first of all, sorry i didn't search the forum to see if something similar has been posted- i am having a really awful headache right now and didn't want to look through.

my mom was diagnosed with cluster headaches a few years ago.

i am a 23 year old male.  for the past 3 weeks i have been having excruciating headaches 1-2 times almost every night.  usually one between 10pm-12am, and then one at 5-6am.

no precursor like nausea or sensitivity to light.

they are on my right side only
i feel a lot of pressure behind my eye, like it's being pushed out.  the pain radiates down to my neck/shoulder sometimes.
it makes my eye droop a little bit, and i tear up.
but i don't feel like it's a knife in my head like a lot of research has told me.  it's more of a constant pain, not terribly sharp, doesn't pulsate or throb at all...  it gets really bad shortly after onset, and then peters off over the course of the next couple hours- but it stays at a constant level until it's suddenly gone.

i don't get the nasal stuffiness that i have read about with CH- though sometimes it feels a little numb, but still breathing through it.

i usually have to hold pressure on my head, or put ice on it, or take a hot shower...and i do pace around.

but after watching youtube videos of cluster headache sufferers, i don't feel like my pain matches theirs.  i can usually work through it...it does make me moan, but i dont rock back and fourth and get loud about it.

i used to get a lot of ear infections as a kid and a doctor has said i have a high tolerance for pain after looking at a particularly bad one when i didn't even feel any pain.

what do you think?

my mom referred me to her CH doctor and he is going to run some tests in a couple weeks when i return home for college break.

First of all hello!

You seem concerned because you don't "tick every box" - don't be. None of us do! Also it morphs and mutates and things change, you can't second guess. It's hard to compare pain too because we all react differently. I rock and stuff but I don't walk about. I can't, I have wafty bones and I am not stable in an attack and I tend to fall over and break bones so I sit still or kneel or whatever. I am far more "restrained" than some people but that doesn't mean I suffer less or more, just that I'm different

We all are, what works, what doesn't work. How we react, nothing is the same for any two sufferer's really. It's like the ultimate designer headache which is a big part of why it's so hard to diagnose I think.

Whatever tests get run, the top of the list is an MRI. With pain this severe you can't rule out other more insidious conditions and it's essential for anyone seeking a diagnosis to have one. I really can't stress that enough.

In the meantime, keep going with ice or heat and you might want to try strong coffee or energy drinks such as red bull (buy cheaper versions though as that stuff is horrifically expensive!) You need to drink both at first symptoms and drink them pretty quickly too for them to be effective. Caffeine is a vaso constrictor and since CH is a vaso dilating headache it does a lot to reduce the pain.

I hope you can get a diagnosis quickly and some effective meds to help you - Oh and this bit is important - please, even if the pain stops - still have the tests etc.
If it IS CH, it will come back. I want you to be ready.

Let us know how you get on

Helen

   WELCOME TO THE FAMILY JOSH!

  PLEASE READ UP ON THE O2    IT KILLS THE PAIN FOR MOST OF US.
  AND KEEP US POSTED ABOUT YOUR PROGRES .
       LORAC

Hi Josh,

Welcome to the site and, from the sounds of it, the family.

Helen's advise above is spot on.  Follow through with your Neuro even if the attacks stop.  This way you'll have a plan of attack ready and waiting for the next cycle.

Self education and a knowedgable Dr are a real beast killing combination.


josh b wrote on Nov 25^th, 2009 at 3:48am:

but after watching youtube videos of cluster headache sufferers, i don't feel like my pain matches theirs.  i can usually work through it...it does make me moan, but i dont rock back and fourth and get loud about it.

Not all attacks are the same and they vary quite a bit.  That is why there is a pain scale that we use called the "Kip Scale".  See the link on the left hand side.

For me, a K10 is a very rare thing.  Not unheard of but something I don't experience often.  I thank God every day for that.

Though rare, CH can be passed down in families.  My Father had them and one of my Sons is showing signs too.

Good luck and let us know what you need.

-Dennis-

Hi Josh-
It sounds like the apple didn't fall far from the tree!  Through the generations, there have been 10 of us in my family with clusters, though some are still young and not in a pattern yet.  It has been interesting to watch the similarities and differences among the family members.  Someone should study us!

I'm so sorry this has to be your fate, but it sure sounds like it.  My daughters worry about it, too, though at ages 23 and 26, they still have no indications (fingers crossed).  You have an advantage, as I did, by growing up with it (your mom) and knowing what it is and that it won't kill you.  I can't imagine not knowing anyone with clusters and being hit with them!  It must be terribly frightening!!!  We use to fuss at my mother (teasingly) about what we inherited from her family and her response was always the same, "The only thing I could have done differently is just not had you."  So there...

Read on this site!  Get to a specialist!  But you already know this. 

Good luck!
Joni

We are here for ya Josh!  Your online "extremely large, opinionated, goofy, optimistic" family. [smiley=wave.gif]

Angela

Welcome aboard, Josh!

I would echo what Helen said.  The only thing I would add is to look into O2, and be ready to tell your Dr what you want to do about it when you see him, and don't take no for an answer if his DX is CH.

I don't generally have nasal stuffyness either, although my sinus tends to drain down my throat during a hit.  I also don't tend to rock and moan, and rarely pace.  Most of the time I curl up within myself, mentally at least, and make myself as small as I can.  On the higher level hits I will sometimes end up on the floor.  All I'm saying is that there is no typical response to CH.  None of us get hit the same way, so none of us can react in the same manner.  Don't let that be a determinate factor.

Keep us posted on how you get on.  We're here for you anytime.

Jerry

Hey Josh,

Well you're getting the usual buncha good advice from the forum loons regulars, so I see you're in good hands.  :)

I'm with LeLimey/Helen on the issue of being prepared - you wanna have some effective abortive(s) on hand before you ever get hit with a high kipper.

And tell your ma not to be a stranger here!  :)

so, the worst i've had is what seems to be a 7 on the kip scale.

got one right now at 1:18am

think alcohol is my trigger.

my roommate has a stimulant he gets for ADHD, which is a vasoconstrictor, but i don't really want to be up all night.   :-[

Alcohol is an almost universal trigger for CH'ers when they're on cycle....getting headaches. Avoid alcohol for now. Sadly, most of our vaso constrictors are also stimulants, energy drinks with Caffeine and Taurine....cafergot, strong coffee........as many others have mentioned, that's another advantage of the oxygen route. All the vaso constriction...none of the "awake all night!" Hnag in there, doesn't matter where they fit on the KIP scale...headaches suck. :'(

Joe

Josh I can drink two cans of red bull and go straight to sleep. A hot cup of coffee will have me snoozing before I finish it at night! I don't know if I have a huge tolerance to caffeine or if its a "CH" thing.
I do know I'd sooner be awake and painfree than go to sleep and BOOM..

I have to echo what Guiseppi said too - alcohol is an almost universal trigger when in cycle. There are people who can drink in cycle but it's a minority. Sticking to pepsi will help in more ways than one!

I find that suger-free red bull is easier to sleep after than the normal kind or coffee.  Maybe you could try that too?
It sounds really rubbish for you. :(

At the beginning of this cycle a can of Red Bull would have me up for hours.  Now I can sleep pretty soon after downing one.  I guess I'm getting used to it.  Coffee never keeps me up.

Please stay away from alcohol during a cycle.  For me, MSG is also a trigger.  Both make my hits much higher on the Kip scale.

Jeannie

It is looking a lot like I am the last evil resident around here.

In your season go see if you can drink 1 beer, and wait. This with in 30 minutes should make you sorry you listened to me, but it will confirm if you have CH...

Don't have 2 beers unless you really like to suffer hard.

The 30th was my birthday, and I am in season, so I had 2 beers knowing I was going to get hit anyway...

There are no train tracks in my little rural town but right on time two freights ran thru the bed room and my head...

Oh Well.... It is just pain. We've all been there before.   :o

to mac I can drink durn my cycle and for me it takes longer than the 30 mins or less but the pain will come and it will come hard. As is the season where partys are a plenty I tend to stay away but as I say to each their own just be ready to suffer  :'(

Hmmmmm.  Giving alcohol to the beast makes him verrrrrry happy.    It is something I wouldn't do. 

Jeannie

A point might be that if the OP finds 1 beer wipes his head out, then it might lead to knowing these are CH and not migraines...

When my season begins i may have a beer and before it is gone I can tell the trigger was pulled. If i stop drinking that beer I just might escape that night, but not for many days there after. It is a sign of what is forth coming.

I never have more than 2 beers on a given day OUT of season, so it isn't a big problem to go with out.

As to me, I like to mess back on the beast, even if I take a whippin'.

Jeannie, What, no sence of adventure?

I figure if I am gonna pay I might as well play. I don't do this every day, but I did on my birth day the 30th, as I hit 58 and am racing to 60 i guess from here on out.

I was gonna take the hit anyway, so why not...?

The beast wins one, and I win one and this is how it goes.

I am about ready to turn night into day, which the beast hates.. It likes to mess about in the night, and i will change my life habits and reverse the clock and the beast will loose more battles than it wins....

Being episotic allows for this in my personal case. Beats dancin around moaning any day, not that I never do that.

I take my beatings just like you do, but maybe I get angrier than you do. I treat it like some wild alien with in my body, and try my best to beat it as much as it beats me.

In the past here others have called me all sorts of things for doing this here, and so this is just my way to deal with it.

We all make choices, and as long as a) we're willing to live with the consequences, and b) those consequences don't hurt any innocent bystanders, I say have at it. Knock yourself out.

Quote:

Jeannie, What, no sence of adventure?

Nope.  Not one ounce when it comes to the beast.  I am the most cowardly Clusterhead you'll ever meet.

Jeannie

I'm with you, Jeanie!

Oh well.... maybe I am the last barbarian too..

Just once I'ld like to choke the bejeepers outta that beast with my own 2 hands.. 

These CH's just don't fit in my life style. In most posts I don't understand half of what is said in medical terms.

Reading here I learned how to kill the beast one battle at a time. Like I said, I win some and loose some. I can't quit, so I have no choice but to fight.

Like all the others there are times where I don't function well, but I stiill function some. Can't quit, can't stop, can't run, and can't hide, but I sure can fight back..

Mac_Muz wrote on Dec 3^rd, 2009 at 7:28pm:

Just once I'ld like to choke the bejeepers outta that beast with my own 2 hands..

Did someone say bejeeber? bejeeber?  :D

Regarding alcohol: I'm nowhere near being a glutton for punishment, which is why I'll go nowhere near any alcohol when in cycle!  :o

Mac,

We could argue till we're blue in the face about this alcohol debate.   I respect your opinion and hey, you aren't hurting anyone in choosing to drink in cycle. ( except yourself )

Let me just say though, that I don't quite understand your logic.  I could see if you were choosing to participate in an activity that made your pain worse but, in the long run, chased the beast away.  THAT would be choking the bejeepers outa him.  In my opinion, you are just fueling the fire.

In what ever decisions you choose to make, I wish for you  many PF days ahead.

Jeannie

Josh,  Sorry to hijack your thread.

Mac - you're quite right. YOU do what's right for YOU!
It might not be anything I understand... but I will support 100% your right to live your own life!

As to not understanding some posts, please ask! I hate the idea of someone not getting info that they could really benefit from just because the verbiage is a little dry. We will help you, we want you to be as pain free as possible and I for one don't want you needing a dictionary to get there (Cos being a shorthouse I need all the dictionaries to stand on!)

Helen

bejeeber wrote on Dec 3^rd, 2009 at 11:56pm:

Mac_Muz wrote on Dec 3rd, 2009 at 7:28pm: Just once I'ld like to choke the bejeepers outta that beast with my own 2 hands..  Did someone say bejeeber? bejeeber?  :D Regarding alcohol: I'm nowhere near being a glutton for punishment, which is why I'll go nowhere near any alcohol when in cycle!  :o

Uhh,,,,, sorry, I was just trying my best to not swear.....  :-/

And to all, no don't take it as i set about sippin on a frosty any time I want. I did that once, and it was my B Day.

I figured I was going to take a hit or two and I figured why not just get on with it.

last night I stayed up till 2AM, because the demons have been coming for their vist then. Well they just came later at 4. I got up got dressed and went out into the cold north wind, walked to the barn and sat in a chair breathing 0² till it was over.

Then I went for a walk around the garden, or what is a garden in summer time in the moon light. After that i went back and did a bit more O², and returned to bed.

I feel kinda froggy today, but the battle ended in a draw.

The hardest part was trying to figure out 'How To' get dressed..  :-?

The new part was hyperventilating, which has just become my next new weapon..  ;D

So far for me the O² methods work and work pretty well so long as I can be movin' fast enough.

I avoid any and all drugs to abort, but have some on hand. I find that with me, taking these just adds weeks for my season.

LeLimey , yeah I don't always understand med terms so well. I am a long hair country boy at 58 years now going on 14. Just think of a cheap biker tramp and you peg me.

To earn a living I move metal one way or another. Cars, constuction, machines, even something called Trade Silver, which today is considered jewelery, but in it's day was money.

When something is broken I just go head on in to it, and it's no different with the CH head. Sheer Bull Ignorance.

Thanks I'l keep you in mind when a word comes up, I can't quite figure.

Mac_Muz wrote on Dec 2^nd, 2009 at 11:45pm:

As to me, I like to mess back on the beast, even if I take a whippin'. Jeannie, What, no sence of adventure? I figure if I am gonna pay I might as well play. I don't do this every day, but I did on my birth day the 30th, as I hit 58 and am racing to 60 i guess from here on out. I was gonna take the hit anyway, so why not...? The beast wins one, and I win one and this is how it goes. In the past here others have called me all sorts of things for doing this here, and so this is just my way to deal with it.

Sorry man, but unlike others who wish to be nice about it, I don't see any reason to support someone's choice to pull the trigger. (I will support the person, but not the choice)

I don't know your situation but if you have anyone who supports you, pulling the trigger on purpose seems mean. 

If you don't have supporters, why would you want to suffer extra for a beer?

Anyway, just my 2 cents for newer posters who might think they should play with the beast for fun since they are "going to get hit anyway"

I don't believe you read all the posts. If you are cutting me short so be it.

And if I am going to take ahit and know I am, I don't see what difference it makes if i have 1 beer on my Birthday.

I took the hits and I haven't even complained here once about that.. I wasn't suggesting anyone drink a frosty either.

One thing on that... I come into and go out of seasonal changes. I may get Fall Hits and I may get Spring Hits and I may not, or I may get both.

At these times, I take note of the effect of 1/2 a beer. If that causes a first of season shadow I know to stop.

Mac_Muz wrote on Dec 4^th, 2009 at 7:46pm:

I don't believe you read all the posts. If you are cutting me short so be it. And if I am going to take ahit and know I am, I don't see what difference it makes if i have 1 beer on my Birthday. I took the hits and I haven't even complained here once about that.. I wasn't suggesting anyone drink a frosty either. One thing on that... I come into and go out of seasonal changes. I may get Fall Hits and I may get Spring Hits and I may not, or I may get both. At these times, I take note of the effect of 1/2 a beer. If that causes a first of season shadow I know to stop.

1.  You took the hits and didn't complain?  Good for you but when you post that you do that, it has no value on a board where a new person might think it is something to do.  YOU suggested earlier to test the diagnosis by drinking a beer and that is just plain dumb.

2.  You said you know you are going to get hit... well, with CH you never KNOW unless you pull the trigger yourself.  I missed my last cycle and this one has been a ton easier.    Had I gone by your advise I might have got rocked a few times just to play with the beast.

3.  You have every right to drink a beer whenever you want and Id be there to hold an icepack on your neck or change your tank for you even if you caused the hit on purpose but I will speak out at the idea of drinking anything for any reason when you KNOW it is going to cause a hit.

ANyway, if I got you wrong, I am sorry but read the quotes I quoted and I find it hard to believe you were not suggesting you occasionally drink when in cycle to play with the beast. 

FramCire, You won't find me complain about much, unless it is poly tics and taxes.

Lets take this quote shall we?

" At these times, I take note of the effect of 1/2 a beer. If that causes a first of season shadow I know to stop. "

I had had CH a while before I knew 1 beer would set off a Ch and it wasn't till I found here this was a trigger I probably share will all, all who would have beer anyway.

When I first noticed a 1/2 beer would cause a shadow, to me it was useful information.

That year I had ridden a motorcycle with my wife from new Hampshire to Cal, and seemingly missed my Fall season. That was well enough, because in SD I crashed and had broken ribs, and just picked up my mess and continued riding west.

Maybe the drier weather had something to do with no CH, I can't say.

On the return trip east it went to Fla, and back north west to Arkansas. We winter there, and in Spring one afternoon I was having a beer, and it was 1/2 gone and I got a shadow.

Like I said it was the first sign of what was to come and so i could expect it. O2 in Arkansas was not an option, nor was anything else, so I took those hits, and until now no one ever knew.

Not usefull info?

It's nice you might hold an ice pack to my head and or change the regulator on my tank, but I don't need you too, anymore than you need me to, but I also would.

Getting 'rocked' isn't something I ever do. Not ever.. No day happens where I will have more than 2, and no day I ride will have any. While we probably are not much alike, I have my rules and therfore my limits.

Not much else i do, would be like you or anyone else either. The things in life I value are not the things most people value much.

Lets see what else  ??

Mac,

Have a great night and I wish you a lifetime of pain free days and nights!

FramCire wrote on Dec 4^th, 2009 at 9:07pm:

Mac, Have a great night and I wish you a lifetime of pain free days and nights!

You forgot this  ::)

I know better than that, so consider the remark hollow..

Your choice, I swore to never ever take a mans choice..

I'll see ya around, and who knows maybe in time we will get along eh?

Mac_Muz wrote on Dec 4^th, 2009 at 9:20pm:

FramCire wrote on Dec 4th, 2009 at 9:07pm: Mac, Have a great night and I wish you a lifetime of pain free days and nights! You forgot this  ::) I know better than that, so consider the remark hollow.. Your choice, I swore to never ever take a mans choice.. I'll see ya around, and who knows maybe in time we will get along eh?

NO, I forgot nothing, my friend.  I said what I had to say, you replied and I thought enough had been said on the topic.  I wished you a good night as my way of ending the discussion as I didn't see any need for more conversation on that topic.

I don't think we are at odds.  We discussed a topic and came to an end.  I look forward to the next time we speak.

As I said, have a great night.

FramCire wrote on Dec 4^th, 2009 at 10:40pm:

Mac_Muz wrote on Dec 4th, 2009 at 9:20pm: FramCire wrote on Dec 4th, 2009 at 9:07pm: Mac, Have a great night and I wish you a lifetime of pain free days and nights! You forgot this  ::) I know better than that, so consider the remark hollow.. Your choice, I swore to never ever take a mans choice.. I'll see ya around, and who knows maybe in time we will get along eh? NO, I forgot nothing, my friend.  I said what I had to say, you replied and I thought enough had been said on the topic.  I wished you a good night as my way of ending the discussion as I didn't see any need for more conversation on that topic. I don't think we are at odds.  We discussed a topic and came to an end.  I look forward to the next time we speak. As I said, have a great night.

Ok, now maybe I am the fool, but I will take this last as from the heart.. I may not be the most educated guy that ever walked the land, but I generally speak from the heart.

Life is what it is, and you won't find me complaining..

I adapt, make do, or go with out. I don't go with out much.

This leads to looking at things in other ways because $$$ and me never seem to go hand in hand.

A real short example is i was downed with back problems which lead to 1,095 days of living in a tee pee the last year totally off the land. Saw -50 below 0, and never complained once. Maybe because no one else was there ....  ;D

Jeannie wrote on Dec 7^th, 2009 at 5:42pm:

Sounds like you have had a very interesting life, Mac.

LOL, Others say that, while I think this is just adventure.. I didn't set out to go live in a tee pee, it just happened because I ended up with no place else to go.

My life is like a train wreck, and like any train wreck interesting things happen.

Oct 04, my wife was rear ended in her little ford escort, by a full sized Chevy Blazer. I was at a French and Indian War re-enactment in NY at Lk George. I felt something and left on day 3 of 10, for home, to find the above.

Shortly after that I came down phneumonia, which got to be whooping cough. We had been looking for a first cottage to buy, but it wasn't meant to be. Every place by pen stroke went to be worth more than $100,000.00, and so this little cottage with out so much as a new nail went from $33,000 to $165,000.00 over one night.

While I was sick, and didn't know myself from a head of cabbage, I told my wife a dream I had at 16. That was i wanted to ride a motorcycle across the USA.

When i came back to being me, she told me and was all for the idea, and asked if she could go  :-[

I said yeah sure, why not.... SO we did. We packed up the apt and got a bigger bike than I had, while I built a trailer suitable for such a long tour. I even had one back pack of clothing for the year 1805, incase we found a Lewis and Clark event to attend. That was complete with a flint lock rife 52.5 inches long.

Well we made it to Sturgis, and I ended up crashing on Pine Ridge. I believe the trailer jumped the hitch as I have no other way to explain that crash. We were on a loose gravel road, and the rea end suddenly began to slap side to side at 15 mph..

Boom.. down we went an my wife was cut to the bone on her right elbow. I drove my right elbow into my ribs and broke 3 of them.

That caused a lot of little adventures too, but we made it to cali anyway, and then all the way back east. I don't believe in maps much, so back east ended in Fla.. I got lost after that and ended up in Arkansas.

Probably I am the only rider to crash halfway across the country then to ride it broken and back again, but that's what we did.

Got clusters in Ar too, and had no way to deal with them but just take what was coming.

My whole life revolves around being out somewhere, doing things and learning things from the past.

Jeannie, are you playing with my head?  :D

When I re-read my post I wondered if it sounded rude.   I didn't want it to come off that way so I deleted it.   Sorry :)

Jeannie

Jeannie wrote on Dec 7^th, 2009 at 8:03pm:

When I re-read my post I wondered if it sounded rude.   I didn't want it to come off that way so I deleted it.   Sorry :) Jeannie

Jeannie, Don't worry about what I think, and I wouldn't say you were rude either. I have a pretty thick hide anyway.

I don't see people often other than my wife and our landlord, in which we all share a house.

When I do see others, they are pretty much Buck Skinners, or French and Indian War historical living re-enactors, and last Bikers.

I thought to delete my reply, but that isn''t anything I do normally.

What ever I post be it good or bad I leave it. I am fairly direct in the way I live. Never fear me though..