Ok, I may have spelled occipital,

Has anyone had one of these? has anyone heard of anyone having one of these. 

I ask one thing, if you are going to reply back to me and say that it didnt work for out for you, please tell me how bad your CH are or the person you are talking about and if you or they are on other unrelated meds or have other unrelated issues such as bipolarity or heart issues. 

I only ask becuase, well.... I am trying to be really hopeful that this at least breaks my cycle and I can be done until at least this time next year....

I am getting hopes up... I know. But to use a quote from a great tv show, "Im tired of not believing in the things that I want to believe in"

best J

Joshl924 wrote on Mar 21^st, 2011 at 4:00pm:

Just saw a specialist... got an 02 prescription, imitrex prescription (boy is this expensive) and he gave me an occipital nerve block which smarted but not as bad as a CH.... Hopefully this works. I never would have been able to come this far this fast without this site and the help of you guys... thanks a ton, and Ill be posting my progress asap.

You say you had one.  Did it work?

         Potter

I had one a couple of years ago.  It did not work for me.  I had an allergic reaction to it though.  Hives on top of CH. :(  I'm a 6 year chronic sufferer (6+ spikes a day).  Hope it works for you though.

VV... Yes I had one yesterday.

The way my CH have been going, I'll know it did something If I wake up tmw and have been PF becuase the way mine work is two days of CH 1-3 hits a day (perfectly spaced out so as to make me worthless) and then one day of respit. So yesterday was a day of respit (when I got the treatment). If no ch by tmw morning that will mean 2 days PF which I havent had since this started. Dont want to get my hopes up

Also to the other person who replied thanks for the specifics.

VV, side note... I think your little picture next to your id, is a trigger... Im half joking...

I just had this done on Thursday. Unfortunately for me it did not work. But according to the Doc it is a good treatment for alot of folks.
I have just been diagnosed with clusters...twice a day usually at 10am and 10pm-God's idea of a joke to go along with the 10 pain. HAHA!
I also am Bipolar  :D ...I take 300mg of Lamictal and 150mg Wellbutrin a day. I also use 3mg of melatonin at night to turn my mind off so I can sleep.
I am wishing you all the good thoughts I can that it works for you!! XO

Thanks a ton for sharing.. Im just coallating as much data as I can...

I went on prednisonse and am on day 3 of a 10 day taper and aside from a few minutes of sahdows a few times a day Ihave been PF. This is the longest I have been PF since they began 5-6 weeks ago...

Hoping this works, but if not, I have zomig imitrex, oxygen, energy drinks,

I also have been on batch's regiment and threw in a few other herbs that I will share in a few days if I remain PF...

Here we go...

Occipital Nerve Radiofrequency + steroid injection:
I have been in a 4-5 week episodic period of major grief and sleep deprivation with 5-6 CH/night and some in the daylight, which I only get when its real bad. Lyrica quit working for me. I had a radiofrequency treatment plus corticosteroied injected at the right greater occipital nerve. I was actually winding down to 2-3 per night with none in the day by this time. The headaches just quit and I have had only one minor shadow in the last 3 days since the procedure where the pain specialist "cooked" my nerve. He called the procedure "modern day torture" and I just laughed because the pain was nothing close to a full blown nasty. After the procedure it felt like Mr. Spock knocked me out or like someone blind sided me with a karate chop but that was gone by the next day. I know it is WAY too soon to call this a success but this is the first encouraging development I have had in quite some time.

Code:

I am on my 4th week of my cluster cycle. I went to my headache specialist today and she gave me 2 ON injections. This is my first time trying this.  It was not sore getting them. But several hours later. My head feels like someone punched the back my head. But I believe this is to be expected and should feel relief in a day. Before today I was just taking Zomig nasal when I was having an attack. I have been having 1-2 attacks a day. The Dr explained that the ON injections will help me until the preventative medicine Verapamil take effect. Also was prescribed Sumavel to take when I take when I have an attack. I have a follow up appointment in 3weeks. I am Hopi g that all this treatment works or learn what doesn't work for me. I have been a cluster Surviver for 10 years with my acute attacks the past 4-5yrs. I am now taking control and trying to find what medication/treatment works. How did the ON treatment work for you?

Code:

I am on my 4th week of my cluster cycle. I went to my headache specialist today and she gave me 2 ON injections. This is my first time trying this.  It was not sore getting them. But several hours later. My head feels like someone punched the back my head. But I believe this is to be expected and should feel relief in a day. Before today I was just taking Zomig nasal when I was having an attack. I have been having 1-2 attacks a day. The Dr explained that the ON injections will help me until the preventative medicine Verapamil take effect. Also was prescribed Sumavel to take when I take when I have an attack. I have a follow up appointment in 3weeks. I am Hopi g that all this treatment works or learn what doesn't work for me. I have been a cluster Surviver for 10 years with my acute attacks the past 4-5yrs. I am now taking control and trying to find what medication/treatment works. How did the ON treatment work for you?

See:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Michael

Michael,

I'm seeing a new doctor that has suggested an occipital nerve therapy. I just went in yesterday for the lidocane (test?) shots. I was PF until late that evening. From what I can gather, the lidocane itself only lasts in the system for 6 hours or so...maybe that explains the hits last night and this morning.

I'm optimistic about this after reading some of your posts but still wondering what direction they are going to go in since it seems I tolerated the lidocane with no side effects whatsoever.

As a side note, this particular doctor is somewhat famous around these parts for killing migraines with botox...though the studies are few and far-between for clusters, I wonder if that's going to be her approach?

Un

I've been suffering for over 18m years now and have run through entire line of therapies availaible to us. I just recently had my first occipital block a week ago. It contained 10ml of .25 marcaine and then 120mg of depomedrol. I have been PF since. I"m about to ween off my 400mg a day topamax and see if I'm indeed out of the cycle. They also now make a stimulator for the nerve that looks promising. For those of us that are chronic. :)

I wanted to add my quick two cents here because I have had some success with nerve blocks. I have found, however, that the occipital nerve block alone does not seem to work as well as having multiple injections in different locations. The most success I have had with this therapy was when the doctor administered three injections in the occipital, temporal, and frontal nerves. I only had two blocks and one was done only in the occipital nerve with marcaine and a steroid; that only lasted me about three days. The second time, I received the three injections, but I was only administered marcaine since it was too soon to do another dose of the steroid but even with the short effects of the marcaine this lasted me about seven days. Now, that's obviously not great, but compared to 3 days it's much better, so at least asking your doc about having the injections closer to your pain site might be worthwhile. It might have made a difference if the steroid had been injected in a different nerve the first time. I'll probably try having one more block the next time I see my doctor and see what he has to say about the steroid and different injection sites.

I am chronic too and I have read about the implant for those who respond well to the nerve blocks. While it looks promising, my doctor personally thinks it will be years before it's something any CH sufferer should look into. Firstly, it seems to be much more helpful for migraines but, almost as importantly, he said insurance never covers it and it costs tens of thousands of dollars and frequently doesn't "take" the first time. He has a patient who had to spend almost 200,000 dollars out of pocket trying to get the stimulator to work properly. I personally don't respond well enough to the nerve blocks to make that even in the REALM of worthwhile possibility. Granted, your mileage may vary with your insurance depending on how long you've been treated for headaches and if you respond better to the blocks than I do it does seem like an ultimately promising therapy.

Sinead and Zac,

The ON block they did for me was with lidocane so it was very short term...it seems I had some success...which is a relief since I've been on this pony for over 20 years.  :-/

My new neuro is trying to fast-track Botox treatments through my insurance in basically the same way as the occipital nerve lidocane shots were done. I'll keep everyone informed if I have any luck getting them plus, how they were done and if they work....

Lego, General Cluster
Keep us in the loop if you can. This looks like a promising route if it's done the right way...

Un

Un,

My doc has also found a good deal of success with cluster patients and botox. I don't know that he's so famous for it, but he's been doing this for years and years so he's certainly seem his fair share of cases. My headaches are treatment resistant to almost everything we've tried and nothing makes me feel better than when he reminds me, "What, you think you're my only difficult patient?"  ::)

I have not done much research on it, but I have heard some anecdotal stories from other sufferers as well that the botox can work great just depending on your physicality. I imagine it works in much a similar way as the nerve blocks.

I know I already made this point, but I would definitely ask about alternative injection sites instead of or in addition to the occipital nerve. You should also really ask about the marcaine over the lidocaine. It hurts like hell and I found it made me a little lightheaded (I had to lie down for 20 mins after) but I guess any time you get three shots in your head you might feel like that.

A short, but funny story. The first time I had the nerve block, my doctor had another doctor in the office do it because she does it a slightly different way than him. She was this cute, innocent looking and fairly young blond-headed doctor. She said "This will probably hurt like hell, but my migraine patients are bigger babies about it. I tell my cluster patients it's going to hurt, I do it, and they usually tell me 'you think that's pain?? I'LL SHOW YOU PAIN.' Besides, you can swear around me. What's your favorite swear word? Mine's motherf***er!"

Except she actually said it. And I couldn't help but laugh.  ;D

Zac

My doctor wants to try the occipital nerve block treatment and I'm willing to try anything at this point.  I've started a new cycle (my normal cycle is Jun-Nov/Dec)...yippee.  My last neuro tried the botox and while it did get rid of some wrinkles, I was on the downhill slide of my cycle, so I'm not sure it worked.  I would be willing to try it again, but all the shots hurt more than I thought they would.

I've had CH for more than 20 years and I'm thankful that more doctor's understand the devil...just wish we could have a cure!

Wendy