This cycle is destroying me! I've seen 3 gps trying to get an rx for o2 with no luck, and i'm out $100 cash each visit, I've hit one dead end after another trying to get welders o2 and all the attachments, all the doctors are giving me is imitrex, so im spending $225 every other day on a box, i can't pay my rent, i have a shut off notice for my power, i dont know what to do, i dont feel like i have any more fight left in me, i can't handle the pain, i can't work without the imitrex, so i wouldnt be able to pay my bills anyway...it just doesnt seem right! on top of that every cycle is worse than the one before, the pain lasts longer, the attacks are more often, and my cycle lasts longer. I've been suffering 17 years now, I'm on cycle 15. My first cycle was one month or so with one attack a day. It felt like hell at the time, but now its going on month 3, the attacks are coming 5-8 times a day, and without the imitrex they last about 2 1/2 hours! I'm only 31, im afraid of whats gonna happen when im 41, i wonder if the pain will just be constant! Any long term sufferers know what happens next?

Whatever you do, don't give up. Fight it. Keep looking for O2. We are all alongside you and know only too well whats happening to you right now.

Are to trying very strong coffee, sip all day. Taurine drinks. They can take the edge of the high level pain. Hot towels on your face can also give a sense of relief. If not ice packs on the back of your neck.

Have you friends and family who you can call on to help you even if its only to talk in PF times or to be around.

Keep coming back here. There are lots of people who can help you with advice, support and encouragement. You can get control of clusters.

My thoughts are with you.

Ellick.

As to the welder's O2... Go to a supply house and get a tank of welder's O2.  Someone can PM you the details on the valves and stuff... (I'd just confuse you  :)). Don't tell them it's for your headaches. We use it on the farm to WELD....

Red Bull (chug a can at the first sign of a hit) works pretty good at the onset of a headache (sometimes). '

Melatonin at night (15mg before bedtime) to help get thru the night hits).

You might try askig your doc for CAFERGOT instead of imitrex. It comes in pill form or supposotitories (suppos. are quicker acting). It's cheaper and (for me and some others) it has longer lasting effects. It's an OLD drug and most docs don't give it any more for some reason. Personally, I don't think it has near the side effects of trex and have used it instead of trex for the past 100 years.

Drink LOTS of water (look to the left and check out the Water X 3). It works for some.

As an old broad who's been chronic since 97, my heart goes out to you, but YOU CAN SURVIVE this. We're all a lot tougher than we think. Most of us have been right where you are at this time so we do UNDERSTAND what you're going thru. Hang in there and we'll get thru this... trust me on this one...

Hugs BD

So sorry to hear it. I have had my share of empty doc visits. Suffer for almost 20 years (started at 10, almost 30 now), they don't always get worse. I had to, at one time~ prolly the same circumstance as you. No funds and red tipped bills slammin every mail delivery. I readied potholders next to the sink for dabbing with water and tossing into the microwave. As hot as I could handle it I placed it on my temple, didn't even let it cool much, had to keep tossing it back in and apply. Seemed to take away alot of the intense pain.
Tossed every fragrant cleanser, detergent, hairspray etc..out with the trash. Even if I didn't think it was a trigger. I basically leveled my home to a zero zone. No triggers of any kind if I could. Out with the chocolates, coffee, colas, msg foods, no make up, no lotions, no dyes of any kind. Which being poor, was easier than I had thought.
Did the water x3, did produce small help, more as I continued to use it. I took advil routinely, even if I wasn't hurting at the time for a period of two weeks. Along with milk thistle to help the liver from all pills. It made it bearable, till things got back in my control.
Stress, although not always avoidable, I truely believe fuels the beast. And best thing I can recommend is elimanate the triggers, use mulitple 'little helpers' to tackle the big guy destroying the stress induced attacks.
I hope this helps a bit.

Keep up the fight, never back down.
I was given last cycle a Prednisone taper which stopped the hits in their tracks, and was on it for about 2 weeks. I was also given Verapamil which takes some time to get into your system.

Some take energy drinks to abort such as Red Bull, with 1000mg of Taurine (sp?) and Caffiene (sp?) in it. Slam it back as quickly as you can and at the very first sign of an on-coming hit.

I have o2 this time around and it worked every time to abort, and the Verapamil (480mg daily) is keeping the hits away for the most part.

I hope you can get something to help you, this place is a wealth of info and support, and you are not alone fighting this. I do not know much about getting or valving welders o2 but many have and will be along soon to help.

Never give up! ;)

 Barry :)

   Hang in there,  failure is not an option!  You are not alone and can handle it,  if you need help or support we are here just let us know.
   Here are some links you may be interested in:

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

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

The third site, PPA will help you determine what programs you are eligible through both GSK and your state:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

 Phil 8-)

Hang in there cristeenam.  Don't let this piece of s..t beat you.

you just got alot of info to help you fight.  Definately get ahold of the O2 from wherever you can get it.
PM me if you can't find any.  I know an electrical contractor in Vegas that could probably steer you to a supplier.

I know it's tough but never forget "it can't kill you and it always goes away"

                                              JPC

There's no reason why a welder's place shouldn't sell you a tank, and they can outfit it with a regulator for you. Tell them you do art. The reg I bought is a Uniweld RUH8210. With a short length of brass fitting and a small valve it works like a charm. Bat your eyes at the guy if need be.

IF THAT DOESN'T WORK: and Carl's friend for any reason isn't able to help you.... if you can possibly get yourself over here to LA (in a car of course) I will take you to a place that will set you up. It'll cost you about $300 but you'll then have your own 80 cubic foot tank and the proper accessories (you'll need to find your own rebreather masks elswhere, easy to do online). PM me if you want to discuss this more.

Mainly.... hang in there! You're among friends and colleagues here and we all want to help. We know what you're going through because we live it too.

Let me know if I can help.
David

Cristeena,

Pardon my French but it pisses me off when doctors shrug off requests for oxygen therapy from cluster headache sufferers.  Check your email and please keep me posted.

Take care,

V/R, Batch

thank you so much everyone, i got hit with a bad one last night and didnt know where to turn, im glad this site is here, but im so sorry that we all have to suffer, i used the links for the rx help, mabe ill get lucky and qualify, the doc i last saw said o2 was too dangerous and that it doesnt work for most, but from what ive read on here thats not true, he also said that it would cost me more than the imitrex, but i dont see how that could be true either....so tomarro ill try one more time to get an rx and go from there, if that dont work ill take up that offer on help with the welders o2....thanks again everone, you guys are the only ones who understand....theyre not just headaches

My GP gave me the same speech "I won't script o2 to you because it is too dangerous and people blow themselves up all the time with it"  >:(

I need my GP for other Non-CH stuff so I did not argue with him on this subject. Also twice during my visit to him he called my headaches "migraines" even though it was his office that referred me for a Catscan and a Neuro who diagnosed me with CH"s and it is in my chart. It was my Neuro that scripted me the o2 and now he has a couple of other patients that he gave o2 to thanks to the success I had with it. [smiley=thumbsup.gif]

o2, no side effects except a little dry throat, and no "cluster hangover", and no rebound hits either. I pray you get yourself the o2, it changed my life and I know it will change yours as well, for the better of course.

Let us know how you make out, ok? Good luck today! :)

There is little for me to add that hasn't been put here already.  One coping mechanism I use is:

Live life to the fullest between CH hits.  If you live in fear of the next one, you won't have much of a life and will have given in to the "beast".

Wishing you the best,

Ray

"how bad does it get?" Nobody can say how bad it WILL get.
How bad can it get? Are you SURE you want to know?

PF Wishes
b

I know this sounds cliche, but really keep your head up.   I've been there before.  In a bad cycle, no sight in end, no or low income, no insurance, mounting expenses and the weight of the world on your shoulders.  

I am really surprised your doctor can't get you a RX for Oxygen.  Even if the insurance says no, the doctor can usually intervene and state that it is necessary for treatment and no alternative is available.  You could try a different doctor with a fresh approach or perhaps see a neurologist as they may have more pull or other treatment options.  

Has your doctor tried any preventative medicines?  Imitrex and O2 are both abortives, and though very important, not a long term solution.  There is a cost associated with them and they just don't do the trick long term.  Imitrex especially with rebound headaches, ridiculous cost, etc.  For me, and a lot of people, prednisolne as an intermediary and verapamil as a long term preventative are highly effective.  They are also MUCH less expensive.  For me, once I get it to kick in, I can get away with 1 verapamil pill per day, and with my insurance it costs me $4 per month.  I have received confilicting information about imitrex being available in generic form in the US, but it's supposed to be, and is available internationally.  It was really cheap in Mexico when I was there last March and somewhat cheaper in Canada.  Maybe a road trip south of the border is in order for a stock of Imitrex.

As long as you get an O2 presciption you should be able to find some relief with it's cost.  Take the RX directly to the supplier and bypass your insurance.  I have great insurance and I do this because it ends up being cheaper over the course of a year than using the insurance.  Call around to different medical suppliers that sell O2.  Ask to speak with the manager, and explain your situation to him/her.  I found 4 out 5 were willing to make deals with me and 3 offered before I had a chance to ask.  I bought a regulator online and had 1 small tank.  I got a mask and hose, etc. through contacts here.  I then bought a bigger tank (for home... smaller for travel) from the supplier offering me the best deal.  I had to spend some out of pocket money, but it wasn't that bad.  Now, when I need a refill I drive the tank(s) to the supplier myself (they wont do the deal if they have to come to my home) and paty them on the spot for a refill.  They charge less not using insurance and cut even more of a deal because I asked, am willing to drive the tank to them and pay up front/regularly/etc.  I think you should try this as a short term abortive solution and look to your doctor for other medicine options.

As to your question... it gets about this bad.  The worst time ever for me was being in a cycle with little money, little help, little support and no insurance.  The support of people here and others in my life helped so much, and I was able to find alternative solutions to things.  I also found a program (NextRX) to get my meds cheaper, and I made it through, regrouped and built my life back up.  I prepared for the next cycle and it wasn't so bad.  The headaches are never good, but as you learn to cope and deal with them they become very managable, and life gets better.  I don't think you have anywhere to go but up, so that's the bright side.

You might also want to head over to clusterbusters as that might be able to help you, cheaply, for a long period of time.

cristeenam wrote on Feb 8^th, 2009 at 4:00pm:

thank you so much everyone, i got hit with a bad one last night and didnt know where to turn, im glad this site is here, but im so sorry that we all have to suffer, i used the links for the rx help, mabe ill get lucky and qualify, the doc i last saw said o2 was too dangerous and that it doesnt work for most, but from what ive read on here thats not true, he also said that it would cost me more than the imitrex, but i dont see how that could be true either....so tomarro ill try one more time to get an rx and go from there, if that dont work ill take up that offer on help with the welders o2....thanks again everone, you guys are the only ones who understand....theyre not just headaches

I dont want to tell you what to do, but you need to see a new doctor.  I bounced around a few times until I found a GP that was willing to work with me on this.  She is open minded and though, like most GPs, she didn't know much about Cluster Headaches, she didn't write it off and took the time to research and learn about them.  Finding a good GP will lead you to a reccomendation to a good neurologist, which will probably be the most beneficial thing for you.  

Your doctor is flat out wrong.  If you do have CHs (and I think it's very important that you get a true diagnosis) oxygen is VERY effective for most people.  It is cheaper than imitrex, and way safer... with or without insurance.  It is also something you can bargain for, and imitrex is not.  It is the opposite of dangerous if you do it right, and has virtually no side effects.  It's time to offer your doctor a chance to be serious about this, as it's very serious to you, and if that isn't an option, then it's time to fire your doc & move on.

If you see a Dr and he won't give you O2  DON'T PAY HIM!!!!  Tell him that if he tries to bill you after not giving you THE Most effective and cheapest abortive that you will file a malpractace suit against him! Because the idiot obviously doesn't have a freaking clue!  Tell him that you are sure a few cluster sufferers on the stand will no doubt show his incompetence and that pain and fricking suffering would be a sinch to prove!

[smiley=yikes.gif]

Christeenam,
I have been on this site for a couple of weeks.  I just moved to Atlanta from Vegas 2 months ago. I went through alot of GP/IM and neuros before I found one who truly understands CH. If you have any questions email me at sbaxter1031@yahoo.com. Below is the info for my doc in Vegas.  He is aware of all the preventatives and abortives. Tell them I referred you. (tall gut that just moved to Atlanta-Steve B.) PLEASE let them know you have CLUSTER Headaches. They are sympathetic and will get you in ASAP Im still looking for a docin Atlanta.

Headache Specialist
Mehdi Ansarinia, MD
Neurology
3101 S. Maryland Pkwy (across from Sunrise hospital next to Denny's)
Las Vegas , NV 89109
702-951-2243

Good Luck Hang in there..This too shall pass

Good job Steve!

StevenATL wrote on Mar 12^th, 2009 at 10:29pm:

Christeenam, I have been on this site for a couple of weeks.  I just moved to Atlanta from Vegas 2 months ago. I went through alot of GP/IM and neuros before I found one who truly understands CH. If you have any questions email me at sbaxter1031@yahoo.com. Below is the info for my doc in Vegas.  He is aware of all the preventatives and abortives. Tell them I referred you. (tall gut that just moved to Atlanta-Steve B.) PLEASE let them know you have CLUSTER Headaches. They are sympathetic and will get you in ASAP Im still looking for a docin Atlanta. Headache Specialist Mehdi Ansarinia, MD Neurology 3101 S. Maryland Pkwy (across from Sunrise hospital next to Denny's) Las Vegas , NV 89109 702-951-2243 Good Luck Hang in there..This too shall pass

THIS is what this site is about!!!

You ROCK, Steve!!

And THANK YOU!

Christeenam, try his doctor, and let us know how it turns out.  We are ALL here to help you!

Good luck!

Chuck

Posts like yours are what justify this site Steve! [smiley=thumb.gif]

Joe

Thanks everyone for your kind words. I'm just trying to give back some of what you all have freely given to me. This site saved my sanity. You all give me hope.
Steve

Christeenam,
Do you know any iron workers? If you explain to em what you are going through. I just bet one will come up with a bottle of O2 for ya. Just a thought.
Jim