Deep Brain Stimulation is helping Chronic Cluster Patients

Deep Brain Stimulation (DBS) is a treatment that is showing great promise when it comes to treating cluster.  Unfortunately, many people know very little about it.

Deep Brain Stimulation for Cluster Headache

DBS is probably most well known as a treatment for Parkinson’s disease, though it’s used for a variety of conditions, including cluster headache.

Though much of the mechanism of cluster remains a mystery, we do know that the posterior hypothalamus is involved.  The posterior hypothalamus is part of the hypothalamus part of your brain, located just above the brain stem.  Like migraine, there is likely a complex web of reactions going on that impact cluster.  However, the posterior hypothalamus seems to be a key part of the process.

So what would happen if we could stimulate this part of the brain directly?

DBS uses a battery operated device known as a neurostimulator.  This small device is surgically implanted.  It’s then able to target the posterior hypothalamus and deliver electric stimulation.

The neurostimulator itself is not in contact with the target area.  Instead, a lead/electrode wire is placed in the target area.  Then an extension connects the lead to the neurostimulator itself.  Multiple leads may be implanted in target areas.

Once the system is in place, it can be adjusted without further surgery.

Who is this treatment for?  The best candidate for deep brain stimulation is someone with chronic cluster headache.  In fact, it’s been suggested that even stricter criteria be used: patients who are the best candidates are ones who have attacks almost every day.  Also, these patients are usually not helped by the standard drug treatments.

Recently, researchers have started investigating the uses of DBS in other parts of the brain, such as the midbrain tegmentum.  We may find that some patients respond better to stimulation in one area, and others improve with stimulation in another area.

The good and the bad of deep brain stimulation for cluster…

The good news is that the surgery is generally safe.  However, that does come with a word of caution.  It’s important to have an expert team perform the surgery – if possible, someone with experience with DBS for cluster, since there are unique challenges for cluster patients.  The patient needs to be monitored to avoid problems such as bleeding and infection and issues with wire placement.  Usually these are not major problems, and treatment can be continued.  But you do need an expert who knows how to deal with them.

It’s also important to realize that improvement is not immediate.  Usually several weeks of stimulation are required before there is a real change.

The other challenge with DBS is that it’s still relatively new.  Yes, we have about 10 years of experience using it for cluster.  But chronic cluster is so rare that we’re still only talking about a few dozen patients.  More studies need to be done to understand how best to use DBS.

DBS seems to help about 60% of chronic cluster patients.  The good news is that those 60% end up almost pain-free.  And this is without drugs, which means a lower overall cost as well.

For more details on the use of DBS for cluster, read:  Deep brain stimulation in trigeminal autonomic cephalalgias. (2010 overview)  and DEEP BRAIN STIMULATION TREATMENT FOR CLUSTER HEADACHE (more in-depth overview from 2005).

Also check out Cluster or Migraine: What’s the Difference?

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4 comments… add one
  • ClusterHeadTom Nov 21, 2013

    I was the 2nd in Canada and at the time 17th in world to have DBS done for cluster headaches. See my blog for info
    I am chronic for over 8 years and prior to surgery nothing worked.

  • I just surpased 1 year makr of my deep brain stimulation. I am #2 in Canada and 17th on planet at time of surgery to have DBS for CH.
    At present 10% improvement. Some would think I was nuts to have this done for 10%…if anyone has CH they know 1% is lots!
    God Bless anyone suffering.
    see my blog for updates

  • John Fletcher Jun 26, 2015

    Brilliant Tom!
    You have been and always will be a huge hero to me. So much respect and admiration at your courage, determination and bravery to endure all you have to battle this horrific disease. You inspire us all and your advocacy work is worldwide…Love you my brother, Don’t stop!…:)

  • ClusterHeadTom Jun 27, 2015

    Aftern2.5 years I turned the DBS off as no relief and did magic mushrooms.
    It was the only thing that ever gave me some relief.

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