Books & Products, Society

Migraine in “We Were Liars”

“I cannot recall a time when a narrator has brought this much focus on migraine disease with such apt descriptions,” Janet wrote in her review of the novel We Were Liars.

I had similar thoughts when I read the book a month ago (at Janet’s recommendation). The descriptions were so good that I highlighted passage after passage, eager to share them with you. Here are a couple:

“Welcome to my skull. A truck is rolling over the bones of my neck and head. The vertebrae break, the brains pop and ooze. A thousand flashlights shine in my eyes. The world tilts. I throw up. I black out. This happens all the time. It’s nothing but an ordinary day.”

“‘You have no idea what it feels like to have headaches like this. No idea. It hurts,’ I say—and I realize tears are running down my face, though I’m not sobbing. “’It makes it hard to be alive, some days. A lot of times I wish I were dead, I truly do, just to make the pain stop.’”

Then I got to the twist for which the book is known. The power of these incredible descriptions was diffused by a stereotype that, while not untrue, is a major contributor to migraine’s stigma. So much so that all the positive regard I’d had for the book’s depictions of migraine was gone. For me, no matter how elegant and accurate the descriptions, they can’t cancel out the harmful message I fear the book ultimately spreads about migraine.

I was so eager to have a wildly popular book raise some awareness of the severity of migraine that maybe I expected too much. Still, I’m disappointed. I’d like to say more, but don’t want to risk spoiling the book for anyone — it’s a great read.

That’s my take, which is probably a minority opinion among migraineurs. Have you read We Were Liars? What do you think of how it depicts migraine? (No spoilers, please!)

Books & Products, Meds & Supplements, Treatment

Testing Ausanil, Capsaicin Nasal Spray for Migraine & Headache

Capsaicin (an active component of chili peppers) as a treatment for migraine, severe headaches or pain flits in and out of the news. For migraine, the preferred form is a nasal spray. Ausanil, a nasal spray of capsaicin and ginger, is the latest entry into the marketplace.

The company sent me a free sample bottle and, after I tested it once, I interviewed company founder Dr. Anjan Chatterjee. Dr. Chatterjee is a neurologist by training who has worked in drug development for the last 10 years. He also has migraine and is unable to take many medications, but has found relief with Ausanil, which he’s been using for three years.

How Ausanil is Said to Work

Capsaicin nasal spray is thought to work for headache and migraine by desensitizing the trigeminal nerve (which it accesses through the nose) and reduces CGRP, thus reducing swelling and inflammation. CGRP, as we’re learning, is thought to play a pivotal role in migraine.

The Research

Capsaicin is known to be effective for pain relief, but there’s not resounding evidence – or even very many studies – that show its efficacy for any headache disorder. Civamide, a lab-created version of capsaicin, was promising in a few small studies, but drug development was halted early. I don’t know if that’s because it wasn’t very effective, didn’t have a high enough profit potential, patients hated the sting or if it was due to some other reason.

A study presented at the American Academy of Neurology last week tested intranasal capsaicin (presumably Ausanil, since Dr. Chatterjee was one of the researchers and his company is mentioned in the PR materials) in 18 patients with a variety of headache disorders that cause severe pain (including migraine, cluster headache and tension-type headache). Thirteen participants reported complete pain relief, four had some relief and one had no relief. Relief lasted between 30 minutes and several hours. (According to those criteria, the 30 minutes of pain relief the first time I tried Ausanil would be considered a positive response, even though the pain came back even worse than before I used it.)

My Experience

I wanted to test Ausanil as any consumer would, so I tried it before I talked to Dr. Chatterjee. I read the package instructions, looked at the website and watched the YouTube video on using Ausanil correctly. That’s more thorough than I usually am. I was about to spray chili pepper up my nose and didn’t want it to hurt more than necessary.

Use 1: I sprayed Ausanil in both nostrils. It burned. A lot. The stinging hurt intensely for about 15 minutes and was gone after 30. The initial pain relief was also gone after 30 minutes… and the migraine came back worse than before I used the spray.

Use 2: After talking with Dr. Chatterjee, I gave the spray another try. This time, I only sprayed it in the left nostril since the migraine was concentrated above my left eye. The stinging wasn’t as intense, likely because it was only one nostril, but it still hurt. The spray didn’t provide any pain relief this time, not even through the distraction of the stinging. It didn’t make the migraine worse, though it seemed to render ineffective the triptan I took 15 minutes beforehand.

Two tests were enough (in fact, Dr. Chatterjee usually says that if it doesn’t work, a person shouldn’t bother trying it again). Considering the potential pain of a migraine, the stinging isn’t a big deal. I would gladly trade 30 minutes of burning in my nose to stop a migraine attack. Except that it didn’t work for me.

In our call, Dr. Chatterjee said that only a few people, all of whom have chronic migraine, have told the company that the spray made the migraine worse. Most users either have a response or they don’t.

What You Need to Know

  • Ausanil will sting and burn when you spray it in your nose. There’s no way around that side effect. Participants in Dr. Chatterjee’s recent study said the burn lasted 2-10 minutes. He told me that the sting lessens over time and that he barely feels it anymore.
  • Watch the YouTube video on the correct use of Ausanil.
  • Don’t inhale.
  • Spray it only in the nostril on the side that the migraine is on. If you have pain on both sides, you can spray it in both nostrils, but it will burn more.
  • Have Kleenex nearby. You may sneeze, your nose may run or your eyes might water. Use a separate tissue for your eyes and your nose so you don’t get any residual capsaicin in your eyes.
  • Check Ausanil’s website to learn more about the product and how it works. You can also watch testimonials from patients for whom it has been effective.

Bottom Line

I recommend giving Ausanil a try if your headaches or migraines are severe. Yes, it burns, but the burn lasts way less time than the headache or migraine would. Other than that, there are no documented side effects. The research doesn’t strongly support the use of intranasal capsaicin for headache disorders, but there’s enough there that it’s worth a try, especially if you’re not getting relief elsewhere.

To Buy

  • Ausanil is currently $28.95 (with free shipping) for an 8 ml bottle on Amazon. It’s strength is listed as 3x capsaicin and 3x ginger.
  • Sinol Headache, a competing product, is $11.27 (including shipping) for a 15 ml bottle. It’s strength is listed as 4x capsaicin. It doesn’t contain ginger, which Ausanil does.

(I feel like a jerk telling you about a competing product after Dr. Chatterjee and his PR team were so kind and helpful. But, as a patient who has spent a lot of money on products that don’t work for me, I feel obligated to tell you about the less expensive option. The two products aren’t identical; you may find one works better than the other.)

Books & Products, Coping, Mental Health

Mindfulness for Depression

Mindfulness as a tool for coping with depression is often distilled into “thinking your way out” of depression — which angers pretty much anyone who has ever struggled with depression. Mindfulness is more about becoming aware of how negative thoughts build on each other and cause additional emotional pain, then learning how to attend to such thoughts in a way that limits their damage. At least, that’s how it works for me.

Zindel Segal, who wrote The Mindful Way Through Depression and developed the technique of mindfulness-based cognitive therapy, explained in a TEDx Talk how mindfulness can be an effective tool for coping with depression and preventing relapse. He also talks about the science behind the approach and research about its application. Here’s his basic description of how it works:

What we’re trying to get people to do is to anchor themselves in their experience so that when a negative emotion comes up in the mind, it can wash over them; it doesn’t…bring to mind all of the negative associations that for some people can happen very automatically. Instead they can find a different place for standing and working with these feelings, and as a result have much more of an option for selecting a response and influencing what happens next.

Segal’s TEDx Talk is good, but If you’re looking for help with depression and guidance on how to apply mindfulness to cope with it, start with the book. It’s tone is less academic than the TEDx talk and it provides concrete hands-on guidance.

You’re probably tired of hearing me say that I’ve found mindfulness to be an invaluable tool for coping with depression, chronic illness and even migraine attacks.

Books & Products, Chronic Migraine, Diet, Meds & Supplements, Treatment, Triggers

Histamine Intolerance & DAO: Answers to Your Questions

So many of you emailed me with questions that I put together a Q&A. This is a far broader topic than I can summarize (even with six hours of writing!), but it’s a start. The formatting is ugly and you’ll have to scroll through a lot of text. I’m prioritizing your access to the information over making it look nice. Expect typos.

I don’t have allergies. Could I still have an issue with histamine?

Absolutely. I don’t have allergies either and have no allergy symptoms. Right now, I can only present myself as a case study and say that I’ve encountered multiple people in forums who are histamine-intolerant and do not have allergy symptoms. This is on my list of topics to investigate and I’ll present real data when I can.

What’s the name of the supplement you use and where can I buy it?

The actual name is Histamine Block and it’s available on Amazon. Histame is probably the most popular DAO supplement. It costs less than Histamine Block, but is also less potent. (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.)

What is an HDU?

HDU stands for “histamine digesting unit” and you’ll see it listed on every DAO supplement. It appears to be a scientific term that’s been co-opted for marketing, but the two don’t align. Currently, I only use the numbers to compare the strength of one supplement to another. I’ve also found that, so far, 20,000 HDU is most effective for me.

I don’t get a migraine or headache every time I eat, but I do sometimes and can’t connect it to any particular food. Could DAO help me?

Quite possibly. I think I’m fairly rare to have eating anything trigger migraines (or histamine intolerance symptoms). Far more common is for people to have trouble with particular foods. Certain foods naturally contain histamine or are “histamine liberators,” both of which result in even higher amounts of histamine to your system than is part of the normal digestion process. Most people don’t have as much trouble with the normal histamine release as I do, but run into problems when they eat foods that contain or liberate additional histamine.

What foods contain or liberate histamine?

This is a landmine. The short answer is that you will find many conflicting lists of histamine-containing foods online. Searching forums will confuse you even more. Here’s the list of histamine-containing foods that’s most widely regarded as accurate. You’ll notice that it also includes foods containing tyramine. The two are related (both being amines) and there’s a lot of overlap between them. Tyramine has long been suspected to trigger migraines, and possibly other headaches, so a list restricting both is a good place to start.

Starting an elimination diet is overwhelming and time-consuming and I have tons of guidance to offer. On another day.

Will DAO work if I don’t change my diet?

Maybe, but the odds are against you. Here’s a full post on DAO and diet. lAdded Dec. 3, 2014]

Are DAO supplements safe?

Yes, according to the dietician I’ve been consulting with (who is as close to an expert on this topic as you can get), my naturopath, and the recent DAO for migraine prevention study. Any of the DAO that isn’t used is flushed out through the digestive process. It’s not absorbed in any way, nor does it stick around for more than a few hours. (The information in the last two sentences is from my naturopath. I’m going to double-check it with the dietician.)

Do DAO supplements have any side effects?

None of the 117 patients who completed the aforementioned study of DAO for migraine prevention reported any side effects. That’s pretty much unheard of for a study of a drug or supplement. Online forums are a little different (and also not part of a controlled experiment).

The main side effect I’ve seen on forums is that some people say it makes them shaky. That was true for me initially. Taking the DAO only five minutes before I ate seemed to help, I think because it didn’t sit in my stomach for too long without food. I did that a few times before moving to taking it 10 minutes before eating. My intuition is that it is more effective if it has more time to release before encountering food, but I don’t know that for sure. I’ll ask my dietician about it.

Someone just told me that she flushes and sweats when she uses any brand of DAO supplement. That’s the first time I’ve heard of that side effect and I don’t know how common it is.

I sometimes react to natural supplements. Am I likely to react to this one?

I’ve demonstrated so much intolerance for natural supplements that my naturopath only prescribes pharmaceuticals for me(!), but I’m doing fine with this one. Use your own judgment to decide if the risk is worth it for you. If your reactions tend to be severe or you think the risk is too great, consulting with a naturopath or dietician before taking it would be wise.

Where did you learn about DAO supplements?

The dietician and my naturopath both recommend it. It is also commonly used among people with histamine intolerance, so it’s mentioned on forums a lot.

If I have a histamine issue, could I take antihistamines instead?

If your triggers are connected to food or eating, it appears to be more effective to take DAO than an antihistamine. Adding the enzyme you’re deficient in seems to address the problem more directly than an antihistamine. Antihistamines can also cause a strong enough rebound effect that the dietician warns against them. For now, I’m still taking 12 mg of cyproheptadine, a prescription antihistamine used for migraine prevention, each day.

If you do decide to try an antihistamine, patients with histamine intolerance (whether their symptoms are migraine, headache or something else) seem to have more success with older drugs, like cyproheptadine and Benadryl, rather than the newer ones (Allegra, Claritin and Zyrtec). I don’t know why.

What’s “histamine intolerance”?

Histamine intolerance (often referred to as HIT) is when someone has a reaction to ingesting histamine and/or the release of histamine that accompanies digestion. The reactions vary, but can include diarrhea, headache (and migraine) nasal congestion, wheezing, low blood pressure, irregular heart beats, rashes, flushing, and itching.

Histamine intolerance isn’t a food allergy, but is a food sensitivity (it’s an important distinction). It’s not widely known about, but is starting to get a lot of attention in parts of Europe (especially the U.K.) and Australia. Thanks to the internet, the information is accessible if you know where to look.

For what it’s worth, I haven’t been diagnosed with histamine intolerance, nor have I diagnosed myself with it. But it’s the best search term to find information on histamine and food, and it’s the term most people who have issues with histamine apply to themselves.

Why do you qualify so many statements with “appears to” and “seems to”?

There are a lot of unknowns about histamine and DAO. Finding solid information online is difficult and patient groups lean toward pseudoscience. While I believe I’ve sussed out reliable information, I would rather say I’m not absolutely sure about something than discover that I presented incorrect answers as fact. If I continue to feel as good as I have this past week, I’ll soon be combing through journal articles at the local university library and will pass on what I uncover.

What else do I need to know?

I’m sure I’ll be sharing much more as the week — and year — goes on. If you want to know more NOW (I sure did when I first started learning about this), here are some places to get started:

  • Histamine Intolerance Awareness (website) — The food list on this site is kind of difficult to follow and some of the inclusions are questionable, but the rest of the information is a very helpful start. Genny Masterman, who put this site together, has a book called What HIT Me? It’s a good introduction and is written in an accessible, easy-to-follow style, but I found the meatiest information to be covered sufficiently on the website.
  • Dealing with Food Allergies (book) — This is my favorite book for the general public, even though the title is misleading (histamine intolerance is NOT an allergy). It doesn’t contain a lot of detail, but hits all the important points and has clear, well-organized food lists. Be sure to check the sections on both histamine and benzoates (benzoates are histamine liberators). I think there’s a section on tyramine as well. The author, Dr. Janice Joneja, the dietician I’ve been working with.
  • Histamine and Histamine Intolerance (journal article) — If you’re willing to wade through an academic article, this is the one to read. I’m working on summarizing it, but not sure when it will be ready to post.
  • Other websites — If you come across another website and are wondering how accurate it is, please ask me. I’d like to have multiple sites to refer people to and it would be helpful to see which sites people who are new to this topic find.

Please remember that I’m not a medical professional and nothing on this site should be considered medical advice. I’m a patient reporting on what I’ve learned and experienced. I hope that it can help you with your own sleuthing, but please solicit the input of your health care team.

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Books & Products, Symptoms, Triggers

TheraSpecs Pilot: Stylish Aviator With a Curved Lens for Maximum Protection

I’m so excited to finally be able to announce that TheraSpecs Pilot, an aviator frame with a curved lens for maximum light protection, is now available. I’ve been wearing a prototype for months and love them so much that I’ve been dying to tell you about them!

Although Pilot looks like a classic aviator from the front, the lenses are curved for a wrap effect, so they block light really well. The golden metal alloy frame compliments the rosy hue of the TheraSpecs tint, plus it is very lightweight. Add in soft silicone nose pads and spring hinges and this eyewear is super comfortable in addition to looking great. Although aviators aren’t usually my style, I like Pilot so much that I wear them almost exclusively as my indoor frame.

Even better, we’re offering a 30% introductory discount off the regular price of $99 for indoors and $129 for outdoor polarized lenses. Order your Pilots this month and you’ll automatically receive the discount — that’s $69.30 for a pair of indoors and $90.30 for outdoors.