Sphenopalantine ganglion Botox injection tomorrow

[robertr]

I'm having the pain doc at Stanford inject Botox into my sphenopalantine ganglion tomorrow. I'm nervous and this doesn't seem common and there's little on the net about patient experiences. Btw, local anesthetic applied topically at the spg helps.

Thanks,

Robert

[Bejeeber]

Sorry I don't know anything about Botox injections in the Sphenopalantine ganglion. It does sound hopeful to me though that the topical anesthetic at the SPG had some good effect.

The most closely related discussion I've seen here that I can recall at the moment is on the subject of the occipital facet Botox injections Dan/Hipshot received from a pain doc with some success:

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/0

Best of luck to ya tomorrow robertr.

[cluster]

There was a study recently completed in Trondheim, Norway:

"Endoscopic Block of the Sphenopalatine Ganglion With Botulinum Toxin in Intractable Cluster Headache"

https://clinicaltrials.gov/ct2/show/NCT02019017

... but no results published yet.

[robertr]

It's been over a week and nothing compelling, other than things getting worse and me starting oral steroids. If anything changes I'll let y'all know

[spiny]

Really sorry to hear that robertr.  I take it that it is supposed to kick in quickly and hasn't? It bites that you are still suffering.

[Pixie-elf]

Sometimes it takes the second round of botox for it to kick in, unfortunately.

I know for me, the first week and a half I am in fucking HELL after my injections. Like, I am miserable as fuck. Then it kicks in, my face freezes, and I'm a lot better.

[CHfather]

Yer makin' an old man cry here, Mystina.  I am so completely thrilled to see you!!!!!

[Pixie-elf]

Yer makin' an old man cry here, Mystina.  I am so completely thrilled to see you!!!!!

Don't cry! I've just been busy and slightly paranoid! I'm glad to see you too, how's your Daughter doing?!

[CHfather]

Thanks.  Good days and not-so-good ones for the kid.  I'm about to post a question in that regard.

[robertr]

Pixie Elf,

Where do they inject the Botox? Like on your temples or up yer nose?

[Pixie-elf]

Pixie Elf,

Where do they inject the Botox? Like on your temples or up yer nose?

I actually get it all around my head, Like, my temples, around my ears, the back of my head, and in my neck. I still get hit but it's much milder, and it's something I can actually sleep through. Before the botox, I was waking up at 3:43am, every day with a screamer. Once my forehead froze and I became one of the alien people, that pretty much stopped and I sleep through the night.

I still wake up every once in a while with a hit, but for the most part, I don't notice it. If I'm awake and have it, I can abort it with an energy drink, or just flat out ignore it. Sometimes it's a bit worse. I've also used the 5-meo-DALT on top of it, and if I could remember to stay on top of dosing with it, it plus the botox would probably knock my hits out completely.

After my next shunt adjustment in April, or possibly once things settle down from it in May, I'll be testing out the DALT again to see how I do with it.

Edited to add: Also, I have Occipital Neuralgia, and Trigeminal Neuralgia. So this pretty much makes it all calm the fuck down.

I also always have a severe flare up anytime I get a upper respiratory infection. I've had one for a week now. No flare up. At this point, I'm just thankful something works until I can grow my own again.

[didgens]

I have now read several accounts of injections into the forehead or plastic surgery in that area reliving the pain. interesting.