Dearest Brothers and Sisters,

Well, I had my first ever neurology appointment yesterday.  The doctor is awesome!!!  In fact, I teach one of his kids one day a week as part of my apostolic work.  Small world eh?!

So, I talked to him for quite some time, and he seems genuinely concerned and extremely competent in diagnosing and helping cluster headaches.  In fact, he has SEVERAL patients who are Clusterheads.

So, Doctor gives me this lidocaine nasal spray and put me on another round of prednisone.  Since my appointment and my new meds,  I've had three headaches, one K7 and two K9's.  I must admit, I am incredibly weak at the moment ...

The first time the beast attacked me after I got my shiny new weapon, I brandished it before him and blinded him in his steps (it worked for those who don't like my poetical way of speaking).  The other two attacks didn't fare so well. 

I asked about getting O2, and the doc said no, cause I smoke.  I'm trying with all my power to quit, but after the beast has finally left, I'll tell y'all, and you can take this quote if you like it, "I enjoy a smokey treat of wonderment to relax me and calm my nerves."

I wish to continue to thank you all for your support.  I humbly offer myself to all of you if you wish for specific prayers from a seminarian.  I will gladly and joyfully offer up any prayers, be it for CH, or anything else that may be wearing you down.

God Bless you all!!

DITTO THE ABOVE!

  Another smoker here . . . ya just don't fire one up while you're huffing the 02 . . . and move around a little or wait a few minutes to let the 02 that's been absorbed in your clothes to dissipate a bit.  Basic safety . . . like you don't fire one up while pumping gas.

  You're not an idiot, and to refuse a script for a proven fast/inexpensive/effective abortive with few/if any side affects. . . really pisses me off.

  See if he'll watch the U-tube video showing a CH attack with & without 02.  Does he REALLY understand the intensity of pain we suffer? 

  You need to push this until he gives you the script . . . flood him with printed (and recognized) material . . . that's what I had to do.

  Be Safe,   PFDANs

     Richard

Yikes.........sorry, I can't buy THAT reasoning to withhold O2 from a CH patient at all.  Not a quick & easy thing to find another neuro, so do whatever it takes to get an O2 Rx.  Or you can always get a welder's cylinder and a regulator.

If you consider side effects of various available meds, anybody in the right mind (or well-versed neurologists) would go with O2.  O2 isn't perfect, but I can't imagine a CH sufferer trying to fight this without it.  There's really no reason to put up with this kind of pain without trying O2.

dionysiusaeropagite wrote on Nov 9^th, 2008 at 12:58am:



If you truly have ch o2 would be in your pantry lickety split,  smokin ain't got shit to do with o2 use.  Maybe ya just got a headache?

              Potter

thank you all again so much for your words of encouragement. 

I apologize if I offended someone, but here's how I see it.  Everyone needs to find the medication regimen that works for him/her.  For me, I am fine right now with what I have.  Perhaps if this cluster continues longer than expected, or perhaps upon my next cluster, I will work harder at attaining some O2 therapy.  But for now, I am happy with what I have. 

I think that Karl is right.  We are not doctors, and we must be careful at all times at insisting any type of medicinal regimen for anyone, we should also be cautious in insisting that someone's doctor is incompetent, and we must be especially careful in accusing someone of not having CH.  I like my doctor, and I am the one who chose not to begin the O2 regimen.  Secondly, CH is unique to all people, some have it more severe, others have it more mild.  My heart truly breaks for all those out there who have a more severe case than I do.  I pray for them daily, and I thank God daily for blessing me with a moderate case.

Thank you all again for your kind words, and your words of concern.  Being passionate about OUR condition is a good thing, it allows us greater compassion and also gives us a voice to the world, a world that is in darkness to our sufferings. 

God Bless you all, and may the Protection of Almighty God, Father, Son, and Holy Spirit descend upon you and remain with you always!

-Joe

I'm never out of place when I push oxygen.

               Potter

Phew what is a little burned skin and singed hair to a clusterhead anyway huh?

Did you tell the doc that you don’t smoke in the house?

The problem with O2 and smoking is that the O2 is a heavy gas that will (if used in bed) saturate the blanket on the bed.

I was shown an OSHA video at the doc’s office before I was given the O2 at home script.

Your doc sounds too inflexible on this matter.

As for fire, I’m sure that far more fires are caused by idiots putting frozen turkeys in hot fryers, than by O2 mishaps. It’s only a matter of time before they put warnings on turkeys or refuse to sell you one without a liability release.

Rolo..

coach_bill wrote on Nov 11^th, 2008 at 9:35pm:

      Who beat on ya and beat on ya bout that oxygen.

               Potter