I offer my sincere apologies for not being around for so long and for posting something so downbeat but am rather depressed on my return to find that unless someone can tell me otherwise, there has been NO major development of any kind in CH treatment in those 2 years?

Have I missed something? Please tell me I have?

Have seen Goadsby's lecture on here, and not meaning to criticise CH'ers greatest ally as he is a legend and may be the person who makes the breakthrough we need but I heard all that 4 years ago.

You can still only get the "dinosaur" triptan in injectable form and only the two oldest in nasal.

We are still battling to have 02 therapy recognised as a real treatment and sufferers are still fighting to get the cheapest, least risky abortive of the lot AND the masks that are provided don;t work properly/aren't good enough so we have to buy our own

We are still no nearer identifying the rogue gene or genes responsible for this wretched condition

There are more ONSI's being done  but results are still about the same as they were 3 years ago- i.e. patchy

Research into alternatives still a total uphill slog?

I know 2 years isn't long but surely there is something????


W the B

I think that's largely an accurate assessment.  

There have been some folks here who have been pushing the envelope in oxygen therapy--testing higher flows to decrease abort times, and tweaking the equipment to make 02 an even more effective abortive treatment for more of us.  Very valuable stuff.  I'm hoping that Batch and Chuck will weigh in on this.

Perhaps Bob Johnson will have something to say regarding trials of new medications as well.

Best,

George

I missed out the CGRP antagonists research but that was started 4 years ago and I can't find the progress

Dr Goadsby did mention CGRP in his lecture but says it is still a year away from approval.  This is the most significant development recently.

-Dennis-

In addition to the value of this manual, Robbins' site is one to check from time to time for recent developments. He tends to post articles, etc. on breaking developments.


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wow, that was a total buzz kill of a post, but your right,  there is slow progress, but when i 1st got this all i had was asprin. Today i got my 02 and rcseeds, but in the cupboard is 4 shots of imetrex and a script of preds just in case i need to hit the panic button. It is what it is, you got it, i got it, and so does the people invovled in this room. Who knows you may be the person who finds the common anwser for us all, so keep working because i feel good knowing we have so many people looking for the very same needle all in the same haystack. Coach Bill

Cheers Coach Bill!

I'm so sorry, it was a bit of a selfish 'downer' of a post but I really thought I might have missed something and two years of posts was a bit impossible to catch up on.

You are right, there has been so much progress in the last 20 years and CH'ers are much better off than they were, it just doesn't seem to be moving much in the last 3 or 4 and the "why" explanations still fit on the back of a postage stamp i.e. "you were born with a dodgy gene and your hypothalamus is abnormal".

W

pubgirl wrote on Aug 30^th, 2008 at 8:33pm:

Have I missed something? Please tell me I have?

You missed giving and receiving moral support.

Charlotte

Unfortunately, Pubgirl, you are right, mostly.  The biggest changes I have seen, since you last posted, regularly, is the improved methods of delivering the O₂, and a lot more awarness in the medical profession ... Still not great, but the word IS getting spread, and that is a good thing!

Chuck

Wendy,
Big picture, dear...let's look at it.
I am not a person of statistics, so hopefully someone with those numbers will come behind me and help... but here's what I know.......more people are arriving daily at CH.com.......Clusterville takes on more and more each day.....Clusterheads are coming out of the dark, and joining here in droves. Charlotte is right.......there IS alot of common commiserating-and support and concern here- more than ever before!
To that end, we have Goadsby, who attended the last Conv, and is dedicated to helping Chers find a cause/control/cure.....
Yes, it is horrible that people like yourself are still suffering miserably with CH. The progress IS slow.can't get around that, BUT.remember, the sheer number of sufferers, all pushing/hoping/begging for a cure, as they gather, their voices get louder, more research monies become available, more Dr's become aware, hospitals develop protocol, which negates the old'must be a drug seeker" attitude, and genuinely searches for some relief.......

You did right, Wendy..you reached out here when you're hurting and frustrated. We will do what we can to help you through the tough times........until that cure comes down the pike........and it will!!!  Numbers and awareness are the beginning, an understanding shoulder, some new coping skills and perhaps some laughter will have to tide you over till then......while the progress is happening.

Wendy, I know you to be one of the strongest of the strong! If you need my strength for awhile, it's yours. Take a deep breath, be sure to keep up your strength, get rest when you can and eat right, so you have what you need to fight.
Here's a hug, hope it helps.........I'll be thinking of you and send vibes across the pond........
PF wishes to ya!
Cathi

Actually I 'm really fine everyone, I promise faithfully. Thanks for caring though. I genuinely am not here because I'm not coping and I'm sorry if it came over like that.

I feel guilty for being away but politics and infighting at OUCH UK and ch.com got a bit too heavy for me for a while, so when I became CH free I enjoyed pretending it was all a big mistake and I never had it at all, and that got to the point when I had been away so long, I didn't come back

I am genuinely sad (depressed was too strong a word- sorry, it is more "sorely disappointed") that there doesn't seem to be anything new, or even new in the pipeline.

I am one of the lucky ones because the aborts work for me and I have no trouble at all getting them, and I never have needed to go beyond that.

It is those who are chronic or can't abort easily or are alone who need you most.

I don't do the support stuff well, not enough patience and perhaps a bit too "British" for that but happy to do as much as I can of what I think I do best- asking the right questions, challenging preconceptions and, in the UK, keeping people informed of their rights.

Love to all, you are the nicest, most supportive bunch ever.

I promise I will ask if I do need help, but I really very rarely do

Love

W the B