What is Headache on the Hill?

Headache on the Hill is an annual event where people who are affected by headache disorders visit the offices of their state senators and representatives with a specific “ask” to improve the lives of people with headache disorders. The ask is different each year and it’s tailored to specific activities in Congress or needs in the headache community.

The first Headache on the Hill, in 2007, was entirely healthcare providers. This year, about 70% of the participants were people who live with headache disorders or our loved ones who wanted to advocate for us. All six of us on TeamArizona have migraine and two are also healthcare providers, which was a great mix.

What We Asked For

The Opioid Workforce Act is a bill currently in both the House in the Senate that seeks to increase funding for more training programs in addiction medicine, addiction psychiatry, and pain medicine. We asked for co-sponsors for the bill and also asked for an amendment to the bill to include fellowships. The bill is currently written only for residencies, but pain medicine (and headache medicine) are fellowships, not residencies. We also asked that they specifically include headache medicine residencies in the bill, since they have different training programs than pain specialists do.

How You Can Help

Even if you didn’t attend Headache on the Hill, you can help by reaching out to your senators and representatives about the Opioid Workforce Act (which is H.R.3414 in the House and S.2892 in the Senate). First, check to see if they have already co-sponsored the bill (check here for representatives co-sponsoring H.R.3414 and here for senators co-sponsoring S.2892). If they have co-sponsored, please thank them for doing so and tell them how important it is to you. If not, please ask them to co-sponsor the bill. You can also ask them to amend the error in the language to include pain medicine and headache medicine fellowships (rather than residencies), but you can skip that part if it feels too hard to explain (I got training on it and it was still hard to explain!).

You can find your representatives and senators here. Calling is probably the easiest approach, but research shows that a personalized postal letter or personalized email are more effective than a phone call. Given that “personalized” is a key component of the effectiveness of the letter or email, I don’t have prewritten wording for you. My recommendation is to start with the “ask” and then tell them why it’s important to you. Be sure to include your address in the letter so they know you’re a constituent.

If you call, know that you’ll likely reach voicemail, so if you have anxiety about talking to a stranger on the phone, know that you probably won’t! Be sure to leave your zip code so they know you’re a constituent. I always add my full address at the very end of the voicemail, just in case.

Join Me Next Year!

Join me in 2021 to advocate for headache disorders in your state! Follow the Alliance for Headache Disorders advocacy on Facebook or Twitter to learn when the applications for next year open, which is usually in November. There is an application form to fill out and not everyone is accepted—it’s based on which states and areas within each state need representation—but please don’t be intimidated by the application form. You don’t need to have a social media presence or a history of advocacy to be able to participate, but it’s good information for them to have, so they ask for it.

A caveat: Headache on the Hill is the largest patient advocacy group without a corporate sponsor that does lobbying events like this. That means both that there’s no corporate intervention in the message (which is great!) and that it’s done on a shoestring (which can be a challenge for some patients who want to participate). Participants’ hotel rooms are covered for at least one night and usually a couple meals are covered, too. You’ll need to cover transportation to and from Washington, D.C., some of your meals (I brought a lot of nonperishable food and found a grocery store nearby), and for extra nights at the hotel. It’s a commitment, but it’s an incredible experience if you can do it. I honestly can’t count how many people have told me that attend Headache on the Hill was life-changing for them.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Painful emotions = bad

These two equations summarize American society’s approach to emotions. We’re taught to strive for emotions that feel good as if seeking higher ground in a tsunami and to run like hell from ones that hurt.

I wrote two weeks ago about slamming the door on my unwelcome houseguest named Grief, trying with all my might to keep it locked away. Grief did not comply with my wishes, not until it ripped the door of its hinges and I gave it the attention it demanded. This behavior is not unique to grief, nor is it a noteworthy show of strength. It’s what all emotions do if you try to ignore them for very long.

The most remarkable lesson I’ve learned about emotions is this: it is (almost always) easier to let myself feel an emotion than it is to try to run away every time one I’m afraid of pops up. Even more remarkable? Unless you feed the fire, stoking the flame with your thoughts, an emotion only lasts 90 seconds. Seriously. A minute-and-a-half.

If this is true, why did I tell you I spent a week avoiding my grief? Why did my therapist (of all people!) say that I was being skillful when I blocked myself from feeling grief? It’s because I was making a deliberate choice. As I said, it’s *almost* always easier to experience an emotion than it is to have it haunt me when I’ve tried to run away. Almost, but not always.

It has been a difficult year. I swear that phrase has been in 95% of the drafts I’ve written since January. It’s actually been a difficult 18 months. When the DAO stopped being sufficient for staving off my eating-triggered migraine attacks, I learned that I no longer only had to grieve for everything I had lost. I also had to grieve for the future I’d finally begun to trust was mine. The ketogenic diet is the last diet-based intervention available to me. When it wasn’t a slam dunk, my grief began to grow. May and June were particularly difficult emotionally.

I’ve been working with my therapist on this grief as it has come up. At the end of June, we decided to dive deep to see if I could face the grief and move on unencumbered (or at least less encumbered). That day was the most horrible, gut-wrenching experience I’ve ever had in therapy.

I used to run from my emotions because I was afraid if I felt them, they would devour me whole. That therapy session felt like I was being eaten from the inside. My stomach churned. My leg muscles seized up. Each time I tried to relax them, they would clench even more. My chest kept tightening and my breath became hard to catch. Although she usually lets me lead the work, my therapist told me it was time to stop. She said I was locked into an extreme flight response. Fortunately, she had a free hour to spend calming me down. I had a grief hangover for a couple days, but that was the only lasting repercussion from the session. Well, that and a fear of what would happen the next time I let grief in.

My therapist and I decided to put the grief work on hold for a while. We check in every week to assess my grief level and how I was dealing with it. I explained how I let myself feel it when it comes up, but only for a short while, then distract myself and move on. This is the behavior she said was skillful. The skill was in recognizing the emotion and choosing to move toward or away from it. I haven’t run from grief reflexively, I have chosen to keep it out of my house. Until it beat the door down.

Writing that post actually kept grief from taking me down. Acknowledging the strength of my grief was enough of a catharsis to last nearly a week. But I knew it wouldn’t hold much longer. Last Tuesday, I told my therapist I was finished running. We revisited the grief work, this time with a gentler approach we tried last month.

I talked about how small my world feels and how migraine prevents me from traveling, working as much as I’d like, seeing my friends, and making new friends. I spend so much time policing my diet in an effort to stay semi-functional, but I’m not really gaining ground. It’s more like I’m standing still and trying desperately to keep the dirt from crumbling away from beneath my feet. I still don’t feel as good as I did in 2014 and I feel like I’m constantly one step away from falling off a cliff.

For me, successful migraine treatment means I can do the things I most enjoy in life. I don’t have to be migraine-free, pain-free, or symptom-free to do this. I spend most of my energy on migraine management, yet it’s still not enough to let me work and play and travel and spend time with loved ones. Migraine continues to dominate every single day. Food, one of my life’s great pleasures, is a chore and a source of pain.

I work so, so hard for so little reward. I am so, so worn down by chronic migraine.

My therapist listened to me and validated me. When the session was almost over, she asked how I was doing. I said that I felt like I needed to curl up and cry for a while. After we said goodbye, I sobbed for an hour. It was an ugly, painful cry that sapped the small amount of remaining strength that I had. I napped and read and took it easy for the rest of the day. I was better the next day, but still tired, sad, and a little lonely.

I know the popular American emotional equations don’t add up. I sometimes wish they did. Running seems so much easier than feeling this pain. I know it is not. I know I can’t outrun it forever. But in times this heavy, I wish I still believed grasping for pleasant emotions would render painful ones obsolete. I wish I still believed in the American way.

I wrote this last Wednesday, but it didn’t post because of a technical problem. As often happens, I felt much better after writing it. I chose to post it today as I wrote it originally because it’s an honest reflection on how wrenching working through deep grief can be. But now you need to read the alternate ending:

I ran from grief because it seemed like the only way I could survive the pain. Even in the immediate aftermath of doing the grief work, I wished I’d kept running. But after a short recovery time, I felt lighter than I had in months. Grief is no longer waiting to ambush me from inside books or thoughts or scenic vistas. I neutralized its power when I stopped running. I don’t believe in the American way of dealing with emotions because my life has shown me time and again that the equations just don’t add up.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Week 1

I still had constant head pain, but little fatigue and not much cognitive dysfunction. The reduction in fatigue and cognitive dysfunction brought enormous improvement to my quality of life. The pain was a 5 or 6, which is worse than my baseline pain level. It felt more like a headache than a migraine attack, though the pain was far more migraine-like than usual. It was centered around my left eye and temple (instead of an all-over throbbing pain). A couple ibuprofen took the edge off when the pain began to interfere with my ability to function.

Week 2

The migraine pain from the previous week was lower, but still present. I was fully functional with little fatigue or cognitive dysfunction, so I had no complaints. I celebrated by emptying the shed and reorganizing the entire house.

Week 3

I was still doing better than before I started using the Spring TMS, but my fatigue increased as the week wore on. Then I started getting slow-build migraine attacks (that’s my term, nothing technical, but I’m pretty sure the meaning is obvious). They seemed totally random, with no identifiable triggers. Then food that’s normally OK started being a trigger. Then the act of eating itself became a trigger (even with DAO). All the while, the fatigue kept increasing.

In this week, I noticed that I’d use the device and the migraine attack would let up, but return a few hours later. The length of this reprieve reduced steadily until I’d feel worse immediately upon using the Spring TMS. It’s like the device caused an instant rebound headache.

After spending two days laid up with moderate pain and major fatigue and cognitive dysfunction, I decided to stop the treatment.

Week 4

After I stopped using the Spring TMS, the fatigue slowly decreased as the week progressed, though some cognitive dysfunction remained. I wasn’t worried. It took a week to get over the initial side effects, so I figured it would take a week to return to baseline. I still thought I’d be able to use the device again when things settled down.

When a migraine attack struck an hour before an appointment and wasn’t responding to triptans. I gave the Spring TMS a try. I felt worse instantly and spend the rest of the day in bed.

Week 5

I was still spending more time laid up than before I started using the Spring TMS. I tried to keep the worry at bay, but the thoughts keep creeping up: “What if this is my new normal? What if I never go back to how well I was doing before I started the treatment?”

I kept reminding myself of an escapade with dizziness last February. My doctor said that a four-day migraine attack temporarily changed my brain, which made me more sensitive to the side effects of bupropion (Wellbutrin, a drug that has always made me dizzy unless I’m very careful with it). My brain didn’t normalize after that for two weeks. I used the Spring TMS for three weeks and my brain clearly reacted to it. I told myself that maybe it would take three weeks for my brain to settle down. Or three months. Either way, I told myself that there was no reason to think I’d feel this way forever.

Beyond

It has been many months since I stopped using the Spring TMS. Eating and drinking anything but water continues to be a migraine trigger. My overall pain levels returned to baseline, but I spend more time at higher levels of pain than before I tried the device. My fatigue and cognitive dysfunction did not improve beyond the fifth week (though the ketogenic diet has improved my cognitive dysfunction.)

I suspect it’s a coincidence that I became more reactive to food (and eating) while using the device, though determining cause and effect is impossible. My doctor said he’s had patients become worse while using the device, but I’m the only one who has had a permanent change. A friend also tried it and got worse, but she returned to baseline within a week of stopping it.

Parting Wisdom

Perhaps surprisingly, I would still encourage people to try the Spring TMS. Just be aware that your migraine attacks could worsen. Before you try it, talk with your doctor about that possibility and find out what they recommend—tough it out and hope the attacks will improve or stop altogether? Based on my discussion with my doctor, I would do the latter, but only you and your doctor can determine the right approach for you.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Keeping up with the ketogenic diet and coordinating a new treatment (more on that soon) are taking all my energy right now. But I wanted to share my response to an email from someone who asked what my migraine attacks were like before I started DAO and what other migraine treatments I have tried. The list is too long to compile; instead, I summarized the migraine treatments that have helped me since finding the first somewhat effective one in January 2010. It’s an interesting snapshot.

I’ve had a gradual lessening of the pain since adding various treatments over the last six years. Before that, the pain rarely dropped below a 7 and regularly reached an 8-9. I also had a handful of attacks with level 10 pain, though I am very reluctant to rate my pain as a 10.

January 2010: Began using the NuvaRing continuously. Didn’t affect my baseline pain levels, but stopped the level 10 pain that came with menstrually associated migraine attacks.

November 2010: Moved to Arizona from Boston (weather was a major trigger for me). Made the migraine attacks a little more manageable, but I can’t quantify the improvement. The biggest part is that it freed up some of my energy to began researching and trying different treatments.

January 2012: Began taking about 700 mg of magnesium a day. After that, the pain ranged from 4-7 and occasionally got higher than 7 (maybe several times a month). I ultimately pushed the dose to about 1,000 mg a day.

August 2012: Began taking 12 mg of cyproheptadine. Pain ranged from 4-6 and hit a 7 an average of three times a month.

January 2014: Began DAO (diamine oxidase) in conjunction with a heavily restricted diet. My pain typically ranged from 2-4, but hit a 5 at times. This is when triptans (Amerge) were first effective for me, so I was finally able to abort migraine attacks before they got bad.

March 2015: I once again began getting migraine attacks every time I ate. The pain is usually 2-4. It sometimes hits a 5, but doesn’t get above that. Amerge is not longer a reliable acute medication. Fatigue and cognitive dysfunction are now far more disabling for me than the pain.

January 2016: Began a ketogenic diet. In the last month, I’ve been able to eat 250 calories without always triggering an attack. I typically still have at least one attack a day. (In addition to eating still triggering some attacks, I am much more sensitive to other environmental triggers and can’t go out in public without having an attack.) Amerge helps inconsistently. My pain ranges from 2-4. I can’t remember the last time it was a 5. The cognitive dysfunction is a lot better, but the fatigue is still disabling.

(I followed up with another email clarifying that I have particularly intractable chronic migraine and that this man’s wife will likely find an effective migraine treatment far more quickly than I did.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.

Adderall

What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Since the max dose of naratriptan (Amerge) is two tablets a day, for the last week, I’ve been eating two meals each day and take a naratriptan and two Midrin after each one. (Please don’t double up on a triptan and Midrin without talking to your doctor first—it could increase stroke risk. My doctor said it was OK for me, but his nurse freaked out when I told her about it on the phone.) This is not a solution, it’s only a bandaid. One I’m grateful to have, but a temporary fix nonetheless. My doctor and I have determined that I am not prone to medication overuse headache, so that’s not a concern, but these drugs are too harsh to take twice a day indefinitely. More significantly, it helps with the eating-triggered attacks, but leaves me without effective treatment if any other triggers come along.

The other problem with the current regimen is that it doesn’t help like it used to. Three months ago, a naratriptan and two Midrin would stop migraines within a couple hours even when I’d eaten way off the diet. Now, the drugs leave me in a low-level migraine almost all the time even when I eat foods that were once fine. The pain is a little worse than typical, the brain fog is little bit less, and the fatigue is considerably less. It’s like it has averaged the highs and lows that have been typical for me in the last year, so that now I’m in a constant state of mild-ish migraine. Turns out I prefer the highs and lows.

Today I am hopeful that I’ve found something else that will help. I’ve been taking probiotics since August. When I stopped them for a week in Septemeber, foods that had been OK became triggers. Going back on them let me eat those foods again, but hasn’t allowed me to reintroduce any more foods, even at higher doses. The probiotic I’m taking now, VSL #3, has one less strain than the one I originally took. I tried adding that strain individually a while ago, but it triggered migraine attacks. Four days ago, I opened up the capsule and only took a sixth of it. No migraine ensued and I’m now up to taking a third of the capsule each day. My reactivity to foods seems to be lessening. Maybe this is the probiotic, maybe it’s just time. The improvement could be a fluke or short-term, but it feels like more progress than I’ve had in the last few months.

This has been frustrating and scary. And I don’t even get to eat whatever I want—foods that were moderate triggers before are now major triggers that require more triptans and Midrin than I can take in a day. I’ve been catastrophizing some, but can mostly keep it at bay by reminding myself that I have no idea what the future will bring and that the past cannot predict it. Still, thoughts that I might never feel as good as I did six months ago aren’t far from the surface.

Thank you for your kind comments and emails. It helps a lot to know I’m in your thoughts. I’m thinking of you, too, and am sorry I’m unable to respond to comments right now. You’ll hear from me as soon as I’m able. Today I’m cautiously optimistic that it won’t be another month between posts.

(For an unrelated feel-good moment, take a look at these beautiful illustrations of love. They’re not flashy, romance novel-worthy moments, but the quiet, consistent moments of love. They brought me to (happy) tears.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

I’m frustrated with the constantly moving target that is my health, but I’m also fascinated by it. The migraine attack changed my brain and, through my reaction to an unrelated medication, I was able to see my brain change back to it’s pre-migraine state. I knew that would happen, but being able to observe it was unusual.

It’s just one of the many changes I’ve been able to observe in my body now that I don’t have a migraine all the time. I can feel fine, but if my feet are freezing, I know I’m in the early stages of an attack. I can be writing for hours and thinking at full capacity, then notice that constructing sentences has suddenly become difficult. Even when eating doesn’t trigger a migraine attack, it can hint at one for a while and I’ll have to stop working until it resolves, which is usually does within an hour without medication. These are just a few examples of the many new reactions I can see in my body.

It would seem like someone who has had chronic migraine for as long as I have would have figured these things out by now. That was impossible, though, because the migraine attacks never stopped. I didn’t have a clear idea of my prodrome symptoms because I never knew when a migraine was ramping up again. I had experienced the metal fading before, but only recognized it when I was already deep into the attack. Now I notice within a few minutes after the cognitive dysfunction begins.

Despite knowing that identifying triggers and prodrome symptoms would be crucial to managing attacks, it seemed like an elusive, if not impossible, goal for most of my time with chronic migraine. I kept trying, even though it was terribly frustrating and I had a lot of misattributions along the way. I’m glad I did. It’s even more valuable that I imagined it would be. I’m more able to avoid migraine attacks now that I was even a year ago and I can take triptans at the earliest possible moment, which reduces the total time I spend in a migraine attack. At least once a week, I take a triptan and only slow down for 30 minutes before I’m fully functional again. I had a “bad” one yesterday—at least really bad for how they get these days—the pain hit a 6 and I was down for six hours. That’s a Sunday drive compared to how they used to be.

I still credit DAO with most of my improvement and my diet is second, but the benefits of knowing triggers and prodrome symptoms continue to increase. With 40 foods in my diet still and only adding two new foods in the last seven months, I often feel like I’m stuck. Then I remember how much shorter my attacks have become and that my cognitive impairment has decreased so much that I’m able to write through more migraine attacks than I’ve been able to in at least eight years. I’ve changed nothing treatment-wise since September, yet, on average, each month is a little better than the last. It’s a slow, slow climb, but I’m still climbing.

I always worry that I sound like I’m bragging or showing people up when I write about my improvement. I share it so you can know that improvement is possible and that even when if feels like you’re totally stuck, you could be making progress that you can’t yet see. When you feel terrible physically, it can seem like you’re failing yourself by not actively searching for and trying new treatments. Sometimes holding on is the best you can do for a while. I know that’s terribly clichéd, but it’s meaning is exactly what I wish to convey. Know that it won’t always be this bad. Instead of criticizing yourself, try to give yourself some love. You need it and deserve it.

That turned more “rah-rah” than I expected. I won’t delete it because it’s something I wish I’d come across five years ago. Since I’m a cheerleader baring my heart, I want to add this: I may not know you by name, but I do think of you all and wish the best for every one of you. I haven’t been in the exact place that you’ve been in, but I’ve lived through years that I have no idea how I survived. I believe you can do it, too. It may not feel like it, but you can.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

For me, diamine oxidase (DAO) has been very helpful only in conjunction with a low-histamine diet. From my experience trying to reintroduce foods, I am now positive that DAO alone would have done nothing for me. My dietician confirmed that. On our last call, she said “Even with DAO, you just can’t eat foods that are high in histamine. You just can’t.” Don’t panic, she was talking about me specifically, not everyone, and I’m an extreme case. (The link above will take you to a comprehensive Q & A on histamine intolerance and DAO. This one takes you to everything I’ve written about DAO.)

I’ve heard of a few people benefiting from DAO alone, but almost everyone who finds relief is also on a low-histamine diet. I know it’s a downer. Restricted diets can be a burden, especially at the beginning. It should tell you something that despite being frustrated and annoyed with my diet, I’m still sticking to it. Having times without migraine is just too precious and that only happens for me on the diet and taking DAO.

A few readers have told me DAO has been a magic bullet for them, but most who try it without diet modifications have no success or inconsistent results. Even with the diet and DAO, you may not get relief. If histamine isn’t a major trigger that sets migraine off in your body or gives you headaches, avoiding histamine or taking an enzyme that processes it won’t be of any use. Unfortunately, there’s no blood test or other quick, definitive way to figure out if this is the case for you.

I wish DAO were an easy answer and that the supplement could take the place of a restricted diet. Unfortunately, that’s just not the case for most people. And, unfortunately, it may not work at all for you — that’s just the nature of headache and migraine treatments.

Looking to buy DAO? You can get Histamine Block and Histame from Amazon. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

No words suffice as I try to describe that moment. I keep typing and deleting, typing and deleting. My thinking is huge, philosophical, emotional.

“When you’re going through hell, keep going.” That Winston Churchill quotation has gotten me through many years and countless migraine attacks. I haven’t had to apply it to my life in a year. I call that remission from hell and officially declare that I am no longer engulfed in flames.

I still have constant head pain and migraine attacks more days than not. Fatigue, brain fog and depression still nag at me. I may one day return to symptoms as severe as during The Worst Year of My Life. I may, in fact, return to hell. But I’m not there right now.

Acute medications are working. The diet is irritatingly restrictive, but combined with DAO, it means I no longer get a migraine every time I eat. I can even occasionally choose to eat foods that will trigger a migraine, then stop it with a triptan and naproxen.

It’s not perfect. I’m not cured. But I can breathe.

My life feels wide open.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

There’s the doctor who held my hand, looked me in the eye and told me she’d never give up on me. That was nearly five years ago and I still tear up when I think of it. Her kindness and sincere desire to help were a beacon of hope when I was at rock bottom.

When I moved back to Phoenix, I saw a new headache specialist who spent two hours listening to my migraine history. Two. Hours. He seemed genuinely interested and didn’t talk about a treatment plan until he knew my entire story. He helped me piece together my history and see that my childhood illnesses were very likely migraine attacks with little or no head pain. The treatment plan he came up with was comprehensive and addressed all of my needs.

For a while I was seeing my current headache specialist and another concurrently. The secondary specialist started me on Lyrica and it caused me to have suicidal thoughts. That was the last straw for anticonvulsants for me, but that doctor still pushed me to try Topamax. My current specialist understood my reluctance and has never again suggested I try an anticonvulsant.

When I told my headache specialist how helpful DAO has been for me, he was thrilled for me. He didn’t care that it’s not a scientifically proven treatment, nor did he care that he wasn’t the one to tell me about the treatment, he was just happy that I’ve finally found some relief.

Those are the some of the biggest moments, but there are so many little things that add up to feeling like I’m well cared for:

• Being listened to
• Acknowledgement that my symptoms are both real and debilitating
• Being honest when they’ve reached the limits of their knowledge
• Not telling me they know exactly the treatment that will do the trick
• Not encouraging me to retry medications that I’ve had severe side effects from
• Asking if I want to have children (I don’t, but if I did, it would affect my treatment in numerous ways)
• Having respect for my writing about migraine (they don’t have to read it, but I do want them to acknowledge there’s value in it)

Last week’s doctor failed on every one of those counts (and I actually wrote the list months ago), but most of the doctors I’ve seen shine on all points. I’m tremendously thankful for the incredible care I’ve received from headache specialists.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.