well it's official these things are kicking my ass!!!! i'm getting hit 6 times a day and they are all about 8 or 9's as far as pain goes. so far i have been hit 3 times today with my second one lasting almost 3 hours.
 i have no meds, no health insurance and it seem like everyone in my life wants to know nothing. i'm not really sure what i want from them anyway. attention? sympathy? kind words? none of that will help anyway. but it would feel good knowing i'm being thought about i guess.
 i'm slipping into a huge depression that no one understands. esp. my girlfriend last night i was getting hit pretty good and she went to bed. but again what do i expect from anyone nothing helps they just need to run there course....right? the only one who shows any compassion is my 2 year old daughter.
 it's the cutest thing, if i'm pacing around the house and she see's me she comes running up to me saying "dada, booboo" and sits right down at  my feet hugging my legs and won't move i just wish i wasn't hoping i would die at these times so i can enjoy it.
 it always seems i take 1 step forward and 10 back. i think the reason i'm having such a tough time is the fact i have been free for 8 years. i, naively that it was over but needless to say here i am again. frozen! i'm turning back into a lump of nothing. evrything is falling apart. yes i know i'm being a bit dramtic and this will eventually end but in the meantime......well i don't need to tell anyone here how hard it is.
 well thanks for letting me vent thats all i really needed to do. i'm going to go play with my daughter and take advantage of the little bit of pain free time i have. pf wishes to everyone hopefully the answer for us will come soon -Paul

Paul - When I'm getting hit, I'd rather my wife and son just went about their business. I know it pains them, too, but I'm not looking for sympathy. I'd rather stay focused on getting rid of it.

For the love of God, get yourself a big ol' tank of welder's oxygen, a regulator that goes up to 25 liters per minute, and an O2ptimask. You can order the latter right here at the ch.com store.

8 times a day at K8-9 is enough to kick anyone's ass. High flow 100% Oxygen therapy is cheap, and you don't need insurance to git 'r dun.

Now stop feeling sorry for yourself and do something to change your situation. Pity party over.

i hear ya brew just needed to say it is all i don't really have anyone to talk to that gets it. i'm making a appointment tomorrow for the dr. no matter how much it cost i gotta do something i'm getting my ass kicked. thanks for the pep talk lol -Paul

paul e wrote on Jun 1^st, 2009 at 5:08pm:

i hear ya brew just needed to say it is all i don't really have anyone to talk to that gets it. i'm making a appointment tomorrow for the dr. no matter how much it cost i gotta do something i'm getting my ass kicked. thanks for the pep talk lol -Paul

Sometimes I'm a little short, but I'm not apologizing.

O2 - Cheapest, most effective treatment. Little to no side effects. Low risk, potentially high reward.

I'm with Brew.

I'm not kicking you!  It's ok to vent, and sometimes we all need to.  Now it is time to get proactive and do something about it.  I know what it is like going with out insurance.  Found an oxygen supplier who gave me a great discount for paying cash.  He said the discount he gave me was less than the cost of waiting for the ins co to pay up.

When you go to the Dr have him check your Testosterone level.  Found out mine was low, and am getting a lot of relief from suppliments.

Jerry

Paul.
I am new to the board, but not to clusters. I have been a clusterhead since 1985, finally diagnosed in 1990 (took a while, women are not supposed to have clusters). I went into remission in 1998 and I truly can empathize with you as two weeks ago on Wednesday evening I experienced two attaacks out of the blue. It think it is a devasting ordeal to be pain free and sleep able for SO long and then all of a sudden you have this to deal with again. You have, during your remission, go on and gotten so used to arranging your life as though you have total control over it (well to a degree obviously) but suddenly out of the blue, it is the Beast and his shadows that have you in their grip and you feel so pulled by a very fast moving torrential river that is a cluster cycle. I learned a long long time ago that control is what each of us clusterheads need in order to stay sane.. at least to the degree that we can control it. By Thursday morning (two weeks ago) I made my calls to the home oxygen place, went and saw my doctor (GP this time who had no idea about clusters) and by Friday afternoon, they were delivering the O2 tanks. One large one for home, one portable for work and the outside world. Wrong masks delivered (venti instead of non-rebreather (and I know aboout this stuff regarding the masks et al because I sat in front of my computer on the Wednesday night (in between attacks) and all day Thursday and whenever I get a chance since, to research, research research.. Knowledge is Power and Power is control.. and if you know what it is that you need to do in order to get control of the Beast you are taking back some of that helplessness you are feeling) I already knew about the O2 from previous years, but at that time 11 years ago, it was a gentle breathing in of 8L/min, forget about hyperventilating(!!) that is a new one for me. But I am having 100% success rate with aborting the attacks by following the instructions for O2 use on both this forum and the OUCH web site. Research research research is necessary for you to educate yourself and you will feel a hell of a lot better. (This was a gentler way to say what the other two posters were saying.. get off your ass and do what ever you can to get that control back. It can be the difference between living and suicide.. beleive me, I know two men who ended it (this was years ago) because they did not see a way out from under the Beast.. KNOWLEDGE IS POWER AND POWER IS CONTROL My motto to live by.. thanks and good luck, a fellow clusterhead ;)

KNOWLEDGE IS POWER AND POWER IS CONTROL My motto to live by.. thanks and good luck, a fellow clusterhead  

Beautifully put!

Oxygen has completely changed how I feel towards CH. Knowing I can kick his arse takes most of his power away! Hoping it works as well for you.

Joe

thanks guys!!!! alot has changed in the past few days thank god. i got hit pretty hard monday and tuesday......monday i had a 3 1/2 hour and two 1+ hour headaches that were 10's and tuesday i got hit at about 730 am and had some serious pain for a good 10 hours but like i said things have changed a bit and i'm gonna post it on a new thread so other people might see it as well and hopefully be helpfully to some again thanks for taking the time to responding to my pathetic post and giving me a little kick in the ass -Paul

Paul,

If you don't have a prescription for oxygen therapy click the link below:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There are lots of home oxygen providers in your area.

Take care,

V/R, Batch

Thanks for venting. I often feel as if I am one of the very few who do that. This reminds me to bother my doctor for some 02.
Have a pain free day and I hope the beast goes and bothers someone who REALLY deserves it.
Sophia

o2 has given me my life back, just like the majority of CH sufferers here. You must get on it at the very first sign of an on-coming hit, and with at least a 15 LPM regulator and a non-rebreather mask or the much better o2ptimask.

Hang in there and feel free to vent anytime, we all are in the same boat.

  Barry

I cant agree more about 02, high flow, proper mask.  It can't hurt to have a decent portable abortive med like imitrex or whatever works too.  If the preventatives arent working try different ones, different doctors, whatever you need to do, but you'll find something eventually.  Until then, after, or forever, 02 usually works quite well as an abortive.