Cluster Migraines: 1000 Out Of Ten On The Pain Scale

Written and verified by Holly Hazen

The technical classification is not cluster migraines... it's cluster headache. (ichd)

This type of headache is not called suicide headache for nothing. It's violent, intensely painful and the symptoms include agitation and self-harm. "One person on average per month, is ending their life due to cluster headaches." _[4]

What type of headache can disappear for a few months, or years and then hit hard and fast? This one can.

The term cluster headache refers to a type of headache that comes in groups. It is not a cluster of headaches – it’s a distinct event of a number of headache episodes. For up to 90% of cluster patients – and the reason they coined the term cluster is - the cluster is over weeks or months when you are vulnerable to repeated attacks – after which you get no attacks. _[5]

You might experience one to three (or more) headaches per day over a period of a couple of weeks, up to three months continuously with no break. They may come and go... or they may never go.

They could completely disappear or go into remission for months or even years and then start to recur. And then you become engulfed by an intermittent world of intense, unbearable, pain and symptoms... again.

Cluster headaches are not common, therefore they fall into a place with few specialists. And they affect more men than women by three to one. 

3 Males: 1 Female

These patterns are not seen in the general migraine population. 

What Do Migraines and Cluster Headaches Have in Common?

There are many experts that believe migraines and cluster headaches have a common cause that begins in the trigeminal nerve which carries the feeling of sensation from the head to the brain.

Migraines usually stem from a chemical reaction causing a nerve storm and then blood vessels to spasm in the head. They typically last from 4 - 72 hours. 

Migraine pain can range anywhere from mild to severe and is typically located on one side of the head, the back of the neck and or around the face and eyes. Symptoms accompanying classic migraine types can include such things as nausea, vomiting; sensitivity to light, sound, or smell; stuffy nose, watery eyes; dizziness and visual disturbances.

Cluster headaches start in the brain (activated nerves in the face and head) and involve the vascular system. They appear in cycles. They're uniform and therefore somewhat predictable. _[5]

The pain is so severe that they have been called suicide headaches. The pain with cluster headaches is usually on one side of the face and can be accompanied by nasal congestion, watery eyes, and a runny nose.

Cluster headaches normally come on faster and leave quicker than a classical migraine.

The similarities which link the migraine and the cluster headaches, include the one sided pain and the congestion.

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What they do not have in common...

What Cluster Headaches Have That Migraines Do Not

*These are some of the common autonomic symptoms of cluster headache. Others are: pupil constriction, conjunctival redness, runny nose... on one side of the head.

** They occur at the same time every night, or every day like clock work. They last exactly so many minutes. You can count the minutes they last once you establish your pattern. They are predictable. 

Symptoms like: one sided tearing and swollen eye, and a runny nose can also accompany migraine. The pain can be intense in both migraines and cluster headache.

You Never Get Just One

If you are having cluster headaches / cluster migraines, then I'm sad to say, you will not have just one attack.

You will have several in a series of headaches and you will have them on a regular basis.

There are some sufferers of cluster headaches that do not have any periods of remission, having a continuous series of these disturbing symptoms and relentless pain .

Episodes of repeated vulnerability where one gets repeated attacks is called episodic. Technically defined – if you’ve not had a break of at least 3 months in the last 12 months you are considered to be chronic. _[5]

With cluster migraines you really need to sort out a pain management strategy with your doctor as soon as you can. They might also recommend getting some extra emotional support from a professional pain counselor.

I encourage you to learn new coping skills and find new ways to manage with this chronic condition in your life.

Here are 3 suggestions:

• Professional Migraine Support

• OUCH UK has a help line 

• Cluster Busters Org - USA
  
  

5 Ways To Treat Cluster Migraines

There are medications that can be prescribed for cluster migraines, but they have been limited in their success. Pills are not effective as they take 2 hours to work. The most effective abortive found to date is Sumatriptan injection which should reliably abort an attack in 10 to 15 minutes. _[5]

Dr. Brian McGeeney suggests using other prophylactic agents to knock yourself out of cycle. There's not a great evidence base for this but there's good evidence (and it's off label - not what FDA approved it for) for Zolmitriptan nasal spray – 5 mgs typical dose or 10 mgs of two. This has good evidence based results showing that it does work. One or two of these sprays should abort an attack. _[5]

Here is a great PDF you can print out about cluster treatment and medications. 

If you are right in the middle of the headache, one of the best treatments is in the prescribing of pure oxygen for you to breathe. This has shown to be effective approximately 70% of the time. 

Dr. Brian McGeeney prescribes 100% high flow oxygen with a non-rebreather mask NOT via a nasal cannula. This should also abort in 10-15 minutes for a great majority of sufferers. _[5]

If treatment is not successful with oxygen therapy, you can consider having Botox injections and there is a surgery available that will get rid of the nerve itself. Or nerves.

There is risk with the surgery, but some people feel it is worth the risk because of the severity of the pain and the destruction that brings with it.

The gammaCore (electroCore LLC) device marks the first release of a hand-held, neck-applied device for this headache type.
 
"The FDA release of gammaCore is an important advance in the treatment of the pain associated with cluster headache," Stephen Silberstein, MD, director of the Headache Center at Jefferson University, Philadelphia, Pennsylvania, said in the company statement.

The device "does not have the side effects or dose limitations of commonly prescribed treatments or the need for invasive implantation procedures, which can be inconvenient, costly, and high-risk," added Dr Silberstein. _[3]

So that's: Sumatriptan injectable medication, 100% high flow oxygen therapy with a non-rebreather mask, Botox, surgery, and the gammaCore device.

As a preventative measure with cluster migraines, some sufferers are also finding relief from taking: Melatonin (9 mgs) at night to help with sleep and high dose vitamin D (10,000 units per day) but talk to your doctor about these. _[5]

I've written more about natural options here - Cluster Migraine Symptoms: What You Need To Know. 

Stay connected... 

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How to be more migraine savvy right now...

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Cluster Migraines References and Important links:
1. Clusterbusters.org
2. The International Classification of Headache Disorders 3rd edition (2016) Available [Online] at: https://www.ichd-3.org/
3. MedScape (Apr. 18, 2017) FDA Approves Vagus Nerve Stimulation Device for Cluster Headache. Available [Online] at: http://www.medscape.com/viewarticle/878763
4. Bruce, Scott (2018) Migraine World Summit. Available [online] at: https://www.migrainesavvy.com/migraine-world-summit.html
5. McGeeney, Brian E. MD, MPH, MBA (2019) Alternative Treatments for Cluster Headache. Available [online] at: https://www.migrainesavvy.com/summit

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