Hi all!
Sorry if this has been dicussed before, I'm fairly new to the boards and did a search but couldn't find what I wanted....
My husband (age 48) has been an episodic sufferer for about 18 years.  Most remissions have been between 12 and 24 months throughout.  This year went haywire.  On and off since January with no end in site.  We are afraid he is turning chronic  & just when we thought the beast might be leaving due to his age!!!   His newest neuro doc is going to do an occipital nerve block.  I've read up on it; seems to be very low risk procedure with few side effects.  BUT has this helped anyone else?  It seems if it worked that well we would have heard of it previously in all our research!!!
Any advice appreciated!

Patti

Search for threads here by Wildhaus (Michael).  He had a series of occipital nerve blocks that helped quite a bit with the CH attacks.  But they weren't sure how many to give how often, and he ran into problems with his adrenal system because of all the steroids - fixable, but may be informative to a Doc.

In fact, I think he's got a link to that thread in the current one about the Occipital Nerve Stimulator.

Hope it helps your clusterhead!!!!!!!!!!!!!

Laurie

I tried it once and it hurt like hell, left my head numb for two days and the beast came back with a vengeance… I never tried it again for price vs short term pain relief value.

I’m not saying anything bad about it other than my experience with it.

Best, Rolo.

Gary had the same experience, but include a large lump on the back of the head that hurt in addition to the CH.  He tried two more times, just to make sure though.

Didn't want to be discouraging, though, because it has helped people!

Laurie

Thanks guys!  Wednesday a.m. he is having the procedure done...Doc also put him back on lithium and prednesone (which usuallly breaks his cycle).  So...we may not know right away what worked if the beast goes into hiding, but the Doc says the key now is just to get them stopped if possible and we're on board with that!!  

Best of luck tomorrow!

Wishing your clusterhead PFDAN,

Laurie

Hi Pat, my hubby has had quite a few nerve blocks done, (next one due next friday)

he has had no  adverse effects from them, just head numbness for a couple of days after (quite the norm due to the anaesthetic)

he doesn't get a complete pain free time out of it, but he does get reduced severity (ie, from pain level 8's and 9's down to 3's and 4's) for anything between 4 and 8 weeks.

he gets them reuguarly every 3 months

hope that helps

good luck tomorrow!!

Sandra

Hi Pat, I have had about 3 done and I dont think they help me at all. But my neuro assures me they help many people. Personally I think she is back there huffin laughing gas or something. I hope your hubby has better luck.
Sophia

I'm looking into getting one done. I'm hoping that I won't react to cortisol. I know I'm okay for lidocaine. But I react badly to prednisone (anaphylaxis, the exact opposite of what it's supposed to do.) Solumedrol, and decadron. All 3 are nono's for me.

My Neuro did not do one at first, not only because of the risk with my allergies, but due to the fact I did not react when he touched my occipital nerve.

He said that being that I didn't react to that, at that point it wouldn't help me. He said it'd do me utterly no good.

Unfortunately, now I do hurt back there... So, as soon as they've moved the clinic, they'll be doing one on me most likely.

If I react badly, fine, I can live with taking epinephrine every day until the stuff wears off. I need a break from the beast...

I hope this helps your husband when he has it. I know I'm looking foreward to getting one.


Mystina

Hi Patti,
I just got home and seen your post, I have an extensive experience using ONB (Occipital nerve blocked) I find some of the methods some what extreme, as in GLOA, or ganglion blocks, using Bupivakain or Buprenorphin. At a later stage I have been given ONB (Occipital Nerve Block)  using  an injecting of 2.5 ml  mixture containing a long acting salt of betamethasone (dipropionate) a rapid acting salt of betamethasone mixed with xylocaine (Verumgroup) using only ½ the dose and Lidocaine  to “flush” the rest of the salt. the treatment had a positive effect and I would have gotten about 120 days PF / year, unfortionetly I have developed extreme reaction to the betamethasone, but that was as I am very sensitive to the betamethasone.
I did post quiet extensively on this board, and on the old board, Links:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
on both links you will find links to studies as well as some pic. I hope this will help you some what…..

Michael

thanks everyone for your thoughts/comments/suggestions!  I have read through the past posts by you wildhaus...very helpful and informative.  So far so good with my husband...ONB procedure was 9:30 am yesterday.  Previously the headaches were coming pretty regular; 1:30 pm, 6:30 pm, 1:30 am and 5:00 am.  He's pretty sore at the injection site, but went through yesterday with none (YAY!!) and went all the way to 11:30 pm.  I didn't wake up for that (shame on me I know!) but he said it was less than 5-10 minutes in duration and he was able to quell it with O2.  He said he was alittle "unfocused" yesterday at work, but wasn't dizzy or faint.   Here's hoping.

Thanks again to everyone and for your support of each other and us outsiders!  I've been with him for 7 years; we just got married this year - I worry every day about him get feeling frustrated with myself because I can't help him - your input and thoughts help a great deal!

Pat, that is FABULOUS news!!!!!!!!!!!!!!!!!!!!!  Hope it keeps up!

Laurie

so pleased getting some relief!!!!


Sandra xxx