Cluster Headaches, and/or "Sluder's Neuralgia?"

[Chris Parente]

Greetings from the "Mile High" here in Denver!

I was diagnosed with CH about 15 years ago.  In that time, I've found quite a bit of relief with "traditional" methods (verapamil, steroids, melatonin, etc).  Usually my cycles are limited to 1-2 times a year, 4 weeks per cycle.

But in recent years, I've noticed a more pronounced connection between my headaches ... and my *nose.*  Instead of a sudden onset of pain, following those "set your watch by it" cycles ... It's more of a lingering "on the edge" of a CH pain, that is always sourced to my left nasal cavity.  It feels as if there's a nerve being triggered every time I breathe in.  Sometimes that pain will advance to a full "attack," other times it's just an all day "on the edge" feeling.   

I mentioned this to my Neurologist, and then went to an ENT Doctor, who right away asked about "Sluder's Neuralgia."  I've since had septopasty for a severely deviated septum.  Not sure if this might help.  

I'm just wondering if anyone else has experience pain and CH that are triggered *in the nose* and what your experience/treatment/outcomes were?

BTW, I'm also a morning news anchor out here in Denver, and had a GREAT time showcasing the work of Cluster Busters for an on air segment!

 

Thoughts, advice, comments?

 

Cheers,

Chris Parente

 

[BoscoPiko]

I remember the segment! You did great. It was of course shared here on the site. I can't say that any of my experiences have included anything with the nasal passage but it does remind me of a recent post on here about another condition called Charlin Syndrome?

[FunTimes]

In the winter time I sometimes can trigger myself breathing cold air in through my nose. Makes no sense because in the summer breathing in cold also helps abort a cluster.. AHHH, the life of a clusterhead!

Stuffy and or runny nose is also a common side effect of an attack 

[JenniferS]

Hello, I know your post is of last year but when I stumbled upon it I had to reply. What you are experiencing and writing her is exactly the same for me. Expect for it is all on my right side. The sharp pain when I breathe in is extremely painful, on days or times where the pain is low I still mildly feel it. I feel when the nose pain is at its worst is when my cluster headaches come on. I actually just got back from the er from a severe attack. I’ve been in pain for almost 1.5 months since after a bad flu/virus.  
 

Last week I saw an ENT that diagnosed me with a deviated septum and swollen turbinates of the right side. He also diagnosed me with Sluders syndrome. I have had smaller attacks in the past going back as far as 2018. I was told I need surgery for my nose. Can I ask how you are doing now? Did the surgery help with your pain at all? 
 

Thank you, Jennifer 

[xBoss]

On 8/21/2024 at 12:24 PM, FunTimes said:

In the winter time I sometimes can trigger myself breathing cold air in through my nose. Makes no sense because in the summer breathing in cold also helps abort a cluster.. AHHH, the life of a clusterhead!

Stuffy and or runny nose is also a common side effect of an attack 

Do you also get mega brain freeze like I do? I'm so sensitive to that, it feels like a cluster headache for like 20 seconds sometimes when I get brain freeze. Pretty sure most people don't feel brain freeze like that!