Anyone have Cluster headaches? What helps?

@eric486 - just letting you know I moved your post here to where you can interact with others talking about cluster headache, who may be familar with that condition and also Sluder's neuralgia:

- Anyone have Cluster headaches? What helps?https://connect.mayoclinic.org/discussion/cluster-headaches-1/

I'm sorry to hear that the radiofrequency ablation of the sphenopalatine ganglion did not produce the desired results.

Fellow members such as @brighton022 @clusterman @tuscanutah5 @theirishfolk and others can offer their thoughts from their own experiences with cluster headache on whether that diagnosis might need reconsideration.

Has she had more attacks in the last week? What does her provider suggest she do next to alleviate any attacks?

@clusterman - I'm hoping members such as @tuscanutah5 @brighton022 @theirishfolk and others will offer any thoughts on the biologics you've taken and your sepsis, plus comment on any therapies that have helped their cluster headaches.

@clusterman - welcome to Mayo Clinic Connect. I'm sorry to hear you got 7 years of relief from cluster headache and now they are back.

I moved your post here so that you could interact with others talking about cluster headache:

- Anyone have Cluster headaches? What helps? https://connect.mayoclinic.org/discussion/cluster-headaches-1/

Cluster headache cycle has returned from a seven year absence. Hitting at 4 am every day for the past 2 weeks. Stocked up my Maxalt supply from the last cycle, so luckily I have those to save me. I thought they'd never return, I was wrong. Buckle up, last time they ran for 3 months.

Hi everyone,

I'm posting on behalf of a friend and would really appreciate any thoughts or similar experiences.

She is currently 25 years old, and her symptoms began when she was 21.

Her pattern is very consistent:
She develops a pain cluster every 6–8 months.
Each cluster lasts about 1–2 months.

During a cluster, she has attacks almost every night, usually waking her from sleep.

Each attack lasts several hours.
The pain is always on the same side.

During attacks, she develops red eye, tearing, and ptosis (drooping eyelid) on the affected side.
She does not usually have significant rhinorrhea, although autonomic symptoms are otherwise present.

Without pain medication, the pain continues for hours and becomes so severe that she develops whole-body sweating, tremors, and profound weakness.

She was diagnosed with Sluder's neuralgia (sphenopalatine neuralgia) and underwent radiofrequency ablation of the sphenopalatine ganglion. The procedure provided temporary relief, but unfortunately the attacks eventually returned.

We're now wondering whether this still sounds most consistent with Sluder's neuralgia, or whether another trigeminal autonomic cephalalgia (such as cluster headache) should be reconsidered.

Has anyone had a similar presentation or received a different diagnosis after further evaluation?

Thank you very much.

Hi @brighton022, and welcome to Mayo Clinic Connect.

Feeling like someone is living inside your head, making a deep cut on the right side of your head, sounds awful. So is feeling like you dread going to bed.

I moved your post here so you could chase with others in this existing discussion if what helps when cluster headache:

- Anyone have Cluster headaches? What helps?https://connect.mayoclinic.org/comment/1624656/edit/

If you are replying by email, click on VIEW & REPLY so that you will be brought to the new discussion. I suggest reading through and jumping in where you feel comfortable.

I hope you and your new neurologist can identify a medication that works well for you.

Are you most interested in medication others are taking for cluster headache, or lifestyle adjustments?

Have been having serious episodes of cluster headache since 2021.

The attack normally happens in the night a few hours after sleep or in the morning when I wake up. It's associated with a tearing and blocked nose.

The most excruciating pain that makes me act like child, pacing, throwing arms but nothing helps.

Feel like someone is living inside my head making a deep cut on the right side of my head. Moves from the top of the eye and stretches to the head and down to the neck. Had the worst experience of upto 3hours last night.

To be honest I dread going to bed now.

Have used Sumatriptan 50mg for 7days now and it has been helping. Was asked to not use it beyond 5days.

Met a neurologist yesterday and he gave me verapamil 40mg to be used along side prednisolone but the attack was beyond the usual and it extended to 3hours beyond the usual 30 to 1hour.

I am committing to go a journey with the Neurologist but I am also here to understand what this community can help with.

Thank you

@jennnels
I cannot even imagine - CAN'T EVEN IMAGINE having that totally debilitating intrusion into my life, and for so many years. For six years I was on the sumitriptan as I have written. I was limited to two injections in a 24 hour period. After two shots, if another CH one hit so bad I couldn't stand it, it was a trip to the ER, where they are required by law to treat you. It was a four drug cocktail, given IV. Worked fairly quickly. I was fortunate in that my insurance (UHC) covered it. Might be worth a call to your local hospital to see how they would treat you. (This is getting lengthy, but during my worst headache - the screaming kind - my wife drove me to the hospital and I, obviously in great pain, handed the first nurse I saw three things: drivers license, insurance card, and a paper that said "cluster headache: pain scale one to 10?: my answer 9) They took me right in.

Hi and thanks . . just got O2 - finally. Insurance wouldn't cover it because O2 is not a recognized "therapy" for CH.
Do you use on continuous flow setting (2L?) or in the "burst" setting (5L?) I am getting mixed messages from PCP an neurologist. Honestly, sometimes I think no one here has a clue what to do.
Also, nasal inihaler Sumitriptan excellent for me a few days a week, 3-4. But of course, there are the non med days (I had 27 headaches in May) and no doc has a clue what to do with those days. Am hoping that O2 will fill in the non-med gaps.

Medical oxygen works really well for me along with rizatriptan for pain control.i hire oxygen cylinders from boc gas here in Australia for around $18.00 per month.