What’s With My Head: New Headache Specialist, Menstrual Migraine, Allergies & Reading

New Headache Specialist
I saw the headache specialist several readers have recommended and really liked him. After more than two hours with me (we had to schedule a second appointment to fit it all in!) he speculated that some of my headaches are actually caused by new daily persistent headache. In the past, my chronic daily headache was always attributed to migraine transforming to everyday.

Although the doctor wants to see me monthly, the next available appointment is in March. Before then I’m supposed to get a lumbar puncture (spinal tap) and more blood work. My last lumbar puncture resulted in a three-week headache and wasn’t responsive to a blood patch. I’m not looking forward to it.

Menstrual Migraine
I got a birth control pill prescription to see if it will manage the two-day migraines I get when my period starts. In typical fashion, I haven’t filled the prescription. The migraine that kept me in bed my first two days of vacation in Mexico should motivate me to to take it to the pharmacy.

Allergies
After always feeling worse after vacation, I finally admitted my headaches and migraines are worse in Seattle than elsewhere. I was in Kansas for a funeral the last weekend of October. I was shocked to wake up two mornings in a row with a barely perceptible headache. Nor was I as congested as I always am at home. I took Zyrtec for a few days and both my congestion and migraines were less. Not a reliable experiment. It unfortunately made me nauseated, so I couldn’t keep taking it. I’m trying Claritin now.

When I was tested for allergies when I was 14, I responded most strongly to mold. That wasn’t an issue in Phoenix — quite the opposite in Seattle. Studies indicate than while allergies don’t cause headache, they can trigger migraines. Thursday I’m seeing an allergist and will probably get tested for allergies. Maybe she can sort something out.

Migraines Triggered By Reading & Working on the Computer
These are still in full-force, hence my infrequent posts. A loved one who is an ophthalmologist gave me a thorough vision and eyestrain exam when I was in Phoenix for Thanksgiving. The diagnosis was convergence insufficiency. That means:

Convergence insufficiency occurs when your eyes don’t turn inward properly when you focus on a nearby object. When you read or look at a nearby object, your eyes should turn inward while you focus, so you can see a single image. But if you have convergence insufficiency, you need to use extra effort to move your eyes inward for focusing. This extra effort results in various symptoms, including eyestrain.

I’m now using an eye patch when I read or am on the computer. So far, I’ve been able to squeak out about an hour on computer with it. I still get a headache if I push it, but it is mild and doesn’t explode into a migraine. If the eye patch continues to be OK, I’ll get prescription reading glasses with a prism, which I can wear over my contacts.

Seattle Doctors, Neurologists & Headache Specialists

I’ve been asked about Seattle headache specialists and neurologists more times than I can count in the last month. My experience is quite limited, but the online support group and forum has a thread with recommendations for Seattle headache doctors. If you have any to add, please do! You can also check What Do You Think of Your Doctor, an earlier post with lots of good suggestions, some in Seattle, some elsewhere.

Here’s what I know:

I’ve seen Sylvia Lucas at UW and Sheena Aurora at Swedish. They are both kind and caring. We all click with different people, of course, but I found Dr. Lucas to be more patient-oriented and Dr. Aurora to be more research-oriented. Both have at least three-month long waiting lists. It took six months to get into my first appointment with Dr. Lucas and follow-ups are usually scheduled two months out. Dr. Aurora is more like three months for an initial appointment.

A friend sees Patrick Hogan, an osteopathic neurologist, in Tacoma. His number is (253) 284-4488. He requires a doctor’s referral regardless of your insurance and your family/general physician will have to contact his office to get you in.

For other doctors in the Seattle area — or anywhere else in the US, check the National Headache Foundation’s physician finder or the American Headache Society’s health care provider search.

Is Seeing a Specialist Always Best?

When people ask me about finding a doctor, I almost invariably tell them to see a headache specialist. Seeing someone with headache-specific knowledge is important because headache disorder education isn’t widespread. But is seeing a specialist always the best idea?

Dr. Aniruddha Malpani of The Patient’s Doctor writes:

Most patients want to go to the doctor who has special expertise in handling their particular problem. They will spend a lot of time and energy tracking down the “biggest name in the field” – and then leave everything up to the doctor. This can often be a short-sighted approach, because specialists are biased, and it’s important to be aware of this bias.

While it’s true that an expert has a lot of experience in dealing with a particular problem, this extensive experience also introduces all sorts of bias in the way he handles this particular problem. There are many reasons for this.

Because he is used to seeing complex cases which have been referred to him, he often cannot deal with simple bread and butter problems ! He also sees life through a distorted lens, and may not be able to see the big picture. Because he cannot afford to make mistakes, he often overtests and overtreats. He often asks for esoteric and expensive (and painful) tests, to differentiate himself from the other ordinary doctors. He also usually bad-mouths alternative options of dealing with the problem – after all, this is his competition! He is reluctant to refer cases which he cannot handle, because this would damage his aura of omnipotence and omniscience.

Often, in the pursuit of narrow goals, he loses objectivity; and is more interested in doing research rather than treating patients. Many experts are so used to seeing only sick patients, that they often cannot recognize a normal variant!

What do you think? Let us know in the comments below or on the online support group and forum.

Update on the Migraine & Chronic Daily Headache Treatments I’ve Tried Since February

I’ve tried a variety of treatments since February, but haven’t kept you updated. It’s like I don’t want to talk about them at the outset because I might jinx it. After a treatment has failed, I push it aside so I don’t have to think about it. Here’s the surprisingly long update.

Naturopath
Shedding tears in the naturopath’s office the first time was enough to keep me from seeing her again.
Against my hard fast rule that I not take anything I can’t identify (which I also broke with the acupuncturist), I took the homeopathic remedy, vitamin D and magnesium supplements she suggested. They did nothing.

Chiropractor
I gave the chiropractor two months, which is the maximum time she told me it would take to see results. I went five times one week, four the next, three for a couple weeks and so on. Turns out I hold my adjustments very well. Unfortunately my migraines didn’t changed and having my neck adjusted freaked me out. Once she stopped asking about my headaches and focused on pain in my lower back, I knew she had given up.

By treating me as a challenge for which she was sure she had the solution, the chiropractor made the classic mistake of nearly every “alternative” care provider and many physicians I have seen. That always makes me laugh, but leaves me wary that the overconfident provider is setting him or herself up for a fall. Which is what always happens.

Sleep Specialist
Many people with treatment-resistant headache disorders become much more treatable once they have sleep problems resolved. Although my sleep seemed fine, I saw a sleep specialist with a background in neurology. Sadly, my sleep is practically perfect. I sleep eight hours, wake up rested, nap when I need to without having it interfere with that night’s sleep.

New Headache Specialist
A Seattle-based headache specialist that I’d never seen before was recommended highly, so I saw her in May. We hit it off immediately. Too bad we focused on my blog, headache patients in general and clinical trials. I left enrolled in a clinical trial for Lyrica and with a potential advertiser for The Daily Headache, but without having discussed any of my questions or other treatment options.

I already had Monday’s appointment with my first Seattle headache specialist, so I didn’t make another appointment with specialist #2. Seeing specialist #1 again reminded me that she’s the right doctor for me.

Lyrica Trial
In the spirit of giving back — and possibly finding an effective drug — I enrolled in a clinical trial of Lyrica. Currently I’m keeping a headache diary and am to start the meds (Lyrica or a placebo) at the end of the month. I’m pretty sure I’ll drop out before then.

Six months, the length of the study, is a long time to wait before I can get a prescription and test Lyrica out on my own. I have other treatments in the works and don’t want to confound the equation. Besides my impatience makes waiting more than a year to find out if I took Lyrica or the placebo agonizing. I can’t decide.

Wheat-Free, Dairy-Free Diet
This one needs it’s own post, which I’m working on. In sum, it looked like there could be a connection, then it looked clear there wasn’t. Now I have no clue.

That’s the update. Disappointing, huh? I have another round of ideas percolating. They seem like good ones this time, not acts of desperation. We’ll see.

A Visit to My Headache Specialist: Migranal, Seroquel, Biofeedback & Headache Management

Headache_specialistAnother visit to my headache specialist, another round of medications and therapies. This is the first time I don’t have any anticipatory excitement that one (or some) will help. It’s not that I don’t think there’s a chance, I’m just too tired to get caught up in what ifs.

The prescriptions I left with are for Migranal, an abortive, and Seroquel, a preventive. I’ve never tried Migranal as on-the-spot abortive. I did use it when a three-week intensive treatment of injectable DHE caused muscle pain. (DHE and Migranal are essentially the same drug, just in different delivery forms.) That three-week treatment was cut short after I failed to respond even the tiniest bit.

Seroquel has been on my mind since reading this success story. I know what works for one person doesn’t always work for another, but I needed to ask. Since I’ve tried multiple meds in all the classes of drugs used for headache with no success, my doctor and I decided it was worth a shot. It can be sedating, but I have to wonder if being sedated with less headache would be better than the exhaustion that accompanies a migraine. (I need to read the full side effect profile before I fill the prescription.)

Biofeedback and headache management therapy are the other two treatments I’m going to try. That’s right, I have never tried biofeedback. I feel like an impostor writing a headache blog without trying it. I’ll be able to shed my shame soon.

Even though I don’t really know what it is, headache management is what I’m most excited about. Apparently I will learn tricks to help when I have a bad headache, like massage and neck exercises.

As I write this, my head is bad so my outlook is bleak. Whenever I have a low migraine, low pain, high energy stretch, like I did last week, I return to “normal” with a thud. Having had a total of three good weeks in the last two months, I now believe I’ll have more migraine-light days in the future. But I quickly grow impatient for the next time to arrive.

Ask the Expert About Headaches & Migraines: National Headache Awareness Week

Headache_expert_question_2
A daily Q&A with headache experts is being posted each day of National Headache Awareness Week. Submitted by patients, questions cover the gamut of headache topics. Some so far: sinus headaches, sudden onset headaches, new daily persistent headache, headaches triggered by sun or sex, and burning and tingling in the back of the head.

Q&As from Monday, Tuesday and Wednesday are available as Word (doc) files. Many more questions are covered in past issues of NHF Head Lines, the organization’s newsletter. Read archives of readers’ mail and Ask the Pharmacist.

I’m often asked for recommendations of headache clinics or specialists, but only have experience with a few. The experts participating in this week’s Q&A are listed below with links to their clinics.