Reader Stories

Your Headache Stories, Part 2: From Audra

Audra, a public relations professional in her late 20s, has lived with CDH for 10 years. Here’s her story:

My headaches started when I was 17, or about 10 years ago, and now I can’t even imagine life without them. I got a cold, including a sinus infection, cough and headache. Everything went away except the headaches. We’ve never nailed down a cause for the headaches and their pain level has escalated over the years.

The first thing on my mind when I do anything is the pain. If I go out to dinner, will the restaurant be so loud that I can’t handle it and will have to leave? If I go to church this morning, will they play the trumpets and make me want to run from the back pew before I feel like my head has been shot out with bullets?

I do have to be thankful though, because I am high-functioning and go to work nearly every day, but sometimes it’s a struggle, and it’s my social life that suffers and my poor husband who misses out on time with me, because by the time I push myself through the pain each day, by nighttime I’m usually exhausted.

I’ve tried so many things — things all headache sufferers have tried – dozens of medications and IV therapy to prevent, as well as “rescue” when the pain is horrible and alternative treatments such as chiropractic, acupuncture, herbs, physical therapy, etc. One after another doctors tell me they don’t know what else to do for me.

Each time I try something new I get my hopes up – why I don’t know. My last neurologist really got them up, he was so aggressive and presented such a well-rounded plan, but ultimately he too told me he couldn’t help me. He told me that my persistence to live my life as normally as possible was stronger than any medication he could give me.  Thanks for the compliment, but I’m still in a lot of pain.

So, I sought out the next level and I’m seeing a doctor at the Diamond Headache Clinic for a couple months. While I’m still in pain every day, I have been feeling better the last few weeks on the new treatment plan. We’ll see — often my body figures out what the latest “trick” and finds a way to overcome it.

For another reader’s perspective, see Jantha’s story. If you’d like to share your story with readers (or just with me), please e-mail me.

Reader Stories

Headache Sufferers’ Stories

Hearing stories of other people who struggle with headache can bring tremendous comfort. Although none of us would wish this upon anyone, knowing you’re not alone affirms that your suffering is real and that there’s always hope.

Lisa’s headache story, from iVillage, is a snapshot of the life and coping mechanisms of a working 42-year-old mother and grandmother. You not only see what she’s gone through, but she also shares her best advice and a glimpse of her daily routine.

What’s your story? I’d love to hear it and, if you don’t mind, share it here so that others with headache can learn from it.

Books & Products, Reader Stories

Claire’s Head: The Life of a Migraineur

Claire’s Head, a novel that will be released in the US in September, is a stunning depiction headache pain and treatment, desperation, and hope. Written by Catherine Bush, a migraineur, the novel is an examination of the relationship that someone with migraines has with him or herself and with others. Even if your headaches aren’t migraines, the struggle is probably familiar.

An Amazon review I read said that the first 150 pages are good, but the descriptions of headaches get old. The repetition might be annoying, but that’s the point. Frequent disabling headaches are bothersome and do interrupt the plot – whether it is the plot of fictional characters or real people.

If you have a hard time telling your loved ones what your headaches are like, pass this book on to them. There’s no way anyone can deny the reality of the pain after seeing it spelled out so well in this novel.

I feel like I’m writing an 8th grade book report when I say this, but reading Claire’s Head was like reading my own diary.

Note added Aug. 16, 2005: I copied this review so I could include it in an Amazon review and realized that I didn’t include a major part of it. While my ego would prefer if I just ignored this fact, I can’t mislead my dear readers.

The truth is, the book is great for showing the agony of headache, but isn’t a compelling novel. The plot isn’t believable, which makes the story boring. I still recommend the book, as it is great for showing headache pain, but don’t expect to have your socks knocked off. Despite this, the characters’ agony was enough to engage me for the first two-thirds of the book.

Sorry for the oversight.

Coping, Friends & Family

Faking It

I’ve just realized that most of my posts so far imply that my headaches are fairly mild and easily treated. I’ve actually had an awful month with at least 20 days where my headache has been a 6 or higher on the 1-10 scale.

You see, I’ve been pretending that the pain isn’t too bad for so long that I’m inadvertently doing it here too. I’m not sure if I remember how to talk to anyone except my husband without downplaying or ignoring the pain. For example, my mother-in-law was in town last week and asked one day if I had a headache. My response? “No, it’s not too bad. It’s only intermittent stabbing pain.”

It’s a downer to always be in pain, so I try to avoid talking about it. When I do, I dismiss the severity of it. Is this being fake? I don’t think so – I’m still me. I want to be more than my headaches and I don’t know how to do that without minimizing them. I’m pretty confident that most people living with chronic pain do the same thing.

For the blog, I’m not sure how to balance being positive with being up front about my pain levels. Please bear with me while I try to figure it out.

Chronic Migraine, Coping, Reader Stories, Treatment

In a (Large) Nutshell

Some readers have asked me to share my story, so here it is. Be forewarned, it’s long!

I’m 28 and have had bad headaches for as long as I can remember. They became daily around the time I was in middle school. My doctors said it was just a headache, so I ignored the pain or treated it with Advil, Tylenol and caffeine.

I have no idea how many painkillers I took in a day, but by college, I took four at a time more than twice a day. I tried special pillows, thinking that my neck got strained in the night. I thought grinding my teeth might be the culprit, so I had a mouth guard made. I also had TMJ surgery. Nothing helped.

In the year before I graduated from college, I had an illness that couldn’t be diagnosed. I was nauseated and tired, and had dizzy spells. I had headaches at the same time, but they were still “just headaches.” The doctor eventually told me that sometimes people can’t deal with major life events, like graduating from college, so they invent illnesses to avoid dealing with the events. To him, I was one of these people.

The headaches got worse over the next few years, but were still secondary to vertigo and nausea. I was diagnosed with and treated for Meniere’s disease (a diagnosis that was later dismissed). Then I sought to treat the headaches separately. I didn’t think I could have migraines – I don’t have auras and rarely have one-sided pain – and it never occurred to me that the three symptoms could be related. I went through round after round of allergy tests, got weekly allergy shots, medicated for sinus infections and had multiple scans of my sinuses. I had surgery to correct a deviated septum and had small structures and the top of my nose shaved to reduce pressure. None of the tests showed much and the treatments didn’t help.

At the end of 2001, the headaches began to wake me up every night, about four hours after I went to sleep. This had happened before, in spells that lasted no more than a few months, but this time it scared me. I went to my GP in mid-January to see if he had any ideas about what was going on. He recommended treating the headache pain and figuring out its cause.

This started me on several years of seeing specialists and trying practically every medication and treatment available: triptans, ergots, anti-depressants, anticonvulsants, sleep aids, painkillers, Botox, massage, acupuncture, relaxation, diet modification and so on. After all the tests, the diagnoses were migraine and transformed migraine (a.k.a. chronic daily headache).

Having a name for the problems didn’t help much. I still had daily headaches and migraines at least four times a week. I kept working for a while, but wasn’t up to par. I went down to part-time and then, when we had to move for my husband’s job, quit working altogether. I spent the majority of my time in bed and wondered how long it was worth living with the pain.

I didn’t respond to any treatments that usually help those with hard-to-treat headaches, so my doctor told me about occipital nerve stimulation. This experimental device, which is for people with untreatable migraine, essentially scrambles the pain signals that are sent along the nerve responsible for communicating migraine pain. An expensive and unproven treatment, a nerve stimulator seemed like my last resort. I had it implanted in December 2003. The stimulator has definitely reduced the pain, but it hasn’t given me any pain-free days. My daily headaches now hover around 3 on the 1-10 pain scale and, on average, I’m bedridden one or two days a week. I still can’t work.

After the stimulator was in, I spent more than a year adjusting my expectations. More than having to learn to live with constant pain, I had to face – and accept – that I may never find a miracle cure. I can’t describe how horrible this was and how shattered I felt. It was ugly. I was so tired of fighting that it took me 16 months (and trouble with the stimulator) to go back to the doctor.

I’m coping pretty well now. I take Cymbalta, Wellbutrin and amitriptyline. I’m on a restricted diet to sleuth for food triggers. I do a modified form of yoga that doesn’t interfere with the stimulator. I try to relax and let go of my perfectionism. I drink a lot of decaf lattes. I have fun when I can.

I have an appointment in October with a headache specialist in the city I now live in. I may try anticonvulsants again and I’m already testing a new triptan. Most of the time I’m willing to fight, but some days I only seek escape. My days aren’t easy and I haven’t beaten this disease. At least now I have the energy, mindset and reduced pain levels to try to keep it from beating me.

What’s your story? Share it in the comments section if you’re comfortable with that, otherwise you can e-mail it to me.