I used to come to the old forum years ago but never got around to revisiting the update.  Life potters on, but gradually as I get older, while the remission periods get longer, (15 months) the cycles, (2 months) are just as brutal as they were when they first started - and that's around 35 years ago.

Since I was first diagnosed I've survived (quite well, really) by using Cafergot, but this has now suddenly been withdrawn - I'm in the UK, but I gather this is a worldwide thing.  As a consequence I'm trying out Imigran nasal sprays, etc, for the first time.  Not too bad if I get the timing right, but always a sense of panic if I don't have enough to hand in between each prescription.  Issabitch.

Am now four weeks into the current cycle and can look forward to (???) perhaps another four or five weeks.  Then I'll start sleeping again, thank you !!   

I didn't know that, Hoppy. 

I'd assumed prescription only, but then here in Wales prescriptions are free, very fortunately.

Yes, timing is everything with the tabs though they don't seem to work too well on a full stomach. Or at night when the attack is well under way by the time I wake up.  That's when I need the nasal.

Welcome back! You sound a lot like me, in my mid 50's now, 35 years of dancing with beasty. The last 3 years pain free which I attribute to the latest and greatest around here, the "Batch Regimen":

Follow this link to the medications section of this board and read the post 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe

Thanks all.  I'm seeing the medic tomorrow and will try to get a prescription for the high dose D3 and will ask about Melatonin.

I registered with Ouchuk years ago but was seriously put off by their use of text filtering software.  It's an inane practice to automatically change 'cocktail' to 'thingietail', but then that's team GB for you.  I generally prefer international forums.

Thanks, Bob.

UK docs may not be so well trained, but then neither are the neurologists.  I've seen four here over the years and only one was up to speed on CH. 

Some ten to fifteen years ago I tried courses of calcium blockers and beta-blockers and pizotifen, but either to no effect or with untenable side effects - stepping off pavements towards fast moving traffic is not to be recommended !!  And O2 is not advisable with COPD.

The one thing that quickly cut off a cycle brilliantly well one year was a course of corticosteroids.  But it only worked once - the second and third years it made nooo difference at all.