Hi,
 My name's Jennifer, I'm new here.  I'm 28 and have had episodic cluster headaches since I was 16 years old.
 I'll go two, three years without one than for one-three months I'll get them 5-10 times a week.  Currently it's lasted about two weeks.  I'm hoping it's only a month like episode but who knows.  
They come out of the blue.  I'll be fine, sitting talk to my family or playing with my kids and in an instant I'm rocking back and forth fighting back tears.  It's like I can feel every single nerve in my orbital socket clenching.  My eye feels like it's going to pop out of my head and I've actually worried about it at times.  I've ripped my own hair out, hit myself, left gouges down the left side of my face just trying to fight the pain.  When the pain gets bad I beg for help from anyone and everything.  God, the devil, Angels in my family that have passed over.  I beg God to let me pass out so I don't have to feel anymore.  All I can think about is the pain and making it go away or making something else hurt so I can focus on that instead of my head.  I can't let my kids see me in total agony so I crawl away to a cool, dark, quiet place and suffer alone.
 I was sound asleep when I got my first headache and shot out of bed screaming for help.  That session lasted a couple headaches a week for about a month.
 Until this session I had been pain free for about three or four years.
 I was about 23 when a doctor finally told me I had cluster headaches.  It was during a horrible time in my life and when the headaches stopped I didn't follow up on treatment.
 I haven't tried any of the meds or "treatments" I've seen talked about here and would def love to hear more about them.  

Anyway.  That's a little bit about my story.  I hope I didn't ramble too much.  If you'd like to talk you can email me at AquariusDreamerJ@aol.com or IM me at Gotthemunchiespothead on yahoo.
My family tries to understand but having never suffered this they just can't.  I'd love to talk to someone who can.

Well Jennifer, I'm truly sorry you had to find this family, but glad you did.  Since you haven't said if you have any sort of treatment in your arsenal, the first thing you want to do is read read and read some more.  Check all the links on the left, then go to the OUCH site (link on the left) and read everything there.  Then ask questions and everyone on this site will be able to answer them or find someone who can.

Then get thee to the doctor and as a first defense get Oxygen, there is a link that will give you all the info you need for O2.

You are among sufferers and supporters who all KNOW what you experience, never a need to explain, just be you.

If ever you need an ear, my email is posted in my profile and you can PM me.

Welcome aboard,

Cat

Welcome Jennifer, What Cat said

Read Read Read  Question Question Question Learn Learn Learn

To PFD.....Walk in Peace  :)

Sorry you have to be here, but glad you found us.

As Cat said, you have a lot of reading to do.  But, notice that all the reading, is in black ink.  It is much easier to read.  It does NOT give you a headache, trying to read it, like it does when you use purple for the whole text.

Click on the oxygen info button on the left side of your screen for info about oxygen, how to get it, terminology, and how to use it.

Chuck

Welcome Jennifer but I'm sorry we have to meet because of this horror. Your description is great. Cool, dark, quiet, and alone was what I sought. Mine appeared when I was 23 too.....way back in 1969. Mine woke me out of a sound sleep as well and lasted about 20 minutes for about 5 weeks and I could count on them every spring and fall. A LOT of us have similar episodes. I was lucky in a way that I was seeing a neurologist for the epileptic seizures I've had most of my life. I learned what they were within a week. Back then, there was Cafergot and little else. Cafergot was so ineffective that the doctor warned me about it. By the 70s, I met another neurologist and learned of the technique that I describe below. It was about the only thing I had until the 80s. I used Inderal, a beta blocker that worked for me. Fortunately for you there are more and better treatments listed on the OUCH site and talked about among other clusterheads.

There are people that seem to have "outgrown" the thing but it's unproven. All I know that the last hit I had was when I was 45. I can only hope you have even better luck.

Here is the technique that worked for me:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Wow.  Such a warm welcome.  Thanks everyone!!!!!  I've been reading as much as I could here but haven't been online much either in the last couple days.
Someone asked about treatment and right now I don't really don't have any.  I'm without insurance and not able to afford a doctor and/or meds.  It really does nothing but I'm way over doing the advil and tylenol.  Just gives me something to do I guess LoL.
I woke up with another one last night.  6 am.  About half an hour after I went to sleep.  
Sat there for about two minutes praying it wasn't what I knew it was, and finally moved to the bathroom.  As far from my daughter as I could.  Last thing I want is her to see me like that right now.
Lasted right about two hours than just bam it was gone.

I also wanted to ask, does anyone else get what I call residual pain?  Mine can last all day (it has this time).  It's not the same as the cluster but it's not a normal headache either.  Kinda like a bruise I guess.  It's like my heads still store trying to recover.

Thanks again for the warm welcome everyone!!  It's nice to meet all of you.  And I agree, I wish it was on better terms.  Why isn't there a Bunny Lovers Support Group or something?  Rainbow Chasers maybe LoL[/color]

Its amazing how much we are all alike when it comes to the pain and agony, and yes I know about residual pain.  Mine sits right on my shoulders like a cat ready to pounce and it seems like when it is there it usually takes nothing to unleash it.  Moving wrong, sitting wrong, or whatever and bam there it is.  Usually I get attacked 5-8 times every 24 hours.  Sorry we have to meet like this but take care, get some immitrex injections and oxygen.

gotthemunchiespothead@yahoo.com? Now thats funny! ;D

Welcome aboard!

Jimmers

My dad told me "Never marry a girl whose father calls her princess...she probably thnks she is one!" ;D Of course he said that cuz I called both my daughters princess!

So glad you found this board, no one should be alone with this damned thing.

1: Get oxygen. even without insurance it's cheap. Tanks rent for $4-$5 a month, refills $10-$15. Read the 02 link on the left, shows you how to get set up.

2: Keep some energy drinks on hand, Monster, Rock Star, any containing the combo of caffeine and taurine. Chug one down as fast as you can when you feel an attack coming on.

Read like crazy. You suffer from a rare disorder, most doctors are not well versed in its treatment. Educate yourself here, then help your doc help you.

Welcome home.

Joe

I remember some slight but managable dull pain that didn't last very long.

I kid you not: When you are getting hit, try cooling off another part of your body, feet for example. You can stand barefoot on a concrete floor.......probably not feasible here in NYS in the winter. It has an effect on circulation which is part of this horror. I know it sounds nuts. It's cheap though.

Charlie

[quote author=4253475E58535F5B57320 link=1232964025/6#6 date=1233060974]Its amazing how much we are all alike when it comes to the pain and agony, and yes I know about residual pain.  Mine sits right on my shoulders like a cat ready to pounce and it seems like when it is there it usually takes nothing to unleash it.  

Mine stays in my head right where the original pain was.  And yeah, as long as that's there it seems easier to go into another attack.  I don't know if it is or not but that's what it seems

wrote on Jan 27^th, 2009 at 9:06am:

gotthemunchiespothead@yahoo.com? Now thats funny! ;D Welcome aboard! Jimmers

[smiley=blush.gif]
Thanks.  I'm glad you like it.  It started out in a yahoo chat room as a joke and was almost ITookADrinkOutofTheBong ROFLMFAO.  I don't know why but I have this thing with long names.  I try to make them long on here, my kids have way long names LoL.  

Could you PLEASE quit posting in your cutesy colors?  It is SO annoying, and difficult to try to read!

It is one thing to color a word or phrase, but your whole post is too much.

Thank you

Guiseppi wrote on Jan 27^th, 2009 at 10:12am:

My dad told me "Never marry a girl whose father calls her princess...she probably thnks she is one!" ;D Of course he said that cuz I called both my daughters princess! Hmmm.....my dad has never called me princess so I guess I'm marriable (not a real word I'm sure LOL), but I'm divorced and not sure if that's a good or bad thing LoL So glad you found this board, no one should be alone with this damned thing. For the longest time I thought I was the biggest baby ever.  Couldn't even deal with a "headache".  People would look at me like I was crazy when they heard or saw how it affected me.  My own ma tends to think I "over react".  It's nice to know I'm not crazy. 1: Get oxygen. even without insurance it's cheap. Tanks rent for $4-$5 a month, refills $10-$15. Read the 02 link on the left, shows you how to get set up. 2: Keep some energy drinks on hand, Monster, Rock Star, any containing the combo of caffeine and taurine. Chug one down as fast as you can when you feel an attack coming on. Read like crazy. You suffer from a rare disorder, most doctors are not well versed in its treatment. Educate yourself here, then help your doc help you. OmG this is so true.  I saw ER doc after ER doc plus my reg doc and kept getting told I had migraines or "just normal severe headaches".  I got rx'd perc's, oxy, lortabs, codine, and tons of other stuff I don't remember.  Sent to several neurologist.  Finally one told me it was cluster headaches and that there wasn't much to be done.  That was about all he told me.  Did say to follow up but I only got one more headache after that.  I ended up in the ER and the doc told me that clusters were just another type of migraines, gave me a rx of lortabs again and sent me home.  That was in 03.  I had one short episode in 05 but it was during a really bad time in my life and I didn't go in like I should have.  I also didn't do my own research like I should have.  Young and dumb I guess LoL.  I believed the docs.  Only started learning more during this session.  I asked a paramedic friend who got me more info than any doctor ever has than I knew where to go from there.  I found ya'll right away and watched a bit first LoL.  Some message boards are real clique-ish.  I'm glad this one wasn't :) Welcome home. Joe

Thanks Joe :).  Nice to finally find my way.
I'm Jennifer by the way.  

ClusterChuck wrote on Jan 28^th, 2009 at 12:33am:

Could you PLEASE quit posting in your cutesy colors?  It is SO annoying, and difficult to try to read! It is one thing to color a word or phrase, but your whole post is too much. Thank you

I'm sorry.  I didn't realize it was a problem.  Won't happen again :)

TY!!!  You are a SWEETHEART!!!

Chuck

ClusterChuck wrote on Jan 28^th, 2009 at 2:04am:

TY!!!  You are a SWEETHEART!!! Chuck

Naaahhhhhh.  I just appear that way at first.  I'm really mean and evil.  Pulling the wings off of fly's and pouring salt on snails MWAHAHAHA  [smiley=evil.gif] jkjk

PrincessJ wrote on Jan 28^th, 2009 at 3:51am:

Naaahhhhhh.  I just appear that way at first.  I'm really mean and evil.  Pulling the wings off of fly's and pouring salt on snails MWAHAHAHA  [smiley=evil.gif] jkjk

Cool.  You'll fit right in here then. [smiley=grin2.gif]

PrincessJ wrote on Jan 28^th, 2009 at 1:04am:

ClusterChuck wrote on Jan 28th, 2009 at 12:33am: Could you PLEASE quit posting in your cutesy colors?  It is SO annoying, and difficult to try to read! It is one thing to color a word or phrase, but your whole post is too much. Thank you I'm sorry.  I didn't realize it was a problem.  Won't happen again :)

Can you please go back to using a different color... Black text annoys me.

with warm regards,
Tony

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Tsk, tsk Tony!  ;)

Oh y'all giving the newbie a hard time already lol.

Well welcome. Sorry you have to be here. Your residual headaches are shadows. In Red Bull we trust. Call a social worker. Get a letter from your doc stating your problem and treatmens recommended. See if you can get some aid. When I first started with this I was married with young kids and had no insurance either. I was the working poor. Did I suffer. I abused my kids, I got violent from the pain and sickness with this. Because I was working I could not qualify for any aid. Don't get me started with politics and healthcare in the US. I lived in Ga at the time. I am here in Canada where healtcare is free. I feel for you gf. I hope you can get some help but like the other poster said oxygen is relatively cheap.

OMG check my spelling lol.  :D

Naaahhhhhh.  I just appear that way at first.  I'm really mean and evil.  Pulling the wings off of fly's and pouring salt on snails MWAHAHAHA   jkjk

Okay now I'm convinced you're really my eldest daughter posting on the board! A princess who pulls wings off of flies and salts snails!!!!

Rickyshot was talking about using the enrgy drinks to help with shadows. Any containing the combo of caffeine and taurine. Chug one down as fast as you can when a headache starts to help abort it. Also use to chase away those lingering headaches we call shadows.

Joe

(I like this kid!)

If ya don't like vibrant burple just scroll the post fer crissakes., voila......white.

                Kinder gentler Potter

PrincessJ wrote on Jan 28^th, 2009 at 3:51am:

ClusterChuck wrote on Jan 28th, 2009 at 2:04am: TY!!!  You are a SWEETHEART!!! Chuck Naaahhhhhh.  I just appear that way at first.  I'm really mean and evil.  Pulling the wings off of fly's and pouring salt on snails MWAHAHAHA  [smiley=evil.gif] jkjk

Oh wow - my long lost twin!! Come and help me plannin' more EVIL... oh wait.. she said "joke".. *sniff* I'm sooooo alone in the badlands LMAO

Helen,

I am open to lessons in evil doing..... Show me the way.

Jeannie

Lord help us all...Helen has a disciple :-[

Joe

Careful..... Joe,  Be verrrrrrrry careful.

Jeannie

You mean be afraid...be verrry verry afraid!!!!!

Joe

Well yes, that too!   AND.... there you go correcting me again!  LOL! [smiley=tongue.gif]

That's one    angle    you could take with that!!! :-*

Joe

Hardy Har Har!   [smiley=bash.gif]

Artonio wrote on Jan 28^th, 2009 at 8:22am:

PrincessJ wrote on Jan 28th, 2009 at 1:04am: ClusterChuck wrote on Jan 28th, 2009 at 12:33am: Could you PLEASE quit posting in your cutesy colors?  It is SO annoying, and difficult to try to read! It is one thing to color a word or phrase, but your whole post is too much. Thank you I'm sorry.  I didn't realize it was a problem.  Won't happen again :) Can you please go back to using a different color... Black text annoys me. with warm regards, Tony

Heeyyyy, I'm getting teased already.  Nifty LoL

I tried to reply to this and hit a wrong key so if it post twice I'm sorry



rickyshot wrote on Jan 28^th, 2009 at 9:56am:

Oh y'all giving the newbie a hard time already lol. Oh and it makes me feel so at home.  LoL Well welcome. Sorry you have to be here. Me too but I'm so glad I found ya'll Your residual headaches are shadows. In Red Bull we trust. I'll have to get a supply.  I didn't know they'd help at all and I'm not an energy drink drinker normally.  They all taste like baby tylenol to me LoL Call a social worker. Get a letter from your doc stating your problem and treatmens recommended. See if you can get some aid. When I first started with this I was married with young kids and had no insurance either. I was the working poor. Did I suffer. I abused my kids, I got violent from the pain and sickness with this. Yeah.  I've ended up neglecting my kids during the session.  My oldest Is almost 10 and the first attack I had in her life she was less than 18 months old.  She learned how to plug the fan in for me, how to rub my back (when I wasn't too sensitive) and how to hold my hair when I vomited (not often but the pain does cause it once in a while).  It's not something I'm proud of but I even locked her in her room a couple times when the pain got too bad.  I figured at least in her room she was safe if I passed out. Because I was working I could not qualify for any aid. Don't get me started with politics and healthcare in the US. I lived in Ga at the time. I am here in Canada where healtcare is free. I feel for you gf. I hope you can get some help but like the other poster said oxygen is relatively cheap.

I have a friend who's a paramedic and he said next time I went into an attack to call him and he'd come hook me up on the oxy for a few minutes and see if it helped.  I'm so greatful!!  If it does I'll def rent/buy a tank.

wrote on Jan 28^th, 2009 at 11:38am:

PrincessJ wrote on Jan 28th, 2009 at 3:51am: ClusterChuck wrote on Jan 28th, 2009 at 2:04am: TY!!!  You are a SWEETHEART!!! Chuck Naaahhhhhh.  I just appear that way at first.  I'm really mean and evil.  Pulling the wings off of fly's and pouring salt on snails MWAHAHAHA  [smiley=evil.gif] jkjk Oh wow - my long lost twin!! Come and help me plannin' more EVIL... oh wait.. she said "joke".. *sniff* I'm sooooo alone in the badlands LMAO

Well if you need help planning evil to do to people I'm your gal :D.  The critters and creatures though....just can't do it.  I poured salt on a snail once.  I was 9.  I cried for the rest of the day and still, 20 years later, feel horrible about it LOL.
But it did make me wonder.  Can you salt escargot?  ROFL