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Finding an Effective Migraine Treatment: An Emotional Whirlwind

Hart uses this picture of me in presentations to show his motivation for starting TheraSpecs.

Hart uses this old picture of me in presentations to show his motivation for starting TheraSpecs.

Despite frequently wondering what life would be like if I ever found an effective migraine treatment, I wasn’t prepared for the emotional whirlwind of it.

In the first couple weeks, elation and nervousness dominated my thoughts. Being able to do the normal, mundane things of life felt incredible, but I was also overwhelmed. I kept wondering what life would look like without constant migraines. What would I do with my days? What would work be like? Would I be able to resume friendships that have been on hold? How would Hart and I relate to each other? Would I still want to write about migraine? Nothing bad or worrisome was happening, but I couldn’t wrap my mind around how my day-to-day life would change.

After those first overwhelming, uncertainty-filled weeks, my thoughts mostly settled down, but I experienced four weeks of very strange anxiety. You know that fluttery nervous feeling you get in your stomach? I’d get that for a few seconds with every thought. And I mean EVERY thought, from “I need to downshift” while driving and “So that’s how they’re related” while watching a movie. My reaction to thoughts that actually provoked anxiety was exactly the same. The flutter happened less and less frequently over the four weeks until it disappeared.

Those are the stressful and strange reactions, but I’ve mostly been amazed by two things: how easy everything is and how present I am.

Showering no longer brings imminent collapse. The dining chairs and table are no longer too hard to sit at for meals. Making phone calls is no longer beyond my ability. Going to the grocery store is no longer the sole activity I can do in a day. Such simple things have taken maximum effort for the last 10 years. Without having to psyche myself up before every chore and not being exhausted by minimal tasks, everything seems unbelievably easy. This extends to writing, too — without constant brain fog, writing is so much easier. I’ve even been able to wade through tons of medical journal articles and understand them without trouble, then synthesize the findings into my own words.

And I no longer feel constantly separated from the world, unable to connect with other people or be truly present at any moment. My conversations are more interesting, being with friends is more fun, work doesn’t feel like work, my time with Hart is fantastic. I’ve always struggled to put that sense of disconnection into words — it’s like being at the bottom of a well or underwater. One blog reader said it was like being wrapped in cotton. Whatever the best metaphor is, the sensation of being separate, apart or disengaged is one that many people with chronic migraine seem to share. That was my normal for so long and, while I knew I felt that way, I didn’t know just how removed I was. I’ve been trying to practice mindfulness and presence the last six years without actually having the ability to be fully present.

I’m adjusting to this new normal. It’s exciting and nerve-wracking, familiar and strange. There’s no guarantee I will continue to feel this good indefinitely, so I’m trying to enjoy this time without getting too far ahead of myself. Mostly I’m letting my days unfold organically and approaching all these changes with wonder and awe.

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Medical Marijuana for Migraine & Headache Disorders

Considering treating your migraine or headache disorder with medical marijuana? It’s a complicated topic with a variety of perspectives, so I’ve tried to distill some of the most important information below. I hope it’s a helpful guide.

Marijuana’s Efficacy for Migraine or Headache Disorders

Because laws make research of medical marijuana very difficult, there have been no blinded studies on its use for migraine or headache disorders. Anything you learn about it for migraine or headache is based on anecdote (or extrapolated from a small amount of research on rats). I’ve asked multiple headache specialists for opinions and have been told repeatedly that patients are pretty much evenly split between those who get relief and those who feel worse after using it. My discussions with patients are along those same lines. It’s strongest track record is with treating nausea, which can be as debilitating as the pain for some of us.

Efficacy of Different Strains

There are hundreds (may be even thousands) of different marijuana strains, all cultivated to have different effects and address different symptoms. If the marijuana that your brother’s friend’s cousin got for you didn’t help (or made you feel worse), a different strain may still be effective. You can look up many of the strains on Leafly by condition or symptom that they treat, including migraine, nausea, anxiety and insomnia. Leafly also displays the most commonly reported adverse effects of each strain. Not all of these strains will be available at your local dispensary, but dispensary employees can give you recommendations for which might be most useful for you.

Rebound Headache Risk

A couple headache specialists have told me that they don’t know for sure, but believe that marijuana has a similar risk for rebound (medication overuse) headaches as opioids do. It’s best to follow the same rules for opioids (no more than 10 a month) and use as little as possible each time.

How Much to Use

There are no set guidelines for how much to use, though starting with a very small amount is probably wise. Watch your symptoms carefully to see if you feel better, worse or about the same, then decide if you want to try more. If you smoke (or eat) too much, there’s a chance you’re not actually treating the migraine or headache, but getting so stoned that you don’t notice it very much. That may be what you’re going for, but remember that the more you use could increase your risk of rebound headaches.

Smoking/Vaporizing vs. Eating

The two main ways to use medical marijuana are to smoke it or to eat it. The differences are akin to those of oral triptans vs. injected triptans.

Smoking gets the marijuana into your system the fastest and you can quickly see if you need more. Smoking anything can be harmful, although a recent large-scale study found marijuana to cause less lung damage than tobacco. (Using a vaporizer has similar advantages to smoking, but is thought to be less potentially damaging to the lungs. Vaporizers are expensive, so you may not want to invest in one until you discover if marijuana is even helpful for you.)

If you eat marijuana, it will take longer to take effect and your digestive tract may not process a second dose in time for it to be effective. Gastric stasis (delayed emptying of the stomach, which is a migraine symptom) could also mean that you don’t absorb as much as you need when you need it. And, of course, if you vomit during your migraines, you may not absorb much at all.

A friend who was using Marinol (prescription THC capsules) for chemo-induced nausea told me its effects were highly variable. Sometimes it did nothing, other times it helped tremendously. It depended on how how long it had been since she’d last eaten and how effectively her digestive tract processed the drug that day.

Depression and Marijuana

Although depression is one of the many conditions that marijuana is purported to treat, some research indicates that people who use marijuana are more likely to be depressed than those who don’t. However, this could be coincidence rather than causation. As the Mayo Clinic says, “Marijuana use and depression accompany each other more often than you might expect by chance, but there’s no clear evidence that marijuana directly causes depression.”

Legality

Different states have different laws and restrictions governing the use of medical marijuana. Even if it is legal in your state, the regulations may make it undesirable. (In Arizona, for example, employers can check a database of all registered medical marijuana users… if you’re not OK with your employer knowing that, you probably don’t want to get registered.) In your research, check both official statutes and news articles. The official statutes provide the legal framework, while the news stories tell you how the law is being implemented. Whatever the laws, it’s better to investigate exactly what issues you might encounter rather than stumbling into a mess.

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Cefaly Availble in the US, Insurance Coverage

If you’re in the US, you can now order a Cefaly from Cefaly.us. The device itself is $295 (plus $29 for shipping) and a three-pack of electrodes is $25. You must send a copy of your prescription before they will send your order. Devices will be delivered beginning the first week of April.

Here’s what Cefaly’s FAQs currently say about insurance coverage:

Cefaly is not currently reimbursable via the social security system and therefore is not listed in the catalogue of approved medical devices. However it is becoming increasingly apparent that certain health insurance companies and mutual funds are partially funding this treatment and may do so on a case-by-case basis.

We therefore advise that you write to your insurer or health care in order to ask them if they will help you with the cost of Cefaly. Explain your migraine problem and the benefits that the device brings you. Make sure you to attach a prescription along with a copy of the invoice to your letter.

Translated: Your insurance company might reimburse you, but probably not. Sending your insurance company a letter with your receipt, as the Cefaly website recommends, is unlikely to work out in your favor. If insurance coverage is imperative for you, contact your insurance company before purchasing the device. They may refuse to cover it at all or they may allow you to submit an appeal for coverage. Be sure to ask if having your doctor send a letter of medical necessity will increase the chance that they’ll cover it.

April 8, 2014: Check Cefaly Insurance Coverage Update for current information.

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FDA Approves Cefaly for Migraine Prevention

Cefaly

(i can’t believe I’m posting a selfie with a Cefaly.)

The FDA has approved the Cefaly for migraine prevention in the U.S., according to an announcement from the agency yesterday. Purchasing details aren’t available yet, but it shouldn’t be too long since it is already being manufactured for other countries. It will be available by prescription, which I expect means it will also be covered by insurance. You can order one now at Cefaly.us. The device itself is $295 and a pack of three electrodes costs $25. You must send them your prescription before they will ship your order. I don’t know what this means for eventual insurance coverage.

Here’s an excerpt from the FDA’s press release that describes the studies the approval was based on:

The agency evaluated the safety and effectiveness of the device based on data from a clinical study conducted in Belgium involving 67 individuals who experienced more than two migraine headache attacks a month and who had not taken any medications to prevent migraines for three months prior to using Cefaly, as well as a patient satisfaction study of 2,313 Cefaly users in France and Belgium.

The 67-person study showed that those who used Cefaly experienced significantly fewer days with migraines per month and used less migraine attack medication than those who used a placebo device. The device did not completely prevent migraines and did not reduce the intensity of migraines that did occur.

The patient satisfaction study showed that a little more than 53 percent of patients were satisfied with Cefaly treatment and willing to buy the device for continued use. The most commonly reported complaints were dislike of the feeling and not wanting to continue using the device, sleepiness during the treatment session, and headache after the treatment session.

Neither of these studies are new and still have the limitation of being short-term, but I’ll reiterate that it’s worth trying out. Even more so now that you won’t have the additional expense of ordering it from Canada and your insurance may pay for it. I’ll keep you posted on it’s availability.

Here’s my experience with it, including a detailed description of what it feels like:

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Mast Cell Disorders, DAO & Food Trigger Testing

While I have no trouble writing about my emotions in relation to treatments or life with chronic illness, telling you the details of my treatment makes me self-conscious of talking about myself. Here’s an update for those of you who are curious about my mast cell disorder exploration, success with the digestive enzyme diamine oxidase, and sorting of food triggers.

Mast Cell Disorders
The mast cell specialist was kind and knowledgeable. He did a full mast cell disorder-related work up (including the fourth time in a month that I had to do a 24-hour urine collection) and a bunch of food allergy tests. Everything looked great. No mast cell disorder and all negative responses to food allergies.

Mast cell disorders aren’t too well understood, so there could be other markers to test for eventually, but I’m not concerned. When I add up the results of those tests, my symptoms, the genetic testing that showed DAO-related mutations, and my great response to DAO, I’m pretty well convinced there’s no mast cell disorder here. For which I am very grateful.

Diamine Oxidase (DAO)
Sunday marked eight weeks since I started taking the digestive enzyme DAO with every meal and I’m still doing really well with it. I use the Histamine Block
brand most often, but occasionally supplement with Histame, which has a lower dose in each capsule, for drinks or snacks. I get heartburn if I don’t eat enough calories or drink enough water when I take DAO, but that’s easy to remedy. Other than the thrill of finding something that keeps me from having a migraine every single day(!), there’s not much to tell.

Food Testing
Unfortunately, I still have migraines most days while I continue to test (and react to) foods and sort out what my other non-histamine-related food sensitivities are. As soon as I recover from one migraine, I jump back into testing foods, which frequently triggers another migraine. Testing foods seems like it would be straightforward, but it’s extraordinarily complicated. There’s the food itself, but the build up of certain naturally occurring food chemicals, types of food, and even quantity also figure into the equation. I will spare you the boring details (which my poor, sweet husband has had to listen to for months). It’s messy and confusing, but I’m making progress. I’ve never been so excited to eat kale, cauliflower or zucchini and I’m over the moon that decaf coffee doesn’t appear to be triggering migraines or other headaches.

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