My headaches

Generally, when I’ve thought of writing about my headaches, it would have been in the form of a rant, possibly with swearing involved. Since I like to keep a clean blog, I’ve avoided this. Happily, I’ve gotten to the point where I’m ready to blog about my headaches. I guess I could say I’m in “recovery.” That’s not to say that I’m cured or headache free, but things are better than they’ve been in a very long time.
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I’ve had a problem with headaches for over half my life. My diagnosis is mixed, daily headaches, which include both tension and migraine. They began when I was about 12 and first needed glasses. In those days, they would be resolved with a new prescription. By my late teens, they were more frequent and not so easily resolved. When I got to college I began seeing doctors for them – both a blessing and a curse. It has been good to rule out serious problems like tumors and aneurysms, but not necessarily good to begin taking strong painkillers on a daily basis. As it turns out, the over-the-counter stuff is just as dangerous when it comes to chronic daily headache, so I was probably doomed in that regard anyway.
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For nearly 20 years, I’ve been taking prescription pain meds and for many of those years they worked well. Most days I could take one in the morning and be pain free the rest of the day. However, after 17 years or so, I began having rebound headaches. What is rebound headache? It’s a nasty problem in which the medication that relieves the headache causes another as it wears off, necessitating more medication, which causes another headaches and you’re in a nasty cycle. It can become difficult to know if you really have a daily headache problem or just rebound headaches. And who wants to give up their pain medication to find out? It’s a terrifying thought and many need to go to the hospital to do it. Unfortunately, OTC (over-the-counter) meds like aspirin, Tylenol, and ibuprofen are just as likely to cause rebound headaches as the stronger prescription stuff. So can caffeine. It’s a sticky problem – not quite the same as addiction, but possibly as devastating. At first I was taking 2 pills a day, which went well for a few years. When I began needing 3, things weren’t working anymore. I was in pain more than I wasn’t.
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All this time, I have experimented with preventative medications. These are medications that are taken daily, whether you have a headache or not, that are supposed to prevent a headache from occurring at all. There are many types – antidepressants, seizure drugs, and blood pressure drugs are the primary ones, I believe. I have tried many from each class over the years. I even tried a course of Botox a few years ago. While the forehead paralysis fascinated me, it did nothing for my headaches and was very expensive and not covered by our insurance. Most of the preventatives did nothing for me. A few caused nasty side effects and did nothing positive for me.
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Every 6 months or so, I went to my neurologist or regular doctor, feeling like a drug addict, hoping a better treatment will be found and in fear that I’ll be cut off from the pain pills. What a crummy way to live. I hated feeling like a drug addict! Finally, in the fall of 2005 I went to my neurologist and he put me on yet another seizure drug, which began quite a strange love-hate relationship. The stuff made me feel nauseated and stupid. Stupid, you say? My memory isn’t the best to begin with, but this made it terrible. Cognitively I just slowed down. Ironically, I’m a cognitive therapist, so I was quite in tune with this. There was a few days that my auditory processing was so slow that it took me about 3 seconds to figure out what someone had just said. Once I figured this out I knew to wait for it to compute, but it made it impossible to participate in conversations. I really began to understand why some of our clients with brain injury call themselves stupid. I’ll tell you, 3 seconds is a looooooong time in conversation. We do empathy training where I work. We spend a few hours using wheelchairs and other assistive devices, glasses that impair our vision and headphones with hallucinations playing in them to get the feel of various disabilities. Well, I had a few days of empathy training when I began this drug. I called my doctor and said, “NO MORE!” Here’s the thing… it helped the pain. I even managed to get off the prescription painkiller, which I knew was causing rebound headaches, but also, very hard to give up. So, I agreed to stay on a reduced dose of the seizure drug and after several weeks, without nausea, I called the doc and said, “how about we increase this stuff?” He must have thought I was nuts! I was very determined to stay of the prescription painkiller and this drug seemed to be the key. This time we increased it very slowly and I kept my cognitive functioning and had no nausea.
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After getting off the prescription painkiller, I started experimenting with diet. There are many migraine triggers – some food, some environmental, some stress-related. The food triggers are probably the easiest to control, but they aren’t really so easy to systematically avoid. I had tried elimination diets before, but with constant rebound headaches from the painkillers, how would I know if something was a trigger? So I wanted to try again. Some of the biggest culprits are red wine, aged cheese, chocolate, caffeine, and the nitrates in lunchmeats. I had given up red wine long ago, as it gives me an instant migraine. Now I found extensive lists and was giving up many things at once. I kept lists on the refrigerator, at work, in my purse, and in my lunch bag. The Husband was constantly checking in about what I could and couldn’t eat. I found a list that included tomatoes as an infrequent trigger and included that – and thank goodness I did. It turns out that concentrated tomatoes will give me a migraine with a lingering headache that can take a week or two to resolve. I also avoid nitrates, which are in lunchmeats, hotdogs, and ham. I can eat aged cheese, but not large amounts. Chocolate is okay, but also in small doses. Caffeine seems okay, but I need to be cautious. Fresh tomatoes are fine, but I don’t eat large amounts. No more tomato sauce. I’ve discovered white pizza with tomato slices and lots of garlic. Yum! I do miss spaghetti with tomato sauce, other Italian dishes, and chili, but I don’t miss the headaches that they cause.
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How are things now? I take a high dose of the seizure drug. I have increased it several times over the past year and a half. It turns out that I can tolerate it well, without nausea or cognitive side effects, but the increases must be slow. I use OTC meds and triptans for pain. Triptans are prescription drugs used specifically to treat migraine pain. They treat the pain, nausea, aura, and whatever other migraine symptoms you may get. You need to be careful, though. If they are taken often enough they can cause rebound headaches, too. They also cost a bundle (about $15-20/pill), so insurance is a must! For the first time in my life, I have days were I don’t take any medication for a headache. Some days I don’t have a headache at all. Also, I’ve learned that when it comes to OTC drugs that sometimes less is more. My cousin told me that her headaches respond to a quarter of an OTC drug! That’s one eighth of the full dose on the bottle. So, I’ve really cut back and often it’s quite effective. Thanks, Cuz.
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How do I feel about taking all these drugs? Compared to constant pain, I feel pretty good. I’m probably taking less meds than before. I hate to say it, but I got past the whole taking medication thing a long time ago. I’ve tried the herbal route, too, but that didn’t do anything for me. This is about quality of life and at a certain point, sanity. When things had gotten really bad, I was so angry and that wasn’t healthy. I wasn’t angry with anyone, just the situation. I’m very grateful that right now I’m winning the battle. For a few years I was losing and when I wrote about it privately it wasn’t pretty. Now I can write calmly and informatively, which is something I’ve wanted to do. If anyone is interested in the specifics about my treatment, feel free to email me privately.

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4 Responses

  1. Oh, Cavatica, what a story. I am so glad that you are doing so much better, and that you have found solutions that are working for you. I really can’t imagine suffering with daily pain — and I agree, medication is a must in some cases for quality of life, both physical and emotional. Health really is our most precious personal resource.I had a situation (not headaches) where it took the doctor months to work out the proper medication/dosage, and I realized that medicine is often an inexact science. I’m sure that fact was very frustrating for you.At least for now, I am going to stay away from prescriptions. I am not anti-prescription, but I still get my headaches only 1-3 times a month. On occasion, even the heaviest dose of OTC drugs I am willing to take doesn’t work. If/when that becomes the norm, off to the doctor I go.

  2. Goodness…what a hard time that must be. Hard is not even the closest way to describe it I am sure.

    I am happy that you are winning the battle. Carry on and you will conquer the war!

    Keep smilin!

  3. I get migraines also although, as I remember yours, I don’t get them too frequently although even if it were just 1 a year it’s too frequent! I find that my triggers are stress, lack of sufficient sleep, and heat. Summers are miserable for me…. yes, even in Maine! I hate homes with wood stoves…. too hot for me!
    I tried the Inderal LA as a preventative but it made me depressed and so sluggish. The only triptan that seems to work for me is Frova which my insurance won’t cover since there is generic imitrex available….. too bad it doesn’t work for me! To buy the Frova with cash is about $15/pill and I usually need about 4 to knock out a migraine over several days.
    I’m still looking for the right med but, in a society with a high incidence of prescription drug abuse it’s difficult to convey the pian until I am in the midst of a migraine, in the ER, vomiting and screaming at the top of my lungs.
    Happily, I get far fewer migraines in winter with the cold weather….. I’m thinking of moving to Alaska!

  4. Wow, what a difficult time you have had. I am so glad you are starting to do better than you have for all those years.

    On a lighter note, your letter for the letter meme is “R”. Thanks for playing 🙂

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