I have just registered as a new user and I am the spouse of a Cluster Headache sufferer.  Not sure when he was first diagnoised with this, however he did have surgery about 5 years ago (neck surgery).  We had hoped this would also rid him of this awful nightmare he goes through, but it cam back and he had nerve blocks done, then nerve burn.  That worked for 2 years, then again it came back into our lives.  Had it again and last about 1 1/2.  Again in July of 1990 and just last mo yet another nerve burn session.  He is taking Relpax now.  We looked the oxygen but with insurance it was like a rental of about $150 and we did not go that route.

I am just heart broken with what my man is going through and feel he is so close to losing his fight.  :'(  He is scared and I am scared.  If he is not better by tomorrow (will be 1 week since nerve burn) we may have testing done.  MRI or something.  He is talking about having someone do exploratory surgery on him to find out where the problems stem from and get rid of permanetly.  Stated he can not continue this way.

When he has a reprieve from this demon for the 1-2 years he is ok.  But fears when he gets just a regular headache that it will turn back into the Demon again.

I try to help him, heat up towel, get ice pack, rub the place in his neck or shoulder.....  I lose sleep with him and over him. 

Being new, I am reacing out for some advise, words of caution, other remedys to ellivate the pain quicker.  What can I do as a care taker of this poor soul going through this hell and how to keep myself sane and continue being the breadwinner of the family and get work to understand when I can not come in or have to leave.

HELP!

Pinklady :'(

If the situation is life or death $150 is not to much to ask for relief. Oxygen is cheaper than surgery, heck, the whole set up is cheaper than 1 Imitrex injection. Use it- you will be shocked. Also, have him chug a Red Bull (unless he's on Verapamil) at the very first inkling of a headache. Not a silver bullet for everyone, but they're about $2- worth a try, for sure.

My husband (episodic for 15 years) tried oxygen a few cycles ago. His doctor gave him the wrong mask, low flow regulator, and no advice on proper technique. Because of this we thought it wasn’t effective, it really didn’t do much but take the tiniest edge off. Once we tried it again this last cycle using the correct regulator, mask, and technique he never suffered over a kip 4 from then on. The difference in effectiveness was amazing. Here is some of the info from the yellow Oxygen Info tab on the left combined with a few quick notes from me.
My husband has the M size oxygen tank with the CGA540 valve. Don’t let the terminology scare you; just know that the valve type determines what kind of regulator you use. We use a welding O2 tank, but the large M size medical tanks use the same valve. If your doctor prescribes medical O2 but not the right regulator just know you can buy them online or a welding regulator from a welding supply store, no prescription needed for that.
The regulator needs to be capable of delivering oxygen up to at least 15 liters per minute.  10-12LPM is sometimes enough but less will not be as effective.  Many folks here have much better results with a higher flow rate, such as 25-60 LPM. My husband use a welding regulator, and that does not measure in LPM. Don’t let that worry you. With the nonrebreathing mask you are breathing from the inflated bag on the mask, the flow rate just determines how fast that bag refills. The welding regulator my husband uses is very sensitive, we can easily keep the flow rate to what he needs it, or less, it’s very precise.
The amount of time to breathe the oxygen is important.  If you do not get relief in 15-20 minutes of treatment, you will probably not get relief for that headache by further use. Sometimes, waiting 10 minutes, and then trying again, works. My husband hyperventilates for 5 minutes (really fast, sustained breathing), then deep breathes for 10. If it doesn’t completely work the first time he’ll wait and then try it again.
The right mask- you need a nonrebreathing mask. Cheap ones for around $2 can be bought without a prescription, but my husband prefers the Optimask we bought here. When he was using the cheaper one he’d hold his fingers over the circular valves on the side and just lift it to exhale. Cut off any elastic band that will hold the mask onto your face--if you fall asleep with the mask attached, you may suffocate if the oxygen supply runs out. My husband thought that was kinda ridiculous, but I cut them off without even asking him- exhaustion and cluster headache go hand in hand- don’t take a chance with that!
There are pictures of the different tanks, regulators, and masks as well as really detailed information on all of this to the left on the yellow Oxygen Info tab. There are also lots of really really knowledgeable folks who have had great success for years with this. Hope this helps and please ask if you have any questions!

Wanted to get that info to you so fast I forgot to add this:

Hang on, hang on, hang on, and fight, fight, fight! YOU can help and YOU are not hopeless or helpless anymore. I am a supporter, as are many here, and if you have to drag your husband bodily to relief you will join the long line of us who did the same. Please join us, we are here to help him and to help you, and we will.

It would be helpful to know what forms of non-surgical treatment he has tried--medications, doses, duration, etc.  And what kind of doctors have you been using? Have they had experience in treating complex headache disorders?

It's very difficult to offer any assistance without a more complete history from you.

Hi Pinklady,

I'll echo what Lauren says about O2, and I think it's important to know that many who struggle with CH find that there is a bunch of info and advice here that can really turn things around for them.

You'll also find some inspiring life changing stories amongst the folks over at the clusterbusters.com forum, many of whom who had severe cases and had become very desperate, feeling like they are at the end of the line, like your husband. We're talking middle aged church going folks who found "busting" to bring them real relief. This recent Newsweek article on the subject of busting and CH would make a good introduction for you IMO:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The doctors commonly fail us, but there are LOTS of things to try still that you'll be finding out about now, many of them known to be very effective - hang in there!

And encourage your husband to sign on and share as well. Fear and depression go hand in hand with pain, or even just the anticipation of pain. Talking helps. It really does. Blessings. lance

You've been given some great advice. Do try and get your husband to sign up here, as Lance mentioned, just talking about it, with someone else who understands and can relate, can be really therapeudic. Thanks for reaching out for him we consider our supporters golden. [smiley=hug.gif]

Joe

wimsey1 wrote on Jan 6^th, 2011 at 8:14am:

Fear and depression go hand in hand with pain, or even just the anticipation of pain. Talking helps. It really does.

Before I had oxygen to abort my CHs every time the beast came I was in for between 45 and 75 minutes of total agony and I wasn't in control. That wasn't fun, it was pretty tough to cope with, especially as he was arriving at the same time each night so I was watching the clock dreading the arrival time.

In total contrast now I've got oxygen I know I can kill off a CH in 6-8 minutes and I'm in control of this. Yes, when a CH arrives it still hurts, but I can do something about it. This is a game changer and the first time I used oxygen to abort a CH I was in tears from knowing I had something I could fight back with.

And talking helps a LOT. This forum has helped as the people here get it, they know at first hand what CHs are and do.

Having the right meds on hand makes all the difference in your mind-set.  You feel like you can at least deal with the hits, aborting most of them, and making the ones that get through less painful. 
I have a near panic if I run out of anything.

Thank you all so much.  What doctor is the best doctor for my husband to be under the care of for this?  He only sees a pain management doctor for the Radio Frequency to be done.  We went to a neurologist last month and he prescribed Relpex and Depakote and gave us the prescription for oxygen.  That was for only 6LPM for 15 minutes which reading what is on the yellow oxygen tab is low and just may not do him any good.  Does he need to see a certain specialist to have breathing test done.  This doctor did not go over anything with us regarding oxygen therapy- we actually mentioned it to him from doing our own investigative work on cluster headaches. 


I think he has registered to this site, however when he is not doing so well- he does not get on the computer.

I will be honest- the oxygen info is a bit overwhelming and reading it makes my head spin.

I am trying to look on the message board as well.

Once again I thank you for your replies! [smiley=clap2.gif]

The 02 stuff is complicated until you get your hands around it!

A tank....most start with an E-Tank, they're small and easy to handle.

A Regulator, just the tool on top that sets how much air comes out, 15 LPM is what we consider bare arse minimum flow, with many needing 25 LPM or better.

A Non Re Breather Mask. That just makes sure no outside air gets in, and no exhaled air gets re inhaled, just pure 02.

As soon as a hit starts, start huffing on the 02, I abort in about 6-8 minutes.

Do NOT let them send him for an oxygen saturation test. They'll tell him his oxygen levels are fine and he doesn't need 02! We aren't suffering from low 02 levels, we just need pure 02 to abort with. I hope that part is not confusing, we still have many people being sent in for the oxygen level tests.

I've PM'd you my cell phone, call me anytime you have questions i can help you with.

Joe

An actual headache specialist is always the absolute best choice (if you can get an appointment with one without having to wait months), and about the only type of doctor who you can trust at all when it comes to CH.

Sorry that the O2 info is a bit much to take in all at once, but it does pretty much boil down to the 3 things Joe mentioned - the tank, mask and regulator. Or if you can afford it, a demand valve system apparently simplifies the set up and is extremely effective.

That is fantastic that Joe offered O2 phone support - you should take him up on it! And we'll answer any questions you may have here too.  :) 8-)

:)
Hubby finally has some relief now with radio frequency done a week ago.   But we know they monster will return again.  Since he had neck surgery about 5-6 years ago and that was the last time he had an MRI done- he will be getting new one done to see if there is an issue with the plate or if he is rejecting that or the bone that was used from a cadaver.

The only place I know if that would probably be the best place for him to go to is the Diamond Headache Clinic is Chicago.  But now that he is feeling relief, I am sure he will put things off.... again. I will still be investigating this site and check on the Headache clinic to see what they have as far as a website and looking at all this oxygen stuff. :)

I am so happy I found this site.  It is good to be able to reach out to others living this life and supports of those living through this.

Thanks so much and hugs to all!

Glad to hear about the relief, and it sounds like smart thinking you got going there to be investigating the headache specialist thing in the meantime.

One strategy could be to book an appointment for him now on the sly (if they're going to make you wait months), then if necessary you could always cancel it, but if he ends up needing it, it could be sitting there available to him and you could say both "surprise!", and the highly satisfying "I told you so!"  8-)

My girl feels the same way,most times there is nothing she can do when I'm going through an attack,she feels helpless.

Be there for him as much as you can and plenty of hugs and kisses! you are doing great so far,please don't give up! People here will help tremendously, you are in the right place.

Give him a hug for me ;)

The V.A.