Welcome to the family Bill.
The "worse year after year" has been my experience over the years, so finding coping preventers and abortives are important.

Try the O2 again as you say you have been using it improperly. Get the correct mask and a regulator to give you 15 litres per minute and get on it at the first sign of the onset of a cluster attack.

Secondly you need to get a preventer that will lower the intensity and possibly the frequency of the attacks. Many have sucess with Verapamil.  If you have  pre-existing heart conditions as you eluded to, this may not be a good choice. Talk to your Dr.

You said you tried Topamax which can be effective, but during the ramping up to the required dose, (which can take several weeks) you may feel somewhat disoriented or dopey and forgetful and depending on your type of employment, this may present a problem.  Should you and your Dr. wish to try this one again send me a private message and i could help you with some first hand tips to make it easier to handle.

Do not worry what "other" people think...come here where we all know what you are dealing with and we will give you the support and understanding that the "others" cannot. Isolation and depression will make the headaches even worse so please stay tuned into the forum here.

Good luck and i hope remission comes soon.

Paul

Thanks all- its so refreshing to see others here to help.

question on the non-reb mask.  is this something typically carried in medical supply stores?  I got my O2 in the past from Apria, and they always gave nasal canula with it.  Just wondering if this is something I need to get from elsewhere.

Bill

Excellent, thanks JPC!  Have an appt with my neurologist tuesday and will get a new script written for the O2 and i will keep my fingers crossed.

Thanks!
Bill

Ditto what the others said about the O2. The nosey thing doesn't work and you need the flow rate to be at LEAST 15 liters per minute (25 is even better). Hit the O2 at the FIRST sign of a shadow (or headache).

I've been on topamax since 99 (I'm chronic) and take the WHOLE dose at night before bedtime, so I've not experienced the dopey feelings that some do (maybe it's just me or maybe it's taking it at night - don't know but it works for me).

Another abort you might try is Red Bull (energy drink) at the first sign of CH. If I get a hit that's above a 5-6 to start I usually chug a can along with the O2 and it works for me.

Ergotomine (Cafergot) has worked for me better than Imitrex and doesn't seem to have the side effects of the trex. It's an old drug and most docs don't prescribe it unless you ASK for it. It's cheap (guess that's why they don't order it up any more). I personally think it works better than trex, but that's just me.

Hope this is a short cycle for you and you'll be PF soon.

Hugs BD

O2 is here-- praying for success tonight for my 11pm/4am/6am visits.  One last question- should i inhale thru my nose, mouth, or both?  Or does it make no difference?

Hi Bill and Welcome

  I will assume you got the standard non-rebreather mask from your supplier.  First, one side will have a little round rubber valve covering the exhalation holes, and the other side will be open.  Remove the one rubber valve and save it if it's the same size as the inlet valve.  Then tape up the holes on both sides.  You want to get 100% 02.

  With the mask set up this way, you hold the mask tight enough to your face for a good seal, and inhale, squeezing the bag as you do . . . NOT to force 02 into your lungs, but to know when the bag is flat.  For instance . . . if I wake with a Kip 5-6, the first inhales are quick 1 1/2 seconds.  At 15 lpm, your regulator will fill the bag in about 4.5 seconds.   So . . . I'll hit it fast at first on the inhale, and exhale 4-5 seconds to let the bag fill, then repeat.  After a few minutes, I'll start long inhales (3-5 seconds) . . . which means you're getting all the 02 in the bag, plus the 15 lpm it's delivering during that inhale.

  If daytime and caught early-on in the attack, I'll usually start at 12 lpm and breathe regularly and deeply.

  Oh . . . almost forgot . .  when you exhale (since you've taped the exhalation valves, you just crack the bottom of the mask enough to do so.

  The masks that are now available are much more effective.  I have two Clustermasx (no longer available) which were (and are) much more efficient than the standard non-rebreather . . . there are others now (see link above) far superior to the models the med supply stores supply.

  I've also found that an ice pack moved around the affected side tends to help me get a faster abort.

     Be Safe,   PFDANs

       Richard