Evening Everyone


just got off another o2 session .. this one is getting meaner today.

The beast is visiting roughly every 1.5 to 2 hours now , and it seems hitting harder with every hit.

just started the pacing,running nose and right side sweat about  30 mins ago - O2 took care of that for a bit but have to wait for tomorrow to get a imitrex refill ... gah I should have checked the container in my bag ... it was used ...

This is the first time I acutely had the runny nose ( cluster side - Right ) yet this ch ride . I guess I have been episodic started in 2003 and then just as face the beast took a vacation for 5 years ....

So I sit here ( when I can stand to sit )  and wonder if the prend-taper I am on is working at all ... but then again I have not dancing long enough with the beast to know what is the norm for me ...

This ride started late Aug and has not shown any signs of stopping as of yet.  But I know this is only a ride and soon enough I will be let off

I guess I have to be glad I have a workplace that acutely cares about its employees or I might have been looking for a job a long time ago ( think I might have made a mistake and pissed off the beast .. I told my Manager I would be ready to hit work by monday )

For those of you wondering previously for this 4 month ride my GP was under the assumption these were just migraines and had me full of meds that didn't work and narco's.

lol I work at a call center and provide Tech support  - high level tech support , long drive to work and Narco's dont mix well at all .... sooo OUT went the narco's I dont like them to begin with

Im still trying to get use to the kip index so im not to sure where I stand on that ... prob 6 or 7 range and seems to be increasing each hit

well I'm out to get a bit of fresh air for the moment

Many PF days to you all and I hope that the Beast takes a long Vacation for you all !

Jason C

edited to change Oxy to O2

Thanks Skyhawk,

I have taken the cluster Quiz and the only point off on that is wanting a dark place .. since this dance started in early/late july I have been very light sensitive .

Been to the GP, Ophthalmologist and Neuro ( don't think he was headache spec, but was familiar enough with CH )

Yeah I kinda figured the Narc's were not working when after taking a round the pain was still there ( I stopped taking them anyway I don't like the effects )

I have been to the ER twice now when i was at max dose for the trex needles and I had no other aborts but then while I was there on of the ER docs stated that I just had an infection in my right eye ... hmm but then prescribed a dilaudid shot ... anyway at that point I didn't care one way or another and the dilaudid did put me down for 16 hours ....

Currently Using o2 at 15 LPM but don't have the non-rebreather as of yet ( its on the way )

right now Alcohol is not on the menu as I really dont drink much and I have already experienced the spike from it ... no thank you not again ( you live and learn )
I don't smoke the green at any rate, so that is not an issue.

As far as reading .... have been for the last 4 days and all I can say is WOW thank you thank you thank you !!!! You all have put together one hell of a knowledge base for this !!!!

I use some of the info here to brow beat my Neuro of O2 , but again he forgot to add the non-rebreather on the original Rx so I have to wait for that.

oh the Os is stopping it dead , the problem is that I have been dancing about 8 times a day now .. some times only 30 mins .. some times 4 hours ( now that I have o2 that will change )

That is the same prob with the trex needles .. they work for the 1 or 2 dances , but the other 6 i was on my own

Thank you all again for your support and information. I might try Kilowatt3's formula when I have the gumption to venture out again

On the Path of O2 ....

     Any sway one way or the other for compressed from LOX or just getting a LOX rig ?

- hmmm 1.75 "E" tanks down and 3 more to go .... Delivery person for the O2 said I might want to go either concentrator to fill my own tanks or just go LOX with a portable LOX can for taking to work 

Any of your thoughts and insights would be very welcomed ...

May your days and night be PF and may the sandman bless you with undisturbed sleep !

Jason C

Don,

Right now I am not using the nose canula's though that is what originally came with the tanks. Right now I have a rebreather mask that I have plugged the vent holes in. I am hoping to receive the non-rebreather tomorrow but if not I will drive to sacramento and visit a couple of shops there and buy one .

I will be looking into getting 25lpm regulator asap as the 15 does not seem to be enough but then again I dont have a non-rebreather with a res bag yet.

the Beast seems to be calming down a bit. I might even make a store run for some e-drinks just in case .

I did go to the O2 supply place and asked about the mask I was supposed to get , while talking to the company rep they asked if there was any specific mask I was looking for. I gave them the Clustermasx as well as the Opti line and I hope some good will come with it .

Thanks again for the info and help. It does make life easier


Jason C

Hey Jason,
     Sounds like you are having a bad time of this.  I hope your hits lessen for you real soon.
     I have yet to get the oxygen as my ch's are not lasting very long and are not as painful as they were either.
     Keep us posted as how this all works for you.
                         PF on Ya
                            JPC

The sleep deprivation is the worst part I think, At the start and end of cycle I usually get 3 hours sleep inbetween waking from CH. At the peak I rarely get more than one hour inbetween waking. There is only one thing to do; grit ones teeth and just hang in there, it is going to end. Then forget about the whole thing until next time. Keep a positive mind. Plan to do something for yourself when you go into remission, be it a big ass party, or fishingtrip with your buddies, just something to look forward to.

For your everyday coping, just get on with things like usual but be prepared for the next attack. Make it a priority to fight back, and wathever you do, do not let depression and anxiety get to you. I know it is easy to feel sorry for ourselves, but picture instead that you are a true soldier and you are kicking some beastly ass! That usually helps:-)

Have a extraordinary great weekend, chug down strong coffee and go out and play with your kids if you have kids. Or just enjoy whatever you normally enjoy:-)

R

You imply having to wait to see the Neuro to get the Rx corrected for the O2 mask. Need to call the office and tell his staff person of the error and it can be rewritten without a visit. (The doc has already made the decision for O2 and so no need to go thru that discussion again.)

You are correct: it may not be clear what your pattern of CH attacks is for some months, even years. Honestly, I think that paying much attention to this is worth the anxiety which this tends to generate. Focus, rather, on discovering what step to take, when, etc. which is most effective in aborting an attack.

Good luck at work tomorrow.  I'm pretty lucky that the majority of my hits are at night.  Of course, that makes me pretty much a zombie during the day.

I'm curious to see how these masks work out for ya.  I'm gettin with my Dr later today to get oxygen.  Been puttin it off long enough.

                                 PFD's ON Ya
                                      JPC