R we lepers?

Our sorely missed Mike had a CH attack whilst under general anaesthetic. I'd personally argue being concious during the procedure is the logical conclusion to your dentist's pessimistic scenario.

O

OMG Phil I didn't think that possible! I am having the same issue about a cataract op and their insistence to do it under a general. My worry about both just got a lot worse. How have other sufferers sorted these situations out? I can only think to go on steroids to avoid the chance of an attack during either. But the med prof are not keen at that suggestion either.

Hi Lisa, your dentist won't take the risk of this triggering an attack. I developed chronic SUNCT after extraction and implant and Prof Goadsby told me that sensory inputs from the trigeminal nerve are part of the picture. Can you get definitive advice from your neurologist? We're not lepers just sensitive to certain treatments that's all. Hang in there!

My neuro is PG too. I thought other OUCH members would have come across these problems before and been able to pass on the advice they'd been given. I guess I better email his sec and get some guidance in writing for the local hospital to follow since they are clueless about CHs. Thx anyway

My husband (CCH since 2008) has never had any such nonsense about dental work - or perhaps I should say what I percieve as nonsense! He has had dental work carried out in the usual manner when necessary, including an extraction, and the dentists have had some understanding of CH.

It sounds to me like a complete overreaction driven by the far too common complete lack of understanding. If cluster attacks can occur under GA then there is no point going to those lengths. Like everything else Clusterheads do it just needs a bit of strategic thinking through about scenarios that could arise and how they would be managed should they occur.

Surely, logic dictates that sometimes dental work needs to be done and if an attack occurs dental work simply has to stop until the attack is over......which would also be the case under GA.

Perhaps what is needed is a expert to write a sensible, rational and authoritative set of instructions for such situations?

Wishing you all the best and also wondering if budgets in our now fragmented healthcare system have a part to play here.....maybe the dentists business plan would go wrong if they had to hang around for a cluster attack, but perhaps I am over cynical.

Harriet.

Basically, we constantly come up against ignorance from health professionals. I'm not allowed to give blood because of such.

Couldn't agree more ! After all if they insist on a GA, why not do the tooth extraction, then the cataract op - too difficult (forget risk to patient). Intend to get cleat guidance from the prof in both cases stating awake is best and health professionals (NOT ME) should administer sumatriptan injection if anything starts - sorted ! Well, one would hope so.

Many thanks all, for taking time out to let me know of your/others experiences.