wish they wouldl just halt!

  19. I am so sorry to hear this, Luanne. You sound very brave to me, with such a good attitude about an extremely difficult situation. I never had migraines until I was peri-menopausal, which went on for a long time and, like you, for a while I was told they were sinus headaches. I got kinda mad, quite frankly, that no one ever mentioned this possibility as a side-effect of menopause. My triggers were noise and alcohol (the only time I had any visual involvement was when I took one sip of a holiday cocktail and everything in the room went orange then blinked into blankness—I put that sucker down!). At the time, I dreamed of inventing the Mufflehead, a contraption that covered your ears and eyes so no stimulation whatsoever could enter your brain. My OB-gyn said hopefully they would go away when I got on the other side of menopause, and I thought, you mean they might NOT go away? They did, and, again, I am so sorry to hear that yours have remained, and in such an involved way. I hope this particular one has passed.

    • Ellen, it actually astonishes me how varied the triggers and symptoms of migraines can be. For instance, if the cause is the same for migraines (hormones, say), why were your worst triggers noise and alcohol and mine lights? It’s all oh-so-strange. What a relief that yours went away! Such a wonderful benefit of being “on the other side of menopause”!!! I keep hoping . . . .

  20. I’ve had migraine since I was in my early teens which makes me think it might be hormone related. I got lost in a mall once because of a migraine and the aura that came with it. It was the scariest experience I ever had. I also left a set of prints somewhere in that mall because of the pounding in my head. My doctor prescribes Amerge which works but I need to take it right away. If I wait too long, it’s too late. It is so expensive though that if I didn’t have prescription coverage at work I’d be trying that coke & aspirin mix for sure. In fact, I may just try it because even my portion of the prescription is a shocker every time I pay for that prescription. I hope you find a solution. It sure is hard for others around us to understand. I have had all kind of advice I’m sure they got out of some comic strip. Like “Try drinking a full glass of water, I heard that works.” I heard water makes you go to the washroom. Migraines make me mean.

    • Hi KC, I love the dogs on your blog! I do think they are hormone related. For one thing, mine changed when I entered peri-menopause. However, looking back, my migraines actually started when I was still a kid, hmm, now I’m not sure if it’s all hormone related, but definitely some. I’m so glad you have a solution, although I’m sorry to hear it’s so expensive! You are so right about it being hard for others to understand. Your scary experience at the mall, for instance–most people would think someone doing that is “ditsy” or “spacey.” But I so get it. I tell my husband I can’t think right at that moment and he thinks it is just mind over matter because he doesn’t understand. And as for the water! Every time I get one, I crave water, drink it and promptly throw it up!

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