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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Cluster Headache Help and Support >> Cluster Headache Specific >> Cronic CH suffer and (GON) nerve block http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1247317055 Message started by jay on Jul 11^th, 2009 at 8:57am

Title: Cronic CH suffer and (GON) nerve block
Post by jay on Jul 11^th, 2009 at 8:57am

Hi,

been a while since I have been on here, been a cronic suffer for 2 yrs now with no break. I have now had nerve block done for the last 4 months which is heaven! stops my attacks for about 3 weeks but my question is to anybody else who has had or has nerve block done is do you have any other problems after.

I also suffer with ankylosing spondylitis amoungs other things (how lucky am I lol) and evry time I have had the block I have had a major AS attack, has anybody else found problems or is it just me?

I would also love to hear from anybody that CH and AS or anybody heard of any link between the 2 the docs just say I am very unlucky but I wonder.

Thanks

Title: Re: Cronic CH suffer and (GON) nerve block
Post by wildhaus on Jul 11^th, 2009 at 10:27am

Hi,

See my extensive posting about GON......

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

END PRINTPAGE

and on the old board

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

END PRINTPAGE

Michael

Title: Re: Cronic CH suffer and (GON) nerve block
Post by Guiseppi on Jul 11^th, 2009 at 11:28am

AS, (won't even try to spell it!!!) haven't ever heard of that! Glad the block is providing you some relief, I remember the heaven I felt when we first discovered lithium was an effective prevent for me. It's really something to not feel helpless against this stuff. Welcome to the family.

Joe

Title: Re: Cronic CH suffer and (GON) nerve block
Post by jay on Jul 11^th, 2009 at 12:07pm

Thanks Joe, I know how lucky I am to get some relife from the nerve block such a amazing feeling to even be pain free for a couple of weeks. The only trouble is I go over the top when I have the gon and drive everybody mad and wont shut up lol

I do worry though having this ever 4 weeks what long term damage it will do

Title: Re: Cronic CH suffer and (GON) nerve block
Post by Bob_Johnson on Jul 11^th, 2009 at 2:00pm

If you are going to choose minority disorders, well, you have really gone all the way!!

Yes, I've had AS since I was ???? 13 or so. Fortunately, not a severe case but it was not diagnosed until I was about 35. Used Indocin with great success for many years until my gut finally started to rebel. Shifted to Celebrex (which is useless!) but always holding Indocin in reserve. Now that I'm 73, the AS has quieted very much but, to your question, I have never thought of any association between the two, never any experiences which would have triggered the thought.

(If you don't know it, there is an AS Association in California which would be worth supporting. Small group but tryng hard to foster research and education. Can find them on the web.)

I've also aged out of CH although, the last several years of active attacks, were perfectly aborted with Zyprexa. (It was my pleasure to introduce it to the group and we have several folks who have had excellent success with it.)

Title: Re: Cronic CH suffer and (GON) nerve block
Post by campergal on Jul 15^th, 2009 at 9:13pm

I haven't had a block but had steroid injections (so the doc said) into the areas and around them. Caused cataracts.

The only time I think it really helped was when I happen to be in for them and a attack started. It was terrible to get them then, areas are very sensitive during an attack, but it stopped the attack and I had some cycle free time for a few good yrs. It was at a pain clinic and the doc is no longer there.

Now they seem to be coming back, the phantom time is upon me. >:( >:( >:(