Hello everyone.  I've been coming on here for about 5 years now.  I have to admit, I only come on here when I am going through an episode.  I'm trying to change that now, though.  I've had CH since my late teens.  I'm 28 now.  I use amiltryptlin (sic) and verapimil.  They are the only things that work for me aside from Prednisone.  But prednisone tore up my joints, so I don't take it anymore.  This site was a lifesaver for me as well.  No one understands like ya'll do!  And no one is as informative either!

hi everyone my name is jeff . im not too computer savy but im learning . i have had clusters since 2001. '06 was my first full year with out pain. doc put me on verapimil 360 mg . 13 months later they're back worse than ever . my gp set me up with a neurologist  24 of this month any help with determining if this doc. is for me what do you look for, guestions i can ask. im sure after some time using this site with all of you communicating like this will be easier. my wife is robinr on supporters side if you see her say hi thanks so much for being here.

Hi everyone. This is robinr, jeffr's wife. I just wanted to say hello since he introduced me in his first message.

It's been hard this last few weeks. Jeff's headaches were GONE until our MD here lowered his dosage, and then BANG, they have come back with fangs. BIG UGLY FANGS.

We're glad we've found this site and hope to get some insight into what questions to ask when Jeff goes to the neurologist later this month.

He's gone from zero headaches for over a year to two or three every night. And I feel so helpless when they come. It's hard to not be able to help someone you love when they are hurting so badly. The helplessness I feel is just overwhelming. Sometimes I just leave the room because I know there is nothing I can do.

Anyway, we do appreciate you being here, and I hope our posts don't get lost in this very long thread. We need your help.

Thanks,

Robin (and Jeff)

#1 paul thanks for putting a face to the s/n............nice to put a face to the name Lisa.......u sure are a cutie hun!!!!

Y'ello!

My name is Barry; I'm from Edinburgh, in Scotland. Believe it or not, I only discovered today - after ten years - that I have been suffering from CH. What a relief it was to come across this site.

For the past decade my CH has frustrated and upset a lot of people I've lived and/ or had relationships with. Why? Because they, like me, had no idea what was wrong with me. At times, I thought I had some form of brain tumour, and even describing my symptoms to Doctors didn't help. "Take some painkillers," they'd say. "But they don't work," I'd reply back.

Now I feel a little bit better knowing exactly what it is I have and, that, there are other people out there (and hopefully nearby in the UK) willing to share their experiences and advice on combating this debiltating problem.

Over the years, the strength of my CH has forced me out of work, caused many a problem at social occasions, and resulted in whole days of my life gone missing.

Anyway, enough bleating. Hello to everyone on the board!

Cheers,

Barry

Hello Genss, Jeff Robin and Joe and welcome!

I'm sorry I missed seeing you get here before but I'm very glad you found us and I hope we can be of help to you.

If you'd like to post a thread of your own on the board with your experiences to date and what meds you've tried etc we can all pull together to see if we can come up with anything to help you.

Robin you are welcome to post anywhere but please bear in mind we do have a supporters board especially for any help YOU need. Its a hard job being a supporter and we value our supporters higher than rubies here so a big thank you from me too for all you do. Please don't feel you can only post there though, you're welcome EVERYWHERE!!

Tony I remember you, welcome back hon how are you doing?

Take care everyone
Helen

Hi everyone,

I've been diagnosed since 2001 with episodic CH combined with tension HA.  Looking back though I think I may have had CH since I was about 6 with breaks for a few years in between.  Since 2001 I haven't had one true PF day, however haven't had a full CH cycle since 2002. 

I have the awful feeling that I'm in for another cycle, sitting here with a kip 6 and increasing.  Been back to the Neuro and trying Inderal, been on it for about a week and a bit and it doesn't seem to be doing much.  Got given Imigran as an abortive but in tablet form and seems like it takes too long to work.  Anyone have the same problem?

I'm glad I've found this site and I hope to get to know you all.

duckie (aka Lii)

Thanks mate, I'll look into the Oxygen.... anything that works!!! Duckie

Hey all, I'm Joe and I live in London, England. I've been having headaches since Monday last week (12th Feb 2007). I went to the doctors on Wednesday and they said that I might have Cluster Headaches. It's now been a week exactly and they haven't gone away in fact they have got a bit worse. Went to the doctors today and they gave me Sumatriptan nasal spray which seems to have taken the edge off it.

I'm still not sure if I have been properly diagnosed yet and am praying that I don't have CH. I'm also frightened as hell that they are going to get worse. I think I might be a 5 on the KIP scale but that went up to 6 today. Fortunately I only get them in the day so far and have been able to sleep without interruption which is a small mercy.

So more about me and less about CH. I am 25, single, studying to be a Barrister and thankfully nearly finished, concentrating at the moment is near impossible. Here is a picture of me on holiday and before the start of this cycle (if that is what it is):

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I guess you'll be hearing more from me if my doctor's diagnosis is correct but if not (which I hope) and in any case, may I wish pain free days to everyone.

Joe xXx

hi everyone,
Im christine, 37 yrs old,  live in new jersey.  I havent been here in a long time, because stupid me actually thought that I was cured.  I started verapamil during my last ch bout, almost two years ago.  It seemedto work so good.  clusters cleared up, and i stayed on a very mild dose ever since then. I thought I would never get them again.  Well they are back with a vengence and the verapamil isnt working like it did before, and Im on too many meds to list.  Nobody else would ever understand except another cluster head.  Sometimes it would be nice to talk to someone who knows what we go through. I have never met another person with this problem. 
     I have a great family, three kids and a great husband who goes through hell with my problem as well.  Now I have the underlying pain that never goes away, like leftover damage or somehting.  Thank god I finally found a doctor who knows what she is doing.  I will go and put a smile on and stop complaining because I think everyone around me is sick of hearing that my head hurts.  Maybe somebody on this site can understand when nobody else can


Chrisw

Scott,

Thanx for the help, Ive got a tank of O2, and a cabinet full of Imitrex shots.  I try not to us e them unless im in a full blown 10 scale ha.  They work really good, but I just feel like crap all the time now.  I cant take imitrex all day every day  I swear, one day these things will be the death of me.  either i will have a heart attack from all the meds. or a stroke or suicide.  im not having full blown pain its just like im always on the verge.  how are you coping?

Chris

Hikerguy,
Welcome and post a houdy in the getting to know you section. There's a few from your area here. Stick around
jb
Go Blue!!

Rosa,

I am so sorry that you are going through this.  I feel for you, and I understand because I am feeling the same pain.  Where in Mexico do youlive?  I just got back from a cruise, we had one day in Cozumel, and I thought that it was the most beautiful, fun place ever.  I want to go back soooo badly.  the people there were so nice and friendly, the beaches were beautiful.  The weather was great,  while the weather here is freezing and wet.  Cant wait until spring.

Chris w