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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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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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The Disappointment of Failed Treatments & Rallying to Try Again

I’m really struggling with the migraines right now, both physically and emotionally. It has been eight weeks since I got Botox injections and I’ve seen no improvement in the migraines. They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence. It is always disheartening when a treatment that seems miraculous for many people, like Botox or Topamax, fails. I spent January grieving for the loss of yet another potential treatment.

Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.” It has been five years since I wrote those words. Five years of worsening migraines and countless attempts at treatment that have all been ineffective. Clinging to the promise of finding an effective treatment sometimes feels like an exercise in self-deception.

Yet, here I am, cheered by the thought of a new drug I’m going to try and the treatment possibilities I’m going to talk to my doctor about. I’ve been talking with Hart about my plan to schedule appointments with my headache specialist for every two months and the journal articles I plan to take him on my next visit. Just as the severity of the migraines is cyclical, so is my hope for treatment and the enthusiasm with which I pursue new avenues.

The nature of migraine symptoms contributes to my wavering dedication. Fatigue, lethargy and brain fog make research and phone calls difficult. Sometimes I’m too sick to keep appointments (I’ve canceled three in the last week alone). The accompanying emotional upheaval, including irritability, anxiety, and depression-like feelings, can cause the search for relief to feel fruitless.

So, ten years after a doctor first took my migraines seriously, I continue to search. Here’s what’s next on my plan of attack:

  • Diet: I’ve been following an extreme migraine diet for three weeks. In addition to avoiding tyramine and tannins, as I wrote about, I haven’t been eating any other suspected food chemicals, such as nitrates/nitrates, sulfites/sulfates, caffeine, phenylethylamine (in chocolate), MSG, and aspartame. I’ve noticed no improvement on the diet and my skepticism of food triggers remains. I’ve recently reread ACHE’s excellent article that questions the validity of food triggers and am going to reevaluate my plan.
  • Preventive medication: My headache specialist is sending me a prescription for Sibelium (flunarizine), which is a migraine preventive commonly used in Canada that doesn’t have FDA approval for use in the U.S. (presumably because the company doesn’t want to spend the money necessary to get approved). With side effects of weight gain, lethargy, and depression, I’ve been reluctant to try it. Having spent the vast majority of the last two months in a migraine, I finally decided that if it helps, the benefits to my mental health will outweigh the potential risk. I’m still nervous, though knowing I can just stop taking it (unlike the Botox, which I have to let wear off) gives me a helpful sense of control.
  • Platelets: I know so little about this that I’m a little reluctant to even mention it. Someone on the Migraine Research Foundation Facebook page said that her doctor told her of a patient whose migraines subsided when he donated platelets. I’ve also read anecdotal evidence of people’s migraine attacks stopping when they were on Plavix, a blood thinner. What I’ve learned is that some people have too many platelets, which can cause headaches, and also that platelets “tend to become sticky and release serotonin which is intimately involved in the migraine process.”

In the first draft of this post, which I wrote last week, I said, “I am tired. Tired of being sick, tired of having to claw my way out of bed every morning. I don’t feel depressed in the clinical sense, but being sick is wearing on me.” Since then, I’ve determined that I definitely was depressed, but I also had a migraine reprieve. Over the weekend, my pain reached the low of level 3 and I spent eight hours at a level 4. I was reminded that I don’t always have a horrendous headache and that I’m not always in a migraine attack. A little relief goes a long way in bolstering my spirits. Don’t worry, Mom, I’m once again happy and motivated!

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Botox Post on Migraine.com & Appointment Discoveries

Botox and the Superstitions of Chronic Illness is my first post on Migraine.com, which I’ve joined as a patient advocate. In the post, I describe the pros and cons of Botox and my decision to get the injections today.

I have just returned from the doctor’s office and do not have a horrendous migraine from the injections, which was one of my big worries. I had a migraine going in, so I took a Midrin about 30 minutes before the injections and a Maxalt melt right after. I hope I’ve circumvented the post-Botox migraine.

My headache specialist’s physician assistant did the injections today. He has chronic migraine that is completely under control with Botox. Before Botox, he took nortriptyline and still had one severe and two moderate migraines each week. Now he is migraine free as long as he gets Botox every six months. He has had a total of 28 rounds of injections and has been side effect-free. That’s some powerful anecdotal evidence.

The physician assistant said it takes between a week and a month to see if Botox is helpful for a patient, though most people see results by 10 days after the injection date. My fingers are crossed that I’m one of the lucky ones.

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Botox Doesn’t Relieve Migraines & Tension-Type Headaches?

A review of all available data on treating migraines and tension-type headaches with Botox indicates it is no better than a placebo, according to a US News & World Report article. The findings are included in guidelines for using Botox published in today’s issue of the journal Neurology.

Botox Works on Muscle Disorders But Not Migraines

[B]otulinum toxin has become an effective treatment for numerous movement disorders associated with excessive muscle contraction.

The new guidelines approve its use for treating cervical dystonia, a condition of involuntary head tilt or neck movement; involuntary facial contractions, involuntary eye closure, focal limb dystonias (such as writer’s cramp), essential tremor and some spastic bladder disorders. The drug is injected directly into affected muscles.

[non-contiguous paragraphs]

The finding that botulinum toxin probably does not help relieve migraine or chronic tension headaches surprised the researchers.

“Based on currently available data, botulinum toxin injections should not be offered to patients with episodic migraine and chronic tension-type headaches,” pain guidelines author Dr. Markus Naumann, head of the Department of Neurology at Augsburg Hospital in Germany, said in a prepared statement. “It is no better than placebo injections for these types of headache.”

I haven’t even found the abstract yet. I’ll let you know as soon as I learn more about this surprising report. If you know anything about it, please leave a comment below.