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Nervely CH.com Junior Offline I Love CH.com! Posts: 25	Sphenopalantine ganglion Botox injection tomorrow Mar 12^th, 2015 at 6:30pm I also posted this on Busters... I'm having my SPG injected with Botox tomorrow morning at Stanford. I haven't seen many patient stories and I'm getting anxious... I'm nervous it will get worse.
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Nervely

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #1 - Mar 12^th, 2015 at 6:43pm

I should mention the lack info is regards to the spg getting the injection. I've had Botox around the temple before twice and both times it seems to have made them worse for a few days then about a month of headache free. Not sure that's just because of my cluster cycle or the Botox. I'd have no concerns about Botox around the temples and I think it's probably helpful.

My treatment tomorrow is more radical. The doc using untrasound to inject the Botox right into the SPG. This is what I'm worried about.

Thanks again,RR

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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #2 - Mar 12^th, 2015 at 6:49pm Hope it goes well for you and you get some relief. Let us know the results. Good luck. Maz.
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Nervely

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #3 - Mar 22^nd, 2015 at 4:27pm

Doc changed her mind away from Botox and used ropivicaine (local anesthetic) and prednisone. It's now a week later and am no better, probably a little worse.
Friday morning: got the injection, nothing different
Saturday: nothing different
Sunday: slightly worse than normal
Monday: awful. Awful. Started oral steroids
Tuesday: better than Monday but worse than normal
Wednesday: good day. My gut tells me it's the steroids kicking in but it's possible it was the spg treatment
Thursday - Saturday good days, last oral steroid Saturday
Sunday: typical headaches

Overall I'd guess the SPG injection made things worse for the first week. They say this is possible and then it gets better. All I know is it's been nine days and I'm in bed at the moment with a mild headache.

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CDog CH.com Veteran Offline Posts: 163 Rockies Gender:	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #4 - Mar 23^rd, 2015 at 6:22pm I have had two SPG blocks, both made the headaches worse for 7-10 days and then went back to my normal pain level...
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canvasfactory CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #5 - Apr 7^th, 2015 at 2:23am maybe it will goes well,hope you can make it
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Herry Braun CH.com Newbie Offline I Love CH.com! Posts: 1 36 Call Lane Gender:	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #6 - Aug 19^th, 2015 at 10:11am Hey, There is no need to take worry about botox injections only needs to use services of a reliable cosmetic company. If you are near to Leeds, West Yorkshire then I would recommend you take services of leading Aesthetics company Call Lane Aesthetics .
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Mark Olson CH.com Veteran Offline I Love CH.com! Posts: 142 San Jose, CA Gender:	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #7 - Aug 19^th, 2015 at 6:08pm Who's your Stanford Doc? I just fired my old neurologist and went with Sheena Aurora up at the Headache Clinic and I like her a lot. Not sure I'd want a cosmetics company doing a nerve injection...
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jon019

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #8 - Aug 19^th, 2015 at 7:45pm

Mark Olson wrote on Aug 19^th, 2015 at 6:08pm:

Who's your Stanford Doc? I just fired my old neurologist and went with Sheena Aurora up at the Headache Clinic and I like her a lot.

She was formerly at the Swedish Headache clinic here in Seattle. The first time I visited and described my symptoms she sucked her breath in alarm and said "I treat this condition very aggressively"...I almost cried. No doc before had ever gotten it...she knows CH...she is good.

Not sure I'd want a cosmetics company doing a nerve injection...

I'll boy-howdy! that one...

Jon

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Mark Olson CH.com Veteran Offline I Love CH.com! Posts: 142 San Jose, CA Gender:	Re: Sphenopalantine ganglion Botox injection tomorrow Reply #9 - Aug 20^th, 2015 at 2:07am She told me she had moved down from Seattle. Good to hear you think she's good.
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BarbaraD

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #10 - Aug 20^th, 2015 at 8:34am

I get Botox injections but for chronic migraines... never did anything for my CH.. D3 has done wonders for the CH.. since I started on it I haven't been hit in almost two years (Oct will be two years). Have you tried that? Check with Batch for the dose on that one.. It's working great for so many of us. Kiss

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What don't kill ya, Makes ya stronger!

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Aeryklaca

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #11 - Nov 25^th, 2015 at 11:56pm

Been suffering nonstop for three years with 4 - 10 a day. Longest remission has only been about 2 to 3 days only three times during the last three years. I've been through every drug therapy and did not tolerate meds and they did not work. Triptans work, and O2, to abort, but can't do them so many times a day, so I'm pretty much home-bound. Went through SPG block - with no result. CGRP antibody treatment (as part of a clinical trial) has no effect. The only thing that has helped recently (3 days with only a few small, easily aborted (O2 only) CHs), was getting back extreme cross-fit training 3 to 4 times a week, 2000 IU D3, 3 times a day, 10mg melatonin a few hours after the sun goes down, and another 10mg just before bed, with one low dose Xanax. Honestly, this is the best I've felt in a long time. Who know if it will last, as I seem to rapidly equilibrate on any regime and CHs come again...but I'm hopeful this time.

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« Last Edit: Nov 26^th, 2015 at 12:00am by Aeryklaca »

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AussieBrian

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Re: Sphenopalantine ganglion Botox injection tomorrow
Reply #12 - Nov 26^th, 2015 at 2:05am

G'day Aeryklaca, welcome aboard, and all headaches are horrible so you're in the right place to talk about it. Especially if you're getting hit so many times each day.

Consider going to our Gettin' to Know Ya board and telling us about the headaches you get. How often, how bad, how long each one lasts, what doctors you've seen and what they've recommended.

We may be able to help a little with suggestions, perhaps things you haven't tried or better ways with things you have.

Only good days are ahead and we look forward to hearing from you again.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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