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Giving Tuesday: Please Support the 36 Million Migraine Campaign

For Giving Tuesday, please consider donating to the 36 Million Migraine campaign — even $1 donations are extremely valuable. The campaign is to raise money for research, of course, but it’s also about showing lawmakers how many people are affected by migraine. The more people who donate, the more apparent it is that the allocation of research dollars impacts real people whose lives have been altered by migraine.

You can make your donation here. Donations can be designated in honor of a mentor or loved one. You can also donate using American Express reward points. And, if you work for a company that matches donations, you might be able to double your donation. All the details are available on the 36 Million Migraine donation page.

(By making a donation, you will be signed up for a weekly educational email from the American Headache Society. That was a bonus for me, but you can easily unsubscribe if you don’t want to receive it. They’ve never sent me requests for additional donations.)

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Your Stories: Teenager With New Daily Persistent Headache

Sharing readers’ stories is something I did in the early days of The Daily Headache, but it fell aside when I got to sick to cope. After emailing with the mother of a teenager with new daily persistent headache (NDPH), I decided to revive this feature. To share your story, send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Fifteen-year-old Francesca has had new daily persistent headache (NDPH) since she had Epstein-Barr mononucleosis in November 2012. She also has migraine. This is Francesca’s story. Soon, I’ll share what her mom, Kate, has to say about her daughter’s experience. [updated with link to Kate’s story]

What are your symptoms? How severe is the pain?

My headache pain can vary. For the last six months it has been a 6 out of 10 on the pain scale. Usually it’s on my temples and is more intense on my left side. Often it hurts in the back of my head near the base of my skull. I am sensitive to light, sound, and some sharp smells, they can increase the pain.

NDPH often comes on after an illness, accident or medical event. Did you have a precipitating event?

Before I had NDPH in my last year of junior high I got mono in the beginning of November. That lasted about two months or longer. After that I had multiple back-to-back sinus infections. I was still sick after that and I went to various doctors that kept giving the same answer that I was not sick. My mother then took me to a neurologist who diagnosed me with chronic daily headaches.

What is the hardest part about having NDPH?

The struggle doing daily activities that come natural to healthy people. Being sensitive to lights, sounds, and sometimes smells conflict with simple tasks. Sometimes when I stay at home with a migraine I can’t even leave the dark den because when I move in unfavorable ways the pain flares up. The days I do go to school it’s extremely hard to focus. During classes, I’ll try to listen but then zone out. When I snap back to reality I realize I missed some of the lecture and notes.

What do you wish everyone knew about NDPH?

Not everyone knows about it because informing lots people doesn’t really help anyone. Unless there is a person in their daily lives expressing the pain of NDPH, they cannot understand the struggles and stress that family members and the patient live with. Those who sympathize but do not witness the pain cannot truly comprehend.

What other advice would you give someone with NDPH?

The pain extremely sucks at the beginning and it will continue to suck for however long you will have it. You are probably confused or tired of the continuous pain and want it to go away fast. Gradually you’ll understand that getting healthy again is a slow process and you may suffer for a long time. Being a student who has NDPH it is quite hard because you have to go to school. Some teachers sympathize and give you the support and others can’t understand why you can’t just do the work because it is “only a headache.” They just don’t get it.

I’m not saying it’s not hard for an adult who has NDPH because they have to deal with the responsibilities of an adult and be functional and responsible.

But you can’t become a functional adult in society and be constantly tied down when you are still in your teens.

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More Migraine and Headache Hope: 2014 American Headache Society Symposium

Energizing and encouraging are the words I’d use to describe the American Headache Society’s symposium last week/weekend. The opening remarks on Thursday morning actually made me cry. After the AHS president, Dr. Lawrence Newman, shared his heartfelt frustrations with migraine treatment and gave an impassioned plea for the 36 Million Migraine campaign, the room went dark. Dr. Newman then asked everyone to stand up with their cell phones lit to “shine a light on migraine_and_headache_hopemigraine.” This picture from the AHS Twitter feed shows a small portion of the room in this powerful moment.

The strength of the moment was reinforced when the first presenter of the day, Dr. Dawn Buse, asked everyone in the audience with migraine to stand. Three-quarters of the room stood. She then asked everyone who had a loved one with migraine to stand. I don’t believe anyone in the room remained seated.

“These people care,” I thought so many times throughout the conference. I saw so many doctors, physician assistants, nurse practitioners, nurses and psychologists who are passionate and enthusiastic about headache medicine. They are frustrated about lack of funding and the stigma of headache and migraine, but they care deeply about and are dedicated to their patients. They are excited – ahem, cautiously optimistic – about the CGRP drugs that are in development for migraine as well as the neuromodulation treatments that are on the horizon (like transcranial magnetic stimulation and vagal nerve stimulation, both of which are noninvasive and should be available to patients soon).

This is the third year I’ve attended this particular conference and the fourth headache conference I’ve been to. The energy felt different. Maybe it was because I felt better and was able to engage more, but the enthusiasm and optimism seemed stronger than I’ve noticed before. Even more encouraging was the number of people new to headache medicine, mostly fellows in their early days of specialization, who attended the conference.

Yes, research for migraine and all headache disorders is underfunded. Yes, the arsenal of treatments is still nebulous and it’s hard to pin down what might help any individual patient. Yes, the stigma is still enormous. Yes, there is still a small portion of patients for whom it is difficult to find the right treatment. But the field is making progress and it’s being led by enthused and engaged providers who truly care for patients. The number of academic headache centers is on the rise, as is the number of fellows being trained in headache medicine each year.

I was already full of hope about the future of migraine treatment. This conference reinforced that my migraine and headache hope is well-placed. The tide is turning. It’s one of the many things I’m giving thanks for this week.

Want even more hope? Watch this interview with headache specialist and researcher Peter Goadsby. It’s well worth your eight minutes. (Many thanks to  Timothy for sending me this.)

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Redefinition is a Nightmare, Yet the Essence Remains

“This is not what they signed up for, not at all. . . . Redefinition is a nightmare — we think we’ve arrived, in our nice Pottery Barn boxes, and that this or that is true. Then something happens that totally sucks, and we are in a new box, and it is like changing into clothes that don’t fit, that we hate. Yet the essence remains. Essence is malleable, fluid.” Anne Lamott, A Slow Walk into the Amazing Now

Anne Lamott’s writing has hit me straight in the heart once again, this time in an essay about a friend who has ALS. Usually I’d add my reflections, but this doesn’t need much. Almost everyone reading these words knows that redefinition is a nightmare — a gut-wrenching, life-twisting, heartbreaking nightmare that feels like it will destroy the very essence we hold dear. Amidst that, it’s difficult to see that one’s essence not only remains, but is stretching toward the light and growing ever stronger.

I spent many years lost, not knowing who I was under the onslaught of chronic illness. I mourned for my lost self, sure I’d never see her again. Even though I couldn’t see it, my essence was still there. It was, in fact, what carried me through, changing in the ways necessary to keep me going. In this year that I’ve had remarkable physical improvement, I still haven’t seen the Kerrie I used to be. That’s OK. I like this redefined version so much more.

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Wellbutrin Side Effects

Dizziness is one of Wellbutrin’s most well-known side effects, one with which I’ve become intimately familiar. Since I know I need an antidepressant right now and refuse to take any with sexual side effects, I’ve become experienced in managing Wellbutrin side effects. In addition to dizziness, I’ve had some trouble with insomnia. This information stems from dealing with those problems, but it may be helpful for other side effects, as well.

The main points:

  • Try different release types
  • Take the meds with food
  • Try different ways of taking different dosages (example: for 300 mg, take 200 in the morning and 100 in the afternoon or vice versa)
  • Try generics from different manufacturers
  • Try the name brand drug, if possible

Wellbutrin (generic: bupropion) comes in regular release, sustained release (SR) and extended release (XL). I started on 200 mg of the generic sustained release. My diet is heavily restricted, so I don’t eat many calories at once and eat few carbohydrates, both of which seem to make me more susceptible to dizziness. I could manage as long as I consumed 800 calories before my first dose and took the second dose six hours later.

Then I increased my dose to 300 mg a day, which added insomnia to the dizziness. If I took 200 mg in the morning, I got dizzy and stayed that way all day. Taking 200 mg in the afternoon caused less dizziness, but made it difficult for me to fall asleep and stay asleep.

So I switched to 300 mg of the generic extended release, taken in two 150 mg tablets with breakfast. I still had a little bit of dizziness, but it was pretty mild, and no trouble with sleep. Then I started taking the 300 mg in a single tablet and wound up with intense dizziness that even kicked up when I rolled over in bed.

The question is whether I did better with two 150 mg tablets because there were two pills or because they are manufactured by a different company than the 300 mg tabs. I’m guessing the latter since generic drugs have the same active ingredient as name brand drugs, but the other ingredients may differ and, thus, may have different side effects.

Which leads to what will be my next experiment — taking two 150 mg tablets of Wellbutrin XL, the brand name extended release version. If my insurance company approves it, I’ll let you know how the experiment goes.

(And now you know why my posts have been sporadic and I’ve been slow to respond to email and comments the last few months. Computer time is the first thing to go when I’m dizzy. Today it feels manageable; we’ll see if that lasts.)