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No Treatment is Guaranteed Forever (But I Really Hope it Lasts)

Like an athlete who knows all the clichés to tell the press, I say all the right things about my recent migraine reprieve. The improvement may not last… I’m taking it day by day… No treatment is guaranteed to work forever… Sometimes I even believe myself.

When my migraine pain hit a level 6 last week, I didn’t panic. I still have migraines most days and even though the pain rarely even hits a 5, I know that more painful migraines could always resurface. I can handle it. For a day. After that level 6 pain was followed by three more days with level 5 pain, I officially freaked out.

Days when level 6 pain is a cause for celebration could come again. (Writing that sentence made my stomach turn.) I got through it before and I will once again. But I really, really, really don’t want to have to.

Last week’s migraines were likely hormonal, so they’re probably not here to stay. This is somewhat reassuring, but I couldn’t rest until the stretch of more severe migraines let up. Even now, after a couple days with little pain, fatigue or brain fog, I’m still more nervous than I was two weeks ago.

It’s not that I’m obsessing over future uncertainties, but I’m wary of making plans. I have some great ideas for TheraSpecs that require a long-term commitment of physical and mental energy. I’m also considering moderating Migraine.com’s forums. There’s no problem with doing either one right now, but what about three months from now? How about next year? Severe daily migraine attacks were the story for so long that it’s hard to believe they won’t return.

I don’t ask for much. I just want work to consistently, keep my household fed and running, and have fun with my loved ones. Having a taste of that life has been so amazing that I’m walking around like someone newly in love. Back to the (true) clichés, I’m grateful for every day, living this life to the fullest, focusing on the now, enjoying life in the moment. But I can’t deny that I will be devastated when (if?) it stops.

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Remembering Pain (with Awe & Amazement)

People say that humans can’t remember the physical sensation of a painful event after it has happened. We can remember the emotional and cognitive experiences, but not the actual physical pain. I can’t find solid evidence for whether this commonly held belief is true, but I’ve just tested it and have to say that it is for me.

Last week I had the first level 6 migraine I’ve had in months. The worst of the pain only lasted an hour, but I spent that hour marveling at how much pain a level 6 migraine could bring. Level 6! That’s at the LOW end of my severe pain scale. For many years, level 6 pain was a reprieve from higher daily pain levels.

When I got beyond thinking “Wow, migraines really hurt,” I moved onto the question that continues to baffle me: How in the world did I survive? This quotation from Anna Quindlen that I shared in The Daily Slog of Chronic Migraine provides a partial answer:

And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.

I survived because this was the normal life that I slogged through each day.

I survived because the alternative is a choice I wasn’t willing to make.

I survived because I am stronger and more courageous than I ever thought possible.

From the many readers I have heard from over the years, I know these traits aren’t unique to me, but are common among those who live with a headache disorder, chronic pain or chronic illness. You and I and everyone else who wakes up with debilitating pain and illness each day — we’re pretty incredible. Whether or not we go to work or make dinner or even get out of bed, we overcome the insurmountable every single day. We are awe-inspiring.

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Let-Down Headaches & Migraines

Have you ever gotten through a super-stressful time without a headache or migraine only to be knocked out by one when the stress lets up? Although this is a pretty common phenomenon among people with headache disorders, the evidence has mostly been anecdotal. In a study published in the journal Neurology today, researchers found that a person’s risk of getting a migraine is nearly five times higher in the first six hours after stress lets up and this let-down effect lasts up to 24 hours.

No one knows exactly what’s happening biologically to cause this to happen, but one possible explanation is that a person’s cortisol levels increase during stress. This hormone reduces pain and helps to shield you from a migraine or headache. Cortisol levels drop when the stress is released and so does its protective effects.

Read more about the study and recommendations for avoiding let-down headaches, in my post on Migraine.com, Stress & Let-Down Migraines.

(The study was specifically on migraine, but people with other types of headache disorders have told me they experience let-down headaches as well, so this information could be useful even if you don’t have migraine.)

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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.