Hi everyone. I wanted to give a quick update on the 2 procedures I had done. The doctor who did them is a nuerosurgeon in NYC. I was put to sleep and he uses a small scope with a camera, goes all the way up the nose and injects a steroid into the ganglion of the spg nerve. I was told that even if the pain doesn't originate from there, it is still a pain pathway and they have been seeing good results. It seemed to work for me, except it only lasted about 2 weeks. The couple of headaches I had were milder. He then repeated the procedure about a week ago and used more steroid (he called it being more aggressive as well). I am waiting to see how long this will last. I've been lowering my prednisone, am now at 5 mg a day, but need to be cautious at this point since I've taken it for so long. The Dr. also said if this 2nd procedure works well but only lasts a short time again, he can go in the same way and zap the ganglion for a more permanent result. However, he is hoping this last one will bring on a long remission and he won't have to zap it. He said some people develop a near-consant runny nose (one side) after getting that done. Not everyone, but some people. I will say that the procedure itself is easy, no pain even upon waking (except when they yanked out the huge gauze pad that was waaaay up my nose (i had some bleeding the 2nd time). If anyone wants more info I can give you his details. I still don't know 100% if it worked, but I will say I am optimistic. I'll know better in about a week or two then give another update. Hope everyone is well.

Ariel,

I'm happy to hear the sphenopalatine ganglia block brought you some relief...

The only thing that raised the hair on the back of my neck was use of the term "zap..."  That's an all to casual euphemism for "kill."

In other words...  zapping the sphenopalatine ganglion means killing it permanently. 

Are you still taking the vitamin D3 regimen?  If so, at what dose... and have you had your 25(OH)D serum concentration checked?  Nearly all the CH'ers who have found this regimen effective in preventing their CH have tested for serum 25(OH)D in a range of 60 to 110 ng/mL

Have you added vitamin A to the above regimen?  It appears vitamin A (retinol) is essential for the peripheral metabolism of vitamin D3 that may be responsible for it's cluster headache preventative effect.

Being an old fogy...  I take a Centrum Silver multi-vitamin tablet as it contains sufficient vitamin A along with vitamin K and some of the other cofactors.

Take care,

V/R, Batch

ZAP - I would consider that to be a last resort... very few success stories on that path. I know you said busting would be a last resort, maybe time to reconsider what should be last.
Just my two cents.

ttnolan wrote on Aug 29^th, 2012 at 11:34pm:

ZAP - I would consider that to be a last resort... very few success stories on that path. I know you said busting would be a last resort, maybe time to reconsider what should be last. Just my two cents.

Amen.

Well, busting and high doses of vitamin D3.

Look into the BNS-40 ULF-TENS from Myotronics that has a 50 year safety record in neuromuscular dentisty.  It relaxes trigeminal and facial nerve innervated muscles but also acts as stim to Sphenopalatine Ganglion.  Suprazygomatic injections into pterygopalatine fossa is most effect method of injecting SPG but trans-nasal cotton tipped catheters are most effective method of SPG Blocks.  Use lidocaine with no epinephrine or preservatives, no steroids.  The key is self administration.  This allows you to learn procedure but it can then be done for about $1.00 per bilateral application.  Usually best to start with twice a day for a minimum of 20 minutes but can be kept in for hours.  Properly places it is a continuous capillay feen , no need to stay on your back.  If you cannot manage cotton tipped cathetes try Sphenocath or Allevio.  Can still be self administered. Device is expensive $75.00 but for self administration it can be reused.   The key is self administration minimum twice a day for 2 weeks than once a day gradually cutting back.