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

I'll be interested to see the answer to your question. My family Dr wondered the same thing since low O2 levels when you sleep seem to bring on a CH. I haven't run it by my neuro yet.

As for the steroid taper..I flat out refuse to do it due to the damage it does to your system. Plus as my neuro said..in a lot of cases when you stop, your CH will return.

P.S. don't give up on the D3 regimen..took me forever to get my D25 levels up but I am now PF.

Judy

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

Have you had your D25 levels checked yet? Once you know where you stand PM Batch so he can guide you as to dosage.

So glad you have O2..like a dummy I went for years without trying it. Stupid, stupid and more stupid! Although my hits were bad, day and night this time..O2 beats sitting outside rocking and crying until they end!

Judy

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

It's been discussed several times over the years, no one has had any success with it yet. :-/

Joe

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

I tried it for a month and it didn't help...

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... 

Since one of the key mechs of our O2 treatment is not necessarily consistent blood oxygen levels but achieving a vaso-constricting effect through fast and large quantities of O2 it is unlikely to work (never has for me).

The longer you stay on O2, even after the attack is over, the longer you keep the beast at bay. I have made the experience that staying on O2 for less than at least 5 mins after the very last twitch can bring the beast back within less than an hour.

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

The longer you stay on O2, even after the attack is over, the longer you keep the beast at bay. I have made the experience that staying on O2 for less than at least 5 mins after the very last twitch can bring the beast back within less than an hour.

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.