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Predicting Botox Response for Chronic Migraine

When a patient asks if Botox will help them, the usual response is along the lines of, “Quite possibly, but you’ll have to try it to find out.” A patient’s blood levels of calcitonin gene-related peptide (CGRP) could predict whether a person with chronic migraine will respond to Botox, according to a study published in the journal Headache‘s June edition.

Researchers believe that a patient’s CGRP levels could predict whether Botox will be effective with 95% accuracy. In their study of 81 chronic migraineurs, those who had a CGRP level above a certain threshold were 28 times more likely to respond to Botox than those with CGRP levels below that threshold. (If CGRP sounds familiar, it’s probably because the research findings on migraine prevention drugs that made the news this spring are CGRP antibodies.) This is only one study and it was small. More studies will need to investigate and confirm a connection between Botox response and CGRP before doctors will begin checking CGRP levels before giving a patient Botox.

In the meantime, if you’re looking to figure out if Botox will help you, something called pain directionality is the best current predictor. Pain directionality is whether your pain feels like it is exploding, imploding or ocular. People with imploding or ocular pain are more likely to find relief from Botox than those with exploding pain.

Multiple studies have explored the connection between pain directionality and Botox response; here’s one you can read for free. However, headache specialist Alexander Mauskop warns that pain directionality “is not a very reliable predictor because some people have difficulty categorizing their pain in that way and because even if they do describe it clearly one way or another, this predictor is far from 100% accurate.”

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The Stress Caused by Illness

We all know that stress can be a cause or a trigger of illness, but we rarely hear about the inverse — that illness itself is a major stressor. In a national poll by the Harvard School of Public Health, the Robert Wood Johnson foundation and NPR, illness, whether one’s own illness or that of a loved one, stands out as huge source of stress.

When asked what their biggest source of stress was in the previous year, 43% of respondents to this open-ended question said health-related problems.

Respondents who were ill or disabled were most likely to have experienced a lot of stress in the month prior to being polled. The top three groups experiencing high stress in the previous month were all health-related:

  • Poor health condition: 60%
  • Disabled: 46%
  • Has a chronic illness: 36%

(The next most common stressor was income less than $20,000, which applied to 36% of respondents.)

Illness is stressful in so many ways: not being able to participate in your normal life, grief and identity loss, not being able to work and financial concerns, being cut off socially, fearing for your quality of life (or life itself), and many, many other issues. There’s also the physical stress of illness itself. Episodes of a illness, like a migraine or cluster headache attack, physically stress the body, as does the daily grind of a chronic disorder.

And, as this poll shows, our most important self-care mechanisms — the ones that are likely to make our bodies and spirits more resilient — go out the window when we’re stressed. The top four things that change when people are stressed? Sleep, proper nutrition, exercise and spiritual practice (listed in descending order).

Stress definitely can be a trigger for a lot of illnesses, but the fact that illness itself is a stressor is too often overlooked. People with chronic illness are told they’d feel better if they reduced their stress. Those who offer such advice are rarely aware that illness itself is responsible for a large part of our stress.

Fortunately, there are programs that specifically teach people how to cope with illness-based (and other) stress. Mindfulness-based stress reduction (MBSR) was a major help for me. Unfortunately, these programs can be expensive in terms of money, time and energy. You can get a decent approximation of the course for less than $30 by reading Full Catastrophe Living and listening to Jon Kabat-Zinn’s Guided Mindfulness Meditation Series 1 CD set. (A lot of libraries carry the book and CDs, so you may be able to introduce yourself to the concepts for no charge). There’s also a $199 interactive online MBSR course offered by the UMass medical school, which developed the program.

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New Daily Persistent Headache Research News

New daily persistent headache (NDPH) is “rare” and “poorly understood;” there is “no known treatment for NDPH.” These statements, which are from abstracts of two studies that were presented at the American Headache Society’s conference in June, succinctly capture the frustrations of people living with NDPH. These studies provide some insight into NDPH.

Characteristics & Precipitating Factors of NDPH

An examination of patients with NDPH at Stanford’s headache clinic revealed some interesting details about the characteristics of NDPH:

  • Patients most often described the pain as pressure-like and in the front of the head
  • 75% said the pain was on both sides of the head (not one-sided, like migraine commonly is)
  • 69% had migraine-like features to their headaches (46% of those had photophobia, 46% had phonophobia, 37% had nausea)
  • 17% had a history of episodic migraine or another headache disorder prior to the NDPH diagnosis
  • 53% had a family history of headaches

In addition, 75% of patients could identify an event or illness that immediately preceded the headache’s onset:

  • 48% had an infection (usually viral)
  • 26% had undergone recent surgery
  • 7.4% had physical trauma
  • 7.4% had psychological stress
  • 11% had another precipitating event

This research is important to both understand NDPH better and to help classify whether it is a primary or secondary headache disorder, which can influence how it is treated.

Botox for NDPH

Perhaps more interesting for people with NDPH is a study of Botox as an NDPH treatment. In this study, 22 patients received Botox injections and 95.4% percent had multiple rounds of injections. Following the injections:

  • 4.6% of patients had 21-30 headache-free days a month
  • 18.1% had 11-20 headache-free days a month
  • 9.1% had 0-10 headache-free days a month
  • 68.2% had no decrease in headache days

Researchers also looked at a reduction in pain severity.

  • 13.6% had a greater than 50% decrease in headache severity
  • 54.6% had less than a 50% decrease in headache severity
  • 31.8% had no change in headache severity

The numbers aren’t staggering, but 32% of patients did have at least some headache-free days with Botox. That’s not trivial for people who have received no other relief.

This was a small retrospective study. It’s results point to the need for more research on Botox for NDPH.

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“Chronic Illness” & Being “Sick”: Disempowering Language?

People sometimes criticize me for saying I have a chronic illness or calling myself sick. They tell me it’s disempowering, that I’m being negative and limiting myself. I get the pop psychology behind the critiques and understand it may be helpful for many people to shed these labels. For me, however, it was crucial to embrace them.

I grew up believing I could do anything if I put my mind to it, that I could push through anything and succeed with hard work. For my first 13 years with chronic migraine, I did just that. I was laid up by “bad headaches” at times (sometimes for weeks at a time), but mostly I took drugs and soldiered on. Then the migraines got so bad that I could no longer pretend I was OK.

I felt like such a failure. Not only did I have horrendous head pain every day, I thought I was to blame for the changes in my life. I thought if I had been strong enough or worked hard enough, I would be able to live a normal life.

Many years later, I can tell you I was wrong. It took me a long time to believe that. First, I had to deprogram myself from all the brainwashing I’d done. Before I could do that, I had to open my eyes to the fact that I had a disabling illness. I had to accept that I had done nothing wrong and I had not failed. I had to believe it was possible for an illness – even one that included headache as the primary symptom – to be debilitating. I had to see that, while I could influence my health, it was ultimately beyond my control.

So, it’s been important for me to acknowledge that I can’t do some things because of migraine. It’s been vital for me to accept that migraine can be incapacitating. It’s been necessary to see my “failures” not as my own failings, but as a natural consequence of severe illness.

Despite what some people read into my language choices, I do not see myself as a victim. I do not seek pity. I do not believe migraine has ruined my life. I do not solely identify with illness (it’s part of me, but by no means all of me). My ego does not rest on having a chronic illness or being sick.

Maybe some people do have their identities intertwined with illness and need to shake it off to become psychologically healthy. That’s not me. Validating my experiences and emotions – rather than ignoring reality – has let me find peace in life with illness. That sense of peace was maddeningly elusive in the years I denied the truth.

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Medical Marijuana for Migraine: A Reader’s Story

Medical marijuana stories tend to fall into one of two categories: “OMG, it’s so amazing!” or “Marijuana is the worst thing ever.” Reality, as well all know, tends to be a bit more nuanced. A reader left her story on my most on medical marijuana for migraine and headache disorders. I’m sharing it with you because she is detailed in her explanation and also acknowledges some of those nuances.

I have had migraines for 34 years. (since I was 5)

I have tried everything. (No need for a list, we all seem to have similarly long lists of failed meds.)

One thing I had never tried (for migraine) was medical marijuana! I just assumed it was a recreational drug with out real abilities to help with pain, nausea and many other ailments. So, when it became legal to obtain medical marijuana I gave it a try. This plant has helped me tremendously. (Ok, here is where you wonder….) this is what I have found… I can take one or two inhalations off of a Vaporizer or just old fashioned joint and I am able to function again (remember that feeling you had the first time you took a triptan and it worked, yeah, that kind of amazing) now, I’m not saying this will work for everyone or is it for everyone but, if your in a state where medical marijuana is legal, you owe it to yourself to try it and see. It’s not like all the serious medications we’ve all tried over our life time aren’t putting us at risk for a lot of other side effects. Funny none of them offer feeling happy and relaxed as a side effect;) There have been times where I feel a migraine coming on and I inhale one or two hits and I am almost instantly feeling better, heck often I want to do something, like make a yummy dinner or go for a bike ride! (Really, no other medication has ever made me feel that way and helped curb a migraine)

I’m glad I got over the stigma of marijuana. My conservative family sees the change in my health, and are supportive. (I didn’t dare tell anyone until I tried it and knew that it was a reliable tool in my migraine tool box of medications and supplements)

Questions:

Yes, I have a job. (Landscape Desinger) yes, I do keep careful eye on what I eat and drink tons of water. I consider myself a migraine scholar, always reading and trying to learn more. I am a regular gal, looking for answers…willing to try just about anything to just feel better and regain my life)

No, I don’t drink or do other drugs, never been my thing. I don’t get all silly and goofy when I medicate with marijuana. Yes it makes me feel better. I I medicate with marijuana I do feel uplifted, like life is a bit better and my cup feels full. My nausea goes away, severity of throbbing is diminished and I am able to function again.

Now, if I’ve had a migraine for days, and have taken all my rescue RX’s and at that point nothing seems to help, but the marijuana still takes the edge off of my nausea and pain. When I am days into a migraine I prefer to use an edible marijuana candy, (like a flavored cough drop with 25, 50, or 100mg of THC a compound in marijuana)

I don’t think marijuana is a cure all. It does help for me. I am thankful a simple flowering plant has helped me regain some quality of life with my family. I can only hope that enough folks will be willing and able to try this medicine as an option in their migraine tool box. Thank you for reading. I appreciate your time.

This is, of course, only one person’s story. Marijuana, like any medication, should be used wisely and with caution. Please read Medical Marijuana for Migraine & Headache Disorders for guidance and remember to use it in moderation to avoid the risk of rebound (medication overuse) headaches.

If you’d like to share your experience, please leave a comment or send it to me by email: kerrie[at]thedailyheadache[dot]com.