Hi guys & girls ..
I’m a newbie and so far found some interesting posts and information.
I was never the “support group” kind of guy but get how it helped others… maybe I’ll try to throw my story up here..
2002- This all started as a regular headache while I was in the army. It was like any other headache that you would take 2 advil’s for and keep on with your day…  within 2 months i found that these headaches were coming back to me every day at the same time (exactly ) and lasting (exactly) 20 minutes (how could I even explain this to someone? I must be crazy..). As time went by the headaches got worse, more frequent, and chewing pills was not helping…
Starting to bang my head and doing all the other fun stuff (im sure you guys are into) didn’t feel so normal.
No doctor (many by ‘03)could tell me what was wrong with me and for some reason I would never get an attack during a mission…  (maybe the adrenalin).
I don’t know how I pulled till ’05 but after the army things got real bad- up to 3 times a day -> up to 3 hours each one…
(I still think adrenalin was suppressing it).The Cluster Headache medication that is normally used was just not working on me. I was in a chronic state and had no idea how to get out or who to turn to..
Thank God ‘06 I found a doctor that started some heavy treatment on me and the medication was holding some “free of pain” days + I always got my best friend imitrex to bail me out.
Today - the longest I will go without an attack is about a week maybe two.


my biggest problem has always been an attacks around people or having to explain myself to someone.
I HATE the felling of people feeling bad for me  or the great line of  “ oh , I had a migraine once .. it was so bad ;)  
But for real now … I think I have pushed relationships away because of it … and women are so much cooler and understanding when a guy has a problem. I think im just still embarrassed ….  

would love to hear what you have to say about that and how you deal with those situations


"some people walk the dog … I walk the beast … " ;)

Welcome to the board.  You will find a lot of valuable information available to you here.  

Maybe O2 will help you out.

So far from all the candy prescribed to me , im taking topamax, verapress, lithium and imetrex injections for attacks
On average I have 30-40 attacks a month ( even with a week off here and there ) tried oxygen but with no luck …

But how do you guys deal with the people around you ? I have become a ninja when it comes to injecting and making as if nothing is up… but sometimes it sill happens. I still cant get over that    

Hi Unc,

    Welcome to the bin.

check out this letter from the OUCH site   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
should help you when explaining to some people.

You will find out that oxygen is a main abortive around here.  I can vouch for it also. Works like a champ.
Lots of information in the medication section.

There's a bunch of people here to help you get through this.

                                                PFD's
                                                 JPC

 Welcome  You are not alone your story sounds almost like mine, the army and every thing and stress seems to supress the hits until I relax.  Being a ninja I've never heard it put that way but thats awesome I do the same most of my pants have holes in them just for injecting imitrex.  
 Well hang in there others will chime in with advise im sure, if you need to vent feel free to pm me.
   Phil 8-)

I completely understand not wanting to be around folks.  Just recently got diagnosed myself.  I just got my new sick/personal days at work Oct 1 and started my cycle beginning of Nov and just about out of days already.  Doc hooked me up with some anti-depressant/anti-anxiety meds to try...in addition to two more refills of the Imitrex to hold me over until the neuro consult next month.  I happened to luck out with a GP and ER doc with experience with CH.

I have been reading these boards for a couple of weeks and noticed that there is a ton of experience here.  You are in the right place.  These folks will take care of you.

Bud

I hear ya, hate getting hit around people the most. Might sound stupid, but I always try to downplay it. Even when I get an attack with very close friends, I try to control my behaviour as in not doing the dance. Doesn´t always work the way I figured it lol.
I guess that is male pride.....

While being in the army I´d get hit regularly, as I was on a medication, Sandomigran, that did not do sh/it, and hated being in the centre of attention so I´d find myself a secluded place.
Nothing worse than having your buddies ask you if they can help lol, in such a male environment.


Pascal.

Thanks for that link to  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE   good stuff …  
Still I sometimes find myself in the worst situations and hate being the basket case (just do my best to get out of it).
Maybe im just used to being the one that “takes care of everything” and here I am helpless :-[
I like the comments on "what not to say to someone with CH" .. made me lol- so true  

thank you all for yr posts!

There is a card - like a credit card - that someone gave us at one of the conventions.  Is it from OUCH -UK?

It basically says "no, don't call 911, get me out of the heat to a cool area, I'd like to be alone, etc."  Does anyone recall seeing these?  I had one in my purse for years in case Brew got hit and I wasn't around and now I can't find it.

(Modified to add: there is a Colleague's letter at the OUCH site which might help telling others about the symptoms, etc.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE )

uncle-cluster wrote on Dec 15^th, 2008 at 6:46pm:

I like the comments on "what not to say to someone with CH" ..

Look at the CH Specific board for the thread called "Dopiest Responses to CH".

Yes, uncle, we know exactly how feel.

Welcome to Clussterville

 I have to ask.   You said you tried oxygen with no luck . . . at what flow-rate and with what type mask?   Many here (including me) were given the nasal cannula (nose thingy) and considerably lower flow-rates than we require.

 If you didn't use at least 12-15 lpm through a non-rebreather mask (the one with the bag) . . . you weren't getting the 02 required to abort an attack.  If that's the case, you need to give 02 another shot . . . works for 70% of us to abort an attack.

 Be Safe,    PFDANs

   Richard

PS . . . and thanks for your service

truth is , i have no idea what they gave me and at what flow ...
i was taking it from my nose ...
maybe i will look into it again
sorry... i will look into it again!
thanks

GREAT NEWS! . . .glad I asked.

You had no luck with the 02 because it wasn't administered properly (for CH).

This should be your very next weapon in your CH arsenal . . . and you'll be able to reduce your use of the Imitrex if it works for you.  I can't use Imitrex (some artery blockage and high cholesterol) .  .  . so 02 is my only abortive . . .  can usually kill him in minutes if used early-on in the attack.  I hit in the middle of the night with a Kip 5 (and ramping), might take 10-20 minutes to kill him (I used to like heat, but now use icepacks while huffing the 02 . . . seems to abort quicker).

Dealing with people:  I find that my 02 tank is a great conversation starter . . . especially if getting hit.  Usually, if I'm in an establishment and get an attack, I'll usually announce that I have to go "kill a head", exit to my van and start huffing.  Almost always folks will notice this or see me huffing away in my van and inquire, "you allright?" . . .. which opens the door for a bit of CH education to whomever.  Last year I ran (and played in) a pool league.  During the league, I was hit several times (once with Kip 7-8), went to my van and brought the tank in, dancing & huffing in between shots (and hoping my opponent would have a long run).  There was and EMT and hospital worker there, who were quite interested . . . and after I had killed the bastard, I was able to give them some CH info/characteristics.  Being this open with my tank (and my attacks) has helped me identify at least six other Clusterheads and point them here and have them investigate 02.  

You need this NOW!

 Be Safe,  PFDANs

    Richard

 Richard  ->

Cant use Imitrex??!! I would say that my first 3 years looked like that and I was seriously considering the other name of this “headache” if I would have to go back... I don’t know what I would do!  I also have high cholesterol but my doctor didn’t say anything about it… and if he did then I would fiscally get that prescription..lol.. (im really not kidding)
I could not make conversation with anyone within 5 minutes after my trigger but after I can see the benefit of helping others (though im still very closed about it)

I will definitely go and ask again for the 02   “12-15 lpm through a non-rebreather mask (the one with the bag)”

thank you!

Yeah the nose thingy is a nasal canula. For the oxygen to work, you need to get pure 02 in the lungs, no outside air, no exhaled air. The nasal canula lets in too little oxygen, way too much outside air. Go to medications section and read Chucks 2 links on the top about oxygen. Complete with pretty pics showing options and everything you'll need.

And I'm with you, I TOTALLY hide during an attack! Glad you found us, hoping we can help you.

Joe

02!  02!  02!  When used properly, it is the first, best abortive there is out there (for most)!  Your insurance will very likely pay for most of it.  The "oxygen info" button in yellow on the left takes you to a site where you can order the 02ptimask.  It's not just a non-rebreather mask, importantly it's got a 3 litre bag attached.  The one that will come with med supply/insurance supplied 02 will not do the job correctly.  There are lots of techniques discussed on these boards about how to make 02 work most effectively.  Sadly, many neuros are not up on the correct use of 02 and still recommend flow rates of 7 - 8 lpm which works for some, but higher flow rates are more effective.

...When you find you won't leave home without the E tank with you, just tell people you have a rare brain disorder, and that they can't catch it from you.  If they want to know more, tell them your hypothalamus doesn't work properly, causing problems with vasodilation and vasoconstriction in your brain and that causes bouts of seriously intense pain - and their eyes will have glazed over and you probably won't hear "I've had one of those" again.  That's how Gary handles it when I'm not around to explain.

I'm sure you'll find this site to be a great resource!

Wishing you PFDAN,

Laurie

Hi! The 02 through the nose will not work.You need 100% pure 02. My doc gave me 15 litters for 15 min.If that dont work,use imitrex injection. this works for me.I have never heard about the red bull till I read about it on here.Going to give that a try.A lot of good info in here.I know how you feel about being around other people when you get hit.When I was working my boss had known me all my life he knew I had these things and he let me work around them.And now I know just about what time they are going to hit so I give the beast its time.I have three big hits per day then a few smaller hits.I have the big ones between 8 and 9am between 8:30 and 10pm and the worst one around 2am.Most everyone I know understands that sometimes I have to go out and fight this battle.It used to make me so angry for someone tell me {I had one of those last week}.They have no ideal what they are talking about.I have learned not to listen.    

Quote:

But how do you guys deal with the people around you ?

Other people have no frame of reference, you could explain till the cows come home and they would not understand what you are going through. This pain is more than they could imagine.
People around me ..I dont really care much what they think, it's my head. Those around me are the last thing on my mind as I run to my 02 tank. ;) I'll deal with them later, right now there's a spike in my head. Some will try to understand and some wont.
Houdy, glad your here.
the bb

When that screw driver is actually getting jammed up my eye I also don’t care what’s going on around me…  It’s after
I guess im also in a different stage in my life… I could be on a date , etc
so because no one would understand its harder…
but I find innovative ways…  :o

Yeah, hit the O2 threads, lot of good hints, and for sure try it again.
Look at the survey on this site, like a shopping list of things to try. Other than drugs, nothing says you can't try a few at a time, like hopping into the hot shower, sucking oxygen, after washing down the relpax with a can of Pepsi. Funny, i just asked another vet how many ex combat vets have clusters? The VA types at Albany seem pretty up on it, pretty refreshing, and the drugs are free.
Last, shop doctors. Many are not up on CH, ask them before you make the appt it they have any CH patients. If none, maybe not the doctor you want.
Bitch about clusters, is that there is not a lot of science for some of them. What works for one headache, will not work for the very next one, what's great for one person, is a trigger for another. You have to keep pounding on things until you find what works for you, and the faster you do it, the sooner things start getting better.
BTW, Welcome home,
and thanks for your service!
Chris

Get the O2 and start using it. Use it properly. Those of us who swear by it - well we SWEAR by it. I've been able to cut out my aborts almost completly by using just O2 to abort.

If the CH is really hitting on a high note (sometimes it goes from 0 to 8-9 in 5 seconds flat) I'll down a can of Red Bull along with the O2. So far it's worked without the Cafergot (my abort of choice) since August.

I've cut my prevents down to half since August and that's great for me since I've been Chronic since 97 and have been on the prevents since 99. (Topamax has been my miracle drug).

Read the tips on Imitrex (if you're gonna take it) about cutting it down to several doses. Better for you and it works just as good.

Oh and Granny's recipe for cutting down colestrol - take two cheyeene (sp) pepper caps after meals (do NOT take on an empty stomache). It will cut that colestrol down and keep it down. Trust me on this one. Granny knows about "home remedies". You'll thank me later.

Hugs BD

BarbaraD wrote on Dec 23^rd, 2008 at 6:52am:

So far it's worked without the Cafergot (my abort of choice) since August. I've cut my prevents down to half since August and that's great for me since I've been Chronic since 97 and have been on the prevents since 99. (Topamax has been my miracle drug).

I think it was in ’04,  my doctor gave me Cafergot as a preventive … (didn’t do anything – hum.. )
I was put back on Topamax and I think its been helping

The same thing happened to me with the oxygen, unfortunately. I had the nose piece and standard flow....10lpm, I believe. When I started reading about O2 helping so many people, I was like "whatever"... Finally ran into this site a few years back and "instructed" a GP interestingly enough...since they would actually listen to me. That was one of the best discoveries. I'm in the process of buying my own tank, regulator and mask now...