cluster headache

9 March 2023

Cluster Headache Research in the USA – Get involved!

Clinical trials and professional surveys for cluster headache patients are not very common, so when I was contacted about these two trials I wanted to make sure I shared them with you. Both trials are in for cluster patients in the USA. Both are being led by Dr. Mark Burish through the University of Texas Health Science Center at Houston.

By the way, we’ve talked about Dr. Burish before – check out Cluster Headache: Years with no Diagnosis?

Cluster Headache Impact Questionnaire

We all know that cluster headache results in serious disability, but measuring that disability is a challenge. This study will evaluate a tool that could help researchers and doctors better understand and to some extent measure cluster disability. It also helps when it comes to getting insurance and funding for cluster headache treatment and research.

Patients can be anywhere in the USA because they complete the survey (actually, three surveys over a period of three months) online. It’s open to “people with cluster headache (either now or in the past)”. You can go directly to the consent form here:

Cluster Headache Impact Questionnaire Consent Form

Vitamin D and Cluster Headache

I’m told that this is currently the only non-pharmaceutical clinical trial for cluster in the USA. It’s a six-week study of high-dose vitamin D3 for the prevention of cluster attacks. The trial is for patients currently in their cluster cycle, however they may sign up at any time and begin when their cycle begins. It’s important to know that you should be able to continue with your current treatments during this trial.

You do need to call or email to enroll. Further details of who can enroll, as well as all contact information, can be found here:

High Dose Vitamin D Plus Multivitamin in the Prevention of Cluster Headache

23 January 2023

Is Cluster Headache a type of Migraine?

James Information 0

In its clinical description, there’s no doubt that the symptoms of cluster headache are quite different from migraine. There has been some confusion in the past (such as the unfortunate term “cluster migraine“), but we’ve talked more than once about the differences.

For a quick primer, check out this migraine-cluster headache infographic. For more detailed similarities and differences, go to Cluster or Migraine: What’s the Difference?

All that being said, “migraine” is not one thing either. There are many different types of migraine with different symptoms, and in some cases with different treatments. Since we’re still learning about what causes the migraine chain reaction, and what really causes cluster headache, the question arises – is there actually a similar cause? Is this one disease that manifests itself in different ways? If so, although treatment options are quite different now, might there be some future treatments that address both?

The debate was opened up again late last year in The Journal of Headache and Pain, in a review with the appropriate title, “Debate: Are cluster headache and migraine distinct headache disorders?“

The article discusses some of the challenges when it comes to making a hard-and-fast decision. There are certainly a lot of similarities, but also a lot of differences. There is no symptom that only appears in migraine and cluster and nothing else (it would be easier if you knew that, as soon as your nose turns purple, it’s either cluster or migraine). Should we look more at treatments – diagnosing based on which treatments work? This is fraught with complications as well.

The authors give us a helpful summary, so here’s a summary of the summary. Yes, cluster and migraine share not only some symptoms during the attack, but also symptoms in-between attacks (such as visual hypersensitivity – being sensitive to bright light between attacks, for example). There are also genetic similarities, similarities in demographics (what “kinds” of people get migraine or cluster), and similarities in certain triggers (they’re basically talking about triggers in a lab – give Joe this drug, it will trigger a cluster attack. Give JoAnn the same drug, it will also trigger an attack).

But these are overlapping similarities. There are some genetic features the same, and some different. There are some symptoms the same, and some different. Cluster is also triggered “more quickly” – telling us that perhaps the “chain reaction” that leads to the symptoms is different for each.

So basically, we need to know more about each. For the time being, we still look at what has “worked best”, we still recognize that everyone is an individual and so needs individual treatment. But we do encourage further discussion and research, because the more we understand, the better treatments can become.

If you’d like to get deeper into the topic, check out this actual video debate between Dr. Anja S. Petersen and Dr. Kuan-Po Peng. They talk not only about the scientific evidence, but also the practical implications of a more or less marked divide between the two.

21 December 2022

Cluster Headache Patients: Watch Out for Related Issues

James Discoveries & Stats 0

It’s no surprise that cluster headache has a major impact on life, leading to significant disability, sick days, loss of productivity and family time. But what is less known is that cluster is also connected to other diseases that can make life challenges even greater.

A study out of Sweden, published this month in Neurology, looked at the common types of diseases and conditions that tended to go along with cluster headache.

What we’re talking about here are “comorbidities”, that is, diseases and conditions that tend to go together. The term makes no comment on what caused what – did one cause the other? Are they the result of a common root? Is the treatment for one triggering the other? Or were more issues diagnosed because the patient was already seeing a specialist (e.g. a neurologist)? Those are separate questions.

For cluster patients, the most common comorbidities were neurological. In fact, they were diagnosed with far more neurological conditions than the reference group. That would include things like migraine, and depression.

Other types of conditions that tend to be more common in cluster headache patients include:

Eye diseases
Respiratory
Gastrointestinal
Musculoskeletal systems and connective tissue

On the positive side, there are some areas of disease that are less likely in cluster patients, such as:

Blood and immune system
Endocrine and metabolic
Pregnancy/childbirth related
Cardiovascular (from previous studies)
Diabetes (previous studies)

However, when cardiovascular conditions do go along with cluster, they tend to significantly increase disability.

Also, the study gives an important reminder. Although cluster is much more common in men, it does attack women, and can lead to even more disability and comorbid conditions in them.

So what is the value of knowing this information? Is there anything you can do about it?

First of all, because one may cause or trigger the other, it is important to be aware of and treat both (or all) conditions. Because resolving one may help resolve the other.

Second, sometimes other conditions can be ignored because of the incredible pain of cluster headache. The patient may not be thinking about other conditions, or the doctor may not think to ask (especially if it is outside their area of specialty).

Third, some treatments may be preferred, or avoided, once a diagnosis of comorbid conditions is made. Maybe there is a treatment that could make the other condition(s) worse, or a treatment that could help both.

So if you are suffering from cluster, do be aware of some of the most common other conditions to look for. A more in-depth eye check-up, a closer look at stomach problems, and so on, could resolve a lot of symptoms.

For more, including information about economic/work-related issues, see the full study: Multimorbidity and Sickness Absence/Disability Pension in Cluster Headache Patients and Matched References: A Swedish Register-Based Study

3 February 2022

What’s New With Galcanezumab (Emgality)? (You Might Qualify For These Trials)

James Medications, News 0

Emgality, also known as galcanezumab, is a CGRP inhibitor for both migraine and cluster headache, is the subject of a lot of study right now, and you may qualify to be involved.

For migraine, galcanezumab is taken once a month, as a preventative. For cluster headache, it is also taken once a month at the start of and during a cluster period. Although most people aren’t fans of injections, the fact that injections are so far apart is certainly a selling point.

But now galcanezumab is being tested for other conditions. Most notably, vestibular migraine, small fiber neuropathy, and fibromyalgia.

The vestibular migraine study is a study in the USA for adults with vestibular migraine or probably vestibular migraine. You can check out the details and see if you qualify here: Galcanezumab for Vestibular Migraine

The second study covers both small fiber neuropathy and fibromyalgia, and is also in the USA. Find out if you qualify here: Anti-CGRP for Inflamation and Pain Modulation in Small Fiber Neuropathy/Fibromyalgia

Researchers also continue to investigate the general function of galcanezumab, including further studies to see how it works with migraine. Other general studies you may qualify for include:

Novel Insight Into Migraine Pathophysiolgy and Galcanezumab Mechanisms of Action (looking for adults with migraine)
A Study of Galcanezumab (LY2951742) in Adult Participants With Episodic Migraine (CHALLENGE-MIG) (adults with migraine)

There are also a couple of studies happening for teens and children:

For more information on Emgality in general, as well as savings programs, visit their official US site here. For Canadian patients, a pdf summary here. England, Scotland and Wales information here.

25 January 2022

Cluster Headache: Years with no Diagnosis?

James Discoveries & Stats 0

If you have cluster headache, how many years was it before you were diagnosed? Leave a comment.

A recent study in the USA reported the results of a questionnaire sent to 1604 participants with cluster. Almost 28% reported that they had had cluster episodes since childhood!

So then, how many of those patients were diagnosed as children? The results show that only about 15% were diagnosed before the age of 18. That’s right – almost 85% of patients with cluster headache went undiagnosed as children/teens (up to 18). But – why?

Study leader Dr. Mark Burish has some theories. ScienceDaily reports:

While the reasons behind this trend remain unknown, Burish has come up with several theories based on conversations with pediatric neurologists, patients, and their parents. Family members and doctors are not recognizing it because it is rare, and patients are not being referred to the appropriate specialists. Also, features of cluster headache in children could be different than they are in adults, considering that there are small differences between children and adults in other headaches like migraine.
New findings about cluster headaches (ScienceDaily)

The study did show a somewhat higher rate of family history with cluster than some other studies. In other words, patients with cluster who also had family members with cluster. Also, patients with a family history of cluster headache may have a different progression of the condition. Dr. Burish notes:

Cluster headache seems to start at a younger age in patients with a family history of cluster headache, compared to an older age in patients without a family history. In genetics, this is called ‘anticipation,’ which suggests there may be a gene or genes involved. Identifying those genes could be a huge breakthrough for cluster headache.
Dr. Mark Burish

For more information, check out the study here: Cluster headache epidemiology including pediatric onset, sex, and ICHD criteria: Results from the International Cluster Headache Questionnaire