Your Headache Stories, Part 1: From Jantha

All of our stories are unique, yet the similarities run deep. By reading other people’s headache stories, we can learn from and get comfort from each other.

Jantha describes the moment her headache began, the diagnosis and drugs she’s tried, and the impact it has had on her relationships.

On March 6, 2001 at about 8 p.m. I developed a severe headache. It felt like like a giant was holding his hands against my ears and pressing with as much strength as he could on my head. This pain has not ceased since, five years and counting. I have been diagnosed by a specialist with NDPH [new daily persistent headache] caused by thoracic outlet syndrome.

I have taken Migranal, Epidrin, Cymbalta, Depakote, Fiornal, Elavil, Effexor, Keppra, Valium and all of the triptans, to name a few. That’s all I can recall, given my reduced mental capacity due to the aforementioned substances! All in a year and a half. I am currently on Lyrica, Veralen PM and Effexor with Topomax thrown in lately (Dopamax or Stupemax as it is known).

For reasons that are obvious to me, I am just about to lose my low level job and my few remaining friends. After all, five years plus of hearing someone whine about their pain is more than just about anyone can take, however noble they may be.

On the plus side, I have finally received some relief from Lyrica and Verelan PM, and Topamax seems to help with the pain also, although it wipes my memory. I find myself groggy, stupid and fatigued but relatively pain free… as opposed to awake, sharp, energetic and ready to cut my head off due to pain. I guess 0=0 in this case.

I can’t understand why they can’t just hook me up to their fancy machines and determine what’s wrong with me and fix it. I alternate between hope and despair.

Jantha ended her e-mail to me by saying, “It helps to know others are going through similar experiences and coping somehow.” And this is why it’s so important to hear stories from many different people. If you’d like to share your story with me and/or readers of The Daily Headache, please e-mail me.


Headache Types: Mayo Clinic’s Online Headache Center

Right after I made a note to myself to blog about different headache types, the latest issue of Housecall, Mayo Clinic’s weekly newsletter, arrived in my inbox. The issue’s feature was, you guessed it, headaches.

Mayo’s online headache center has a wealth of information on headache types, pain meds and self-care. The headache types covered are:

For each type, there is an extensive subset of topics, including signs and symptoms, causes, screening and diagnosis, coping skills, and prevention.

The headache center is a terrific place to discover more about this illness. Poke around for a while — I guarantee you’ll learn something new.


Questionnaire to Ease Visit to New Doctor

The National Headache Foundation‘s website has a headache questionnaire that’s a valuable tool for people with undiagnosed or vaguely diagnosed headache and their doctors. The form has 54 questions, including, “Do you tend to pace the floors with a headache?” and “Do odors such as perfumes or gasoline fumes ever trigger a headache?” Looking at your answers can help your doctor determine if you headaches are migraine, tension-type, cluster or something else.

Giving your headache can be overwhelming and there’s a chance that you’ll forget an important piece of information. This questionnaire makes the storytelling easier for you and helps your doctor get all the information he or she needs.

Update 6/19/13: I can no longer locate the questionnaire on NHF’s site, but you can see it in this ENT’s patient form.


An Extra-Special Birthday

My mom turns 61 today. She won’t be happy that I told you all how old she is (she insists she’s 27), but I am because I’m thrilled that she made it to 61. Days before her 60th birthday, she had brain aneurysm rupture. In med speak, it was a subarachnoid hemmorage.

While getting ready for work on that Thursday, she was hit with a sudden terrible headache, unlike any headache she’d had before. She felt sure that it was an aneurysm, but after she and my dad talked about all the people they knew who’d had awful colds in the few weeks before that, she didn’t go to the hospital, thinking she must have a cold.

After working the rest of the week and most of the weekend, she flew to Kansas to visit family. She had been feeling better, but after the flight, her head was raging and she was nauseated, weak, exhausted and disoriented.

Tuesday she went to the ER and had several tests, including a CT scan. Nothing turned up, and the doctor said it was probably a migraine. Nevermind that 60 is a strange age for migraine onset and it was nothing like her previous headaches. When she told me the diagnosis, none of this crossed my mind. I just said, “Oh, OK, what are you taking?” Then I told her that Advil would help more than Tylenol and left it at that.

She was in and out of ERs across Kansas for the rest of the week. She was given fluid and painkillers and doctors did more tests, none of which showed a problem.

Saturday morning she sent my dad to get coffee. He came back to find her passed out on the floor. An ambulance whisked her off to the hospital, where more tests showed that she had an aneurysm rupture that morning. It was actually a re-rupture; the first happened the previous Thursday. Turns out that CT scans show blood in the brain resulting from a rupture and the blood is visible for a short time afterward.

She was airlifted to the Nebraska Medical Center in Omaha, where she stayed almost three weeks and underwent three surgeries.

A year later, I’m happy to say that she is alive and well, with no lingering problems.

Several of the ICU nurses called her survival a miracle. I have to agree. Happy birthday, Mom!

I’m still one to say that more than 90%  of headaches are not caused by catastropic problems, like an aneurysm or brain tumor. But that doesn’t keep headache sufferers (including me) from worrying that they’re in the minority.

To learn more about brain aneurysms, see the Brain Aneurysm Foundation’s information section. Specifically, reading about the symptoms will help ease your mind.

This isn’t just my mom’s one-year anniversary, it’s also Brain Aneurysm Awareness Week 2005. I have yet to see publicity on this beyond the Brain Aneurysm Foundation, but I’ll share it with you if I do.


Headaches 101

Throbbing, pulsing, pounding, stabbing, tightening, squeezing, jabbing, piercing, paralyzing. You may dismiss the pain as a sinus or allergy headache or panic that you have a tumor or a ruptured aneurysm. In either case, the odds are that you have tension-type headache or migraine that doesn’t follow the typical pattern, but you still have to quell the nagging doubt. Besides, whatever your self-diagnosis or fear, headaches are easier to treat the sooner you find their actual cause.

ABC News has some overview videos that can help you understand your headaches better. These links will take you to each video transcript, where there’s an option to view the video.

The National Headache Foundation is a great resource for more detailed headache information.

2/16/10: It is no longer possible to link directly to the videos. You can access the videos by following the link, then searching for the video title.