A Reader’s Story: Living With New Daily Persistent Headache

Andy recently “celebrated” his third year anniversary of having a constant headache. He’s determined to keep it from defining who he is, which we all know is a constant struggle.

I woke up with a headache on January 22, 2005 and it’s been there ever since. I also determined through my own research that it is New Daily Persistent Headache — it has the symptoms of chronic daily headache without the traditional migraine elements.

Most days it’s pretty mild, allowing me to live my life fairly normally as long as I’m distracted by my job, family, baseball game, etc. But it never goes away. It’s always there, and it’s really devastating to think I’ll be spending the next 50 years of my life in pain. 50 years! See how terrible that sounds? I just came across this blog for the first time and it’s somewhat comforting to know there are other people out there who can relate to that. Depressing, yet comforting.

I sometimes wish I would have been in a car accident or suffered some specific traumatic experience so I could at least pinpoint an occurrence and say, “It’s awful, but these things happen.” In my case, all I did was wake up. It’s maddening, but I try not to let it define who I am.

Like others, I’ve spent the past several years seeing many specialists and trying dozens of medications — all to no avail. I’m currently taking an extended-release form of Tramadol (and Vicodin every few days) but aside from offering a few hours of slight relief, they just make me fatigued like most of the other meds I’ve tried.

We’re all in this together, which is why it’s so important to hear stories from many different people. If you’d like to share your story with readers and me, please e-mail me or leave a comment.

For more information, see the National Headache Foundation on new daily persistent headache and Her Life in a Nutshell, a blog about the disorder.

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Self-Compassion: Life’s Easier When You’re Nice to Yourself

My massage therapist and I talked about self-compassion — and how little I have — for most of my last 90 minute massage. I wrote this post in 2005 and have improved some, but have a long way to go. (As evidenced by my evaluation of my progress toward self-compassion.

Having Compassion. . . For Yourself

A new study indicates that having compassion for oneself may help people deal with life’s difficulties. Although the examined specific instances of failure, the findings may also help us learn to live with illness. Not that we’re failures because we’re sick, but that the self-blame that chronic illness invites is similar.

When Life Is Rough, Self-Compassion May Help: To Bounce Back, Cut Yourself Some Slack, Study Shows

“If life is a journey, we all run into potholes, and new research shows that those jolts might not be so bad if you treat yourself with compassion.

“In other words, lighten up on yourself when failure comes your way. Self-compassion might even help more than high self-esteem, report researchers from Wake Forest University.”

I hadn’t thought of it as self-compassion, but one of my newer methods for coping with headache is to try to avoid blaming or criticizing myself for having them or for letting them affect my life. Notice the words “try to” in that sentence. Success is often elusive, but I don’t berate myself as often or as severely as I once did. These baby steps feel like a huge accomplishment. And I’m much more comfortable in my skin if I have compassion for myself.

(To read more details of the study, see Psychologist Finds Self-Compassion Helps People Cope with Failure)

Nominate Your Headache Care Provider for The National Headache Foundation’s Healthcare Provider of the Year Award

There’s still time to nominate your favorite headache care provider for the National Headache Foundation‘s Healthcare Provider of the Year Award. Submissions are due March 14.

The National Headache Foundation Healthcare Provider of the Year Award recognizes an outstanding healthcare provider. The award is open to physicians, physician assistants, nurse practitioners and nurses serving patients with headaches and practicing in the United States or U.S. territories. Patients, friends and co-workers may nominate healthcare providers. A selection committee compiled by the National Headache Foundation will judge nominations based on the following criteria:

NOMINATION CRITERIA

Scope of Care
Nominee must be a physician, physician assistant, nurse practitioner or and nurse who cares for or serves patients with headaches.

Quality of Care
The nominee must demonstrate a high level of clinical expertise and a commitment to improving healthcare delivery to headache sufferers.

Dedication
The nominee must have demonstrated extraordinary dedication to patients with headaches during the year and throughout his or her career.

The Healthcare Provider of the Year Selection Committee will review all nominations. Current members of the National Headache Foundation board of directors and staff are not eligible to participate as nominees in the Healthcare Provider of the Year program.

The nomination form (with applicable attachments) must be postmarked or received at the National Headache Foundation office no later than March 14, 2008.

Nominations can be submitted via email to nhf1970@headaches.org. Completed nomination forms can also be mailed to:

National Headache Foundation – Healthcare Provider of the Year
820 N. Orleans, Suite 217
Chicago, IL 60610-3132

For additional information, please call (888) NHF-5552 or email info@headaches.org.

Nomination Form (Word file)
Nomination Form (PDF)

The Great Pillow Experiment: Results Not Encouraging

Pillow_neckMy joy following the Great Pillow Experiment was sadly short-lived. The day of my original post was the best and the next day was pretty good. The relief dropped dramatically and I haven’t found it since. That was almost four weeks ago.

I tried a new pillow combination three nights ago. My neck and shoulder pain has lessened. While the chronic daily headache is unchanged, the migraine episodes haven’t been as severe as they were the past couple weeks.

If this doesn’t pan out, I’m not sure what’s next. My sensitivity to odors rules out memory foam, latex and the synthetic filling of most pillows. I’ve tried wool, buckwheat, down, and organic cotton over buckwheat, all to no avail. These fibers may be perfectly fine, but the pillow construction is never right.

The pillow of my dreams is shaped kind of like a memory foam pillow. There’s a densely stuffed ridge at the bottom to hold my neck in the right position and a dip above to keep my head at the correct angle. Maybe I should build my own.

Generic Form of Migraine Abortive Imitrex Available By December 2008

Sumatriptan, the generic form of Imitrex, is scheduled to be available by the end of 2008. Although Imitrex is available as a tablet, nasal spray and injection, sumatriptan will only be available in tablets of 25, 50 or 100 mg. It will be distributed by Ranbaxy.

In the meantime, you can save on the pricey prescription by signing up for $25 off Imitrex coupons from GlaxoSmithKline. I was skeptical because your mailing address is required to receive the coupons. I signed up a couple years ago and it hasn’t been intrusive. Mailings are about four times a year and there’s no indication they’ve sold my address.

[via Dealing With Headaches]

Link Between Antiepileptic Drugs and Suicidal Thoughts or Behaviors Distilled

FDA’s warning about suicidal thoughts and behaviors in people taking anti-seizure meds distilled: “For every 1,000 patients, about two more drug-treated patients experienced suicidal thoughts than placebo-takers, FDA concluded,” according to New York Times article FDA Warns of Risks From Epilepsy Drugs. Other article highlights include:

Very rarely were suicidal thoughts or behavior reported. Still, the FDA found drug-treated patients did face about twice the risk: 0.43 percent of drug-treated patients experienced suicidal thoughts or behavior, compared with 0.22 percent of placebo-takers.

The FDA found drug-treated patients were at increased risk no matter their diagnosis, but that the risk was highest for epilepsy sufferers.

If you’re worried about a medication you’re on, don’t stop taking it without talking to your doctor. Stopping anticonvulsants abruptly can cause seizures or other neurological effects.

See Antiepileptic Drugs Linked to Increased Risk of Suicidal Behaviors and Thoughts for the full FDA warning. The 11 medications mentioned:

  • Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
  • Felbamate (marketed as Felbatol)
  • Gabapentin (marketed as Neurontin)
  • Lamotrigine (marketed as Lamictal)
  • Levetiracetam (marketed as Keppra)
  • Oxcarbazepine (marketed as Trileptal)
  • Pregabalin (marketed as Lyrica)
  • Tiagabine (marketed as Gabitril)
  • Topiramate (marketed as Topamax)
  • Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
  • Zonisamide (marketed as Zonegran)

Antiepileptic Drugs Linked to Increased Risk of Suicidal Behaviors and Thoughts

Patients taking antiepileptic drugs had nearly twice the risk of suicidal behavior or thoughts than those taking a placebo, according to FDA analysis. Epilepsy drugs are commonly prescribed for migraine or headache prevention.

FDA informed healthcare professionals that the Agency has analyzed reports of suicidality (suicidal behavior or ideation) from placebo-controlled clinical studies of eleven drugs used to treat epilepsy as well as psychiatric disorders, and other conditions. In the FDA’s analysis, patients receiving antiepileptic drugs had approximately twice the risk of suicidal behavior or ideation (0.43%) compared to patients receiving placebo (0.22%). The increased risk of suicidal behavior and suicidal ideation was observed as early as one week after starting the antiepileptic drug and continued through 24 weeks. The results were generally consistent among the eleven drugs. The relative risk for suicidality was higher in patients with epilepsy compared to patients who were given one of the drugs in the class for psychiatric or other conditions.

Healthcare professionals should closely monitor all patients currently taking or starting any antiepileptic drug for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression.

The drugs included in the analyses include (some of these drugs are also available in generic form):

  • Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
  • Felbamate (marketed as Felbatol)
  • Gabapentin (marketed as Neurontin)
  • Lamotrigine (marketed as Lamictal)
  • Levetiracetam (marketed as Keppra)
  • Oxcarbazepine (marketed as Trileptal)
  • Pregabalin (marketed as Lyrica)
  • Tiagabine (marketed as Gabitril)
  • Topiramate (marketed as Topamax)
  • Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
  • Zonisamide (marketed as Zonegran)

Although the 11 drugs listed above were the ones included in the analysis, FDA expects that the increased risk of suicidality is shared by all antiepileptic drugs and anticipates that the class labeling changes will be applied broadly.

I don’t know anything else right now, but will update you when I learn more.