Cluster headache patients know well the impact that cluster has on work and career. A recent study has brought that information to light for the public in general.
Using an online survey for patients in the EU, researchers asked work and career questions designed to compare those with episodic and chronic cluster headache with the general population. A quick look at the results shows that:
Chronic cluster patients were twice as likely to leave the workforce early (often through early retirement – the higher numbers indicating that in many cases it was a retirement due to cluster symptoms).
Chronic cluster patients were twice as likely to be unable to work – many being on permanent disability.
Cluster patients were more likely to lose their job at least once.
Cluster headache patients missed work about 15% of the time, more with chronic cluster and less with episodic cluster.
75% of patients said that cluster interfered with their career (the number rising to 90% if the cluster was chronic).
What have your experiences been like in the workplace? Do you receive any kind of financial compensation for disability? Share your experiences with us!
In 2016, the Centers for Disease Control and Prevention (CDC) in the USA implemented new guidelines for restrictions of opioid medications. Now, as the results of the restrictions are coming to light, the CDC is expressing concern that doctors may be taking the restrictions too far.
It’s not surprising that the media attention on opioids has led to a bit of an overreaction. Although the evidence generally does suggest that prescriptions of opioids could be cut down drastically, it’s also true that they’ve helped a lot of people. Prescribing them when they’re helpful, and not rushing to get people off them, are two important concerns.
Three of the original authors of the restrictions published an article in the New England Journal of Medicine explaining:
Unfortunately, some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations. A consensus panel has highlighted these inconsistencies,5 which include inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages, resulting in sudden opioid discontinuation or dismissal of patients from a physician’s practice. The panel also noted the potential for misapplication of the recommendations to populations outside the scope of the guideline.
Although it’s certainly important to encourage patients to change when there are better treatment options, even the changes need to be done wisely. Dr. Patrice A. Harris, President-elect of the AMA and chair of the AMA Opioid Task Force, pointed out that the guidelines have been “wrongly treated as hard-and-fast rules, leaving physicians unable to offer the best care for their patients.” (source How the CDC’s opioid prescribing guidance went astray)
In the midst of all the concern about opioid overuse and overdose, doctors need to remember to put their patients first, and take a long term view.
Migraine symptoms are sometimes “endured” for months or years without serious focus on treatment. Many people are being told that migraine is “normal” and that they just have to “put up with it” and “take an aspirin” (not that aspirin is always a bad idea).
Aggressive migraine treatment often requires hospitalization…
There are other patients who have tried many treatments, and are still, or now, experiencing several headaches a week, or almost constant migraine symptoms. And so “aggressive” treatments are finally tried.
One such aggressive treatment is used for children and teens as well as adults who haven’t responded to many of the most effective drug or even surgical treatments. It’s intravenous dihydroergotamine (DHE) therapy.
This is a serious, aggressive therapy because it generally involves hospitalization. Patients are given DHE every few hours (perhaps 3 times a day).
In spite of the positive results, one of the biggest drawbacks to this treatment is that full hospitalization is very expensive.
But trying to take the treatment to the next level, some specialists in Kansas City are using what they call the “Comprehensive Aggressive Migraine Protocol”, or CAMP. This is a 5 day treatment protocol for 11-18 year old patients. CAMP aims to make two major improvements:
This is “outpatient” treatment, so full hospitalization is not required.
Instead of full focus on DHE, the DHE treatment is combined with other treatments, such as massage therapy, relaxation training, and aromatherapy.
This type of treatment may not only save money, but also save on the extra stress of full hospitalization, as well as the possible stress of having the full focus on the intravenous DHE treatments. Also , it helps the patents take control of their condition by learning techniques that they can use at home in the months ahead. Finally, it brings a number of treatments together, which could mean better long-term success.
CAMP was the focus of a recent study, and here are the results
On average, headache intensity declined by 58% over 5 days of treatment (P<.01). Headache frequency decreased by a mean of 1.5 days per week (p=.01) through 3-month follow-up, with a 27% reduction in the proportion of patients reporting a continuous headache (p<.01). There also was an average reduction of 76% in school days missed per month (p<.01) and significant reductions in indices of healthcare utilization (healthcare provider calls and ED visits) (p<.01).
One statistic alone – the 76% decrease in missed school days – should get our attention. That’s pretty significant.
Sometimes migraine does require “aggressive” treatment. This study reminds us that there are times when we should consciously take time out of “normal life” to really focus on serious treatment, because the benefits for ourselves and those we love in the months and years ahead can be very significant.
Aggressive treatment may take many forms, and one way specialists can help is by giving options to migraine patients – protocols of well-researched and carefully planned treatments, that can break the cycle of migraine symptoms.
The Migraine Trust, headquartered in London, England, would like your help as they look to the future of advocacy and research for migraine patients.
If you live in the UK, don’t miss this opportunity. The new Chief Executive, Gus Baldwin, has published a letter introducing a public discussion that will be taking place in May and June of this year, through Facebook and Twitter. If you would prefer, you can also email Mr. Baldwin directly.
Mr. Baldwin was previously at the UK Faculty of Public Health as Director of Policy and Communications. He joined the Migraine Trust this spring.
1. We want to fund and encourage more migraine research 2. We want to provide more and better information and support services 3. We want to influence national policies and practice more effectively 4. We want to speak up more clearly on behalf of the migraine community and empower more people to speak up for themselves
But when it comes to the specifics of which research, what kind of information and support, which national policies, and how to speak up more clearly, we’re very keen to hear what you think.
Click through to join the Migraine Trust on Twitter and Facebook, or to send an email directly. Your messages can have a big impact in the direction of this important organization in the years ahead. Don’t miss this opportunity!
A retreat from migraine? Sounds great – but no, that’s not what this was. RetreatMigraine was a retreat held earlier this month by the Coalition for Headache and Migraine Patients (CHAMP).
200 people attended (not sure why it wasn’t 2000 – maybe they had a limit?). Here’s the purpose of the conference, from the CHAMP website:
RetreatMigraine is a conference led by and focused on people living with migraine disease. The retreat will provide support, community, disease and treatment education, advocacy training, and complementary therapy experiences.
The retreat, held in San Antonio, featured a host of doctors and advocates, provided workshops, and various special and fun events. It was relatively inexpensive, and even featured meals with “migraine-friendly” options (I think I would prefer the term “migraine-fighting!”).
Immediately some of you are thinking, “A retreat – great idea, but I would be sick the whole time!” Well, you might appreciate Sarah’s perspective. She went – and yes, she was sick the whole time. But she would go again in a heartbeat. See what she had to say here: My Experience at the first Retreat Migraine.
Many people will be hoping that there is another retreat next year. According to the article at CHAMP, many people especially appreciated the temporary tattoos – you can read about the thinking behind the graphic design here: RetreatMigraine: A Lasting Impression
