By Kerrie Smyres | May 3, 2013
Do you ever feel like taking a triptan only delays the inevitable? After three days in a row in which I noticed major tooth sensitivity (my current reliable prodrome symptom) and taking naratriptan within 30 minutes of its onset, a migraine has walloped me upside the head (pun intended). The attack is as bad as they get these days (knock on wood) and I’m completely wiped out. While the pain is only a level 4, I feel like my bones are made of wet dishrags and my mind is as muddled as the mint in a masterful mojito.
As I understand the science, triptans do, in fact, abort migraine attacks and each subsequent attack is a separate entity. But as a chronic migraineur, it doesn’t seem like that’s happening. Instead, I wonder if I would have gotten this migraine attack out of the way if I’d not taken the naratriptan Tuesday (and Wednesday and Thursday). Forget the fact that the weather is changing today and that I haven’t slept well all week. And that The Doctors’ description of TheraSpecs was spot on and the TheraSpecs site had great traffic yesterday, thus relieving my anxiety and potentially triggering a “letdown migraine.” These don’t factor into my superstitions.
As I think myself in circles, I wonder how many headache specialists grasp the magnitude of the mental and emotional aspects of migraine. Even though they aren’t trained to help us deal with these components, they should be aware of how deeply migraine affects not only our physical state, but our mental and emotional well-being as well. If I ruled the world, every headache clinic would employ therapists who understand migraine’s reach and can equip migraineurs with a toolbox to manage the non-physical parts of migraine.
I write this from a mental fog, so please excuse me if this meandering post makes no sense. I think it contains at least one important nugget of information, but I won’t know for sure until I re-read it after this migraine passes.
By Kerrie Smyres | May 2, 2013
TheraSpecs are featured on today’s episode of the TV show The Doctors! We’re so pleased they highlighted what makes TheraSpecs unique and mentioned that wearing regular sunglasses can worsen light sensitivity. You can watch for yourself:
I’m also glad that the entire segment on migraine has pretty good information. My main quibble is with the statement, “There are always certain foods for some people that will bring on migraines.” Not everyone has food triggers and those who do don’t always get a migraine attack after eating their trigger foods. Also, I believe the audience member’s question is why preventives that once worked stop working, but the response addresses overuse of painkillers and abortives. These issues seem more like unclear communication than inaccurate information. Not bad for covering a huge topic in only three-minutes.
By Kerrie Smyres | May 1, 2013
The American Headache & Migraine Association (AHMA), a new patient-centered organization for people with headache disorders, is now accepting members! Although the organization is in the early stages, it is already providing great opportunities for patients, including a free, daylong patient-focused conference in this November. The conference will feature presentations by some of the top physicians in headache medicine.
Here’s an overview from AHMA (I’ve done a little rearranging and highlighting):
Our goal in establishing AHMA is to: EASE the burden of migraine and other headache disorders, such as cluster and tension type headache and trigeminal and occipital neuralgia, through Education, Awareness, Support and Engagement.
It’s important to everyone involved in AHMA leadership for our members to help direct the course of AHMA programming. By joining AHMA this early, you can have a strong influence on the direction of our efforts and ensure they help meet your needs and desires and those of the other members.
Right now the most significant programs/events we have in place are:
- A members-only support and information forum. It can only be accessed by joining AHMA. New members are sent the link and the password to access it upon joining.
- A free, members-only patient conference, which will be held on Sunday, November 24, 2013, in Scottsdale, Arizona (a suburb of Phoenix). We’re still hard at work planning the conference and finalizing details, but some of the most brilliant physician experts in the AHS have already volunteered to present on topics of special importance to Headache Disorders patients and their loved ones. We’re working hard to make the event as affordable as possible.
- AHMA has already started engaging in social media, so please like and follow us if you haven’t already:
Membership dues are reasonable. The membership types and respective dues are as follows. (Note: An effort to establish and set dues for a Lifetime Family Membership category is currently in the works.):
- $15 per year: Standard Membership
- $250: Lifetime Membership
- $0: Active Duty Military and Immediate Family; Disabled Veterans and Immediate Family
- $25: Family Membership for two or more members in the same family at the same address
Please visit EaseHeadacheMigraine.com to join AHMA.
BOARD OF DIRECTORS
- Chair: Teri Robert; Co-Chair: Dr. Paul Winner
- Chair Elect: Ellen Schnakenberg; Co-Chair Elect: Dr. Bert Vargas
- Vice Chair: Bob Wold; Co-Vice Chair: Dr. Rob Nicholson
- Treasurer: Julie Zellner McDonald; Co-Treasurer: Dr. Rebecca Wells
- Secretary: Diana Lee; Co-Secretary: Dr. Rob Cowan
For more information about AHMA and to join, please visit EaseHeadacheMigraine.com.
By Kerrie Smyres | April 30, 2013
Posts about sex-related headaches are among the most frequently read and commented upon on The Daily Headache. Want more information about these headaches? Here are two must-read articles:
Preorgasmic and Orgasmic Headaches Are Not Migraine explains primary sexual headache (PSH), which are headaches that accompany sex but are not related to a headache disorder like migraine or cluster headaches, and describes treatment.
Sex as a “Cure” for Migraine or Cluster Headache? What’s the Deal? shares the statistics on sex decreasing or increasing migraine or cluster headache pain.
Only your doctor can determine whether your sex- or orgasm-related headaches are a primary disorder or part of another headache disorder. Whether you have experienced headaches in the past or not, it is important to see a doctor to get the correct diagnosis and treatment.
By Kerrie Smyres | April 29, 2013
From people thinking they’re playing hooky or trying to get attention to being told to get over their “headaches,” every migraineur has stories of appalling comments or behavior from friends, family, teachers, bosses, coworkers, and even strangers. Here’s your chance to tell your story. Complete this short, anonymous survey to help researchers better understand perceptions of migraine. The data gathered will be used to benefit other migraineurs and the health care professionals who work with us, as well as to educate the public at large.
Learn more about the survey in this writeup by Dawn Marcus, MD, headache specialist and lead researcher for this study: Research Opportunity: What do others think about your migraine?
The survey’s open through the end of April (which is tomorrow!), so submit your response now.
By Kerrie Smyres | April 25, 2013
Like the idea of TheraSpecs to minimize migraine triggers, reduce photophobia, and relieve fluorescent light sensitivity, but want a different frame than our traditional wrap? Check out Stella from our fashion line, Over-Rx for prescription glasses-wearers, or get a custom pair made to your exact specifications.
TheraSpecs Stella‘s on-trend styling and dark tortoiseshell finish look great while providing maximum protection from light with TheraSpecs’ therapeutic tint. I’ve been wearing the prototype around for a couple months. Not only have I gotten tons of compliments on the prototype, my sensitive head loves how lightweight and flexible they are. Check out Stella Indoor, Stella Outdoor, or the discounted Stella Combo.
For people who wear prescription glasses and want maximum coverage at minimal cost, TheraSpecs Over-Rx frames are an excellent solution. We worked extra hard to find the perfect material so they’re comfortable and lightweight even when worn over glasses. I wear them daily whenever I’m wearing glasses instead of contacts. Available in Over-Rx Indoor, Over-Rx Outdoor, and a discounted Over-Rx Combo.
We also offer custom TheraSpecs to provide just about anything you are looking for, be it prescription lenses, readers added to any of our styles, or our lenses in your own frame.
By Kerrie Smyres | April 24, 2013
Looking back on a treatment I now know was entirely unsuccessful and seeing how hard I hoped it would work is always so strange. I just came across this, which I wrote the day after my first magnesium IV last March and never published:
I woke up this morning with my pain at a level 2, my tummy growling and my energy off the charts. “Ha!,” I thought, “maybe magnesium is the ticket.” I ate breakfast while cleaning the kitchen, then got ready to shower. Yeah, my nausea grew as I cleaned, but I told myself it was just the magnesium, not a migraine. I was about to climb into the shower and could no longer deny that my energy was gone and my head pain had increased. I pleaded (with whom? my head? the migraine gods?), “Please don’t do this, please don’t do this,” but I had to acknowledge that showering would knock me out completely.
So now, 30 minutes after getting out of bed, I’m sitting on the couch, waiting to see what’s going to happen and trying to decide if I should take a triptan.
That morning was nothing but a typical variation in a day in the life of a chronic migraineur, and another example of wishful thinking after trying a new treatment. This blog is filled with my treatment ups and downs — the anticipation and anxiety beforehand, the tentative belief it is working, the disappointment when it doesn’t. Reading old posts was heartrending before I found helpful preventive meds.
Now I can acknowledge what other people have said they see in me — tenacity, bravery, a positive attitude — but it is like I’m reading about someone else. These characteristics are precisely the reason I survived and yet I can’t fully grasp how I persevered. This excerpt from Anna Quindlen’s Lots of Candles, Plenty of Cakeis the best explanation I can come up with:
And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.
If you’re still in the daily slog, take heart. You will make it through and will one day be amazed by your own strength.
By Kerrie Smyres | April 23, 2013
The threat of weight gain as a side effect of migraine preventive is a major concern for many migraineurs. Though I’ve been sympathetic to their worries, I never really understood. If something reduces the migraine severity and/or frequency, I thought I’d be willing to gain even 70 pounds. Then I started gaining weight on cyproheptadine and was rewarded with a massive infusion of empathy. Read about it in The Emotional Turbulence of Gaining Weight on a Migraine Preventive on Migraine.com.
Upon finishing that post a few weeks ago, I wasn’t sure if the weight gain was worth the trade off. Then I asked this hypothetical question: Would I stop cyproheptadine tomorrow if it meant I’d lose the weight within a week and my daily pain would return to a level 7? No freaking way! Ten or 20 pounds is an absolutely fair price to pay for level 5 pain.
Avoiding and Coping With Migraine Medication-Related Weight Gain by Diana Lee has some excellent tips if you’re struggling with weight gain from a preventive or inactivity due to migraine.
By Kerrie Smyres | April 22, 2013
“It seems to me you have two equally important things going on: chronic migraine and grief about what chronic migraine has meant for your life.” With those words, the naturopath I saw Friday became my new therapist. Although I knew before the appointment that she practices as both a therapist and naturopath, counseling was not on my agenda. However, anyone who can see so readily that the emotional component of chronic migraine has affected me as deeply as the physical illness is someone I need to talk with.
Throughout the two-hour initial appointment, I kept mentioning things I wrote about last week. Like that the emotional toll of chronic migraine is enormous. That almost all my emotional and physical strength goes into taking care of myself, thus continuing my isolation from others. That I’m envious of successful women my age because I believe I, too, should be able to support myself and pursue my dreams. That for the first 10 years of chronic daily headache, no one believed I had a physical illness. Although I told the naturopath repeatedly that I’m so much better off emotionally now than I was a few years ago, the fact that everything I just mentioned was so fresh in my mind that I felt the need to write about it just last week indicates I’m not as “over it” as I thought I was.
I’ve been to therapists in the past, some of whom have been helpful with other issues, but no one seemed to really get what it means to for a young, intelligent, ambitious woman to be rendered housebound by a debilitating chronic illness. (The last one I saw thought I needed help setting goals and following through with tasks. If only it were that simple!) I’d thought this was a failing of the therapists, but now I wonder if the problem was in how the appointment was structured.
Every time I see a new therapist, I introduce the role of migraine in my life by describing all the ways I try to live a good life despite chronic illness. I always came out looking strong and motivated. I wasn’t misrepresenting myself, but was focusing on the positive — because who wants to meet anyone new and tell them all the bad stuff right off the bat? Besides, unless I’d just had an acute emotional crisis, the hard parts are rarely at the top of my mind. Usually such a crisis would spur me to make the appointment, but by the time I saw the therapist three or four weeks later, I’d moved on.
Meeting with the naturopath was more like a standard medical appointment. I started describing my symptoms and what my life looks like with migraine as such a large component of it. Because I wanted to convey the gravity of the physical experience (though I made sure to tell her that I’m so much better than I used to be), I was willing to address unpleasant aspects I’ve held back from therapists in the past.
I’ve long advocated for people with chronic illness to see a therapist, though I readily admit finding someone who understands the complexities of it is difficult. The best advice for finding a good therapist I’ve been able to give is to ask your doctors. But I’ve also always assumed the therapist sets the tone for the sessions. Maybe the person who is receiving counseling is responsible for determining the conversation’s course.
Based on my very recent experience, I’m going to change my recommendation. Yes, ask your doctor and check Psychology Today for therapists who specialize in chronic illness, but also keep a running list of issues that are bothering you. Perhaps write in a journal and see what comes up — I often don’t know what’s eating at me until I see the words written on the page. The most intuitive therapists may be able to figure out what you need to talk about all on their own, but you’re the only one who truly knows what’s bothering you.
I’m writing this advice as much for myself as for anyone seeking guidance on getting the most out of talking with a therapist about chronic illness. I’ll let you know how it works out after a few sessions.
By Kerrie Smyres | April 18, 2013
When the worst migraine I’ve had in months coincided with an overnight visit from a friend, I was overwhelmed by how incredibly alone I felt, even when surrounded by friends. In The Isolation of Chronic Migraine, a post I wrote about that night for Migraine.com, I said:
The isolation gave me a sense of physical emptiness. It was as if I wasn’t even there — like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally. (Read the whole post here.)
My friend visited last Thursday. Although I haven’t felt isolated like I did that night again since then, the memory of when my migraine attacks were at their worst has continued to haunt me. In those days, I felt disconnected all the time. Like the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me. No one, not my friends, family, or even my husband, could get through it.
Much of this time was when I lived in Seattle. In my bedroom there, the closet took up one long wall, but the doors were a regular closet door width. This left a nook that was difficult to access. I used to lie in bed and fantasize about curling up in that tight space, where I could be comforted by the darkness and the enclosure. I don’t think I ever did it — it seemed a desperate move, like doing so would mean I was millimeters away a psych ward — but I do remember sitting on the floor in the tiny spot between the bedside table and the wall. Even there, migraine wouldn’t leave me, and the sense that I was disappearing from the world was magnified by the knowledge that I took up so little physical space.
Thankfully, those days are behind me. I say this not only because I’m on some preventives that reduce the severity of the migraine attacks, but because I don’t think I will be able to disconnect like that again. Since those days, I’ve allowed my friends to be around me when I’m in a bad migraine attack. I’ve let other people see what it can be like and have spoken about it more openly. I used to close off as soon as someone asked me about migraine, as if acknowledging it would make it more real. Now I answer questions readily and have described the experience to non-migraineurs. I have written about those times and how close I was to suicide.
Then again, it is easy to say I won’t get to that point again on a day I’m feeling better. Last Thursday night was scary both for the emotions I felt and how reminiscent they were of worse days. I am far more connected than I was a few years ago, but, truthfully, I’m still detached. I haven’t returned to calling friends and family for no reason and am nowhere close to being as social as I once was. I’m not in massive pain all the time, but I still have a migraine nearly every day. I’m physically and mentally exhausted much of the time. My emotional and physical strength are stretched taut in support of myself; my ability to care for others comes in small, unpredictable bursts.
Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine. Despite all the explaining and writing I have done, I still cannot capture the bleakness and alienation I have felt. The physical sensations of chronic migraine are horrendous, but the emotional torment may be even worse.