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

   

Hi Bazz-

Welcome -  you certainly have come to the right place.   Sounds like you have done your fair share of suffering.

There is tons of information and support here.  I am sure you have gone thru many different types of meds and treatments.  Most of us here have too and many have been misdiagnosed as well.  

We would love to hear what medication you are taking and what treatments you have tried in the past.  THis may help us understand your situation better and its possible with the years of experience here that someone may have something to suggest .

Sorry you've got these got awful things but I am glad you are here.

kelly

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

I have been to one social event in the past 7 years.  God I feel lonely.

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.

Find the Deep Iron within yourself, it is there, you only have to look for it!

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 to another home outside of your parents home where understanding and care is given and received freely.

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$

What Bmonee said, do take the time to tell us about your routine. We've got a zillion years of experience on the board. Maybe someone will have an idea you haven't tried yet.

Welcome home brother, you certainly are not alone anymore.

Guiseppi

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

Hi Bazz and Welcome Home

 Ditto all the above . . . you're not alone with this thing anymore.

 I'll be the first to ask . . . have you tried oxygen?  First-line abortive for most of us . . . works for 70% of us to abort.  Used early-on in the attack, I can kill him in minutes.  You're about to meet a lot of "oxygen pushers".

 Give us all the info you can and start reading all the links on the left.

 Be Safe,  PFDANs


    Richard

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                  

Hi Bazz, and thanks for sharing.
You mention several distinct types of cluster headaches.  Can you elaborate on how the pain feels and any other symptoms you have?

Regarding pain meds.......personally speaking........are a waste of time and liver.  NSAIDs and other pain meds are totally useless for clusterheadaches, and I bet less than 3% of the people here will disagree with me.  I used them for a while before i learned that they actually are triggers for me.

Also, on the Oxygen, about a year and a half ago, it stopped working for me.  That is when i upped the flow to 30lpm and got a large reservoir bag for the O2.  It made a good difference and now O2 works for me again.  

Naps, pain meds and alcohol are big triggers for me.  Just thought I'd pass that along.......

Again, Welcome
B$

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.

"I have had one single headache which sits like a very painful ghost and surges and abates at four given times per day."

Bazz, you are not alone. I too have come to know this ghost.  These CH have their own way of morphing over time in some.  

Hopefully they will start to lessen their intensity and frequency for you.


Paul

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          

1 extra thing crossed my mind.  
Have you tried taking melatonin or a melatonin/benadryl cocktail before bed?  I take the cocktail and it helps me.  I would say it reduces the number of hits by half........but i have never had such a rigid schedule like yours where its the same time every night.  

A lot of us have taken melatonin and think it helps nicely.

B$

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

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.

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.

Hi again Bazz,
"I have to say that Mity, I am both delighted "  - thanks alot!!!
"I get three different types of headache.  The first...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)....which diminish the severity of the pain until I can fall asleep again."  - I also know the "hollow man" but coffee does not make him disappear..he just fades in and out at will.

"The second type...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)."  - again for me these are one sided but not as sharply intense or as eye-focussed as CH

"The third type is the textbook ch devil."    - classic for sure

and I have a fourth known clinically as Cluster Tic Syndrome which is identified as electrical shock impulses shooting through the nerves. generally these a can be stimulated by touch in the nerve system in the face but in my case the neuralgia is all in the brain/optic nerve system and the electric impulses come from multiple directions randomly and i physically dodge them as they pierce thru my brain at lightning bolt speed - not fun but these ones can be somewhat diminished ( thank God) with a combination of Amitriptylene and Topamax.

Paul

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.

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  

This is a good place to start, Bazz, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and the only modification required is to remove the strap from the mask (serious safety concern).

Successful O2 users are pretty much unaninimous in that minimum pressure should be 15lpm so ensure you get a reg that goes this far and it must be a non-rebreather mask.

Many doctors and specialists are reluctant about giving out scrips for O2 but welders' gear is identical and easily adapted, just don't tell them it's for personal use.

It's also worth having a yarn with Barry-T-Coles who's a bit of an expert on the subject. His excuse for often being away from the computer is that he works a lot in the bush hugging trees and passing water, but the truth is much more interesting.

I've also been asked to thank you about the return of the underwear but it was the wrong set.

Cheers and beer,

Brian up north

"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."[color=#00ff00] [/color]  no worries Bazz....I am a Canadian eh...

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

Paul