Hi, my name is Jay. 

I've been living with clusters for six years now, but was not properly diagnosed until about three years ago.  I get them once a year, usually in the summer months.  For some reason, my cluster season started early this year, which kind of freaks me out.  It's bad enough that it happens at all, but I was a little more comfortable when it was predicatable. 

It sucks that no one really understands how debilitating it really is.. people offering me Tylenol and stuff.. it's all kind of insulting in a way, because I feel like they just don't believe it's as bad as I say it is.  Like I'm a wuss for complaining about a little headache.  Whatever.  I can handle a little pain, but a cluster is in a totally category, ya know?

Jay

Hi everyone, My name is Dan from London England.

I've had Chronic Cluster headaches for about 13 years. I'm 28 now married with a 3 year old daughter, who might i add is getting really good at being quite and bringing me nasal sprays when i have a headache. Top supporter and real Florence nightingale! lol

I've tried most medications and the ones which work usually give me about a year and a half without pain which is nice.

The worst thing i find about the CH's (besides the pain) is the fact that not many people out side CH.Com, get what it's all about. Most just assume you've got a slight headache and tell you to take an aspirin or something.

So that's me anyway. If anybody wants or needs anything then give me a shout. Even if you just want to speak to someone who gets what your on about.

Just like to big up Dr Peatfield at charing cross for all the good work he's done for all us CH sufferers in the UK. Without him I'd still be undiagnosed and alot worse off.

Ummm Hi!
I found this website , and I'm thankful for it!
I have had what I've been calling a 'skull cramp' kicking the 'you know what out' of me for the last six years spring time ... now for me it has a name --CH-- .
It scared me because I thought I was dying over and over again. At least sometimes I just wish that I could when the "claw' grips and shakes me.
I never cried befor these episodes, I feel helpless.
before the real pain comes I get pressure , like being in an airplane, or and I feel like I can fight it , but never for long, by trying to adjust the pressure in my ears, by yawning, pinching off my nose, stuff like that. but then OUCH !!!

Welcome aboard, Ccanniff and Ryan.

Charlotte

Hello everyone,

I'm Gerard from Holland. Just added something here on a topic from Flipflop after registering at your site also like on OUCH in Holland.
Try to deal with CH for about ten years now. Donn't have to explain further I guess.
47 years old. Working (luckely still..) in psychiatry.
For the last 4 months 5 to 8 attacks a day. Getting a kind of desperate but over the years found some tricks besides Imigran-injections and did a lot of research that I like to share with you.
And offcourse learn from you all also in our struggle to beat this torturing monster.
Soon I'll be posting my whereabouts here and hope to get responds.
I wish everyone all the strenght in those torturing, desperate hours wich we cann't explain to anyone but other ch's.
It is called the most painfull experience a human can suffer but it must be also the most lonely one.
For me that's very hard to deal with also.
Thank you for sharing. Try to get some sleep again till the next attack comes.
And I've only got half a Imigran left..Hope it's enough again.
Goodnight and strenght for those who are awake also.

Gerard

I am sorry you had to find us, but welcome aboard, Suzy and Dave, and Gerard.

Charlotte

Dear Colin

  Sorry you had to find us but welcome.  There are other options out there.  You will find that there is a wealth of info out here and there are many people from the UK that are more familiar with your options than I am here in the US.  You will hear a lot about Oxygen out here and it is worth looking into.  For now just read, read, read everything you can out here and acquire as much knowledge as you can.  Because of the nature of CH you will find that many doctors may be lacking in knowledge of this.  Yesterday I went to a doctor and it helped me immensely by being well informed.  Anyway wishing you many pain free ( PF ) days ahead and feel free to ask for help out here.....your not alone here.

Peace,

John

Hello all, glad to find you, sorry to be here! My name is Doug and I am just coming to grips with the diagnosis of CH. Been episodic for 3 years but had last year off. Seem to be paying for it this year, in month 3 and going strong, the beast is hungry this year. On prednisone last couple days so I'm ok right now. Just so happy to find this sight, it means so much to give and get support from others just like us. Can't wait to meet you all and I will apologize right now for what I'm sure will be many stupid questions to follow, I plan on being very active here sharing my success and failures with you and asking lots of questions!

Hi everyone, I've been a Clusterhead since I was about 16 and I'm 21 now. Got diagnosed when I was 18, my GP is awesome and decided to try and look up the headaches in a medical book. I feel like the youngest person on the boards. Haven't seen anyone younger anyway. Usually had CHs in the fall winter time, but it flipped on me last year when I got them in the summer, and it went away the second football started this last year. Found this site during that time last summer. Been in cycle for about a month and a half now. Can't take Calan (Verapamil) because it kills my endurance when we are trying to get to in season shape. Been using Imitrex which works perfect but makes me feel lackadaisical afterward. Just started on the O2 and it seems to help during shadows and sometimes afterward.

I love this site and all of you here. It really is all I got for support in cycle.

Avi

Hi Tony!

Welcome to ch.com!
I'm the resident Finn in here (oh yes, I'm here almost daily) and I'm so glad to see another Finn joining the family; there's few of us in here.

Now, I've lived with the beast a lot shorter time than you have. I've been a chronic and now episodic. I quit using meds after being in remission for 11 months. This is the third cycle I'm using just energy drinks (hits), caffeine tablets(hits), taurine-guarana chewing gum(shadows), ginger ale (shadows) and ice as my ch treatment kit. Works for me!

Sorry that you're in pain, wishing you PF time shortly,
Sanna

Hi Mikko!

Warm welcome to ch.com to you as well!
I'm sorry that you're in pain, but I'm glad it brought you here - this is the best place for information & support for clusterheads.

Wishing you PF time,
Sanna

Hi to all,

   I am Dave and have been a member for sometime but just hanging around.   I am married with three "hellians" (2 boys and 1 girl). I have been a suffer of CH for about 15 years and for the most part, have been getting by.  Last year was the worst stretch I have ever experienced and need I say it broke my will as a person.  I made it through but unfortunely my cycle has just started again  . I have learned alot from this site and at very trying times, just reading posts from you all have kept me going!  Thank-You

I'm Tami, I'm 43.  My husband John, was diagnosed with CH in December of 07 at age 44.  6 months now and no pain free days.  In the 25 years we have been married, I never seen anything take control of my Husband as this damn CH has.  It was overnight that he became lost to the CH.  He went from never being able to sit down, busy and always working on something to not being able to function.  It was like something took over his mind and soul.  He couldn't think, work or do anything at all really.   The pain!!! OMG, the pain!!!!!  
He would try to get up and go to work, passing out, running into the walls, crying, throwing up, screaming pain.  He couldn't even think.

Overnight, my husband was a different person.  Lost, confused, dazed, unable to drive as the attach comes on so quickly with the dizzy ness and sometimes fainting, life at work ended.  

The first Doctor who diagnosed him told me that my Husband wouldn't be able to work for a few months.  Said, John would be better in 6-8 weeks.  So we had so much hope that this CH would just be gone one day.  12 weeks went by before John could even function.  He was able to wash the dishes, dry them and put them away.  Now, I don't know if the CH wiped him out to the point that he was so out of it or if the medications wiped him out.  It really took 12 weeks for him to be able to do a simple choir.   By then, he had gained 30 pounds and tried 23 different prescriptions.   The medications make him more ill (sick feeling) then CH and I'm sure they are damaging internal organs.   CH has taken over his life.  

I started doing research and here I am at clusterheadaches.com.  I've read so much in the past few months!  Nothing promising.  We now understand that John is falling into the Chronic CH group.  Every day I pray for a remission, if only a few days.  Please some relief!!

Life changed for us.  John tried going back to work and in less then a couple months, he had been through three employers.  Fired, layed off, lack of work, whatever!!!  

I now work full time and next month we get medical insurance.  I've been told to file for SSD for John.  He couldn't think long enough to file the paperwork for himself, lol.  Not funny, I know!  Who ever said that CH is NOT disabling, only debilitating?  I've seen disabled men and women live a more productive life then the lonely painful life of a CH sufferer!    

We are trying to adapt to life in CH world.  Doing okay, sometimes, sad, angry and always hopeful for a cure or remission.