Curr Pain Headache Rep. 2010 Dec 15. [Epub ahead of print]

Cluster Headache with Aura.
Rozen TD.

Geisinger Specialty Clinic, MC 37-31, 1000 East Mountain Drive, Wilkes-Barre, PA, 18711, USA, tdrozmigraine@yahoo.com.

Abstract
Aura was not recognized as a clinical symptom of cluster headache until fairly recently, but studies now have indicated that upwards of 20% of patients with cluster headache may have aura, the same percentage of migraine sufferers who have aura. This paper looks at the epidemiology of cluster headache with aura, suggests possible roles of cortical spreading depression in cluster headache pathogenesis, and looks at the clinical/diagnostic implications of aura in cluster headache sufferers.

PMID: 21161447 [PubMed

I can tell you, after being dx'd a year ago, that I was one of my neuro's few patients that had aura. originally, I thought I was seeing a light flickering, until I started seeing it in a dark room at night. Thanks for posting.

I had aura one time, and it was one time during this cycle.  I woke from sleep and was smelling (out of my left nostril--side of my headaches) what smelled like I believe it is frankincense (that stuff it is so gross that a Catholic priest will walk around the church with on special occassions and it's in this thing and it releases lots of smoke).  Within seconds the headache came on.  And this smell was extremely distinct and it was almost as if the smell itself woke me up.

Sounds like an olfactory hallucination - 'something burning' is a common one, as is 'something chemically' or 'gasoline.'  But frankincense is wonderful, not gross. (Maybe the Catholic stuff is gross, but the Orthodox Christian and Anglican stuff is nice, IMO.)

I get bouts of aura (15-30 minutes, impossible to drive, read, or do anything that involves much vision), but they don't seem to be directly related to a cluster ... they can happen any time, usually when I am not in cycle. 

Monty, that sounds like you have a bit of ocular migraine thrown in the mix.  My wife gets that at times.  No pain, just can't see for a while.

Jerry

Yes, ocular migraine, aura, scintillating scotoma. An infrequent, minor bother compared to clusters.

monty wrote on Dec 18^th, 2010 at 11:30pm:

But frankincense is wonderful, not gross. (Maybe the Catholic stuff is gross, but the Orthodox Christian and Anglican stuff is nice, IMO.)

The most common form of incense used in "thuriples" is called Pontifical Incense, which may include some small amount of frankincense, and is actual hypoallergenic. Many people react badly though to just the thought of incense, its smell, or the small amount of smoke it puts out. I know one priest who swung an empty thurpile around, inducing coughing jags among congregants, only to show them there was nothing in the thuriple. Completely off topic, I know, but I couldn't help myself.

I have experienced pre-cluster symptoms that feels like a bee hive actively buzzing away at the bridge of my nose. When that happens, it always precedes a hit. It's aura-like, unless auras are relegated only to unusual sights and smells. Blessings. lance

Thanks Bob, another example of "nothing is the same" with CH, it's why I cringe when people are quick to dismiss a newby as a non CH'er because of a single disparity, whether it's vomiting, wanting to lay down, aura's etc. Caution is always the key.

Joe

That is weird about that study with the coughing after the placebo incense was swung around!  Last time I was in church a couple years ago at a friend's relative's funeral, I had to leave multiple times from coughing fits from the incense the priest was swinging around.  I could not stop coughing!  When I was a kid, the smell really bothered me, now not so much, just makes me cough.
The thing with feeling the beehive sensation--wouldn't that be a kind of tactile hallucination?  Sounds like aura to me--anything that warns you or precedes the headache in such a distinct or unusual way would qualify I would think.

Yeah, it is a sure signal for me. Again, I think these things have seizure like qualities. Including I feel postictal and all. Blessings. lance

Guiseppi wrote on Dec 21^st, 2010 at 9:41am:

Thanks Bob, another example of "nothing is the same" with CH, it's why I cringe when people are quick to dismiss a newby as a non CH'er because of a single disparity, whether it's vomiting, wanting to lay down, aura's etc. Caution is always the key. Joe

Yeah there are always going to be individual symptoms that don't "fit the mold".  I get nauseas with dry heaves at the peak of a hit, but I kind of welcome it because that means it's on the way out!

wimsey1 wrote on Dec 21^st, 2010 at 7:59am:

The most common form of incense used in "thuriples" is called Pontifical Incense, which may include some small amount of frankincense, and is actual hypoallergenic.

Wouldn't be surprised if it drives some people to the point of triggering ... perfumey, partly burned hydrocarbons can do that. Resin vapors can cause coughing, for sure.

In the Anglican and Episcopal tradition, pure frankincense is the norm ... as an acolyte, I would hold the censer chains and the priest would pour in frankincense resin granules on a hot charcoal bed, swing it a bit, and then hand it back.

Thank you for posting this information!

My neurologist is very knowledgeable about clusters and when I see him in the New Year I will be sure to ask him about this because when my cycle began I was swamped by auras.

I have a ‘soup’ of headaches it seems at the moment, at the beginning it seemed to be dominated by clusters (I haven’t had a cluster since end of August) but now my head is very ‘migraine’ like and I still have a constant throbbing pain. However, the debilitating bits (problems with vision, weak arms/legs) are so much worse than the pain which I am struggling with...which is why I haven’t posted much because I am not too sure what I have going on in my head! Am I still in a cluster cycle? Who knows!! Still trying to find out that one...

PFDAN all and happy holidays!! x

You are the first person I have heard gets weakness of the limbs on the side of the CH.  That is how I know it is on its way my left arm and shoulder goes achey and weak, my leg to a lesser degree. After CH I am left headachey though not acute but with the weak feeling on left side.  I put that feeling down to the Verapamil but not sure.  Can't persuade GP to get me 02 though I am trying hard.

Quote:

Can't persuade GP to get me 02 though I am trying hard.

Stop pi$$ing into the wind. Give it your best shot, but then move on to another doc if you must. He doesn't experience the pain - you do.

Print out the oxygen information, and print out my response, bring both to your doctor. Not giving oxygen to a CH patient is gross dereliction of duty by a physician. It is inexpensive, incredibly efficient, and fast. It has almost completely eliminated my use of imitrex. Ask once more, then change doctors. You're enduring so much pain, needlessly, by sticking with this stubborn, uneducated doctor.

Joe

Johnss24 wrote on Jan 6^th, 2011 at 9:33am:

You are the first person I have heard gets weakness of the limbs on the side of the CH.  That is how I know it is on its way my left arm and shoulder goes achey and weak, my leg to a lesser degree. After CH I am left headachey though not acute but with the weak feeling on left side.  I put that feeling down to the Verapamil but not sure.  Can't persuade GP to get me 02 though I am trying hard.

Like the others have said if you can't get Oxygen, change doctors! Oxygen is incredibly effective without nasty side-effects which other meds can give you.

Interesting to hear about your limbs going weak too (sorry to hear though, it isn't nice!) I have been told for the moment I have migraine-like and cluster-like headaches in the 'soup' which is my head, so I am not sure if those symptoms are from the cluster bit or migraine! I haven't been pain-free at all since July 2009, always in a migraine-like state.

Hope to hear you get that Oxygen!

x