Well, I was on here awhile back, but it has been some time and was just looking for opinions/advice.  First off, I've been suffering with CH for a little over 2 years.  I have cycles that go 2-3X's a year, for 2-3 weeks, 3-4 X's a week.  I know I have it relatively easy compared to some, but one of these damn headaches is enough for me.

Until recently I didn't have health insurance.  I also have to admit my CH's were short lived 15-30 minutes, so while they were extremely painful I could tolerate it for such a short period of time.

I'm currently in a cycle now though and they are now lasting about an hour.  One note, my CH always wake me from sleep..it's the only time I ever get them.  Before these cycles I slept at night, but now that I work 7p-730a 3 days a week I sleep during the day, and the headaches have followed.

Anyway, went to the doctor who originally said I was having caffeine withdrawal.  I guess after proving myself not to be an idiot and not falling for the line he was giving me (sometimes having the RN behind your name helps, sometimes it hurts) he gave me samples of Relpax.  Oddly, he was hesitent to give me a prescription for oxygen.  That eventially ended with his nurse saying she would contact my insurance to see if it was covered.

So, I don't know a lot about at home O2 therapy.  Can you get away with having a portable tank, and are they expensive?  Does anyone else have issues with O2 being covered by insurance.  Also, what does everyone think about Relpax?  I've heard it does great...but more for those that have longer episodes.  For the cost, if it knocks it out in 10 minutes I'd be happy, but if it takes 30-60 minutes, and that's how long my episodes last anyway..well, it seems kinda pointless.

Thanks, and I'm sorry if this has been discussed elsewhere.  Kindly point me to the direction of those threads and I'll take a lok.

Read the o2 link on the left of the page. You will be glad you did!

All the Best :)

Welcome Only_me

Sorry to hear about the rough go of it lately.

Have you tried Melatonin at night before bed or if that doesn't work for you an over the counter allergy pill at night like zyrtec  (generic cetirizine), either of these may help you get through the night with out a CH hit or at least lessen the number of hits a bit.

PF wishes to you.

Hey OnlyMe and Welcome back to Clusterville

  It really is frustrating how often we hear folks that suffer this beast being denied one of the most effective abortives because, "your insurance doesn't cover 02" . . . while it might cover the MUCH more expensive (but limited scripts) Imitrex.

  02 is cheap, cheap, cheap, even if you have to pay cash, especially considering how well it works for most of us.  Call all the med supply companies in your area and ask how much their CASH price is per "E" tank.  Then get back with your doc and have him write the script.

  Sometime back, there was a survey about 02 costs . . . and they can vary considerably.  I am very fortunate in that my supplier charges me $10 per tank, no deposit, no monthly fee, no limit on tanks (I keep 15) . . . that's for "E" tanks or the little "B" tanks (have one of those). 

  For home use, see if they carry the larger tanks (shown in the 02 link), or you can acquire the large welding tanks and the price drops WAY down per litre.

  I don't know if any of the insurance companies have a "medical necessity" form which has to be filled out by your doc . . . I believe medicare does.  I am on medicare and have considered going this route, but in that survey I mentioned above, someone who was able to get Medicare to pay  . . . the supplier was charging $42 per tank . . . which I consider a rape of "the system". 

  In reference to the above, I am on a list of Medicare patients that is surveyed on a regular basis (a rep comes to my home at least once every six months) with a long list of questions regarding service, availability of service, prescription benefits, etc., yes or no answers or multiple choice (none of the time, some of the time, most of the time, all of the time) . . . takes about an hour, sometimes more, and at the end there is always a space for "other comments you would like to make regarding your medicare coverage"  My answer EVERYTIME is "Why doesn't Medicare cover 02 for clusterheadaches?"   Don't know if anyone really looks at these comments, but maybe, just maybe if Medicare started covering it, then the other insurance companies might follow and the docs might become more aware of it's effectiveness. . . we can hope.

  Been doing this survey about 2 1/2 years now . . . might continue til my demise . . . don't know, but I'll keep hammering at'em.

   Be Safe,

     PFDANs


       Richard

Welcome back.

O2 at 25 lpm is the way to go.  (at least to start)  I used to use 15, but it didn't do the job.  At 25 I can knock out a hit in 5-8 mins.  At that rate if I had to pay cash for the O2 it would be cheaper than my co-pay on Imitrex, and a LOT easier on the body!  Read the info on O2 carefully.  With your medical background you should be convinced quickly.

Jerry

I did read the link to the left, which helped tremendously.  I have to admit, even being a RN, I don't know how much things cost.  I pull pills and give them to my pt without a second thought of cost.  I throw on the O2 without thinking about it.  So I have no idea what the cost is for an oxygen tank, and neither does my doctors office.  I asked, surely it's not that expensive (and from what I've heard it's not), I'll just pay for it out of pocket.  They were insistent on contacting the insurance, and here we are two days later, one CH later, with no response.

I did call the office today.  Yesterday after attempting to take a nap up and being woke up, an hour later, with the demon, I took the Relpax.  My CH was gone in 30 minutes and I had a moderate amount of nausea.  Well, typically my CH last 30-60 minutes, so did it work?  I don't know.  I don't think so.  I'll take the nausea over a CH any day of the week, but ideally I want something to work in 10-15 minutes.

We'll see if they call back today.  This is a new MD for me, and I may have to switch.  Other issues also.  This MD tends to blame everything on smoking and caffeine (bad for you I know, but seriously, somethings are more in depth than just a caffeine addiction)

My doc said the same thing about caffiene.  I told him I smoked cigars, but he has not encouraged me to quit that yet.  You wont find many caffiene free people here.    I have cheated a little lately, but basically i am caffiene free.   It seems to help me.  Maybe you should try for a few months.   good luck

Since I work nights 7p-7:30a, I will cut down on my caffeine intake (eventually ;) )but I just don't see going caffeine free.

Well, I called the doctor.  Getting another med, this time will have to fill a script because there are no samples.  The name escapes me though.  Starts with an "M" (not familiar with all these headache meds). 

Calling next week for a new MD. 

Hi again,

  Would the "M" be Maxalt?  I'm personally not familiar with it, but I'm sure someone will chime in on it's effectiveness.

  Strong coffee is our friend.  It is a vaso-constrictor which is what we need.  In the past, that was one of the first things we would use at the onset of attack.  Now, folks use Red Bull or similar energy drinks which contain caffeine and taurine . . . slammed down at the first sign of attack (pop the top to get rid of the fizz . . . and keep in the fridge . . .easier to chug that way (I hate the taste and have only tried one . . .  but I always have 02 at hand)

  I believe there are warnings about taking the energy drinks that contain taurine if you are taking Verapamil (an often prescribed preventative for CH . . . I used it to good effect years ago)

  If you go to the OUCH website, there is a schematic of the head showing the trigeminal nerve . . . beside which are blood vessels . . . it is the dilation of those vessels that puts pressure on the trigeminal nerve and causes our pain.  100% 02, at high flow rates is also a vaso-constrictor (There was a post a year or so ago which indicated that 02 creates hyperoxia, hypoximia, elevates PH levels, all of which evidently help constrict the blood vessels . . . pain goes away)

  Imitrex is a VERY effective vaso-constrictor and works in minutes in injectible form . . . BUT . . . it constricts all vessels and if you have artery blockage or high cholesterol (as I do), can be VERY dangerous.

  Keep reading . .  keep asking

    Be Safe,

      PFDANs


        Richard

Yes, it's Maxalt.  From what I read it will get rid of a ch in 15-30 minutes in those people it works for.  I'm going to give it a shot. 

And I'm still determined to get some oxygen eventually.  I'd prefer my insurance company to chip in, but if I have to pay out of pocket, then so be it.  From what I read out of pocket is cheaper than my co-pay for these other meds ($30 for 9 Maxalt).

Thanks for the warning on Imitrex.  I didn't know that and haven't had my cholesterol checked properly...ever.  (I've done the finger stick test).  I'm young-30- but being overweight, asmoker, with a family history of heart disease, that does concern me. 

Sigh...just need to get ahold of some oxygen.  If I could get myself to work during a ch I could have as much as I wanted for free, but seriously don't think I can suffer the 10 minute drive.

I'm so tired of being scared to go to sleep.  This cycle is on it's 3rd week, when before it would be a max of 1 week, maybe 10 days.  I'm begininng to understand "shadows".  Before I had no idea when they would strike, and now I just have a got feeling caused by a pressure in my head that if I go to sleep it will come.

The good news is the Maltax got rid of it in about 20 minutes, a little better than the Relpax.  I don't mean to bitch about 20 minutes, but this was 20 minutes of a KIP 9, maybe 10. So many times I've thought about going to the ER, but can't stand the thought of the chit-chat before treatment.  And I just don't know about going to the local firehouse, I don't think they would treat it. 

I'm ready for this to be over so I can have a few months of rest pain-free.  And if the previous couple of weeks are any indication of what's to come, I work the next 3 nights which means ch's the next 3 days.

I really don't know how chronic sufferers deal with it.  I really don't know if I'd be strong enough to handle this constantly.