Living with Migraine: My Journey - Still Continuing

I’ve lived with migraines ever since I can remember. I’ve also had stomach issues since I could remember. Then, when my son started having migraines, I bought a book on migraines. It went over different types of migraines, but the ones I remember most were the classical migraine. I’ve never really had an aura, but my son gets auras first; the silent migraines — you have most of the symptoms, i.e. severe electrolyte imbalance, vertigo, dizziness (until then, I thought they were the same thing), that tingling feeling you get when your foot is trying to wake up—usually limited to one side of the body—and several others; and finally the abdominal migraine. In the years since my diagnosis (when I was in my 40s) I have discovered, I have classic migraines, silent migraines, and abdominal migraines.

Abdominal migraine

Though the book said that usually, only children have abdominal migraines, sometimes it can carry over. Recently when I got a cat that started warning me when I was going to get a migraine, I realized that most of my stomach and abdominal issues were actually migraines. Sometimes all I get is nausea, severe cramping with diarrhea, and vomiting. I don’t get head pain, and I don’t get the signs of a silent migraine. But if I get the medication early enough, I can alleviate most of the symptoms, even though I have to take it easy and really watch what I eat and drink.

Silent migraine

Silent migraines put me in the hospital for a week in 2000. The neurologist said I was having seizures and had me on an eeg for 24 hours. Even though I had several episodes of vertigo, dizziness, nausea, brain fog, nothing showed up on the EEG. She then tried to tell my husband and me that I was in denial about having seizures. My GP also sided with the neurologist. I switched GP and neurologist. I then spoke to the neurologist about the possibility of having silent migraines, and that that may have been what put me in the hospital. He agreed that a silent migraine was most likely what had put me in the hospital. I told him that I was still having the same problems, but received no help. The newest GP (after 2 years of searching) listened to me, and the fact that not only did I still have the same silent migraine that had put me in the hospital, I was still getting—and the day I saw him—and currently had a classic migraine and thought my head was going to split open. He immediately gave me a shot of Imitrex and gave me oxygen. While I still got sick to my stomach, pretty soon, the head pain started easing.

My treatment journey

While he prescribed imitrex for me, the insurance company would not cover more than seven (7) pills or shots for a whole month. When the doctor argued for me, I got 14. Unfortunately, I had had the silent migraine for so long that it has never gone away—21 years later, I’m still dealing with the electrolyte imbalance and the tingling on the left side. I will admit that it is now mostly relegated to the top left of my head (just above my left temple). When I start feeling it in my cheek and eye, I know to take migraine meds.
Unfortunately, my body couldn’t take dealing with the Imitrex. They changed my medication to Zomig nasal spray (so I could still take it if the stomach issues started first). While that worked, I couldn’t take it if the migraine started at work. For me, the Zomig could only be taken when I was at home and could be in bed within 10 minutes because I would just fall asleep for several hours. Wasn’t sure what I could take, but my son, who also has migraines, told me that his neurologist recommended that he take OTC Aleve in this fashion: take 2 as soon as he had the aura or felt one coming on - if he still had pain an hour later to take another - if he still had pain after 4 hours take another one, and then not to take any for 24 hours. He said that for him it worked. So I tried it and discovered that yes it worked, but unfortunately for me, I was allergic to it and my throat started to swell shut. Now I have doctors who laugh at me when I tell them that while I’m allergic to NSAIDs—including Aleve—I take a Benadryl and an Aleve whenever I have a migraine. Unfortunately, I try not to take them that often, because I don’t want to become used to taking them and have them become ineffective—as often happens with me.

My cat as a helper

When I discovered that my stomach and intestinal issues were actually abdominal migraines, I stopped taking all the stomach medicines—which never worked anyway. Now whenever I start feeling the least bit gassy, I take something for a migraine. My cat warns me if my stomach doesn’t. Makes having migraines most days of the month more bearable. Also since we got Sprout (the cat), I have not ended up in the ER because I started throwing up and then couldn’t stop. The medication they started giving me when they saw it was me again, not only worked to stop me from throwing up, as a side effect, it helped stop migraines.

Food triggers

I also have to be very careful and read food labels or ask questions about the food that is being served if I eat over at someone’s house or if I eat out at a restaurant. Chemical additives to food are among my biggest migraine triggers. They will trigger the worst migraines I have. While stress causes my migraines also, they—for some reason—are never as bad as the migraines I get because of chemical sensitivities. I cannot eat regular ham, bacon, pepperoni, etc. Anything with nitrates/nitrites, MSG—with the many names they have been putting on the label so that they don’t actually come out and say MSG--, and artificial sweeteners are the worst offenders.

Learning my migraine signs and symptoms

I’ve been reading a lot of the articles on the Migraines website. When one of them talked about some of the things they had noticed happened before the onset of a migraine, I kept going, “I get that.” Or “I have that problem.” Now I know and with those things and with Sprout warning me, I can get to them quicker and get rid of them sooner. There are still some days that I have to take to the bed, but I’m not there as long. For all the years I’ve been having migraines, I never knew that when my hair hurt, it was a precursor to a migraine. I also never knew that when something just touching my arm, or leg made it hurt, it was another precursor to a migraine. I learned 50 years ago that I can’t take really loud noises—even when I don’t have a migraine. In fact being in a place where the noise level is really loud, means I will be having a migraine—even if I try to take something to prevent it, it won’t help. I’ve also discovered that some days, when those strands of hair that just refuse to stay where they put start touching my face and neck and they just seem to make wherever they touch hurt, that means I’m going to have a really bad migraine and may end up in bed for several hours.

Moving forward

It is not an easy journey, and it is hard when people think because you came out to work or to take care of your family, then there must not be anything wrong. I’ve often told people, “No, the reason I am here doing my job is not because I’m fine, or even okay. The reason I’m here is because I was taught a long time ago, that you still have to take care of business, even when you don’t feel good.” At home growing up, we all had chores, and I still had to do chores even when I didn’t feel good. And between migraines and asthma, I often didn’t feel good. The doctors told me that when I went through menopause, my migraines would end. Unfortunately for me, my migraines did not start with puberty, they started shortly after I was born. While I have known some people whose migraines went away when they hit menopause, I am not one of them, and sometimes it seems as though they are worse than before menopause.