Hipshot

AND My pain doctor, whos normal day consists of performing nerve blocks and stimulators from the minute he gets to work, to an hour after he closes : He shows my treatments as cervical stenosis. Neuralgia....and Etc Medicare always covers his treatments, but he doesnt treat me for clusters 8-) per se Most of his procedures are done using fluroscopy. My Botox treatment was to be done using fluroscopy in my VISION , but he did it right there in the room. No versed, o r other sedative was used. I must say, when he buried the needle at the base of my head I felt like he just stabbed the demon and I said fill that spot, that IS the sweet spot. I ALSO MY DOCTOR (Angel) " I'LL MAKE YA FAMOUS!?

Thank you everyone Merolamar, that's the kind of response that makes me really proud. I didn't expect a thanks from anyone. Everybody does their part. I continue to get "thank you"s" from all over the world. It was filmed 3-2011 Freester, I will be delighted to get the procedure put in doctor language and get back with you. If I could figure out how to post a pic that is on my phone to this forum, Lee Ann took a pic of the band aids. I will get her to figure it out and I will post it. If you look at a neck: one big shot at the very bottom, where the lumbar and cervical meet. One big shot at the very top of the neck, just above my hair line...where the scene of the crime seems to be. Cluster bump, some call it. Then two BIG shots spaced evenly between the top and bottom. He also shot several smaller shots around the right side of my head, running above the ear ant to the temple. Then I think it was two small shots above each eyebrow. He treated the other eyebrow "so you won't look funny" I still haven't been hit whatsoever during sleep. That goes for naps too. I had this treatment done Thursday, one day before the convention. Caveat : I still get one hit in the afternoon or evening. For the life of me, I can't figure out why ...but I'll take a day hit vs a night hit every effing time.

Diamond maker is spot on. I've never really figured that out, but less is way better than stimuli My trip panda puts on hours worth of pink Floyd, moody blues, and even jethro Tull. I never was a Tull fan, but WOW... My buddy says " close your eyes and open your ears. Time seems to fly by....Which is what I want anyway. Dan

BG I just re-read your posts. I commend you for taking a stand and for being a great cluster brother. I'd paddle the river with you any day! Follow the money and the love of power... A wolf in sheeps skin. I hope you get to Texas soon. Dan

Thank you everyone. I'm 15 nights perfect sleep. BUT Im still getting one hit every afternoon or evening. Seems like I'm close, but far away from pain free. Two weeks of sleep is worth a million dollars but I'm hoping to feel good enough to know for sure that others might benefit from the neck Botox treatment. And a correction: I should have said NECK rather than spine. I asked the doc to hit me in the facet joint right where he hits me with the nerve block. He explained that Botox works on muscle, so he soaked the sweet spot deep next to bone, however it was muscle that he injected. It's not the fix all that I had hoped for; but if there are any bad chronics about to go crazy for a lack of sleep, it is a lifesaver. Botox may last up to six months, so I'm anxious to see how long my perfect nights continue.

Well said Tony

What spiny and everyone else said! Sorry the headaches are constant. I understand fully I hate to say. Best positive wishes on the fungi taking the pain away. Don't give up, it took me five doses to get long term complete remission several years ago. What a wonderful feeling to be pain free or at least to feel like o I have it under control.

I deleted my post. Shallow people talk about people. Intelligent people discuss ideas. I'm sure he read it, that's why I placed it where it would be viewable by the public. Now on to positive thoughts, and like potter said. "He ain't worth the rent in your head! Go fishing instead!" Thanks Potter Much love to all Dan

Here goes: I have had 100%success with nerve blocks in my cervical spine ( occipital Facet)The problem is it only takes my screaming headaches away for a week or so. It is also a steroid which Has terrible side effects for some. I had the standard Botox treatment years ago with no success. I was up two weeks ago after my usual 3:30 am whammer. I have had THREE BAD ATTACKS EVERY NIGHT FOR SEVERAL MONTHS. I had an epiphany during one of my horrible nighttime attacks after I saw a fellow clusterheads post on FB About his Botox treatment. (the standard migraine treatment) I called my pain doc in tears and told the nurse I wanted them to give me a BIG shot of Botox in EXACTLY the same spot in my neck where he gives me the nerve block. I told the nurse to tell the doc I don't care if it paralyses me, and if it kills me, that would be great. The doc, who has a very busy practice, told the nurse to tell me to come right in. The doctor shot 200ml of Botox in muscle infour different spots in my cervical spine. From the bottom of my neck up to the top at the base of my head. ( my cluster knot) Botox takes 3 to 5 days to take effect. The first night I had my regular hell with 3 major hits. My nighttime hits are at a kip 8 by the time I wake up screaming. The second night I woke at my usual 12:30 with a mild hit taken away with 02 in 5 minutes. The third nightI slept through the night completely pain free. I HAVE SLEPT THROUGH THE LAST 13 nights in a row without any head attacks! I have had a headache in the late afternoon for the past several days, but daytime hits are a walk in the park vs night hits. I would give my treatment at least a 90% success rate. Who knows, maybe a tad more Botox would make the treatment 100%. Perhaps the shots in a slightly different place. The muscle in the right side of my neck is totally relaxed. I can feel my neck with my hand, the left side the muscle is hard as a rock while thr muscle strap on the right side is totally relaxed. I hope another chronic will try this treatment to help verify my theory. I can send more info if anyone is interested. I go to bed now unafraid . That in itself is priceless! PF wishes to all my friends. Dan

Thanks for saying that Jeebers. I've missed your wit and wisdom. And you other guys, thanks for having my back. If I had been arrested I knew you guys would at the very least, sneak me some smokes ;D Your buddy and cluster-brother Dan

I hope it's a little Cindy The world needs a lot more Cindys

GREAT POST BG

I won't miss another one. I have been absent from this board for a while. I hope you all understand....BUT IM BACK I hope all of my buddies are doing well. I have been on the cluster headache FB site some. Damn there are A LOT of "Us" out there. Best pF wishes to all, especially CHF and Jeebers I've missed all ofyou! Dan

I think we should flood his poor wife with sympathy cards just to validate what her husband did for so many people. WE NEED TO TAKE A FEW MINUTES AND SPEND A DOLLAR ON A CARD. Bob, please post an address when you can. I will certainly send a card and thank her for what her husband did for countless sufferers :'( RIP DAN

Yea, pretty nice doctor/ customer / friend. Thanks Heilette for saving me some unnecessary pain and suffering and false hope. That's what this board is all about Dan

No problem Venifica. Anything goes around here. Diggin the tats by the way Dan

...makes me question the whole deal. Thanks Heilette for sharing your story. I sincerely doubt that YOU are the one in five it didnt work for. Do you know of any successful operations? If 4 out of 5 had immediate positive results as the article stated, did you have the opportunity of talking with any other cluster sufferers that got fixed? The article indicated that these operations started in 2010. I would be curious to know if anyone really has been helped. Dan

Damn.

I have been away from the board for a while. I GOT MY DAUGHTER MARRIED OFF! Lee Ann and I will have a nice raise this year ;D Thanks everyone, you guys are the best. I will pass the facebook site To Jarno. Cindy, thank you for being so sweet. Moxie, we will meet one day, I'm thinking...CHICAGO

Thanks Jeeb

UPDATE I have an appointment 5-6 to hopefully get the ball rolling. I talked to my neurosurgeon today and he was also very interested in this new procedure. He did however suggest another surgery on my occipital nerve. Funny, you go to a surgeon and ask for help: he suggests surgery ;D Dan

I haven't really realized how many Fin's have been on the board. I don't know how this guy found me, but I am always really happy to hear from people like him. I have never seen someone on a documentary and tried to contact them. It says a lot about people in our headache family that take the time and effort to find me. I hope you all have a really nice and pain free day Dan

The above was a PM I got today, two years after filming. I trust this guy won't mind my sharing his letter to me. dan

Hi Dan! I just wanna thank u for the national geographic episode.. I'm 30 year-old ch-patient from Finland and u r the first fellow person that I'v heard talking about cluster/horton.. In Finland there is about 5milj. people and I never met someone with ch and doctors are just learning this ch here, so nobody haven't been able to help me or tell me anything about this.. instead, I'v been like a guinea pig to doctors last 15-years. Anyway when I spot u on tv I felt somehow relieved just to know that there are fellows around the world and I'm not alone with this. Thank you very much for what you've given.. May sound funny just to thank u for beeing on tv but it made a difference, gave me a motivation to carry on! Thanks to your lady too, I understand that she found the MagicMushroom for u..! (; All the best! T:Jarno Passi from Suomi Finland, Lahti THIS KIND OF PM MAKES ME VERY HAPPY, DAN :) IP Logged

hello all, I am very excited about a new procedure that stops clusters in their tracks. A friend of mine is a Maxillofacial Surgeon. He is a customer at my store and has seen my NatGeo doc. He feels sorry for me and is always asking how I'm doing and trying to help me ... Or wishing that he could. He dropped me off a print out from 2013 American Association of Oral and Maxillofacial Surgeons J Oral Maxillofac Surg 71:677-681, 2013 He has done some research in to this new procedure and he really thinks it might just be what we are all looking for. I have certainly tried crazier sounding things; as we all have [b]A New Minimally Invasive Technique for Cauterizing the Maxillary Artery and it's Application in the Treatment of Cluster Headache medical director, The Headache Clinic, Johannesburg, South Africa Dr. Shevel: The Headache Clinic, 45 Empire Road, Johannasburg 2193, South Africa Email: drshevel@headline.com Http://dx.doi.org/10.1016/j.joms.2012.12.001 My surgeon buddy says he can find a way for me to get this done right here in Abilene, but wants me to talk to my doctors and research some. I am going to get this done, one way or the other. I hope it helps us all. Dan Four out of five patients that had this day surgery had 100% relief from all headaches for three years and counting. All are refractory cluster sufferers and the surgeries started in South Africa in 2010