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        New Message Board Archives >> Jan-Mar 2004 >> Occipital Nerve Treatment Outcome
        
(Message started by: Tiannia on Feb 26^th, 2004, 3:11pm)

Title: Occipital Nerve Treatment Outcome
Post by Tiannia on Feb 26^th, 2004, 3:11pm

ok guys I am back and so far so good.

I had a killer f-ing HA yesterday morning, sweats eye swlling, the whole nine yards... So that is what I walked into the doc with. Guess I wanted to make sure that they got me at my worse. Anyway, they did not put me completly under because with them working so close to the brain stem they did not want me to jerk while I was out. So I was really doped up but still able to understand what was happening.

My head is sore where the incision was and my neck as well, not sure if it was because the the weird anlge they had me in or what.

Twice yesterday I got the sweats and thought for sure I was going to get hit, but all I got was some pressure. Its like I could feel my head swell under my skull but the searing jabbing pain did not come with it. Hell I actually slept through the night.

So far today I have only felt a couple of minor shadows and pressure behind my left eye. I dont know how long it will last. But so far so good. I figure every day is a blessing at this point. And if in a week I am back at where i started then at least I had a week pf.

Thanks everyone. I will still be here everyday. Check ing up so dont think that you got rid of me.

Tiannia

ps: I just felt the need to explin. Like 12:30pm is when I normally get hit. I get the shadow, I get the pressure in the back of the head and can feel it wrapping around to my ear and building up behind my eye, but the sharp pain is not with it right now. I am going to have to get in the the New doc the Greg told me about come marchand see about getting on some other meds that might help more.As I feel like I am still having CH, but I am disassociated with my self while they are happening. I know it is crazy to talk like that but it is how it feels in my head.

Tiannia

Title: Re: Occipital Nerve Treatment Outcome
Post by bobkip on Feb 26^th, 2004, 3:27pm

Glad it worke out for you, hope it works forever.
Kip

Title: Re: Occipital Nerve Treatment Outcome
Post by Lizzie2 on Feb 26^th, 2004, 3:39pm

Really hoping it works for you Tiannia!! You have a great attitude about being grateful for the painfree time you have, no matter how long it is! Keep it up! :)

Hugz, Lizzie :)

Title: Re: Occipital Nerve Treatment Outcome
Post by ZAIRA on Feb 26^th, 2004, 3:46pm

Dear, I hope it works! Use your courage and send the bastard back to hell. You have got some good supporters, use and abuse them..... Kick the bastard's ass! The very best from Zazi to you [smiley=hug.gif] PFDAN hang in there!

Title: Re: Occipital Nerve Treatment Outcome
Post by Woobie on Feb 26^th, 2004, 5:55pm

Hey Tianna...

Sending you vibes....
and a hug too! [smiley=hug.gif]

tina :-*

Title: Re: Occipital Nerve Treatment Outcome
Post by pubgirl on Feb 26^th, 2004, 6:06pm

Vibes and prayers that it works longer term Tiannia

W

Title: Re: Occipital Nerve Treatment Outcome
Post by thebbz on Feb 26^th, 2004, 10:11pm

You are very brave, prayers and vibes, all the best.
the bbz

Title: Re: Occipital Nerve Treatment Outcome
Post by Tiannia on Mar 1^st, 2004, 2:22pm

Well here is the newest news from my standpoint. I think the nerve block has worn off again. About 3 days again, think I might have gotten one more day out of it but not much more then that.

Guess the point is that I am not completly PF anymore. Is it back to where it was before? No. Not even close. But I am feeling the HA's now. Not just the pressure but some of the pain, usually around my eye. Only about a K4-5 max at this time. Strong enough that I know it is there and is to the point of just destracting if I am not focused. It is much better then before, so I am not complaining. I go and see the doc next week to see how things are going. Actually, I think that it might be good that I still feel it ome, that way when it does come completly back, I am not set on my ass because I dont remember THAT pain. Besides hopefully now I can try different meds and tell for sure if they are helping and not just assume they are if I could not feel it. Want to try Verapramil (sp?)

Wishing you all PF Days and Nights.
Tiannia

Title: Re: Occipital Nerve Treatment Outcome
Post by aprilbee on Mar 1^st, 2004, 2:56pm

I was so glad to read your news then so sad to read the update... :( I hope and pray the best for you! Lots of love!

Title: Re: Occipital Nerve Treatment Outcome
Post by Tiannia on Mar 1^st, 2004, 3:28pm

on 03/01/04 at 14:56:54, aprilbee wrote:

I was so glad to read your news then so sad to read the update... :(

Dont be sad hun. This is a great improvement for me. Having the HA 5+ times a day where really wearing me down at the level they were. This is such a blessing at this point, that I am very happy to have done it. Now at least I know it will work for me and it is an option for the future as well.

Besides I plan on still filling all my scripts tso that I am prepared for them to come back in full force. I hating having to hold off on using Imittrex until I am almost to an incapasitated state because I want to make them last longer. Only 6 NS in 25 days is hard to ration at times.

Grateful for the relief I can get,
Tiannia

Title: Re: Occipital Nerve Treatment Outcome
Post by cathy on Mar 1^st, 2004, 4:18pm

Tiannia, im pleased that your getting some kind of relief since the procedure here's hoping that you don't have to use any of the scrips you save up!!

Vibes to you...

Cathy

Title: Re: Occipital Nerve Treatment Outcome
Post by Charlie on Mar 1^st, 2004, 5:42pm

Good and Bad T:

Here's hoping you and your sawbones can outfox the beast. Looks like you've gotten some relief and I guess you can't complain about that.

Good luck and let us know how things are going.

Charlie

Title: Re: Occipital Nerve Treatment Outcome
Post by broomhilda on Mar 1^st, 2004, 9:00pm

Thinking about you Tiannia and hope for more relief over the coming days!

Please keep us posted! :)

Andrea

Title: Re: Occipital Nerve Treatment Outcome
Post by Renee on Mar 1^st, 2004, 9:13pm

I had an occipital nerve block and a supra-orbital nerve block done last year. I actually think the supra-orbital nerve block helped me the most.

I just got the needles run into my orbital cavity and then up under my skull in the back of neck, without any lidocaine, drugs or anything. If i were to go back, the supra-orbital block without lidocaine was a very painful idea.

I think the occipital nerve block wore off pretty quickly but the supra-orbital block stopped my ha's for about 6 weeks and the only thing I noticed was I had a loss of feeling when I would touch my forehead just above the supra-orbital notch.

good luck
renee

Title: Re: Occipital Nerve Treatment Outcome
Post by BobG on Mar 1^st, 2004, 9:24pm

Dang! Thanks Renee. I didn't know what a supra-orbital nerve block was so I put it in my Google.

http://www.vh.org/adult/provider/familymedicine/FPHandbook/Chapter21/04-21.html

ouch! Now my eye is watering. ;;D

Title: Re: Occipital Nerve Treatment Outcome
Post by Renee on Mar 1^st, 2004, 9:28pm

bob,

it hurts, ALOT, but not for long. the 6 weeks it gave me pf was worth the immediate pain.

wish i had another block now!
renee

Title: Re: Occipital Nerve Treatment Outcome
Post by Cerberus on Mar 2^nd, 2004, 12:59am

And may you continue to enjoy your ......er success?!

Hope the new meds will aid in your improvement. Nice to get some PF time even if it isn't totally PF, and glad it is you who got it. :)

Ramon

Title: Re: Occipital Nerve Treatment Outcome
Post by stevegeebe on Mar 2^nd, 2004, 6:09am

Man...! The things we do to fight this crap.

Pullin' for ya Tiannia.

Steve G

Title: Re: Occipital Nerve Treatment Outcome
Post by drap on Mar 2^nd, 2004, 7:59am

i know this has nothing to do with the treatment for which you guys are talking but it's great to see a fly fishing person out there. it's really my life outside of family an this beast that we are fighting tooth an nail. i hope this treatment works . my doc was talking to me about a nerve block maybe i might try it if this nightmare keeps coming. drap steve

Title: Re: Occipital Nerve Treatment Outcome
Post by Renee on Mar 2^nd, 2004, 8:21am

drap,

sometimes trying to see thru the pain to look at the pics I have of fly fishing is what keeps me sane.

there is no better tranquility and mental calm than tying a dry one on and hittin' the river. unfortunately, i live in texas so my tranquility is limited but I do travel alot in the summer. Favorite rivers are the Snake River in Jackson, WY and the Truckee river in Lake Tahoe. The west Carson isn't bad in Tahoe area either.

I never get hit in high altitudes which is quite the opposite of many.

hang in there
renee

Title: Re: Occipital Nerve Treatment Outcome
Post by Tiannia on Mar 2^nd, 2004, 11:22am

Thank you everyone. See this is why this board means so much to so many people. The support that we all get, even with the crap we give each other. We are one hell of a big family. We argue, fight, hug, cry, support, butt kick, all of the things that you are willing to do for the people who mean the most to you. We all come from diverse backgrounds, parts of the world, heritage, but here there is no judgement, no stereotypes that hinder us from being there when someone needs us. Even though many are reading the board through their own pain, thier own suffering, they willingly offer support to others in need. For we, ClusterHeads, are strong and knowing that we have this amazing safety net of friends here, gives us the strength to stand up everyday and and say to the Beast once again, "You may fight me today, but you will not defeat me ever."

Thank you my friends,
Tiannia

Title: Re: Occipital Nerve Treatment Outcome
Post by Renee on Mar 2^nd, 2004, 2:53pm

Tianna,

How are things going today? How is the ch?

Did they ever discuss with you the supra orbital nerve block?

I think I'm getting pretty close to either going in for DHE IV or another supra orbital nerve block.

pf days to ya
renee

Title: Re: Occipital Nerve Treatment Outcome
Post by Tiannia on Mar 2^nd, 2004, 3:37pm

I would have to say that I feel about 50% of the intensity that I felt before. So after the nerve block wore off, I do still feel the pain, but I think the radio frequency generator (whatever thing) was a sucess since it did not make it worse. I have to say that I was hopeing for more complete pf time, but I was at least prepared for it as I expected the Nerve block to only last 3 days and I actually got 4 days out of it. /shrug

No I had never heard of the supra orbital nerve block. I read the link that you posted. Just reading it looks very painful.

I am hoping that it does not get any worse at this point. I would have for it to have been all for not.

Tiannia

Title: Re: Occipital Nerve Treatment Outcome
Post by Renee on Mar 2^nd, 2004, 7:31pm

50% better? i'm sorry ya didn't get any better results than that!

well, i hit the nail on the head! my neuro changed my meds today to topomax and zomig PLUS I got 2 nerve blocks. The supra orbital and the supra trochlear nerves.

The shot hurts like hell but when you are in the throw of a kip 9 it don't hurt THAT bad. Lookin' at a 3 inch needle being inserted into that notch is pretty scary though.

I'll keep ya posted on how my nerve blocks work. Right now all is numb and I look like a took a sucker punch on my left eye as it's all swollen and puffy where the meds are.

good luck and pf vibes to ya tianna
renee

Title: Re: Occipital Nerve Treatment Outcome
Post by Tiannia on Mar 2^nd, 2004, 11:51pm

When I was 13 I have a tumor that was inside my eyelid. When they removed it the shot the local anisthesia (I know I cant spell ;)) In 5 shots around my eye. It hurt like hell. Luckly it was benign but once removed it was the size of a males thumb from the nuckle to the tip. It was huge. I imagine that the hot would be similar to that, as they needed me to be awake for the procedure so that I did not move while they where cutting.

I hope that it goes well for you.

Hopefully, now that my PCP is a doc that is familiar to CH maybe I can actually get him to try some other meds. Gregg (LasVegas) recomended this guy. So I hope that I will get better results and cooperation from him.

Actually I think 50% is a sucess. Being hit as hard and as often as I was, I was worried I would lose my job. At least now I can get through the whole day and be able to focus the entire time and get a lot accomplished.

THanks Renee. PFDaN,
Tiannia