I'm in day four of a bad cluster so I'm a bit dower. I've gone through the imitrex, prednisone, verapamil, oxygen, intranasaal lidocaine, and opioids over the last few days and I'm a bit better but still clinging by the hair of an onion.

Nice to meet you, I'm Robert, 43, from The Bay Area, CA.

My episodes last for hours, with usually an hour or two in between, and they never wake me up. They're sometimes severe enough that I'm frantically rubbing my head and crawling around, but usually I'm just fetal position in bed squirming a bit. The pain is a lot like an ice cream headache.

Does this sound like Cluster? I was diagnosed in January (9 months ago) after suffering for two years and getting several sinus surgeries. I'm not convinced it's cluster since the typical meds for that don't really help much, except prednisone which is great after a couple days.

I think there's a nerve in the back of my nose that is damaged and that sets off the headache cycle.

Feeling mostly hopeless. Wish I had a giant syringe of morphine that I could stick up nose and poke directly into my brain.

Should I try mushrooms? I did that once a long time ago in high school. Where's a decent source of info for the naive suburban dad on this?

Thanks all, and nice to meet you.

Hey Nervely,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way...

Were you having the same type of headache symptoms when you were diagnosed with cluster headache?

Did your neurologist explain how to use oxygen therapy to abort your cluster headaches?

If you still have oxygen therapy available, you can find the most effective method at the following link at post #5:

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I suspect you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your cluster headaches...

See your PCP/GP for the 25(OH)D lab test.  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL and so far, all the CH'ers who have gone in for this lab test with active CH before starting the anti-inflammatory regimen have had their results come back deficient, i.e., a 25(OH)D serum concentration below 30 ng/mL.

The surprising news is 85% of CH'ers who have taken the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 for at least 30 days, experience a significant (>75%) reduction in the frequency, severity and duration of their CH...  60% experience a lasting pain free response.

You can read about the anti-inflammatory regimen at the following links:

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Take care and please keep us posted

V/R, Batch

Wow! I am honored that you replied to my thread.  I've been reading your work and thank you!  I started your regimen a couple of days ago and that I night I slept well.  There is no doubt in my mind at all that I suffer from an inflammation disorder that is compressing a nerve at the back of my nose.

I think it's called the sphenopalantine ganglion and it's attached to the trigeminal nerve.  I'd love to rip that little nerve out all together.

I'm just exhausted after two and half years of alternating between misery and misery, with the brief interlude of normalcy.  I just went back and read the last year of my journal and am wondering why I've put up with and not euthenized myself.  If my dog were going through that would be the humane approach.  I can't off myself because I have a loving family and they would be devastated, and I'd never do that to them.

My pain doc has prescribed me opiods and they don't take away the pain but they allow me to not care that I'm in pain.  The problem is tapering off when the cluster subsides is like the nightmare scene in trainspotting.

I just wish I had a giant syringe of morphine and ativan, with a six inch needle:
Spray some afrin in my left nostril becuase it's plugged,
After it opens up I'd carefully slide it up my left nostril, pass the ostia of the sphenoid sinus
Gently advance it though the very thin layer of bone that shields the brain
Release the morphine and ativan straight on in.
Sit back and probably never wake up.

I don't have any of the normal structures in my nose because theyve been removed from all the surgery.

Hey Nervely,

Neurogenic inflammation is part of the cluster headache syndrome.  There's a lot of chicken and egg or horse and cart arguments among the experts as to its etiology or where it fits in the pathogenesis of a cluster headache attack. 

What we do know is neurogenic inflammation is directly associated with elevated serum concentrations of calcitonin gene-related peptide (CGRP), Substance P, neurokinin A (NKA), and endothelin-3 (ET-3). 

CGRP concentrations released from the trigeminal ganglia are highest during the pain phase of both cluster and migraine headaches.  Not surprisingly, a magnesium deficiency is also linked to neurogenic inflammation

You've an impressive knowledge of the skull anatomy.  Did they leave your sphenopalantine ganglia intact?

If so, give Simple Saline a try...  Flushing the sphenopalantine ganglia with Simple Saline can help reduce the stinging or feeling of pressure in the back of the nasal cavity.

Other than that, have you started the vitamin D3 loading schedule?  Elevating your serum 25(OH)D rapidly into the green zone (60 to 110 ng/mL) is the fastest way of obtaining a pain free response.

Take care and please keep us posted.

V/R, Batch

I'm on the D regimen, day three. I'm following the instructions exactly. I've also added quercetin/ bromelian.

I'm pretty sure it's the sphenopalantine ganglion. I made an applicator that delivers 5% lidocaine gel to the back of my nose, about six inches back. Takes about fifteen minutes for it to kick in but relief lasts only an hour. It's profound relief, taking 80% away from the pain. But I think there are rebound issues and I think it ultimately increases inflammation back there.

I'm contemplating mushrooms. I don't know to start the research though. Does anyone have tips on where to look and what to avoid?

Thanks,
Robert

G'day Rob. Left side of your screen is a set of buttons and the bottom one is Clusterbusters. This'll give you lots of information about the mushroom alternative.

When it comes to headaches, knowledge is power!