Hello all, I have been creeping here for about a week.  My husband has been suffering with headaches, and in my desperate attempt to try to help him, I came onto a description of CH which described him to a tee!  He is 47 (soon to be 48) and is in his second bout.  He had a bout in the spring and went to see the dr, he had a ct scan which was clear and then the HA stopped.
He started again about 2 weeks ago.  After finding this site we got him back in to the dr's yesterday.  He was given a 5 day dose of prednisone, and supplied with oxygen.
The problem is that the oxygen only goes up to 8ml/m and the mask is not the kind I see recommended here on the site.  He also hates the rubber smell of the mask!  He did get some relief with it last night though, so that is good.
I have many questions for all of you, but my first is this... if he is having a shadow before he goes to bed, should he take the oxygen then, or wait till the real HA starts? 
We are leaving on Monday, for 2 weeks at our cottage in Michigan.  I am considering ordering him a non-rebreather mask to be sent to the cottage... any thoughts on this?
The doc is making a referral to a neurologist, but that will probably take months!  In the meantime, I am on a quest to help him get these things under control!
Peace

Hello & Welcome to Clusterville

  . . . . and thanks for being a supporter.  It was my wife who found this site for me 2/02, after 13 months mis-diagnosis, non-working meds, multiple tests.

  Good that he's had the CT . . . to rule out other potentially more serious conditions.

  Also good he has the script for 02 . . . but yes, you should get a non-rebreather mask ASAP . . . far more effective than the rebreather, plus he's wasting 02 when he exhales.  Do get an Optimask with the big green 3 litre bag (links on the site - $27.50 - designed for clusterheads).  Also, go to ebay and order a 15 (or better yet) 25 lpm regulator . . . will look like the 8 lpm regulator he has now . . the combination of proper mask and regulator will allow him to hyperventilate with the 02 and kill the beast in minutes if used at the first sign of attack.

  And yes . . . use the 02 to knock out the shadows . . . don't wait for a major hit.  CH attacks can ramp to the "dance" stage in minutes.  Have your doc write a script for 02 that you can use at your cottage location in Michigan . . . you don't want to run out of 02 and not have access to more cylinders.  The standard "E" tank (about 3' tall with the little cart) holds 680 litres of 02, which will provide 45 min of 02 @ 15 lpm . . . that's enough to abort 6-8 attacks if caught early or two attacks if major hits.

  The doc didn't prescribe a preventative?  I personally haven't used Prednizone, but usually it's prescribed as a temporary prevent to control the attacks, and tapered down to zero while a preventative (like Verapamil) is tapered up to effective levels in his system.

  Read, read, read . . . ask any questions you may have.  We DO understand his pain.

   Be Safe,   PFDANs

     Richard

Hi!

Yep ordering him a mask and regulator for the vacation sounds like a very good thing to do.

If you can afford it, a demand valve system (which includes a mask), is optimal, and considering how much we spend on health care and the seriousness of this condition, I have to ask why not get the most effective O2 relief system for your hub?

If you're on a tight budget though like some of us (me! :D), I endorse RichardN's mask and regulator recommendations above, with the 25 LPM option.

One of the preventatives that is not only harmless, but probably good to be taking regardless, is the CH D3 regimen. Here's a link to the discussion topic here on that if you haven't run across it yet:
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We have plenty of other tricks up our sleeves too so please keep hanging around here.  :)

A big hug to you for being such a proaactive supporter...like many of the stubborn men on this board, it was my wife who actually found this site and forced me on to it! ;)

The prednisone may stop the headaches completely, while he is on it. We generally refer to prednisone as a "transitional" med. It's bad news long term as it can really screw up joints and internal organs, but short term not a real problem. Many of us do a 10-14 day prednisone taper, which will give us up to 100% relief from the beast, while we start building up our prevent med in our system. The most common first line prevent is Verapamil, followed by lithium and topomax. All can take up to 2 weeks to become effective in your system.

Do look closely at the D-3 regimen Jeeber referred to, it's been providing a lot of relief for members of this board. Go buy some energy drinks, I prefer Sugar Free Red Bull, but any containing the combo of caffiene and taurine will do. Chugged at the first sign of a hit many can abort or really reduce an attack. I keep them in the glove box of my car when I'm on cycle.

Read, read, read, knowledge is your best ally in the fight against CH. In a short time you'll know more about the effective treatment of CH then 90% of the doctors you'll see. We'll help you all we can.

Joe

  Well duh . . . bejeeber's right . . . just woke from a nap when I sent previous message.  I'm on my 3rd PF day without a slammer using the D3 regimen . . . have been getting hard daily/nightly hits since June, so am definitely on the D3 bandwagon.  The few (two) shadows I've had were easily killed with the 02.

  Does hubby know his triggers?  For most of us alcohol is major trigger for CH.  Episodics can drink out of cycle, but NEVER in cycle.  Some chronics can imbibe . . . I can't (quit 2/02).  My other triggers are exhaust fumes, solvents like carb cleaner, brake parts cleaner. 

  Be Safe,   PFDANs

    Richard

Get the non rebreather mask, you won't be sorry. If possible look into a demand valve. They are not cheap, but are well worth the money. I would not part with mine. Best thing I have every found for taming the Beast.