Hey Chalen, welcome aboard. This is a great place for info and support. kick your shoes off and hang out awhile your no longer alone
jim

     Just found this site. My name is Al and I'm 53 . Been havtng HA's since I was 19. I had from 2 to 6 a week till I was 38 and then went a couple of months between episodes. Now at 53 its every 1 1/2-2 yrs. between. I'm going through an cycle now with only verapamil that was only prescribed 2 yrs. ago. I've been up since 10pm and been between a 3 and 9 twice. Down to a 3 now.
  I want to thank everyone for all the info as I will be seeing the doc and demanding some meds. I didn't think anything would help but live through it.
            Thanks again-AL

My name's Jeff. I'm a teacher, writer and artist. I've been a CH for 12 years. Can't really tell you how I felt when I stumbled upon your site (now my site) and read the testimonials. I'm in the middle of a bad series and am emotionally raw. I wept when I read about others like myself who have reached deep inside to keep their hands on the steering wheel at the darkest moments of the deepest pain. I call my CH the Spirit Sword.

My first CH hit me while I was walking down the street after work. It was as if some unseen spirit had slipped up behind me and thrust a sword in my right temple. I was sure it was a stroke. I ended up on the ground and somehow made it to the emergency room. I thought for sure I was a goner. Now, 12 years later I just count myself lucky when I'm not in a series. The worst of the headaches puts me in places I never thought I had the strength to survive. All other pain I compare to that pain and its made me able to cope with things I thought could not be survived.

I've worked my way through a variety of treatments, all of them familiar to you I'm sure. When in a series I find jacking myself up on strong coffee helps take the edge off and I am currently using O2 (thank God for O2) and Maxalt. The Maxalt works sometimes but leaves me in a babbling brainwash. My wife, who is my best medicine, must suffer through the verbal diarrhea that comes after the CH passes. She also sufferes through her feelings of helplessness when the best of her ministrations do nothing to stop the sword. I'm very lucky.

The blessing in all of this misery is that when the CH departs (usually after 45 minutes to three hours and as if the spirit-sword is pulled out by some merciful hand) I find myself feeling euphoric. Even more valuable and delightful is that I have bursts of creativity as if the right side of my brain is supercharged. I'm an artist and writer and after the CH passes I've write poetry and draw and paint images that please me greatly. As a result I've been reading poetry at a local open mic and have gotten some positive responses from poets I already have much respect for. Not sure this would happen if I did not have the CH.

I want to say to all my brothers and sisters in Clusterville, I am so very happy to have found you and I wish you pain free days and nights and the hope that someday we'll find a way to appease the Spirit of the Sword.

What doesn't kill you makes you stronger.

Jeff

my name is kevin, 36, clusterhead 4 yrs.  I had surgery la  st year, excellent sucess. fantom itches my only complaint. no more pills or pain. contact Dr. Hurt for semi cure. It worked for me. He is in Houston, Texas. My Godsend!  I pray to all to contact him, he may be able to help get your life back. good luck!

Hi,

This is my first post. 

I am in the second week of my second episode.  First CH started in fall 2002.  I thought it wasnt coming back.

2-3 attacks per day.  5 weeks (1st episode) and I hope this episode is shorter...

No medication, I was diagnosed at the very end of my first episode.  But they did give me Maxalt.  Never used it and I had thrown it away after a few years...  Now I feel really stupid.

Take care guys, I am going to bed, finally...

My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois.  I have epilepsy and sleep apnea...not that those are related.  I've only had one seizure in 1981 and been on dilantin ever since.  I use a CPAP for apnea.  The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness)  and found almost immediate relief.  In my first episodes I had tanks of O2 (2004).  Then I got an oxygen concentrator which filters out the gases out of the air except oxygen.  This way I can use it anytime I need it when I'm home...although I cant take it with me.  I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house.  I searched the site and found some I might ask the MD. about.  The episodes have been getting worse each year...that is more intensity and more headaches per day. 

Thanks...Larry

Hi my name is Jan and I stay on a tiny island in the North of Scotland. I've chronic CH with little or no respite for 6 months. I've had Trigeminal Neuralgia for 8 years and thought that no pain could be as bad!!! Well wasn't I in for a nice surprise!
I had to laugh when I read a posting that related being afraid to sleep with the Freddie Kruger movies- yeah well I'm well an truly caught in a nightmare.  ; My kids say that my only redeeming quality in the past few months has been my sense of humour- they used to laugh an say I was insane- well now I;d probably get a certificate. Thanks to all who have posted their stories- its so nice to know that there are others who know that an Asprin be about as much use as a hole in the head- if you pardon the pun! Hope to hear from some of you soon

Hi,

I'm George.  I'm an episodic clusterhead, a lefty, and have been for forty years.  I used to cycle twice a year, but it's tapered off to once every three years. 

I live in Boise, Idaho with my wife, Elizabeth, and our daughter El.  You'll often find me hanging out on the "Getting to Know Ya" board and on the "General" board.  I lurked here when I was in cycle for about six years, but decided after the last one (earlier this year) to hang around for a while and see if I could lend a hand.  I don't sleep much (never have) so I'm often here late. 

I'm not an expert in CH, and I'm certainly not a doctor, but there are plenty of knowledgeable people here, and we can certainly get you in touch with the right person.

Best wishes for pain-free times ahead,

George

Hello Jan and Neil!
Jan it must be difficult for you living on a small island, I know another sufferer on Mull who obviously has similar problems, drop me an IM if you like and I'll put you in touch with each other. Lets see if we can't get you sorted out with some help and support (from all of us!) Have you ever tried O2 by the way?

Neil,
My son is going to be 5 on the 21st and he has CH too. He's due his 3rd cycle anytime now. I hate hearing of anyone as young as you having to put up with this, it makes me more determined than ever to help as much as I can. What meds have you tried so far? Have YOU tried o2? I love the stuff, its the best abortive ever for me. I'm glad to hear you have a good support network behind you.
Why don't you start a thread of your own listing your experiences to date? I'm sure alot of what you have to say would help others and we can put our heads together to help you as well 
Looking forward to hearing more from you
Helen

Hi Neil
Well, your long suffering girlfriend just has to be incredible if she is a "helen" too.. it's obvious! 
To get o2 just go to your doctor and tell him you want to try o2 as an abortive for CH, they have to fill in a HOOF form to send off to whatever O2 supplier does your area and then they call to arrange delivery. It all comes inclusive so you don't need to get a regulator anymore or a mask as they supply them. Personally I think the only mask worth using is a Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . It was developed by a cluster sufferer and so is just the best thing you can stick your face in!
Just under this thread are all the others, hit the start new topic button and set your own thread in action - looking forward to it!
Helen

Hi,
I am new here  ;  well, kinda I posted back in April-May  and I took some time off! I moved from Florida to Pa I am much happier now  I am happy to be back everyone was so kind to me when I joined.

Crystal

Hi Again 

I am living just outside of Pittsburgh in a small town Sewickley it is very nice my husband grew up here and all of his family still here very nice to be so close to family I have not set a Dr up yet but I am on the look out and will have one by next week I hope.

It seems like this dull pain may be a little stress or just change in weather and Alt.. ?? Long as I do not get back in a cycle I see myself as PF even tho I have a little knock in my head

Crystal

I'll keep in touch

Well I've been lurking  around this site since 2002 and been a member since 2004 but I've never really posted. Since this last episode I've been reading more posts than I care to count and I felt that I should Introduce myself.

My name is Nick I'm 25 and I've had Episodic CHs since 1998, although I have begun to believe that I've had a few attacks since the age of 8. Anyway Its the same story as many here, I was misdiagnosed for many years untill I found this website, and even then I had to fight my doctor every step of the way in order to get what I needed. If you don't want the lowdown on my medical history skip the next paragraph. 

I was in a car accident away from home when I was 18 and lost my glasses. So therefore when my first episode started within the week I naturally thought it was due to lack of corrected vision. After that episode I spent the next four years going through all of the Migraine medications as my clusters got stronger and stronger each cycle. My cycle was two times a year about a month and a half each time in the months of April to June then September to November. The all time low for me during those four years was when I tried to use the nasal imitrex spray to get rid of a kip 8, and ended up with trex trickling down into my mouth and throat. I didn't know projectile vomitting was really possible. So thats when I decided to take matters into my own hands, hence I turned to the internet and found this site. And eventually the Clusterbusters site as well. I went through all the medications here and the ones listed on OUCH as well with the exception of lithium. After getting no results I turned to clusterbusters, had some fungus tea  and now my cycle only seems to be happening once a year july to september. About 3-8 CHs a day. I have had success with imitrex injections but they were to expensive even after using the wonderful technique listed here. O2 was an issue between my doctor and I, he wouldn't prescribe me the high flow tank because I'm a smoker. And he didn't seem to believe me when I said it would stop the headaches in their tracks, I had reports from the internet too.

So for this new and exciting cycle (5 kip 9-10s so far) i'm using Hawiian Baby woodrose seeds as my preventative measure. Which seems to work pretty good for me... at least this time. Red Bulls to stop shadows and abort some CHs. Lastly I wanted to mention an over the counter product that helped in the beginning of my cycle with kip 5s and below... HeadON  (I know it sounds ridiculous). Anyway this stuff is like $8.00 for a chapstick type dispenser that smells kinda like vicks but less intense and feels like a wet spot that someone is blowing on but more intense. Like I said, it worked in the beginning of my cycle but it no longer does, I just wanted to pass on something that might help others.

You are all great people to live with these headaches and survive the PAIN!!!!! We could probably power the world if our endurance could be harnessed into energy. May you all have pain free days. Best wishes, keep the support going. There has to be a cure out there right?

Peace
Nick aka Soursmoke