Decided to share this here too :)

Ok so I finally got up the nerve (pardon the pun) to do the nerve block for my cluster headaches, or I was really tired of the grueling unrelenting pain of this demon not sure which at this point.

Anyway...yep I did that.

I never thought I'd get up the nerve to let someone take a needle to my head haha. It's amazing what we'd do to avoid another crash into the beast of CH. Wish me luck that it holds for a few months at least...oh that would be heaven!!!!!

Just thinking, have you tried the vitamin D3 Regime.

Hoppy.

Yes and I don't handle it well.  Guess I'm one of the odd balls that doesn't do well on it.  Go figure
:-/

Thats a real shame. I wish you all the best of luck and pain
free days with the nerve block.

Hoppy.

Ginger was one of the first to try the anti-inflammatory regimen in November of 2010, shortly after I developed it...
Unfortunately, she had some other problems that prevented her from experiencing the benefits of this regimen.

That said, it might be worth another try...  Ginger, if you can swing another lab test for your 25(OH)D, we might be able to tailor the regimen to prevent the reactions you had the first time you tried it.

Take care,

V/R, Batch

Batch!!!  Got my 1st fellow CH'r Hug from you :)

I am going to wait a bit on the effects of the block and then see if I can get rid of one of my meds...am Hopeful about that (fingers Crossed).  After that I am going to try a low dose of D3 and see how that goes...again fingers crossed.

Batch If I haven't said so before you are the BEST with out you I don't know if I'd been able to get in to see Dr Rozen and get my 1st Ch'r hug! 8-)

Please let me know how this worked for you...  my doctor is offering this for me and I am too nervous and not sure yet if its something that I want to try...  good luck!

Hi JustNotRight and Alynn

Have you actually had the nerve block done yet ?  If not let me reassure you that it's not nearly so gruesome as it sounds.

Sadly for me it didn't work, but if it had I would not hesitate to have it done again.

Hope it works out for you.
Maz.

Alynn wrote on Oct 5^th, 2013 at 11:30am:

Please let me know how this worked for you...  my doctor is offering this for me and I am too nervous and not sure yet if its something that I want to try...  good luck!

Yep, had it done yesterday DR said it may take about 24 hours to kick in, But  I think it's working have had some shadows today and one that got a little more intense but in my book it was no more than a 2 on the kip scale.  I deliberately over did it today and got over heated to boot, wasn't planning on the over heated part though.  My Dad on the other hand is having a rough day with his, he's the type of guy that will not used any medication other than aspirin and then he'll go into a kind of trance and pass out until it's better.  The reason I mention my Dad is usually we get hit around the same time...makes for a fun household since he lives with me.  :D  Anyway this is basically day 1 and I'm doing good so far.  Will keep you updated.  :)

The nerve block itself wasn't too bad, compared to a CH hit it was a walk in the park!!

Update:

Had K4 last night. 

Nerve Block last Friday...and

OMG OMG is it too soon to get excited?

24 hours w/o a hit WOOOHOOO!!  Normally on a day like today with all the pressure changes I would have had 2-3 or more hits by now. 

[smiley=clap2.gif]

Great that it seem to be working. Long may it continue.

Update :)

I'm smiling so that means mostly good news so far!

On Monday my post was a bit premature it seems, I did have a hit that night that I had to deal with, but I was able to nail it quickly and return to a good nights sleep. 

We had some storms roll through here so the pressure was trying to mimic a roller coaster and doing pretty well at it.  My poor dad has been about ready to bang his head a few times but I didn't even get a twinge!!!  Air pressure finally leveled off a bit today so Dad did catch a break finally.  WOOHOO  Things are looking up for me, now if I can convince my stubborn as a mule father to at least try the D3 if not the nerve block everything would be rosy.

Ginger wrote,

WOOHOO  Things are looking up for me, now if I can convince my stubborn as a mule father to at least try the D3 if not the nerve block everything would be rosy.

Hi Ginger,
Us men can seem like your  [smiley=deadhorse4.gif] but we
always give in at the end. Just don't give up. By the way
it's not nagging.

Hoppy.

Hi JustNotRight,
What type of nerve block?
Is it Occipital Nerve block?
What is injected? Betamethasone? Or what
I am doing at the moment GLOA or
Ganglionic Local Opioid Analgesy, (it’s a nerve block)
Using Buprenorphine, a relatively  “violent” alternative!
All that parallel to the Anti-Inflammatory Regimen (D3)

Michael

wildhaus wrote on Oct 10^th, 2013 at 1:06pm:

Hi JustNotRight, What type of nerve block? Is it Occipital Nerve block? What is injected? Betamethasone? Or what I am doing at the moment GLOA or Ganglionic Local Opioid Analgesy, (it’s a nerve block) Using Buprenorphine, a relatively  “violent” alternative! All that parallel to the Anti-Inflammatory Regimen (D3) Michael

It was an Is it Occipital Nerve block using Lidocaine with a little bit of a steroid, can't remember the name of the steroid just know it wasn't the one I can't take due to it messing with my blood sugars the wrong way.   Yes it was injected, in the back of my head on same side as clusters.

FYI today I really tested the block I had a small glass of wine, will wonders never cease?  I did not get even a glimmer of a shadow or a CH hit (alcohol has always been a trigger for me I haven't been able to even have a teaspoon of alcohol with out a CH hit for over 13 years!) so I had another glass and then one more just to triple check...can't be to stingy with science experiment testing in order to acquire accurate results  :D 

Tickled pink... or white in this case since it was white wine.

Big step, not just in the result itself but in the confidence to try something that has previously been something that resulted in a CH.

Mike NZ wrote on Oct 11^th, 2013 at 1:05am:

Big step, not just in the result itself but in the confidence to try something that has previously been something that resulted in a CH.

I was soooooooooo nervous but thankfully it was a celebration day anyway (we were celebrating my son's 25th b-day all be it a day late) and I had my family all here, so I knew if anything went haywire they'd have my back :)  My son who never drinks and his g/f who also never drinks even had two glasses of wine with me and of course Dad had to join the fun too lol 

Everyone's always told me that I have Brass ones haha

Emailed Dr an update... Still doing well and have only had the 2 hits after the nerve block WOOHOO!   [smiley=clap2.gif]

Dr. Rozen want's to do a series of them on me.  Anyone else had a 'series' of the occipital nerve block done?

Im really glad to hear that you are doing well and that the nerve block has helped.  I am seriously considering it getting one myself.

JustNotRight, can you give any updates on the occipital nerve block treatments that you have received? I'm in NJ and would definitely make the trip to PA for the treatment. 

I was researching on The American Academy of Neurology's website tonight and came across a pod cast from Sept. 2013 of Dr. Rozin speaking about the nerve block. He is located in PA so I assume he is the same Dr. you went to.  He appears to have great success using the nerve block on CH patients with some experiencing a complete break in the cycle. He uses lidocaine and kenalog in his block.

Here is the link for those of you who are interested to hear about the nerve block. You can fast frwd to 19:20 which is where Dr. Rozin begins. 

The pod cast is "Delayed Recall - September 2013 - Headaches I"

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

I guess you can say I had a series of ON blocks. I had 17 bilateral Occipital nerve blocks. The very first one halted my cluster attacks for 17 days before returning. After that initial block, NONE of the rest of the ON blocks helped me at all.

Hoping you find relief.

PS. There are 2 different doctors named Dr. Todd Rozen. The Dr. Rozen that you see, was he formerly a doctor at MHNI and is he located in Pennsylvania now? Just curiou. I'm wanting to speak with him again.

I4B

Edited for grammar due to sticky and non-working keyboard keys  ::)

Hi Ginger. So glad your ONB is working for you. Just had my second one last Friday, and I'm waiting for the good news...which means I have had several hits since then. Not at the same intensity of those prior to the ONB, but hits none the less. Like you, I'm hopin' and prayin' for a remission. Good luck and God bless. lance