Help My Hurt

Company’s calling - another migraineur speaks out

by Marijke Durning, RN on March 31st, 2008

Pam, who referred to herself as a “Connecticut Yankee currently living in Israel” is another guest who lives with migraine pain. As with most migraineurs, her story is eerily familiar, yet different too.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

30 years ago, I was 20, home during the summer having finished junior college before going to university. I woke up late afternoon from a nap with what felt like a railroad spike through my left temple and left eye. I found my way to the door and was calling for my mother (instinct is strong isn’t it?) who was outside hanging up clothes. I woke up my dad in the next room who had also been taking a nap.

I knew it was a migraine. I was well-read and my maternal grandmother had them, so my mom told me.

Did you seek help right away? If so, what type of help and, if not, why not?

Took aspirin or acetaminophen, I can’t remember which, had an ice pack on my left temple and lay in the bed with the curtains drawn and the lights off. The pain passed in 2-3 hours. We went to the doctor on the following Monday, office hours ended by 1 pm on Saturdays.

What did the doctors tell you when you did seek help?

I told our family doctor what I had and he agreed. No food trigger or stress was responsible for the initial hit. We often had thunderstorms during the summer in Connecticut so if one was coming, the drop in barometric pressure could have caused it.

Over 30 years I may have had 3 auras–the flashes of light that 1 in 5 migraine sufferers get but it’s a phenomenon that is interesting and makes the news over the mass that don’t get them.

Pretty much the response in the last 3 decades has been: ‘Try this — fill in the blank.’ Pharmaceutical companies push their drugs as cure-alls but only 1 out of 5 people get any relief though all 5 pay for a drug that is useless to 80% of them. Doctors are poor at pain management and prefer to think that anti-depressants will stop pain which actually makes it worse since I’m taking the stuff, I still have the headaches and I’m more depressed! When I told doctors about a drug they proposed, ‘I tried that already’ the doctors’ response was, ‘let’s try it again’. Oh yes, and they accuse long term sufferers as being pill junkies and addicts. That was always helpful, NOT!

What have you tried to help you with your pain?

Drugs, diet changes, meditation, acupuncture. I had an MRI and CT scans so the good news–nothing there, the bad news–nothing there to fix…

Can you tell me a bit about what worked and what didn’t?Beta-blockers and calcium channel blockers did nothing, blood pressure regulators and steroids were useless.

Drug wise I took: Cafergot, Inderal, Elavil, Fiorinal, naproxen sodium, Depakote, Sansert, Pheyntoin, Lithium, Amitriptyline, Prozac, Butabital, Alprazolam, Midrin, Axocet, Chromagen, Percocet, Atenolol, Ultram, Deltazone, Prednisone, Neurontin, Acetazolamid, Verapamil, Trazedon, Stunarone, Tegratol, Topamax, and Imitrex. Compazine for the nausea did its job. Tylenol with Codeine #4 is the only thing that reduced the pain level by 25% or so.

Topamax actually caused auras and dizzy spells. It also changed the taste of artificial sweeteners to a sour taste so I was off my diet sodas.

I had been a guinea pig at a headache clinic in Stamford to try the injection of Imitrex when it first came out. It did nothing. Neither did the Imitrex inhaler or the pills.

Reiki helps when I can’t sleep for the pain.

How does having this pain make affect you in terms of how you live your life?

In my later 30s, I had gone back to college to take courses to become an RN, changing my career from a graphic artist. Due to either the headaches or the side effects of the drugs, I had trouble focusing and I missed classes. I had graduated Summa Cum Laude at 21, now my memory was bad, my handwriting changed–not that it was good but even I couldn’t read my notes and I had to stop my dream. Eventually I had to quit work and returned home because I couldn’t afford to live in my own place any more. I went on disability and live my life around the pain.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I’ve tried many things and read up on even more. I do believe it’s a good idea to rule out physical problems by getting an MRI and a CT scan. My food trigger is dried beans/peas. They have a natural mold on them, like the silvery mold on plums or grapes. Dried peas and beans in soups etc will cause a massive headache for me in 20 minutes or less. Low barometric pressure is also a cause: I can feel the storm coming in my head. Menstrual changes and hormone levels just before my menses will give me a migraine. Cleaning chemicals can be a trigger so can fluorescent lights that are felt by the brain though the eye doesn’t see the cycling energy. Caffeine sometimes helps, chocolate is not a trigger for me. My triggers are: moods, foods, stress and PMS. Meditation, subsisting on brown rice, moving to the desert and getting a sex change is not realistic, though it is possible. I’m hopeful that with menopause I’ll lose a quarter of my triggers.

I still won’t get a Botox injection. It’s poison derived and I’m just not comfortable with that. Granted most medicines can be toxic in the wrong dose and in lethal combinations, but I’m not going to take a risk with botulism in my head.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Migraines are different in each person, the headaches have different triggers, sometimes multiple triggers. Control what you can in the way of foods, cleansers, lighting for work and home, with whom you associate, and how you react to stress. Finding what works can take decades, the triggers will change too. Be informed, many drugs to prevent headaches can also cause them.

Would you like to add anything?

Since leaving the workforce, I’ve discovered my writing voice. I can channel my pain and aggression into characters, I can make worlds, and I can cope.

Thanks for sharing your story Pam. It’s hard when we have tried so many things to manage the pain – all we’re asking for is *1* thing to work!

If you have a story about living with pain and would like to share it in a future Company’s calling - please let me know. Anyone is welcome - even if you think your story isn’t interesting, it most likely is!

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Image: iStock.com

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POSTED IN: Company's Calling, Headaches/Migraines