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

Jason,  Welcome to CH.com, sorry you had to find us but glad you did. First you must know for sure that you have CH. The links on the left will help you with that but a good Neurologist (headache Spec) is best
Take the 'cluster quiz'. Narc's are not what you need for CH, they will NOT stop the pain, and will add to the problem re: trigger rebounds etc.

Some pointers: Oxygen is the no. 1 abortive we use, for aprox. 70% of us it will stop one of these in it's tracks. Used at 10-15-25lpm with a "NON-REBREATHER mask as soon as one starts.

Alchohol and pot are big triggers and should be avoided. Some foods also are triggers for some. It sounds like you are having a rough time, hang in there. There are things to help. If you can get Oxygen asap and READ, READ, READ, READ, on this site.

Again welcome to the best support you'll find for CH. ,Don

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

Jason,

Thanks,   Are you using the nose canula's? If you  are they are nearly worthless for CH. You will think I'm nuts but what you should do is cut the end off and stick the hose in your closed mouth and you will get much better results with the O2, and use less O2 until you get that mask. I've been doing O2 for 20yrs. It's strange that I had to switch O2 co. this year and they didn't have NRB's and had to order some.

Yeah the Imitrex limits, everything we need seems to have some limit. Don't know if you've read the Imitrex tip on the links to the left but it tells how to extend your Imi, using smaller doses.

Before I forget on the O2, take in as much as you can each breath then exhale as much as you can. I hyperventalate to get the quickest abort. Sometimes taking in a deep breath of O2 and holding it for a few seconds helps but is hard to do when in pain.

Don't know much about the LOX & concentrator. I have a large M-tank in the house and 9 E- tanks, a 25lpm reg on the E, and one that goes higher on the M, set up for on demand but I can't afford that yet,  with a O2pti Clusterheadache mask, clustermasx and several NRB's. The best is the O2pti, 3liter bag.

Good Luck, Don

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

Jason,

Clustermasx no longer available made in England. Order the Opti-2 from the link on the left of this screen "oxygen info". $25 plus shipping. Great. It is a brand new design made for CH'rs and is like the Clustermasx. Only better I think. I just got mine Thur.

I haven't tried the energy drink trick thing but do have Red Bull in the fridge for that purpose Thing is when I get hit I forget all aout it. Just get on the O2 and fight it out. I usually get woke up and go to the O2 and abort 90% of the time. You know I just felt compelled to help you in any way I can and will continue to do so if you need it.       , Don

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

Hey Jason,    Lifegas that sells the Opti-2 also has 25lpm regs. Don't know what they cost. I got mine from MedSupplies via Ebay by phone 800-689-9544 for $24.50 + shipping $34+Tlt. It does make a difference. Now there are more expensive one's out there but I can't speak for quality spec's.

Edited: Talking out of my head from sleep deprivation and an injection of medication. Please forgive any misleading fantisized info. What an ugly game we live.

Or I really need to try and sleep I 've been fighting the beast too and had 48hrs with 3 or so hrs of sleep until I gave myself a shot this morn and slept 5 from 1pm to 6. Hard but unavoidable.

Standing by for now, Don

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 got that right Max. Before my last post on this thread I did a shot of DHE and almost fell off my chair, and realized I was actually half in a dream state. Time to punch out & lay down. Sept 6 hrs. straight.

My brother told me today that he could tell I was close to totally losing it. Talking goofy stuff. Been on 60mgs of pred for 6 weeks too. On the taper off now so I may save my sanity yet.

Jason I hope everything is OK? Sorry I kind of lost it there for a few. Had to edit my last post a little, I couldn't find that cheap regulator I bought again but you can try calling that number, it works good on my E-tank. Well it's about that time for bed without a shot this time.      

May we all be Blessed with just a little sleep,   Don      

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.

Don ,

Yeah everything is ok so far. I think that that night was the worst for total Ch's in a while but the side benefit seems to be that I have had nothing but 1-3 shadows since then and even they are short and spread apart.

I currently have 2 non rebreathers coming from the Oxy supplier - so its a matter of wait and see

I am going to try and head to work tomorrow. My problem with work is 6+ attacks I have been having through the day. ( 4 months ) But I am thinking that Last Friday was my peak ( Ohh I hope ) I really want to get back to work !

At any rate thank you all again for your help and advice. I shall be armed and ready and looking for bear .. Oh wait wrong story line ... but the Beast will get a kickin when he shows back up .

PFDAN

Jason C

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

 
   

Trust me oxygen when it works for you will be your best friend for the rest of your CH days. I have been without insurance and gladly paid whatever price. Sometimes as much as $50/week. Not that much I guess when you can abort between 60-90% of the hits.

Glad to hear your getting the NRB's they are the ticket. I have the O2pti that my dyslesic (prednisoned) butt keeps calling the Opti-2 (incorrect) and it is way better than the NRB.

I tend to panic when I colapse the 1 liter bags after a wake up hit and this can send me to Kip-10 in a hurry. So far I have not colapsed the 3 liter bag on the opti.

Don't get me wrong the NRB is still a hugh improvement and I used mine last night (long story)and it worked so use it and I know you'll have success.                   Best, Don [size=14][/size]