Tag: CDH

30 Things Meme, Reader Stories

What Are YOUR 30 Things About Living With Migraine or a Headache Disorder?

Kerrie Smyres

Migraine and headache disorders 30 Things memeYour early response to the 30 Things meme is so exciting! I love learning about how you all cope with migraine, CDH, and NDPH and know that other readers will learn much from you (and hope people with other headache disorders will be represented, too). Some responses have even brought me to tears, like:

“My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.” —Take & Give

This reader’s insistence on gaining something from migraine is a wise approach to retaining the upper hand. So often, refusing to give the upper hand is synonymous with barging through life as if in perfect health, which often leads to worsening symptoms. Instead, this reader recognizes the loss and limitation of having migraine, but also what can be learned and gained from it. It is wisdom I try to live by, though I’ve never described it so eloquently.

Be sure to check the 30 Things Meme category and Twitter and Facebook for more insight from readers. To keep you from being overwhelmed by 10 times as many posts as usual, reader submissions are not going out by email, in RSS feeds, or on the homepage of The Daily Headache. I’ll be highlighting comments throughout Migraine and Headache Awareness Month, which starts June 1, but there’s no way I’ll be able to share them all with you.

Will you share your 30 things? Here are the instructions and links to questions: Migraine and Headache Disorders 30 Things Meme. You can tell your story and remain anonymous, if you choose. (You need to put your name and email in the form to post, but I’m the only person who will see them and I won’t send you spam.) It’s a great chance for a short reflection on your life with a headache disorder. And, each story has it’s own URL, so you can send the link to friends and family, if you wish.

P.S. I’m putting together a contest from Migraine and Headache Awareness Month and will draw winners from 30 Things submissions. I’ll share details next week.

 

Coping, Treatment

Chronic Daily Headache Prevention: Why is it so Difficult?

Kerrie Smyres

puzzle“I’ve tried everything and nothing helps my chronic daily headaches.” How many times have you uttered something similar? A HealthTalk Q & A gives some common reasons why:

  1. Medication overuse (rebound) headaches
  2. Failure to treat a co-existing medical condition such as depression or a sleep disorder
  3. Unrecognized medication-induced headaches, such as might occur from cholesterol drugs, proton-pump inhibitors for GERD, and anti-depressants
  4. Failure to investigate the possibility of relatively rare causes of headaches such as abnormalities at the base of the skull and top of the spine (craniocervical junction), intracranial hypotension (low-pressure headache), sinus abnormalities, and food or environmental allergies

Sadly, none of these reasons explain my chronic daily headaches. How about you?

photo by Erik Araujo

Meds & Supplements, Treatment

Debilitating Nausea Caused By High(ish) Magnesium Dose

Kerrie Smyres

white capsulesWoo hoo! I feel human again and it’s all because I stopped taking magnesium. Yep, magnesium, the wonder supplement that helps so many people with migraine and chronic daily headache. I don’t think magnesium itself is to blame, but that the dose was too high. Since I can’t even take a multivitamin without nausea, I was hyper-aware as I increased from my starting dose of 100 mg. Or so I thought.

At 333 mg per day, it was within the normal dose range for treating headaches of 200-500 mg per day. It was also within the recommended daily allowance of 350 mg. I’ve discovered that allowances and ranges are like speed limits: A guideline you’re not supposed to exceed, but that you don’t have to meet.

Practically every health care provider I’ve seen has recommended magnesium to me. I’ve taken it on and off over the last five years, although this is the first time I’ve taken it consistently for more than a few weeks. Because I’ve read so much about it and had it prescribed before, I thought I could adjust the dose myself just fine. I figured I’d be fine if I stayed at or under the RDA. I unwittingly fell for the myth that medications, vitamins and supplements sold over-the-counter are harmless.

The good and frustrating news: My overall head pain was less and I had fewer migraines during the time I was horribly nauseated. I’m guessing that means the magnesium helped some. I think once my system flushes the current round of magnesium, I’ll have my different vitamin and mineral levels tested. I’ll also make myself keep a diary of my symptoms and doses. I wouldn’t want to go through these last six weeks again. I felt horrible and was so scared of what might be wrong with me.

I haven’t had any blood tests, so I’m not positive the nausea was caused by excessive magnesium. But when debilitating nausea that began about the time I increased my dose goes away when I stop taking the pills, the evidence is strong enough for me.

What is your experience been with magnesium? Please leave a comment below or chime in on the online support group and forum.

Coping, Symptoms

Is Chronic Daily Headache Easier to Live With Than Migraine?

Kerrie Smyres

calendarSometimes I think coping with chronic daily headache is easier than with migraine. I have both but lately have focused on migraine in life and on this blog. Time to remedy that.

Predictability is in chronic daily headache’s favor. I wake up each morning with some degree of headache. Sometimes it will be a full-blown migraine, but often it is mild to moderate. Knowing what to expect somehow makes it easier to anticipate and enjoy the low-pain days.

The shadow of a potential strike is always with people with less frequent migraine episodes or other headache disorders. Hart, whose migraines visit an average of once a month, thinks five or six times each day that one is coming on.

I never know if my chronic daily headache is just getting a little worse or if the building pain is an imminent migraine. Not having visual auras and having hard-to-pin-down warning symptoms is part of the problem. Still, I don’t check for a migraine throughout the day. Or maybe I do and just don’t realize it.

Chronic daily headache is not as well-known as migraine and is often dismissed by doctors as attention-seeking or exaggerated claims. Friends and family can wonder the same thing. Patients themselves are perhaps the most concerned. Maybe they’ve done something wrong or haven’t been a good enough patient. The guilt and self-doubt can be overwhelming.

My original thesis for this post is that living with chronic daily headache is easier than with migraine. After letting my thoughts flow through my fingers, I’ve proven myself wrong. Rating them may be impossible. They are both life-altering and miserable. The Pollyanna in me says they both have positive aspects too. You know, all the cliches: I’m a better person for it, I live life more fully, I’m more in touch with my body.

I end this post thinking that chronic daily headache may be harder for me. Maybe I resent it more than I do migraine. Anyone with chronic daily headache and spikes of severe pain, migraine or not, do you have a “preference”?

Paula Kamen writes about chronic daily headache on the New York Times migraine blog. Leaving the Rabbit Hole, her latest post, is an eye-opener. Be sure to check out her radio interview too.

Community, Coping, Reader Stories

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

Kerrie Smyres

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.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.