Hi everybody, 29yo guy from australia here. had cluster headaches most of my life, up until I was a teen they were very sporadic coming months apart and were mistaken for migraines by everyone including myself. I still say migraine most of the time when talking about my headaches out of habit, and I'm getting the feeling this is a big whoops.

Last 4 years they've come in April with a vengeance while the rest of the year is sporadic attacks weeks or months apart. They've nearly cost me everything professionally, academically and socially.

2 things I read that I knew I was in the right place.

"falling asleep during a cluster attack is NOT POSSIBLE."

been awake for 28hrs with a 28hr long dull thud that keeps spiking in bouts of claw hammer in the eye socket pain every 2 or so hours, even more painful if I try to sleep. Oddly enough I'm not tired in the least. :D

"Many mothers who are cluster sufferers describe it as a pain much worse than natural childbirth."

I was going to suggest this to a nurse but she looked like a mother and I figured she might hit me in the head if I dared hint at it.


I've been prescribed a lot of things over the years, this is what I can remember without thinking too hard.

Panadeine forte: (prescription in australia) taking this at the moment, probably because I kept saying migraine instead of cluster headache at the emergency room. It isn't doing much for the pain and can only take so many in a day.

Cafergot: seemed to work as a preventative, but once again can only take so many in a day and have to catch the headache before it develops. It hasn't helped at all with the April spikes. I suspect my out of cycle headaches are quite short in duration so whatever I take it seems like it gets rid of it.

Variety of anti-depressants: (Endep and Effexor 2 most familiar) I've been diagnosed with anxiety-depression and that's what they gave them to me for, not headaches. Hard not to be anxious and depressed when ya got cluster headaches I figure.  Read a few things about Endep possibly helping with headaches, and I have an inkling my headaches are related to serotonin and/or dopamine levels somehow.

I have a very low opinion of anti depressants after numerous negative reactions to several different sorts, I even suspect they've caused some of my problems. I do accept that they work for some people, just not me at the moment.

My past mode of coping with the april headaches is rage blindly, drink heavily, destroy everything in my life.  >:( Thought I'd do something different this year and I'm trying to work with doctors to find a way to manage them. Not much luck so far. routine cat scan coming up, not expecting it to turn anything up, it didn't 4 years ago. Off to a specialist after that I hope.

Coping with my out of cycle sporadic headaches consists of PAAAAIN, OTC painkillers/sedatives, pain subsides, sleep. As said earlier I don't think the pills are actually doing much and it's just the headaches are much shorter and the pain slightly less severe. So when the headaches subsides and I fall asleep I think it's the pills. Slowly wising up to the patterns, but yeah I expect they'll change once I think I have a firm grasp of something. :P

Pleasure to meet you all, kinda...

I'm guessing you've all heard the, "I think you'll have to amputate doc." line 1000 times. :-/

...You'll have to amputate!!!   That is funny ;D

Hi Max,

Welcome.  You will find lots to help here...  

I did not read anything about oxygen.  Have you and your docs tried using high flow oxygen to help manage your attacks as an abortive?
It might be worth a try.

Also, I was reading that you have been, in the past, drinking heavily during cycle.  Just out of curiosity, did you notice a decrease or absence of CH the day after a good night of drinking?  

Hope you find pain free time soon.

Thomas

wrote on Apr 14^th, 2009 at 11:07am:

I did not read anything about oxygen.  Have you and your docs tried using high flow oxygen to help manage your attacks as an abortive? It might be worth a try.

nah was just reading about oxygen actually, could well be a drug free option which i'd love. Take it up with the doc after he makes sure it's not a tumour for what feels like the umpteenth time.



wrote on Apr 14^th, 2009 at 11:07am:

Also, I was reading that you have been, in the past, drinking heavily during cycle.  Just out of curiosity, did you notice a decrease or absence of CH the day after a good night of drinking?

 

Alcohol during a CH cycle was a funny one, sometimes a glass of spirits and soda would bring instant relief, which I'd often abuse by drinking more and enjoying some pain free time with my mates. Other times I wrote myself off alone for days on end with a bottle or 2, just riding a wave of pain in a drunken haze until I passed out. But yeah, often times after heavily boozing I'd have a few CH free hours or maybe a day before they set back in. 2 bottle hangovers aren't fun either though.. Probably should've gone to hospital for alcohol poisoning more than once that particular year.. Still better than CH..

I am one the meds make it worse for so I don't take them.

Wow, the booze would trigger mine, so I run from alcohol when my episodes start.

Your not the only one that gets anxious and depressed some admit it some don't.

Your right it is a Serotonin thing. :D

Welcome!

Cass

G'day, and welcome to the nut-hut. Here's a link about oxygen put together by a tree-hugging, water-passing sand groper who says he never ate any babies during lent.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Otherwise most people find that sending beer-vouchers to Rollingstone Hotel via Townsville (Attn AB) is by far the most effective means of battling this beast.

Go the maroons,

Brian up north.

We don't all react to alcohol in the same way, but I'm like the Coach.  Can't touch the stuff when I'm in cycle.

Just a swallow will do it, and it invariably hammers me with an attack within minutes.  Aversive conditioning--and it's been most effective.

YMMV.  People are entirely free to do as they wish, of course, but as far as I'm concerned--no way.  Isn't worth it.

Best wishes,

George    

I came to this thread expecting Orks. >_>;;

I am actually a warhammerer, I can be found on phoenix throne server under the handle Kaiowas when I'm well enough to play. Reason I called the thread Waaagh is 'cos I can get a bit orklike when I get the C.H.

Tried some oxygen last night at the hospital, Didn't follow the instructions here on how to use it though (to out of it at the time to follow easy to read instructions) and also had panadeine forte and nurofen in my system so it wasn't the best time to test it out. Still, the pain went away and I fell asleep for 6 blessed hours shortly afterwards though.

Red bull worked as an abortive after waking today with a moderate headache, bought me enough time to sort out my financial issues. Tried it again in the afternoon about halfway into a raging headache, it did nothing.

Went to hospital to try get some nasal migraine stuff, imagran or w/e it is. Came home with diazepam tablets instead :o. Not something I expected or wanted, but I'll  take what I can get until I've been referred to a specialist. I'm guessing it's good night for me for now.

Thanks guys you've been great help, offered me some very simple and so far moderately successful solutions to the pain. Fully intend to pursue the oxygen avenue once I talk to my GP. Hope I can return the favour sometime. :)

Glad you found us, now we need to get you on the right track! Do follow up with the oxygen route. 31 years of battling these danged things it's still my first line and most effective abortive. It's cheap and doesn't have the side effects of so many other meds. But it's critical to use it correctly or you may as well huff helium out of a ballloon and talk funny! ;D

And those OTC meds, be careful with those. They're doing some damage to the old organs and really don't touch the CH pain. Love your attitude, now let's just get you the right tools to fight this thing! ;)

Same as you George alcohol will send me crazy with in the hour. A few years ago i thought my cluster was finished, i was working away from home at the time so went out for a few pints with the lads, then spent 5 hours with a kip 9/10. phoned myself an ambulance and by the time i got to hospital i was fine. Felt a bit stupid telling the nurse i had a headache so sneaked out the back and got a taxi back to hotel.

welcome to the forums maxizoomdweebie

[quote author=353E34363A2332213434363F2C3E3E39323E5B0 link=1239720005/7#7 date=1239792377]I am actually a warhammerer, I can be found on phoenix throne server under the handle Kaiowas when I'm well enough to play. Reason I called the thread Waaagh is 'cos I can get a bit orklike when I get the C.H.
[\quote]

Awesome. XD My boyrfiend plays orks, along with a couple of my friends. I haven't played it but I'd probably go for a army of hello kitty space marines...  :D