Had my second RFA of my sphenopalatine ganglion done at Stanford today. This time it was apparently successful, as I could feel the electrode stimulate the correct place in my nose.

I could see my skull on the giant flatscreen monitor via fluoroscopy.  He moved the probe around and activated it at various locations.  When he would activate it I could feel a weird sometimes painful sensation in various areas around the left side of my mouth and face.  The goal was for me to feel a sensation inside my nose.  After about 20 minutes of being "probed" I finally felt it inside my nose and I hollered out "Yes!  In my nose!  I can feel it!"  He had to move the probe in an unusual way, apparently he had to go above something, then back down.  I think it was a maneuver only a pro would know.

I'm sitting here in bed with the left side of my face partially numb.  I think most of that will wear off since they used local anesthetics, however I think I will have some persistent numbness around the left side of my nose.  If it helps my headaches it's a small price.

There is something I want to anyone considering the procedure to understand:  be very assertive and picky when it comes to the surgeon.  Let me explain.

Time travel back to May of 2015.  I was scheduled for my first RFA of my SPG at Stanford.  I assumed Stanford was a world-class facility and my surgeon would be one of the best of the best.  His name was Dr. W.  He spent 90 minutes probing around and never found the SPG - I didn't feel the tingling inside my nose.  Eventually he called it quits and the procedure was a failure.  My guess is he didn't know the technique to go from above.  Several months later I met with the neurology-headache specialist, who has been around Stanford a long time, and he said something like "they assigned Dr. W? hmm, that's interesting...  you should try it again but this time let's get Dr. Qian, he's very experienced".  So I was a bit annoyed and confused that they would have put a green surgeon on my case.  I guess I had to fail with their basic team before getting promoted to their A team.  In all fairness to Dr. W, he may be an expert in RFA but just not of the SPG.

Cluster Lesson:  If you are going to have RFA of the SPG make sure the surgeon has done this exact procedure many many times, even better if he teaches facial RFA procedures and has written about them.

It's been a tough year for me, and I'm hoping this procedure gives me some relief.  More importantly, I hope it means I can stop Topomax, buprenorphine, and Lyrica because they've turned me into a zombie.  I'm tired of people saying "don't you remember that conversation where you agreed to do x, y, and z" and I have no memory of it.

Robert

Update:  almost two weeks after the RFA and I've been worse for the last four nights.  I am hoping this is temporary and they said it takes three weeks to recover.  I get a #4 after falling asleep and wake up the next morning with a #4-#6 on the Kips.   

This is totally new since the procedure.  I used to never have pain when waking up.  My schedule had always been same when I was in cluster:  10am - noon,  and then 3pm - 7pm; some days it started earlier or lasted longer. 

I now get a sense of dread as bedtime approaches.  Mornings consist of a 3mg injection, coffee, and putting bezocaine on a long q-tip to give myself an SPG block (my sinuses/turbinates have been all drilled out so it's easy to access).  An hour later and another 3mg.  Then I'm good about an hour later.  I don't seem to have the daytime pain the last couple days.  Strange how sleep is so tied to cluster.

Hey Nervely,

Sorry you're still getting whacked by the CH beast.  You might want to ask your PCP for the 25(OH)D lab test...  I suspect you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.

If I'm correct, your serum 25(OH)D lab will come back less than 30 ng/mL...  We've sufficient evidence that most CHers need to maintain a 25(OH)D serum concentration up around 80 ng/mL to remain pain free.  That typically takes a vitamin D3 dose of 10,000 IU/day plus the vitamin D3 cofactors.

Take care and please keep us posted.

V/R, Batch

Hi Batch,

Thanks for the recommendations.  Months ago I followed your PM and got the test - I was way low on D.  I've been supplementing with your regimen daily. 

Inflammation in my sinuses definitely is a trigger for me.

They think I have a mechanical reason for my cluster headaches and that might be why the regimen is not 100% successful with me.  I had facial cellulitis just before my clusters started, and then had several surgeries to correct issues with my sinuses constantly getting massive infections.  The current theory is some nerve got messed up from the infections and surgery involving the sphenopalatine ganglion and trigeminal nerves, and that has left me susceptible to cluster.

Hey Nervely,

Thanks for the update...  Another lab for 25(OH)D is still in order.  There's a wide range of responses to 10,000 iU/day vitamin D3 between CHers...  You may still be low/below the CH response threshold ~ 60 ng/mL.

If your 25(OH)D is up around 80 ± 10 ng/mL, and you're still getting hit, have you tried Benadryl (Diphenhydramine)?  25 mg every 12 hours has worked wonders for CHers who don't respond to this regimen.  Just be careful not to drive when taking Diphenhydramine... you will get drowsy...  If you need to drive, take 50 mg Diphenhydramine in the evening when you're home and done driving for the day.

Take care and please keep us posted.

V/R, Batch

Batch,

It's great to get advice from somebody who know what he's talking about.  My doctors just refer to the headache protocol and keep pushing the obvious stuff like verapamil. I have a bunch of questions for you.

I'll go up to 10k ui a day.  Have you heard of Quercetin?  It's an antiflammatory based on flavenols:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Regarding the fish oil, recently there's been a trend to use krill oil.  What do you think about it?

Also, I'm close to losing my mind.  I get more and more anxious as it gets time to go to bed as I know it's going to strike, and the last few days the beast has been merciless.  I nearly took an exacto-knife to my temple to cut out he pain.  Do you have any recommendations?  The only thing that I think helps a little with acute preventatives is sticking a long q-tip up my nose with a benzocaine to numb the area above the sphenopalatine ganglion. 

I'm dreaming of a giant syringe that i can jam through my temple straight into my brain to make the pain go away - something like that scene in pulp fiction but for my head instead:

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And then the pain goes away.

Neverly,

Have you no oxygen ??????

Melatonin last thing at night will help. I take 10mg but some people here take 20mg every night and swear by it.

It takes a little time to build up in your system, maybe 5/6 days, but by that time the D3 at 10,000iu/day should be working as well.

Between the two you should be in better shape shortly.

I would advise against sticking Qtips up your nose. It's an area all too prone to infection, not least after the procedure you've had.

Take care and keep posting.

Peter.

Neverly

You mention that your attacks are predominantly nighttime.  Let me suggest that you raise the issue of a sleep study with your neuro.  While it is not well developed in the literature, there are indications that Sleep Apnea can contribute to CH.  I had the study done and was put on CPAP therapy nearly a year ago. The first night I used the CPAP I was headache-free and it has been nearly a year since my last attack.  It does make some sense since Sleep Apnea lowers your blood oxygen level, and we know that raising O2 levels is an effective treatment for CH.

It doesn't work for everyone, but if you suffer from extensive nighttime attacks I would recommend it.  It has been a lifesaver for me.  Best of luck.