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VNA of Care New England

In Her Own Words: Living With Chronic Migraines

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Patricia is a 32-year-old criminology professor at a state university. She is married and has a five-year-old son and a three-year-old daughter. They live in the suburban area where her husband grew up.
What was your first sign that something was wrong? What symptoms did you experience?
I first had a problem in graduate school when I developed a rapid pulse rate and high blood pressure for no understandable reason. I would also get hot flashes. Shortly thereafter, I developed the worst headache I’d ever had behind my right eye and on the right side of my head. I went to the university clinic to see a doctor there. After an initial exam, he concluded I had a migraine, along with other problems. He prescribed some medication that helped a bit.
What was the diagnosis experience like?
I saw various doctors at the university clinic. I had insurance that only covered my visits to the clinic and really did not cover specialists. I was referred to a cardiologist eventually, but not a neurologist or headache specialist until just about 6 months ago (I’m now in a new state with new insurance).
What was your initial and then longer-term reaction to the diagnosis?
I had heard of migraines, and discovered that my mother experienced “painless migraines”. I was very uninformed and just assumed it was a headache, something I’d deal with from time to time. Now I realize that migraines are not just headaches, and dealing with chronic migraines is more of a challenge than I’d ever have imagined.
How do you manage your disease?
I am currently managing this disease, but not very well. I have tried several types of medication: five migraine abortives, eight rescue pain medications, and five migraine preventives. I am currently taking two preventives—Prozac and Atenolol. I use two abortives—Amerge and Relafen (which is more of a rescue) when a migraine hits, and I use either Darvocet or Fioricet as a rescue, but only 2 times a week—same for the Amerge and Relafen.
Recently, I began to have menstrual migraines for the first time. For this type of migraine, I am now trying Relafen 2 times a day starting 2-3 days before I expect the headache (which is hard for me because I am irregular). I also use Benadryl (generic), ginger, and/or Reglan (generic) for nausea. Now I can knock out the nausea within an hour, which is a new and wonderful thing!
I am also trying “alternatives”—I recently started taking 500 mg of feverfew every day, and I do see some improvement. I also take magnesium and vitamin B2. Since I am prone to stomach ulcers, I have to be careful with the feverfew, B2, and Relafen. So I also take ginger for nausea or upset stomach, and drink chamomile tea when my stomach hurts. I take Tums during the day if necessary, but not within two hours of taking any medication.
Without my husband, I couldn’t do what I do. He’s learned what to do when a migraine hits: he immediately gets me coffee or diet coke, makes toast for me to eat when I take medication, etc. And even my five-year-old son will trot over with sunglasses, because light (even from the television) hurts my eyes.
I joined two on-line support groups to get and give support. I did not realize there were so many people struggling with the same disease. I have done a lot of research—books, websites, journal articles—on migraine, stroke, epilepsy, anything I can get my hands on.
Most importantly, I was referred to a headache clinic and work with a doctor and nurse practitioner who specialize in migraines and work closely with me. I’ve had to take my health firmly into my own hands and help direct my care. I’m not particularly assertive, but this disease has made me so, at least as far a migraine care is concerned.
Did you have to make any lifestyle or dietary changes in response to your illness?
I’ve made LOTS of changes. I go to bed at the same (early) time every night now. I get up early in the morning to avoid any “sleeping in” headaches that can morph into a migraine. I drink just about the same amount of caffeine every day—not too much, not too little—to avoid caffeine withdrawal headache and allow the caffeine to help me. I kept a food journal for four months, trying to identify a food trigger (to no avail). I drink almost no alcohol now because I fear it might trigger a headache. I try to exercise almost daily to release endorphins that might help.
I cut back on committee work on campus to avoid very heavy stress, since stress is the only trigger I identified. I also make sure to drink as much water as I can every day, because that seems to help. And mostly, I just try to stay healthy. I take a lot of vitamins now. I recently bought some books on meditation and relaxation and plan to look into this as well.
Did you seek any type of emotional support?
I seek emotional support from my family and from the two online support groups. Sometimes people who do not have this disease do not understand it. They have the attitude, “take some aspirin and get over it.” But it’s not that easy. So it’s really helpful to know others have the same problem and go through the same stuff.
Did/does your condition have any impact on your family?
Well, both my five year old and three year old know what a migraine is. I have missed some birthday parties (for their friends), trips to the theater, school parties or events, trips to the zoo… all because of the migraines. That can upset my kids, but all in all, they handle it well. My husband is nothing but supportive, though I don’t think he really understands the disease—but then, neither do I. The rest of my family lives far away, and I don’t think they have any idea what migraines have been like for me.
What advice would you give to anyone living with this condition?
I would tell anyone living with this condition several things:
Read as much as you can about this disease so you can have an informed conversation with your doctors.
Find a specialist right away—not just a neurologist, but a headache/migraine specialist.
Listen to that specialist—give the medications and/or therapy a try no matter how bizarre it sounds.
Most importantly, trust yourself. If a medication is making you sick or making things worse, tell your doctor firmly that you need to discontinue it.
Try alternative therapies like herbs, acupuncture, etc. under the direction of your doctor (or at least informing him/her).
Tell your family and friends what migraines are like so they can have some understanding of what you are going through.
Know your rights at work, in case you need to take a step back and slow down.
Find people who will listen to you and not judge you—online support groups are really great that way!
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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