Category: Reader Stories

Diet, Doctors, Reader Stories

Good Doctor Stories

Kerrie Smyres

Despite my terrible experience last week, most of my experiences with doctors have been excellent. After such a negative post, I want to highlight some of the great doctors I’ve encountered.

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.

Community, Reader Stories

Headache Disorders & Migraine Blog Carnival: Invisible Illness

Kerrie Smyres

Headache Disorders & Migraine Blog Carnival logoInvisible Illness is the theme of this month’s Headache Disorders & Migraine Blog Carnival. I asked bloggers to share their thoughts on living with an invisible illness or respond to the 30 Things You May Not Know About My Invisible Illness meme sponsored by Invisible Illness Awareness Week.

Two great posts on living with invisible illness:

Responses to the 30 Things Meme:

Invisible Illness Awareness Week 2014 starts today! Learn more about invisible illness and how to cope on their website, Facebook, Pinterest or Twitter. You can find other relevant tweets with hashtags and #invisibleillness.

Invisible Illness Awareness Week logo

Meds & Supplements, Reader Stories

Candesartan Trial (and Overlooking the Obvious)

Kerrie Smyres

Candesartan (Atacand), a medication for high blood pressure, has recently shown to be quite effective for migraine prevention. After writing about it for Migraine.com (Candesartan: Effective Preventive, Low Weight Gain Risk) and having the week of more severe than usual migraine pain, I finally decided to fill the prescription my headache specialist wrote for me in January.

It’s the reason I’ve been so quiet the last few weeks.

My blood pressure is normally on the low end of the healthy range. That’s great for cardiovascular health, but limits migraine prevention options. While my headache specialist won’t prescribe beta blockers because of this, candesartan works in a different way than beta blockers do, so he didn’t think it would lower my blood pressure too much.

Over two weeks of taking 4 mg candesartan each morning, I was increasingly fatigued and brain fog made writing nearly impossible. It felt a lot like I had a migraine all the time, but the pain wasn’t any worse than usual. When checking my blood pressure finally occurred to me, it was bordering on too low. Not dangerously low, but considerably lower than I was used to. Whether that was the issue or I was feeling typical side effects of the drug, I decided to stop taking candesartan*. A week later, I feel almost back to normal (my new normal, that is).

I’m very careful to monitor my symptoms when I take a new drug or try a different food, but I so often miss changes that seem like they should have been obvious. It’s funny how the mind goes with what it knows rather than making new connections. My symptoms were migraine-like, so I dug around for triggers because that’s what I always do. It took a week of significant, escalating fatigue before I considered that the drug could be the culprit, even though I thought I was vigilant in watching for adverse effects.

Candesartan wasn’t for me, but I do recommend trying it if you’re looking for a new preventive and aren’t at risk for your blood pressure dropping too low. The research is quite strong (as far as migraine preventives go) and the side effect profile is pretty minimal.

*Stopping blood pressure meds abruptly could cause a stroke. If you’re considering discontinuing yours, please talk to your doctor about the safest way to do so.

Chronic Migraine, Diet, Reader Stories, Treatment, Triggers

The Post I Never Thought I’d Get to Write

Kerrie Smyres

Not only do I think I’ve figured out my biggest migraine trigger, I have a way to treat it. Even better, the treatment is simple and straightforward and feels sustainable for the long-term. As an added bonus, it lets me eat peanut butter.

Here’s the gist, which may have gotten lost in the epically long post about mast cells, histamine and diamine oxidase a couple weeks ago:

  1. Whenever a person eats anything, histamine is released as part of the digestive process.
  2. An enzyme called diamine oxidase (DAO) processes the released histamine.
  3. I do not produce enough DAO (nor do many other migraineurs, according to at least one researcher).
  4. Without enough DAO, I can’t fully process normal amounts of histamine.
  5. All that unprocessed histamine is a major migraine trigger for me. (Studies suggest histamine could be a trigger for some percentage of people with migraine.)
  6. By taking a DAO supplement 10 minutes before I eat, I’ve been able to eat without getting a migraine.
  7. Histamine Block, the supplement I started this week, is much more potent and more effective than the one I was experimenting with a couple weeks ago, hence the drastic improvement. [Tons of people have asked where to buy the supplement. The name is Histamine Block and it’s available on Amazon. Click those words and you’ll get right to it.]

Despite still having constant head pain, it is sometimes as low as a level 1 and I haven’t had a real migraine since last Friday. I literally cannot remember the last time I felt as good as I have in this week.

Unsurprisingly, it has been a tremendously exciting and weird week. Multiple times, I’ve been driving with the windows down, dancing and singing at the top of my lungs, the stereo blaring so I don’t have to hear myself sing — and crying. I just can’t get over how normal life suddenly seems.

I’m so overjoyed and overwhelmed that I can’t make sense of the mass of thoughts jumbled in my mind. Could this treatment — which is so obscure as to be unheard of by the vast majority of headache specialists — really be “it”? Am I embarking on a future without daily debilitating migraine attacks? What does day-to-day life without a constant migraine even look like? Is my greatest wish actually coming true?

1/24/14: I awoke at 5 a.m. worried this post made it sound like I think I’ll never have another migraine, so here’s a clarification. I do not. I even expect they will stay chronic. My greatest wish isn’t to be pain- or migraine-free, but to not have a migraine all. the. time.

Having a migraine triggered every time I ate has probably been the greatest burden of chronic migraine for me. Figuring out something that’s contributing to that one piece of the puzzle — and having any sense of normalcy — is exhilarating.

Related posts:

Chronic Migraine, Doctors, News & Research, Reader Stories, Treatment

Nerve Stimulation for Chronic Migraine

Kerrie Smyres

Thinking about trying a nerve stimulator to treat chronic migraine? Ask tons of questions beforehand to help ensure you’re making the most informed decision possible. I’ve brainstormed questions to ask your doctor, other patients, and even yourself in Nerve Stimulation: Questions to Ask, my latest post on Migraine.com.

You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.