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!!

dionysiusaeropagite wrote on Nov 8^th, 2008 at 4:57pm:

I asked about getting O2, and the doc said no, cause I smoke.

GRRRRR!!!!!

Get a new flippin' doctor!  Boy does that comment burn my tail feathers!  The fact that you smoke has nothing to do with you using oxygen!  (As long as you don't try to smoke, at the same time as huffing the magic gas!)  (It singes the bejeebers out of your nostril hairs)

I think the majority of us smoke.  We all do fine with it.

As a matter of fact, the first thing I do, once I get of the O₂ is to fire up a Winston!

Try to get him to see the light, if not, find another one!

Chuck

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

Many suffering from CH also smoke.  If you like this Doctor and feel comfortable with him, I don't think you should get a new one (yet), but I really would insist.  Smoking doesn't preclude using 02 to abort CH attacks - as the others have pointed out, you just need to take some basic precautions!

On the other hand, hubby and I were both smokers.  We both quit in September.  Don't want to be a preachy ex-smoker, but....  unfortunately, he has not seen a change in the attacks since quitting the cigarettes, but some do see reduced CH activity!

Laurie

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.

I asked about getting O2, and the doc said no, cause I smoke.

tell him ya quit or just fire the bum


As a matter of fact, the first thing I do, once I get of the O2 is to fire up a Winston!

I do the same

                                             PFD's On Ya
                                                   JPC
                             

Please forgive me for the following but it is all completely true.

Your Doctor obviously knows very little about oxygen.
1: Oxygen is a nonflamable gas. It is an oxidizer and will add to the fire of a flamable object, but itself is not flamable.

2: It is a very rare case that a smoker catches there self on fire while using oxygen. How many have you or your Doctor heard of? I have heard of only one, in 20 years, at least in my area.

3: Of course you assured the good Doctor you would not be smoking around the oxygen I would hope.

4: This Doctor would rather not give you a relatively harmless treatment, and continue one that is proven to be quite harmful when taken for long durations.

As I said please forgive me but I can't remain silent to such treatment.  My prayers to you, Don

wow, you all seem so hostel about the O2.  I told the good Dr. that I agreed with him about the smoking thing and it being a bad combination with the O2.  On top of that, I must also agree that since I am about at the end of the cycle, I can hold out with what I already have.  Truth be told, God gave me this for a reason, and there must be SOME good that comes from the pain.

When I think of how so many people suffer throughout the world, and throughout time, it makes me quite humble.  

Today, I was installed as Lector, one of the first steps to priesthood.  I had two headaches this morning before instillation.  These headaches gave me the opportunity to suffer with Christ in the Garden.  In turn, it made the instillation all that much more of a spiritual gift.  

I thank you all so very much for the support and the wonderful words of encouragement.  I know how passionate we Clusterheads get when it seems that others either do not understand, or don't want to understand.  I will definitely take all of this into consideration.

God bless you all!!

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

wow, you all seem so hostel about the O2.  I told the good Dr. that I agreed with him about the smoking thing and it being a bad combination with the O2.  On top of that, I must also agree that since I am about at the end of the cycle, I can hold out with what I already have.  Truth be told, God gave me this for a reason, and there must be SOME good that comes from the pain.

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

Potter, i am sorry but you are out of place with your comment. >:(
if you cant show  a little respect for a man of the cloth then dont post.
to claim someone doesn't have ch because of doubt of o2's effectiveness is a pompous thing to say.  your not a doctor even though you seem to play one on ch.com.  
also to you and all the other veterans thank you, i plan to remember my brothers in arms and that freedom isn't free. before you post another pic of yourself  potter with the almost ultimate price you have paid (i honor you for that,sincerly) it doesnt excuse rudeness.

to my my brother in christ, i understand what you are saying about suffering in the garden and there must be a purpose for you having this, i am sure there is.  maybe it is to understand and feel compassion.

i also smoke and enjoy one after a hit, it  does relax me and i agree with potter on one thing. smoking doesn't have crap to do with O2 therapy.  go fight for it my friend/soon to be father. 8-)

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

Fr. Joe?  Linda here.

I've been gone a few days so I haven't seen this.

Yes Most of us get really emotional about our 02 around here.   That is because it works Joe.


Can you do this for me?

Lie to the Dr.   tell him/her you have stopped smoking forever.


Confession will be heard from 4 to 5 pm on Sat. in my PM box.   Absolution will be one Hail Mary and a couple of Our Fathers..


I am serious. The reason he gave you for not prescribing 02 is about as lame as it gets.  tought times calls for tough measures.  Tough measures call for creativity.    ;)

 

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

               Potter

It's not about being hostel.  The bottom line is that it works.  When people come to the website and disregard advice about the safest and cheapest way to abort a hit, it is very frustrating.  You will be a O2 pusher one day, it just takes a little time.   God Bless.


Regards,

Malcom

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

Skyhawk5 wrote on Nov 8^th, 2008 at 10:50pm:

Please forgive me for the following but it is all completely true... 2: It is a very rare case that a smoker catches there self on fire while using oxygen. How many have you or your Doctor heard of? I have heard of only one, in 20 years, at least in my area.

Don,

According to the NFPA (National Fire Protection Association), fires involving home use of medical oxygen account for about 1200 emergency room visits, 209 house fires, and 46 fatalities per year.  73% of these fires were started by smoking:

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By all means, use oxygen, but don't be oblivious to the risks, and for crying out loud, don't smoke around it!  The NFPA and the AMA both recommend that no one smoke at all in a home where medical oxygen is used.

Stay safe out there, friends!

Regards,
Jim

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.. ;)

Welcome Father, I will be the 1st to admit that im not as active in church as i should be, i may go 1 or 2 times a year and just to make you like me even more i will tell you im not catholic. Although it seems everytime this CH stuff enters my life i prey to god for it to stop, and go away, and it always does sooner or later, but the pain the lord has given me is so severe that it has led me to oxygen, and father it works!! I have fear of CH when im in cycle and i will lie to jesus himself if it ment saving my 02!! Im just a backslidder, and i dont think god holds it against me for doing what i have to do to stop it but im willing to take the risk because only god himself knows for sure the crazy insane helpless feelings CH brings, but i think he would be quick to forgive you for doing what was needed. Be Well...  Coach Bill

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

Welcome Father, I will be the 1st to admit that im not as active in church as i should be, i may go 1 or 2 times a year and just to make you like me even more i will tell you im not catholic. Although it seems everytime this CH stuff enters my life i prey to god for it to stop, and go away, and it always does sooner or later, but the pain the lord has given me is so severe that it has led me to oxygen, and father it works!! I have fear of CH when im in cycle and i will lie to jesus himself if it ment saving my 02!! Im just a backslidder, and i dont think god holds it against me for doing what i have to do to stop it but im willing to take the risk because only god himself knows for sure the crazy insane helpless feelings CH brings, but i think he would be quick to forgive you for doing what was needed. Be Well...  Coach Bill

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

               Potter