Hello all (for first time).

I have had clusters for 20 years.  The first 14 years were episodic but nearly 7 years ago, I commenced a chronic cycle which is still going to this day.

I use a variety of methods to assist, in fact, too many to mention in a first post.  I suppose I'm posting this in the hope that just one person may understand a hellishly long cycle.

I am essentially a prisoner in my home (or in fact my parents' home as I've lost my job and the ability to completely look after myself).  I have been to one social event in the past 7 years.  God I feel lonely.

It's curious (or maybe not) and I've only just realised it as I'm writing this but I don't see how you guys can talk about headaches while you are suffering yourself.  I admire you enormously, particularly in the support you give to new sufferers.  To put it bluntly, I have only stayed sane by developing an ability to not look past the end of the day and by not thinking or talking about my headaches in any substantial form.

I would ask one question however.  Do others suffer such long chronic cycles?  My Neurologist (who is really quite good) is at a loss as has been everyone I have dealt with.  I would love to hear from someone on that issue.

Well, as said, I admire the support that you provide to those suffering the vile illness of ch.  Good will and good health to all.

Regards

Bazz

Bazz wrote on Dec 1^st, 2008 at 5:03am:

As of just now, Bazz, you've been to two social events and this is the second.

Welcome to the party.

No need to explain any more than you want to.  We know only too well, from the inside, what this can do to a person. Make yourself comfortable, explore the house and I particularly reccommend the library - one of the great repositories of CH info on the planet.

Swimming naked at midnight is fine but, please, no glass around the pool.

Otherwise, we have secret keys to prison doors and offer them free-for-nothing to all other innocent convicts incarcerated for crimes never committed.

It's bust-out time, Bazz, and we're the ones who'll aid and abet and to hell with the consequences.

Cheers, beers and only good days ahead,

Brian down under.

I'm a supporter of 18 years and it makes me sad that you've become so isolated.  My hubby was chronic for two 18-month periods and it was hell on all of us.

I know we do tend to get out of the habit of entertaining and become more insular when the chronic cycles are in full swing.  I hope you get some excellent meds and treatment advice here so you can re-enter the world and form some connections outside of home.  Hopefully something will work that allows you more freedom.

We're here when you need us.

Welcome, sorry you had to come lookin' for us.  In order to share knowledge, it's important to know what meds you have tried - both for preventative and abortive. 

As for your mental condition, I'd have to say maybe it's time to try something new.  You say you have not done anything in 7 years.  That hasn't helped you, so it's time to try something new.  What kind of things do you enjoy?  Hobbies?  Are you active physically, like yard work or exercise?

Do you drink coffee?
Do you drink alcohol?
Do you take pain meds?
Do you take naps?

Put a log on the fire and sit down.  Take my hand and tell us your story.  Together we will find relief.

B$

Don't let that negative attitude rule your life! I'm a 12 year chronic and I have most certainly gone through periods where I didn't think I could go on. I couldn't see the point, I was tired of fighting.

The good news: There are ways to make your life better. Stick around here and read. Keep reading until you can't read anymore.

Marc

Well hello to all again.  Now that i've stopped weeping (that comment regarding my second social event really killed me), I'll try to give a slight account of my situation.

Yes and yes to oxygen.  It was very effective for me for about 16 years even when I was using the appalling rebreather masks.  Unfortunately, my headaches have taken on a kind of form which have reduced it's effectiveness greatly.

About the best way to describe it is that for the last four years, I have had one single headache which sits like a very painful ghost and surges and abates at four given times per day.  I don't know for sure but guess that this is the principal reason for the reduction in Oxygen effectiveness as the headaches are long established by the time the surge hits.  As said however, I just don't know for sure.

I don't drink,nap or take pain meds other than related to my head.  I do drink coffee.

In fact, coffee has been of enormous assistance to me.  The explanation would take a really detailed discussion of the differing types of headaches I suffer (there are three quite distinct types but all definitely cluster) and that discussion is a little beyond me on this post.  I will try again.

On the matter of preventative meds, I've tried a vast range over the last 20 years (vorapamil and the like).  I'll need to get a list from my Neurologist (there has been so many) to give a complete picture.

The fact that I haven't done anything for seven years is not a matter of choice.  The timing of my headaches (1am, 7am, 7pm, 11pm) combined with substantial medication regimes for pre-existing phsyciatric conditions just make going out largely impossible.  Sorry but I can't embellish more on this just yet.

Well, I can only say that it is a delight to talk about cluster headaches and not have to explain it for once.  That said, I think I'm done for this post.

Nice to hear from everyone.  Your comments are much appreciated.

Regards

Bazz                  

welcome bazz
im 7 year chronice and i get 6 visits a day for a dance. i do still have a job but barely. i see a day when i may be in your situation myself.
ch can rob you of so much marriage,money,job,freindships etc.
you are among family here and we do understand. stick with us help is on the way.

Afternoon all

Before I answer the questions raised, I have to say that Mity, I am both delighted (for me) and appalled for you that you know this ghost.  Thanks for sharing that with me.  As for "on my knees", I marvel that you can work at all with 6 visits a day.  Respect.

Bmonee, the only meds I take for my headaches are Imigran and Indocid (a common treatment for Gout pain).  The Imigran is fabulously effective but I'm limited to 1 per month due to a dodgy heart.  In truth, the Indocid (in suppository form) has been my regular medication and a good friend indeed.  I should say that I learnt very early in my career that pain meds are hopelessly outclassed by a cluster headache.

I get three different types of headache.  The first (which I get at 11pm and 1am) is what I call the "hollow man" in that I get all of the traditional pain of the ch but the pain seems to be right at the outer extremity of the eye rather than boring in right behind the eye (hope that makes sense).  These headaches are responsive to two or three cups of very strong black coffee (usually two) which diminish the severity of the pain until I can fall asleep again.

The second type (7am) is best categorised as a cross between a very bad headache and a ghost.  These don't have the hollow feel but neither do they send me to my knees.  I just have to wait this out.  Until now, I have had no effective means of dealing with these (as I have to save my medication for my night-time ch which is much much worse).

The third type is the textbook ch devil.  This is when I reach for the Indocid, Imigran or just go along for the ride. 

Hope that explains in some way what I said earlier.

I am very interested in the fact that you use such a high rate for your oxygen.  I would dearly love to get the oxygen working again.  This is definitely worth following up for me and I thank you for the heads-up.

Just to let you know, I don't nap, drink or take basic meds so I guess I'm doin at least one thing right

Cheers to all

Bazz      

Bazz wrote on Dec 1^st, 2008 at 10:21pm:

The actual gear involved varies greatly from country to country, as does the means of obtaining it, but for every brick wall you run up against we've a jack-hammer hidden in a safe-house nearby.

Help is never more than a post or PM away and a certain party requests the return of her underwear.

Seventy percent of CHeads could be wrong, but it's unlikely.

O2 is certainly worth another visit,

Brian.

I am so sorry that you are going through chronic ch's.  I can't imagine going through that pain all the time.  You are a very strong person.  I wish you all the strength to get through this time.

Hello again,

Mity, I am really sorry but I just couldn't think of any other way to put that.  I actually grimaced as I typed it but didn't know what else to say.  I gather from your lack of follow-up abuse that you have taken this in it's intended spirit so much thanks for that.

Bmonee, I haven't tried a melatonin cocktail at night (or any other form of preventative) as I am always, and I mean always suffering a headache at night before sleep.  Because the basic ghost/headache is there all day but starts to build around 4pm into a full blown ch by 7pm, I don't really get the chance to prevent it if you know what I mean.

I wish I could say that I was exaggerating with the rigidity of my cycle but unfortunately, it is completely accurate to within about 1/2 hour. 

And to AussieBrian, cheers dude.  Now if you could just indicate to me where I might be able to grab a more efficient face mask in Brisbane (or Queensland) I would be mighty grateful indeed (in fact, that underwear would be returned forthwith).   

To Laura thank you for your kind words.  I do not know your ch history but can reaffirm beyond any doubt that there are levels of strength in us all waiting to be tapped if needed.  I suppose what i'm saying is that anyone can be strong in the right circumstances.  I'm sorry if that sounds unduly patronising as it is truly not meant to be.  I guess I'm saying I don't consider myself strong, just human.  Everyone is, except for my mother. (boom tish).

Anyway, cheers to all.  Would love to hear from you Brian.

Regards

Bazz

[/color]  no worries Bazz....I am a Canadian eh...

try the O2 advice you are getting...and good luck

Paul