Hey everybody...I have had chronic clusters for 10 years now and have had plenty of dark moments.  Admittedly, I have had some success over the past 4 years in coping and have been able to live a fairly normal life.  Most people I am close with (friends and family) know my story and to be honest, they are pretty damn understanding, so I feel lucky.  I have been with the same girl for 5 years and we just recently married a few months back.  She is pretty much a saint and has seen me in my darkest hours many times.  I respect her a lot because I feel I lost a previous relationship due to these headaches.

I became a red bull chugger about 4 years ago and I must admit, it doesn't beat the worst of my headaches but it certainly has been a huge control for me if I catch them early.  I have a pretty common regimen I stick with on the red bull and I take in absolutely no other caffeine during the course of the day.  (Ironically, I was completely caffeine free for two years by doctor recommendation prior to  the red bull...Suffice to say I was getting my a$$ kicked at least once a day during those times.)  With my chronic headaches I generally have had some kind of shadowing or headache everyday for the past 10 years.  Granted, the first 6 years I was getting KIP10's anywhere from 3-5 times a week and now with a little knowledge I can generally fight off and only get the really bad boys a 2-3 times a month (when I am rebounding back to back,etc.)

ANYWAY, sorry to be long winded, but I have a list of questions I would like to ask...Some are serious, some are light hearted and some are just out of curiousity..Hope you respond..

1) I feel blessed to have found something that has helped me so much (red bull), but I know long term it's neither a healthy nor realistic alternative.  Im wanting to give the 02 a shot and try to ween myself off the red bull.  Has anyone else done this?

2) I am a foreman for a construction company and work outside daily, I was promoted to a job that spent much more time behind a desk and talking on the phone.  Within 3 weeks I asked for my position back outdoors again because within 2 hours of sitting down behind the desk I was fighting off headaches in rapid fire mode.  It's odd, dry heat and sitting in heat make me instantly feel a trigger...Yet working in the heat, I can often go full days without ever even shadowing..On the other hand I go into a cool office (which generally I live in front of the ac during my headaches) and boom I am getting mauled with triggers...Anyone else with these experiences?

3)  If I am at home I keep a barbell and dumbbells around and have them loaded with a heavy enough wait that I will be challenged greatly.  At the first sign of headache I will pound out 4-6 sets of 10 with something very challenging and often times I actually beat this monster.  Do you have something that you do other than medicate, that you feel is very effective? I would love some other alternatives.

4) How many of you guys have actually quit drinking because of CH?  Before the headaches I was a social drinker and occasionally got drunk.  I can say, I have pretty much given up on drinking altogether now...Theoretically, that's a great thing, but I hate the fact that I can't have a glass of wine with my wife or a beer with my buddies or a drink at a dinner party. 

5) Do non common weather patterns completely dominate you?  Example:  Middle of summer average temp is around 93 degrees and sunny all the time where I am...Yet once in a while we will have a weird week right during the middle of the summer where it will rain heavily and the temp will drop into the low 80's all week.  It's during these times where I get completely crushed with high level clusters and mad rebounds,  Is this common for you guys?

Few light hearted questions...

6) Who do you dislike more "the beast" or the guy who insists on trying to talk to you and carry on a conversation while you are obviously in pain but trying to suck it up and make it through the work day?

7) Have you ever had to explain to your friends, etc how you got a black eye , after accidentally hitting yourself a little to hard during an attack?

8) Lastly, do you find yourself frustrated when you are talking to someone who has migraines and they say "I know exactly what it's like, the only thing that works for me is going home and laying in bed in complete darkness and sleeping it off?"  It's not worth explaining to them that it doesn't work for clusters and if you attempted to laydown and sleep it would multiply it.

9)  Do you ever wish that you could project 1 hour's worth of your kip 10 headache on your dumbass doctor who keeps misdiagnosing you and basically doesn't have a clue as to what you are going through or what they are talking about?

That's all, thanks guys!

Your journey thus far sounds all too familiar! I used to go for a hard run when I felt an attack coming on, it would reduce the intensity several clicks. The Red Bull didn't work for me the couple of times I tried it.

DO TRY THE OXYGEN! I've all but eliminated my trex useage with oxygen. I can abort an attack in 6-8 minutes using oxygen, been a miracle abortive for me. Read the "oxygen info" link on the left as it must be used correctly.

I got transferred inside and didn't notice any effect on my headache patterns. But HUGE differences in triggers are not at all unusual in CH. On cycle, I simply don't drink. It's begging for a hit for me. (By on cycle, I'm an episodic, HA's come in 2-3 month cycles. On cycle I can't touch alcohol, off cycle I drink socially no problems)

The weather change trigger is VERY common on the board. And the friends and workers that don't understand, I tell them they're blessed to be so clueless as even explaining a KIP 10 hurts me!

Welcome to the board, you're among people who know what you're going through, let's get your treatment going in a positive direction!

Joe

Oh I get down!!!! Mid cycle I used to get so frustrated I wanted to curl up fetal and cry in my room! Fortunately there's always someone here to kick me in the ass and get me up and running again.  I need that sometimes. And thanks for the wishes, rigth back at ya!

Joe

Hi I am really glad to meet you and really sad you need to be here. Well I am up tonight getting my butt kicked as well. I have Cluster headaches, Migraines, Trigeminal Neuralgia and Chronic Persistent Daily Headache and I am my doctors worst nightmare so she tells me. Giggle. However tonight all 4 of the smarmy brats have flared up and I cant pace because of the migraine and I cant stay still because of the cluster and the tn is on both sides of my face so I cant even sit and hold my head and cuss. So I took my medication and am sitting here riding the stupid thing out.

I am fairly new to CH and do not know all my triggers yet but I have noticed that smoke, alcohol and lack of sleep are all triggers for me. I am not looking forward to finding out about the temperature changes. I live in Denmark and the temps are rarely that high here but in the winter with the wind blowing in off the sea and the cold is so wet it chills you to the bone I pretty much want to become a bird and fly south for the winter.

When I have a CH I usually crochet to take my mind off my pain. If I do extreme physical excercise I will throw up and or pass out from the pain. I used to lift weights about 5 years ago and boy do I miss that! I think I will try and get some weight cheap and go for it again. I also play a game called marble cannon on my phone to occupy my hands during an attack. If I run around the house and bang into things it scares my DH and my cat so I try not to pace or anything during an attack. I just get mean, kiss the cat, ignore the man and hide in my bedroom.

I am sure I was not much help but if it helps to know you are not alone then here I am!

Hi from across the Atlantic, Sophia

Hi Matty, My docs have decided that I need a week in the hospital for yet more tests and observation. I am just waiting on the letter saying when I go.

I have tried the best headache and pain center in Denmark (so I am told but dont believe it) and they could not help me after less than 2 years so they said I was incurable and sent me back to my regular doctor. She was outraged and called them back! Right now she is doing pain management with me until I get to the hospital for the cursed tests. One of which will be to drill a hole in my skull, insert a meter and test my fluid pressure for 24 to 48 hours. I am NOT happy about that one but my doc is the lady with the good pain relief so I just do what she says (unless she recommends a shunt to drain off excess fluid and then the answer will be no because I dont want anyone cutting on my back!)
DH has been complaining about all my pain lately because it keeps me at home and in bed whining most of the time when I am not trying not to yell and scream in a cluster.
Yup tiring stuff but I manage. Thanks to my really understanding doctor and looking forward to treatment for depression next month.
Waving at you from the other side of the Baltic, Sophia