Sphenopalatine ablation

[CHfather]

This is from clusterattacks.com, from what I think is Dr. Sewell's blog.  http://www.clusterattack.com/blog/zapping-the-sphenopalatine-ganglion/  (There's an illustration there showing this ganglion.)

Zapping the Sphenopalatine Ganglion

Narouze (2010) Role of Sphenopalatine Ganglion Neuroablation in the Management of Cluster Headache

Sick of taking pills or sucking down oxygen? From the Cleveland Clinic comes this review of one of the less invasive forms of surgery for cluster headache—sphenopalatine ablation.

Cluster attacks originate in a small part of the brain in the center of the head called the hypothalamus, which controls (among other things) sleep, appetite, the autonomic nervous system, and the levels of various hormones. The autonomic nervous system is divided into two branches—the sympathetic (fight or flight) and the parasympathetic (rest and digest), both of which pass through the sphenopalatine ganglion, which is located at the back of the nose on both sides. Parasympathetic neurons synapse there, then run along with the maxillary nerve to the cheek and face. Sympathetic fibers pass through without synapsing and mainly end up in the walls of blood vessels. The sphenopalatine ganglion can be anaesthetized with drugs such as cocaine or lidocaine.

It can also be destroyed by heating it to 80 C for a minute with radiofrequency ablation. What happens to cluster headache when we do that?

Dr. Sanders in 1997 reported the following:

Episodic cluster headache (n=56): 60.7% complete relief

Chronic cluster headache (n=10): 30% complete relief

More recently, Dr. Narouze (who authored this article) had better luck. He performed sphenopalatine ablation on 15 chronic cluster headache patients then followed them for a    year and a half. Three (20%) experienced complete relief and were able to stop all medications. Seven (46.7%) converted from chronic cluster headache to episodic. Three (20%) noticed no change for a few weeks, then gradual improvement in the intensity and frequency of their attacks. Two (13%) had complete relief of their cluster headache—which unfortunately then came back on the other side. The only major complication of the procedure seems to be nosebleed.

What does this mean for medication-refractory chronic cluster headache patients? If you are considering surgery to treat your disease, then this has the advantage of being fairly minor compared to drilling a hole down to your hypothalamus. I am always skeptical of these peripheral procedures, however, because cluster headache is a central disorder. I have seen too many patients who had destructive surgery on one side of their head, only to have the cluster attacks squirt out on the other side instead—as happened to two patients in this series. As with any treatment, the risks and benefits need to be carefully weighed, and in this notoriously difficult crowd of refractory chronic cluster headache patients, Dr. Narouze seems to have obtained good results.

[Guest]

The sphenopalatine ganglion can be anaesthetized with drugs such as cocaine or lidocaine.

nice post ch father, i see your still lookin for that answer, as we all are, but i been there done that, heres the story

i would go to the doc 3 days in a row each week, every week (60$ in co-pays a week, 240 a month, thats a damn car payment) he would take a long q tip, soak it in lidocaine, and insert it up into my nasal cavity, about 3-4 inches, and leave it there for 30 mins, now this is not comfortable by any means, it causes the nose to bleed and creates dry spots in your throat, not to mention it tastes like liquid rubber bands when it eventually drips down your throat, i was also given affrin, 1/2 affrin nasal spary and 1/2 lidocaine in a nasal spray bottle to supposedly abort my attacks, i tried it, used up almost half of the bottle i had, my face was numb but the beast was having a field day and i could feel his every move. . .  no luck, well on day three of my first week while the qtip was in my nose i got hit, bad, one of the worst of many attacks i have experienced, not to mention being in public, needless to say i said F-that

with tears in my eyes and a q tip protruding from my face i yelled for the doctor, he came in and took the qtip out and sent me down to his infusion clinic where i was given 02 on 4 lpm with nose tubes LOL and yea i was at a headache specialists office, i begged for imitrex but for some reason they didnt have any samples at the time

not to mention once a week i received a shot in the back of my head a steroid novacaine mix, both of these procedures at the same time didnt touch my CH

if your episodic and have short cycles with long periods of remission, and prescription meds dont work or possibly combo-ing this method with prescription meds, this may be for you, but if your a stubborn case of ch, u can try, but from my experience . . . i wouldnt recommend it, its like having back pain or hip pain and taking pain killers, it will round off the sharp stabs of pain, but u gotta use them all day every day and well most of the time, they wont fix whats causing the pain,

and for the cocaine . . . addiction is inevitable if your chronic i would say

a spore syringe is only 20 bucks, one time, for life

if this method is affordable, and u think it may help you, go for it, im a case where it did nothing, my doc sees 3 other ch patients besides me, and 2 had some success, me and another guy did not, and this other guy is on v-mil, lithium, imitrex daily, o2, and gets the steroid Novocaine shot every week last i heard and he still gets hammered all day.. .. ..

everybody is different, what works for one doesnt necessarily work for another

AO

[les genser]

"I am always skeptical of these peripheral procedures, however, because cluster headache is a central disorder."

As well he should be. These guys are cave men trying to fix a Swiss watch with rocks and sticks. I'm not trying to be disparaging, just metaphorically accurate. "Ablation" by the way means permanent destruction. Let us always remember these are the very same guys who with trumpets blaring celebrated prefrontal lobotomy as a panacea cure for everything including conditions that they made up. We all know how well that worked out.

It seems to me the more a brain researcher actually knows the more likely they are to state categorically that in the relative sense they know practically nothing.

Cluster headache will not be cured with a knife.

Just my opinion.

[les genser]

"I am always skeptical of these peripheral procedures, however, because cluster headache is a central disorder."

As well he should be. These guys are cave men trying to fix a Swiss watch with rocks and sticks. I'm not trying to be disparaging, just metaphorically accurate. "Ablation" by the way means permanent destruction. Let us always remember these are the very same guys who with trumpets blaring celebrated prefrontal lobotomy as a panacea cure for everything including conditions that they made up. We all know how well that worked out.

It seems to me the more a brain researcher actually knows the more likely they are to state categorically that in the relative sense they know practically nothing.

Cluster headache will not be cured with a knife.

Just my opinion.

[les genser]

Sorry the above posted twice.....

By the way, look at that surgeon's success rate a

t little closer...

No bookie would look seriously at those odds.

[les genser]

One more thought; this is really ragging me.

The HPA axis, the endocrine system is a mechanism of such fragile sensitivity and perfectly nuanced crystalline complexity that it makes the most complex artifact of human technology look like a slinky.

No one knows how it works, except in the crudest possible approximations.

That modern medicine has pumped millions of people full of poorly understood drugs that act in uncertain ways in and on this system, creating consequences that are just now starting to be talked about and recognized, and creating an entire generation of compromised people is unconscionable.

Poking it with a stick is even stupider.

[Hipshot]

My neuro gave me 4% lidocaine...I suppose 6 ounces or so. I got on my back with my head tilted all the way back and dripped about 4cc slowly into my nasal passage on the headache side with a syringe...needle removed. I had to stay on my back, head back, for a few minutes to allow the medicine to fully drain back to the nerve.

It does help abort a bad attack but so does oxygen. With my fused neck the position I had to get in was painful in itself.

I still have some but haven't used it in a couple of years. I had it before I discovered oxygen and mushrooms.

Compared to nothing it did give pretty good relief...all things being relative.

[Pixie-elf]

I've had both occipital nerves ablated.

The first time it went numb for about a week, it was just my left one. My hits were still the same, but stopped being triggered by the occipital nerve. 2 weeks later, the pain got worse. The right side decided to start acting up to, so I agreed to let the pain management doctor do both sides.

I figured that at least if this time went bad, since I was out of options, he'd have to treat me with something.

I was very wrong.

I spent 2 days awake after that procedure, suicidal, finally went to the ER. This was done in October, then November. I began to sob during the second procedure because it triggered me so severely. December a Trigeminal Nerve specialist realized I am no candidate for any surgeries. She put me on Methadone, which actually helped, then sent me back to the other pain management doctor.

The pain management doctor who did the surgeries, last month, declared that since I had 11 bad days before my appointment (the neuralgia like pain was back in my occipital nerves) I wasn't a candidate for anything, took me off of the Methadone, and now there's no one who accepts Medicaid and will treat me, at this point.

Sure, these procedures work for some people, but they can also backfire in a horrible way. It backfired on me, and I have nothing to show for it. Except that the beast is attacking even worse. I'm not going to fuck with it anymore.

I'm here to find out what else I can do. My headache specialist is at a loss, so really, at this point, with no options left, I don't expect to remain alive until bromo-2 is released for everyone... So I've joined ClusterBusters, to see what the hell I can do that the doctors can't, or won't.

[alleyoop]

So I've joined ClusterBusters, to see what the hell I can do that the doctors can't, or won't. 

Read, read, read...

http://clusterbusters.clusterheadaches.com/

[BillyJ]

"i would go to the doc 3 days in a row each week, every week,,,, he would take a long q tip, soak it in lidocaine, and insert it up into my nasal cavity, about 3-4 inches, and leave it there for 30 mins,,,, .  no luck, well on day three of my first week while the qtip was in my nose i got hit, bad, one of the worst of many attacks i have experienced, not to mention being in public, needless to say i said F-that

with tears in my eyes and a q tip protruding from my face"-(paraphrased)

This is not how this is being done now(at least not everywhere) The sphenopalatine ganglion block is done as an injection under X-ray directly into the ganglion. The block is a TEST!

ONLY if the block works will radiofrequency rhizotomy be considered.

    I'll let you know more in a few weeks.

p.s.As BobW can tell you,she has indeed tried EVERYTHING else leading up to this.

[Bonkers]

Dan,

I think it's more than likely that the Lidocaine drops were ineffective in your case because they ran out your ears.

Your friend,

Ron

[tingeling]

Hi Pixie-elf

I certainly hope you will find relive.

Good luck to you

Pain free wishes to you

Tingeling

[shocked]

A previously unknown nerve identified -

http://www.ingentaconnect.com/content/ocean/ajra/2011/00000025/00000001/art00021

American Journal of Rhinology & Allergy, OceanSide, ingentaconnect.

Shocked

[TakinitEZ]

Pixie-elf, Very interesting post. I'm sorry that you landed where you did. Why the methadone? What was that intended to do for you? -T

[Pixie-elf]

Pixie-elf, Very interesting post. I'm sorry that you landed where you did. Why the methadone? What was that intended to do for you? -T

The doctor who was treating me had mentioned with chronic pain, there's a thing called pain wind up. Methadone has been proven to help with this... The longer you're on it, the more the nerves calm down.

It helped... a hell of a lot. I had some quality of life for 1 month. I've got nephews who are almost 4, and one who is 6. I babysat them for 8 months, so they got to know my clusters up close and personal.

There wasn't a day that went by that they didn't see me fighting them. They would come kiss me, ask me if my head hurt, sit in my lap while I used my oxygen. They could always tell when I was hurting. They'd tell me to feel better, or ask me if I had a headache.

2 weeks of being on the Methadone, and I went over to see them. It was the first time in 2 and a half years that they didn't once ask me if my head hurt... or if I felt bad... they could SEE a difference. They could tell. Hell, my doctor could tell, at least the one who prescribed it in the first place.

I'm hoping and praying that busting will fix this, because I want more days like that.

Mystina

[Jeffrey]

Hey Pix........... Been a rough one for you for sure!!!

I am really glad you found your way here. Welcome.  I  rarely question an individual doctors "motives" or intents.  But as they say the road to HELL is paved with them.  Considering how little the medicos really know I dont claim much knowledge either.  HOWEVER, there is one thing I do know........ METHADONE IS THE WORST DRUG I HAVE EVER HAD TO DETOX FROM.  Its worse, far worse than heroin.  Desperation, can be a fine motivator, if we happen to move in the right course.  If not it can get us killed, and fast sometimes.

I will make no further disparaging remarks regarding pain "specialists" and their killer concoctions.

I only hope your success with busting naturally will be blessed by God.

jeffrey

[Pixie-elf]

Hey Pix........... Been a rough one for you for sure!!!

I am really glad you found your way here. Welcome.  I  rarely question an individual doctors "motives" or intents.  But as they say the road to HELL is paved with them.  Considering how little the medicos really know I dont claim much knowledge either.  HOWEVER, there is one thing I do know........ METHADONE IS THE WORST DRUG I HAVE EVER HAD TO DETOX FROM.  Its worse, far worse than heroin.  Desperation, can be a fine motivator, if we happen to move in the right course.  If not it can get us killed, and fast sometimes.

I will make no further disparaging remarks regarding pain "specialists" and their killer concoctions.

I only hope your success with busting naturally will be blessed by God.

jeffrey

Getting off of the Methadone was easy for me, I was on a low dose, and my body didn't hold it for more than 6 hours at a time. (My drug metabolism is pretty messed up...) I've read about how hard it was for people to quit it, and how horrible the withdrawals were. I'm sorry you had to go through that.

To be blunt... I am at the point that the CH is terminal for me. The doctor who put me on the Methadone in the first place understood that very well... She was also cancer doctor. (And has switched to only treating cancer patients...) The one who took me off of it, was more concerned with I don't know what. Getting a lawsuit if it killed me somehow.

So my plan is.... bust. Bust until it works.

And, on the off chance that it doesn't? I will hospitalize myself. I refuse to let my family be destroyed because I had no options. The beast DOES NOT get to win this. There has to be some doctor who will be willing to keep me alive until BOL is released. (I don't know any chemists, unfortunately.)

Thank you for your good wishes, I'm positive that busting has got to be the answer to this hell. Once it works, I WILL tell my headache specialist, and she will be thrilled. She's on my side on this.

Mystina

[Enitharmon]

i would go to the doc 3 days in a row each week, every week (60$ in co-pays a week, 240 a month, thats a damn car payment) he would take a long q tip, soak it in lidocaine, and insert it up into my nasal cavity, about 3-4 inches, and leave it there for 30 mins, now this is not comfortable by any means, it causes the nose to bleed and creates dry spots in your throat, not to mention it tastes like liquid rubber bands when it eventually drips down your throat

My doc did the same thing about 2 1/2 years ago, but he wrote me a scrip for 4% lidocaine solution and told me to buy the cotton-tipped applicators at a med. supply store.

I had better luck at the time with extra strength Orajel (20% benzocaine vs. 4% lidocaine), but that crap burned my nostrils like hell.

Neither one's done much on my current cycle, and that's a big part of what's led me here.

[Jeffrey]

Neither one's done much on my current cycle, and that's a big part of what's led me here. 

Hey Eni,

Glad youre here.

My suggestion............ waste NO time obtaining either seeds or shrooms to bust.  I kicked myself in the butt for hesitating.  Gotta tell ya, this nummer up the nose reminds me way too much of activity in my past that created a lot of problems!!!  dif context tho 

[Enitharmon]

Thanks, Jeffrey! Seeds on the way, non-rebreather mask on the way, and I'm calling the neuro first thing in the AM for 02 and a high-flow regulator. Weaning off Verapamil & ready to bust by next weekend.

I really wouldn't know anything about those other contexts. Really. I mean it.  :

[Jeffrey]

rock on Eni........ Its 3 am and I am having my first re-visit from the beast since dosing on friday.  Its a lightweight tho and I know it took a big hit from the seeds so my hopes remain high,........ Im really glad you are moving quick on this.  Blessings to ya.

[Enitharmon]

Glad to hear you're making progress! Keep it up!

[Jeffrey]

Well ,  good news and (sorta) bad news..  Ive had 48 PF hours (good). Im sittin here at 3am Weds with my friend the ice pack (not so good).  BUT........ this a WIMPY  ass attempt on the part of the beast to remind me of its persistant "power".  HAHAHA...... The beast has been kicked in the nuts so hard,,,,,,, THIS is the best it can do??!! 20 min K2 put down with an ice pack!!!  yeah!!

Man....... I SOOOO wish I could just GIVE this to you all!!

[BillyJ]

Well,no luck with the SPGB 

On to a C-2 block Friday

[Pixie-elf]

Well,no luck with the SPGB 

On to a C-2 block Friday

Good luck, I'm praying for y'all.

Mystina