Hi.new guy here.My name is Barry and I have suffered Chronic Cluster headaches since I was 18 yrs old.w/very little remission.I am now 44.so,that is along freakin time..i just found this site and im so glad..I have felt so alone in what seems all my life.I have never run into another person that has had these.well,i have now and I just cant believe it.but, even though I see others have this terrible desease I still feel alone and I bet everyone here feels like I do.Im sure there's a woman or two here also. but, as we all know the women who suffer from this is so rare that meeting one of you will be unbelievable.!!.I also wanna say, Thank you to whoever created this site.i never thought id see the day where I ran into another Cluster sufferer.I may not be meeting you in person but at least there's proof that im not the only one on this earth that has these..I cant wait to get involed,even though telling one of those horrific stories could bring one on.and im sure you all have felt the same.im so sorry for all of you that have to endure this Rare condition,but I can honestly relate.Anyways,God Bless you all and thanks again for having me.I hope...Barry...

PS.i I have to add this for my own safety..I will be back to tell my stories but it will take time.i am in fear right now just talking about em because one could hit.I have suffered these along time and at my age I fear I could have a heart attack from them.If it wasn't for The Good Lord I would've killed myself by now.but,dont worry I wouldn't do that.I have to endure no matter what.these things are devastating me and there's no relief hardly ever.My oxygen at 15 liters a minute by facemask does help if I get to it in time.at night it's just a given.there gonna wake me up.and it's too late by then.but,anyways,i will be back to share some of these horrific stories like yo uall have.but like I said im scared right now in fear,one might hit just talking about it.they are so predictable it's not funny.there are times they aren't but mostly are.when I tell people or my family about em,it's like they don't believe me.I wish I could put one of these into their brain just for 30 seconds so they could feel what im talking about.but,that wouldn't be fair cause that would be possible murder.anyways,i have to stop cause im crying my butt off just venting this much info..Im so sorry for all of you.we are a very rare breed of people.and nobody I know will ever understand this desease.my wife does a little bit.and she is there every minute.but,to be truthful,only God knows.and why He hasn't taken them away by now,is only for Him to know.He has made me a stronger person because of it though.anyways, i will see you all very soon ok.God Bless you all.Barry R.

We're glad that you found us and will look forward to hearng about your experiences.

While you're thinking ahead about what you would like to share with us, please:

1. It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.

2. gather a chronlogical list of the docs (specialty) you have seen, including present one;

3. a list of the treatments (meds, by name, dose, duration of use, how effective) you have used over the years.

As you have seen from reading here, we're rather action oriented and we like to get our teeth into helping you find treatments which will help you.

Bob (78 and still moving!)

Hi Barry and welcome. You've found a new family here with people all over the world who know just what you go through. So nobody will tell you to take an asparin or something equally useless when you've a CH.

Good to see that you've got oxygen, but I'd suggest you read up how we've found how to use it very effectively. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Are you using a non-rebreather mask? Can your regulator go over 15lpm (I abort almost 3 times quicker at 25lpm)?

Have you also got injectable imitrex (sumatriptan / imigran)? This can kill off a CH in about 5 minutes so it means you can have it where you can't take oxygen, like flying.

Have you got a preventive, something like verapamil or lithium? These can help cut down how many CH you get and that can make a big difference as a CH prevented is a whole lot of pain you've missed.

Also look at how we are using vitamin D3 as a preventive. I've gone over 2.5 years CH pain free with some over 3!

Once you've an effective preventive plus abortives you'll find that a lot of the fear factors go away, letting you enjoy life between the CHs. Talking about CH won't bring one on unless it was going to happen anyway.

Keep reading, you'll learn so much here and ask any questions you can think of.

And vent all you like, we totally understand.

Bear,

So sorry to read about what you are going through :( . My husband gets CH episodically and goodness knows he suffers terribly...so I can't imagine what it's like to be a chronic sufferer.

I really encourage you to try Batch's
Anti-Inflammatory Regimen developed for cluster headache treatment:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
--> scroll down to the photo that shows what supplements to buy at Costco if you have one locally

My husband has been taking the Regimen for four weeks and it seems like it's starting to help (fingers crossed), but some people do better within days.

Hang in there...

Welcome ,sorry to hear of your suffering. I strongly recommend you follow what the others have said and try the D3eus Ex Machina! Good luck!

G'day Bear, and welcome.
Your best line of attack is to get onto the vitamin D3 regime
with an 80% chance of becoming pain free. I've been pain
free for 18mths after suffering from CHs for 43yrs.

Hoppy.

Hi Bear, and welcome.
I'm one of those rare women you talk of, but believe me there are plenty of us here. My own neurologist doesn't believe I have CH because I'm  woman, so I spent years without a diagnosis and incorrect meds. Finally my GP prescribed the right stuff, but only after I had learned from this site, and asked for it. I'm 64 years old and like you I often worry about what the stress of prolonged attack will do to my body.

Our best line of defense is O2 which you already have (do you use a non rebreather mask) and Sumatriptan injections (may be called imitrex or imigran depending on where you live).Also read up on these boards about a vitamin D3 regime that has taken the boards by storm and been of great benefit to dozens of people.

Like you, I wouldn't wish this terrible affliction on anybody, but I have often thought that every doctor should have just one and then imagine the rest of his or her life with it. It would make them a lot more understanding and  there would be a lot less of us suffering needlessly.

Don't leave it too long before you come back to talk to us,We are always here to listen and for the first time in your life you have found people who truly understand. This site has given me information about the correct meds I needed, the knowledge that I'm not alone, new friends all over the world, and the will to live. The way I cope with my CH has changed drastically since I came here, and If I were to find a cure tomorrow, I would still come here.

Best wishes
Maz