My Relationship with Complicated Migraine
Yesterday I started my day with a headache. A migraine headache.
I know that is what’s going to happen when I look at my computer or TV screen and see more flashing lights than usual. Next I see diagonal, flashing, silver, shaky lines cross my field of vision. The odd thing is – this doesn’t hurt. It just tells me I’m in for some hurtin’ pretty soon. Usually I can run grab some Exedrin, take it, curl up in the dark and disaster will be averted for the most part. (Did you know that Exedrin Extra Strength and Exedrin Migraine have the exact same medicine in them? The label is just different for marketing purposes.)
On other days, it is a whole different ball of yarn. Occasionally I have what is called Complicated Migraine. E-medicine describes this as where migraine attacks are accompanied by persistent neurological defects, such as paralysis. When I have one of these migraines the pain is excruciating. I often experience numbness on one side of my body from the arm to the tips of my fingers. Sometimes in both hands. Speech may become difficult. On a couple of occasions I have found it hard to find the words I was looking for (mild aphasia). In one of my worst attacks, when my oldest was a baby, I remember being unable to make a phone call. I tried punching in the numbers, but I couldn’t make my finger go to the correct button. I was trying to hit the eight and couldn’t do it. I knew I was hitting the 3 instead but my brain wouldn’t communicate properly with my hand to touch the 8. Scary stuff right?
Bad headaches run in my family. My mother and sister have such bad headaches that over the years they both have had to give themselves shots. However, neither of them experiences aura or the neurological symptoms that I do.
You’d think I’d have a team of neurologists. I went down that road once. It didn’t help. They found nothing exciting in all my scans and tests and tried to get me to quit breastfeeding so I could take medications. Medications that they had NO guarantee would help. Most of them really didn’t want to talk with me about any of it until I wasn’t pregnant or nursing.
The one thing all the neurologists and I agreed that my headaches were hormone related. No exciting “triggers” for me. Sure, too much chocolate or alcohol can give me a headache, but not the doozies with the neuro problems. I had 13 severe migraines the first trimester I carried my girl twins, 3 with my oldest daughter and none while pregnant with my son. Hello, estrogen poisoning. My migraines started with childbearing. Then there was the nursing of the darling babes. I’ve only been out of the baby-having thing for a couple of years. For so long I couldn’t take anything for “women who are pregnant or nursing” and I’m just now getting used to the idea that’s not me anymore.
I have avoided being a professional migraine patient because:
- All the medications I have heard about were either not indicated for women pregnant or nursing…and that was me until recently.
- The best neurologist I’ve had (in FL) said that taking the cool newer triptan medication could cause me to have a stroke. Since then, other neurologists have poo-pooed that advice and tried to get me to take it. Scary. No. Thanks. You first. With your neurological migraine fella.
- I have four kids, a husband, and a farm with over 80 animals, all whom depend on me. Who has the time to run around to doctors all the time?
- I may only have one complicated migraine attack every 18 months or so.
- The doctors are baffled and don’t have a clear understanding of this phenomena.
- I don’t want to become my mother and sister. (Bet you saw that one comin’!) I mean with regards to headaches, where it becomes a major part of your life.
Getting medication for those rare days when I do get a bad headache is a trial with my primary care doc these days. And I have to face it – I don’t see my OBGYN as much as I used to.
So it’s time to go back to the neurologist. Hope he’s a good one…
July 11th, 2009 at 7:33 am
i am so sorry for you! i used to get migraines when i was a child (back in the seventies when there was NO medication!). i would have to stay home from school and my mother would have take a day off work or have my older sister stay home from school to ‘take care’ of me. of course, there was nothing they could really do but make sure the house didn’t burn down while i went through all the misery that was/is a migraine. i think many times they are hormonal. lucky me, after i went through puberty, the migraines went too. i thank the heavens all the time and feel for folks like you that are struggling. i wish you good health.
July 11th, 2009 at 7:58 am
I have to start by saying that I am commenting from my phone, so I apologize in advance for typos. I had to comment and I’m worried I might forget if I don’t do it now!
I also have complicated migraines, and I am fascinated by your story. There was a period in my life a few years ago when I had a headache every day for months and months. I eventually got it under control, but the past 2.5 weeks, it’s been happening again, and it terrifes me. I already feel nervous that the dull pain behind my left eye is going to turn into a terrible, raging migraine. But I don’t want to take anything for it until I know, because I am afraid of rebound headaches.
One thing I have to say is this: it’s too late for you. Headaches have already taken over your life. Anytime you have to worry about the next headache, anytime plans are canceled, anytime you curl up in pain or can’t get something done that MUST be done…the headaches are in control. Complicated migraine affects far fewer people with migraine, and it’s really scary. I feel ya. I don’t know if you have a different kind of issue than other people that might cause your first doctor to warn you about the triptans. But if not… Man, I want to kill him. Imitrex is the only thing that has ever helped me, and my life without it would be AWFUL. I am afraid to get pregnant because of migraines without iimitrex. I can only imagine what you are going through…and with kids! I am so sorry!
July 11th, 2009 at 8:05 am
Wow, you poor thing. Your big nasty migraine make mine seem a walk in the park.
I did triptans for a while, I swear they made my migraines worse–they started lasting longer and were more likely to rebound.
I ditched all the drugs, uh, 2 years ago in favor of acupuncture. It seemed to help. Now I’m back to hugging my bottle of Excedrine and hiding under the covers.
Have you looked into the holistic route? When all else fails, right?
July 11th, 2009 at 8:23 am
Just stopping in…
I get migrains too with the aura and mild aphasia too, no triggers here except the hormones! Like I can control that, especially now that I have started menopause. I take Imitrex, the trick is taking it when you see the first signs of a headache coming on. My primary care doctor has put me on Topomax, it is an anti-seizure med, a small dose daily to help prevent them. I have noticed no side effects and it has decreased the frequentcy of my headaches.
So, anyway, I can relate to your pain!
~Michele from By Your Side
July 11th, 2009 at 10:49 am
Yet another thing we have in common- migraine- ick!
never wanting to be a test case for neurologists myself, I totally get where you are coming from- the “we aren’t really sure if this will help or not, could actually be worse” line of thinking kept me quite okay with my choice to steer clear if doctors for headache treatment!
July 11th, 2009 at 11:14 am
Alcohol, caffeine and food additives can also trigger migraines. Vision Care
July 11th, 2009 at 12:21 pm
My mother had severe migraines and I inherited some of it. It hurts so bad sometimes I literly loose my mind a little and want to cut out the “evil” part. I truly feel for you, Katy.
July 19th, 2009 at 6:48 pm
Migraines are evil! Imitrex sent me to to the hospital with chest pains and breathing issues,Topamax made me freaky, most of the others worked for awhile but eventually either became non effective or caused rebounds. Now I have Darvocet and Phenergan on hand to treat them early sometimes combined with Benadryl. If they don’t work it is off to the Er for an IV full of the good stuff.(Although the hell of waiting in an ER waiting room full of loud,obnoxious people eating the smelliest food they kind find is no joy)
August 2nd, 2009 at 1:20 pm
Two of my ex-girlfriends (still good friends) have had a LOT of success with acupuncture for migraines. One was even having rebound migraines that meant she had to take her meds daily. The other is using acupuncture for fertility too.
October 14th, 2009 at 9:18 am
I just recently noted you post on migraines. Yes, they are hormonally related. This happens in the pregnant and nonpregnant state. Medication does help and need not be scary stuff. REgardless of treatment type, migraine suffers are at an increased risk for stroke. Thus prevention needs to be the focus. There are multiple medications now to help with this problem. You need to see a migraine specialist – yes there are people who do this. Start at the closest medical school. If they don’t have a program, try Emory. Do not take Imitrex or anything related to it. It could cause your transient symptoms to become permanent.