42 year-old CCH sufferer - I'm getting hit real hard right now (6-10 attacks a day, KIP 7-9) and aborting fairly successfully with my O2 Demand Valve system and hyperventilating, but that doesn't keep the beast away for long, especially over night.  Has anyone tried sleeping with an O2 nasal cannula to prevent attacks from coming? I'd still abort with high flow O2, but wondered if this has any potential to prevent the attacks. Just a thought. 

I'm current on verapamil (240 mg BID), cyproheptadine (20 mg BID), Elavil (200 mg QD), and melatonin (10 mg) as preventatives.  I just started on the D3 regimen (day 9) but have yet to reap any benefit from it.  In addition to O2, I also abort with DHE IM, but am limited to 3 a week.  Imitrex does me no good.  Just finished a round of dexamethasone and the Dr is not enthusiastic about another round.

Thoughts on other non-DHE and non-Imitrex abortives that can be self-administered would be welcome also.

Thanks.

Matt

Judy,

Thanks so much for the encouraging words on the D3.  It's hearing from others like you that took a while that keeps me going (I realize day 9 isn't a while, but it feels like it and seeing some respondents that had results in a day or 2 is discouraging when you're getting hit hard and are on day 9)

I get desperate enough sometimes that I do the steroids.  Yes, the headaches return, but sometimes I just need a break.  My Dr. wanted me to try gabapentin but I'm not real comfortable with that so I'm holding him off another week to give the D3 a chance.  He just called in indomethacin, which hasn't worked in the past, but like I said I'm at a point where I'll try just about anything.

Matt

I did the 'sleep with a cannula' experiment.
Tried it for a few weeks.  No noticeable difference in hit frequency.

I don't know about sleeping with the nasal canula, although I thought I remembered a thread on this a year or two ago. Try it; who knows? It might work for you. As for alternatives to DHE and triptans, have you explored the possibility of an occipital nerve block? It isn't a cure and the CHs do come back, but it's given me the most pf days in a row I've ever had. Months, actually. blessings. lance

Thanks to all for the updates.  I've tried the occipital nerve block several times and no relief.  About 20 years ago I had a RF rhizotomy of the trigeminal nerve and got 6 months of total relief, but the beast returned.  I had the surgery a second time and got no further relief.  For the record, I'm completely baffled how I still have no feeling at all in my face and eye on that side yet still get the CCH...

neuropath wrote on Jan 11^th, 2014 at 11:39am:


And to show just how CH can vary, I've found that staying on O2 after I've killed the CH makes no impact on when the next CH comes.

So it is essential that people experiment and work out what works for them knowing that for some people staying on the O2 can help.