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        Cluster Headache Help and Support >> Cluster Headache Specific >> Greater occipital nerve stimulator
        
(Message started by: Jason_Taylor on Dec 21^st, 2006, 6:50pm)

Title: Greater occipital nerve stimulator
Post by Jason_Taylor on Dec 21^st, 2006, 6:50pm

Hello and Merry Christmas to all. I find it hard to come on here and to try to explain how I feel, especially because of the fact that I am dyslexic. I have been seeing my consultant neurologist, for the last few months regularly as I have been in such a state. We have been talking about several options to help me, I am chronic and have been for two years now. I have come to the end of all recomended medicaion for clusters and nothing apart from o2 has helped. I have had Epilim (sodium valproate) for the last month without much help, soon to try Methysergide. Soon to have a greater occipital nerve injection again didn't work at all last time. It would be nice to have some advice or suggestion from someone who has tried all these. My ch is just out of control and at the moment I just can't cope with it all. The people who live in England may have heard of this neurologist, through OUCH. His name is Peter Goadsby, is coming to a lecture in Plymouth in March and my neurologist is putting me forward as an "interesting patient". I don't know why I get these cluster headaches, my life is just on hold. I would appreciate any info from anyone who may have had a greater occipital nerve stimulator done, and does it work ? does it help? or is it just not worth it? Thank you to anyone who may read this or be able to give me some advice. Manchester city rules. Cheers Jason.

Title: Re: Greater occipital nerve stimulator
Post by davyp on Dec 21^st, 2006, 7:29pm

Hi Jason,

Merry christmas to you too.

Check your PM's

Dape

PS: I know manchester is a nice city but i wouldnt exactly say it rules ;;D

Title: Re: Greater occipital nerve stimulator
Post by UN solved on Dec 21^st, 2006, 8:11pm

Hi Jason,

I had a bi-lateral Occipital nerve stimulator implated in March of 04' by doctors from MHNI. It didn't help me at all. The electrical current seemed to be 'above' the pain. (It didn't get down deep enough to disrupt the pain.) For me, it was a total waste of time. :-/ Sorry

Hope you find something that helps!

Goodluck

UNsolved

Title: Re: Greater occipital nerve stimulator
Post by Redd715 on Dec 21^st, 2006, 8:18pm

Helen!!!!!!!!!!!

Stat!!!!

I don't know how to make links to particular threads so thats a lost cause, but I sure hope Helen gets here soon!

Jason...please hang tight. I'm not well versed on the UK medical system but I can assure you that Helen, our Staunchest IK advocate will be here shortly to get you sorted.

Till then please consider reading here...

www.clusterbusters.com

Title: Re: Greater occipital nerve stimulator
Post by LeLimey on Dec 22^nd, 2006, 5:31am

Hello Jason
We'll do all we can to help you don't worry. First and foremost I'm going to suggest you post on the support board at OUCH UK. You do need to be a member to use the member's board but anyone can post on the Support board. Two people there have had the ONSI procedure so will be able to give you their opinions.

In the meantime can you list all preventatives and abortives you have tried please as we may be able to suggest something else? The combined wealth of knowledge here is not to be sniffed at! No one is going to recommend ONSI lightly, no matter what you've seen recentl on the TV there isnt a single clusterhead who has achieved anything like that alleged pain free status portrayed there. The programme was a complete crock and annoyed most of us greatly as it gave false expectations.

How many hit's are you having a day and how long are they lasting? Do you use any other abortives such as Imigran injections as well as o2?

What neuro are you under in Manchester? I know of a couple of good ones in that general direction who have trained under Peter Goadsby. My son who also has CH is treated by PG and I trust and respect the man implicitly.

I hope this helps a bit, there IS a lot of hope for you and help for you, hang in there, we'll get you sorted ASAP and maybe, just maybe we can hope for a Christmas Miracle double Whammy - sorting out your CH AND curing you of your DEPLORABLE taste in football teams ;)

Helen

Title: Re: Greater occipital nerve stimulator
Post by pubgirl on Dec 22^nd, 2006, 6:08am

Hello Jason

I am so sorry you are having such an awful time of it. At least here and on OUCH when you say you are chronic people know what you mean without you having to explain.

I can't add much to Helen's excellent advice and questions but a couple of things occur:

If you think it may help to talk to a knowledgeable sufferer you can ring the OUCH UK Helpline on 01646 651 979 . Someone will call you back and two of the volunteers have had the ONSI so you could request a call from them. It is fine to ring even if you just want to howl! Every Helpline volunteer is also a sufferer so will understand how you feel.

You don't need to be an interesting patient to see Goadsby. If your neuro is OK with it (actually even if he isn't!) your GP can refer you to the Prof and his team at Queen Square. As they are the experts and your neuro is struggling, it seems like a good idea.

Wendy