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speedbagger
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So sick of it
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New to the site
« on: Jan 4th, 2008, 7:49pm » |
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Hello,
I too am a sufferer of the torture of Cluster Headaches. I've been experiencing this debilitating disease for about 6 years but was only diagnosed by a neurologist about 2 years ago. The only thing that keeps me going is that i know the pain will stop eventually.
Over the past few years i've been prescribed cafergot (didn't work), verapamil (didn't work), imagrin nasal (didn't work). Now i live with a bottle of O2 beside the bed which seems to settle them down pretty quickly (thank god something does) but unfortunately carrying a bottle of oxygen everywhere i go is unpractical and in some cases impossible.
I'm a 32 year old male, married, one offspring (thankfully these things don't seem to be hereditary because i'd hate to be responsible for inflicting this sort of thing on anyone, especially my daughter).
I get the pain on the right hand side of my head. They last from anywhere between 10 minutes and 2-3 hours. The pain is (as any of you know) unbearable. I usually try to get to the shower and get it as hot as i can handle it. This doesn't seem to get rid of them very quickly but causes soem sort of distraction if that makes sense. Obviously being distracted from this sort of pain isn't really possible.
I find myself either rocking or writhing. Sometimes ism screaming for help so badly i start to wonder how long it will be before the neighbors call the police or an ambulance but it hasn't happened yet. I can't bang my head as some people state they do (it just makes things worse), but i almost crush my skull and push my right eye through the back of my head. Suicide comes to mind pretty regularly when I'm in the middle of a bout but i think I'm strong enough never to follow through on these terrible thoughts. As i said before, i know the pain will stop.
Whoever said that 'what doesn't kill you makes you stronger' obviously never had a cluster headache. They make me feel weak, they make me depressed, they make me scared of going out, they make me scared of going to sleep. I'm a strong fella but these things are Arnold frigging Schwarzenegger on the strength scale.
I'm currently going through a pretty bad cycle. I'm episodic but they don't stick to any real time frame as far as seasonal changes go. They come mid-year, beginning of the year, end of the year, whenever they want to and nothing stops them. This particular bout I'm experiencing at present is probably the worst I've ever had. I'm getting about 3 or 4 per day, ranging between 6 & 10 on the kip scale. The worst ones happening around 1pm and 2am. The shadow won't leave me alone though and stays all day long keeping me terrified of when the next will strike.
I've been watching some people on U tube who suffer and it's brought me to tears. Can't they do anything for us???
I've read so much about these bloody things and it all says the same, no known cause, no known cure. More like not enough of us to worry about trying to figure it out. I don't have much money but believe me every spare cent i have i would donate to any organization that is hell bent on discovering a cure.
Well, glad to have found you all and look forward to continuing reading your posts. Nice to know that we're not alone with this crap. My wife and colleagues pretend to understand but hell, unless you've had a cluster the most you're going to think is 'mate, it's just a headache, get over it' - so after i've punched their lights out (he he he).
One more thing - If it was you i did something so bad to that you cursed me with this "I'm soooooo very sorry, please take the hex off me now. I've suffered enough. I'll never do whatever it was again. Please please stop"
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Hey you! I'm really sorry now lift the damn curse please
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Paul98
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Hi Speed-
Welcome aboard and sorry you had to come looking for a place like this but as long as you are here, welcome!
There are a lot of good folks here that know and understand what you go through. I suggest you read all you can around here about abortives and preventatives. If needed print it out and take to the Dr. Also, have your wife read it too. Just because she dosn't have CH dosn't mean she isn't capable of understanding. There are a lot of suporters here as well as the regular CHers.
What you need to do is work out a plan on what you can try and is one regiment of treatment dosn't work you find another. Prednisone burst/taper also works well for many. Imitrex injections work great for many too. (nasil never worked for me.) You need the care of a competent Dr. for many of these drugs as they can be deadly if you have conflicting medical problems.
Don't be afraid to jump in and ask questions! That is what this site is for...To learn how to tread CH AND learn how to live with it.
Glad you fond the site!
-P.
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: New to the site
« Reply #2 on: Jan 4th, 2008, 9:15pm » |
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on Jan 4th, 2008, 7:49pm, speedbagger wrote:The only thing that keeps me going is that i know the pain will stop eventually.
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Thats mainly what keeps us all going, bro!
Welcome home!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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GrandPotentate
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mmmmmmmmmm
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Re: New to the site
« Reply #3 on: Jan 4th, 2008, 9:17pm » |
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Welcome to the site, sorry that you had to come looking. This was much worse for many of us when we had no clue what was going on. The folks on this site have gotten me through some rough times!
If you haven't yet, start reading up here and on the Ouch site. Oxygen has been the only thing I've found so far that touches this thing. Second best for me has been some brisk walking. The moderate activity seems to be a little distraction, and a little heavy breathing probably gets more O2 in and more other things out. I haven't had the opportunity to try some of the other effective stuff yet. There will be others following me with more suggestions.
Don't let this get to you. Although there is an unbelievable (even while I am feeling it, I can't believe it!) sensation of pain, there is really nothing getting damaged. It passes as quickly as it hits. Sometimes I'm exhausted, sometimes somewhat invigorated after a hit. I don't go out much while in cycle (cars and planes or any confinement is an unpleasant experience during a hit), but I do what I can to enjoy the PF times between hits. And between cycles, I get pretty aggressive at making up for lost time!
I hope your hits are tolerable and your cycle short!
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Jon
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Guiseppi
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Re: New to the site
« Reply #4 on: Jan 5th, 2008, 12:12pm » |
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Hi and welcome. Verapamil didn't work for me either, I ended up on lithium as my prevent. I'm 48, weigh about 190 pounds, male, take 1200 mg a day of lithium, 300 mg 4X a day, while on cycle. I'm in law enforcement so I am very limited as to treatment options. The lithium has proven almost miraculous as a prevent. Blocks close to 90% of my attacks, oxygen and the occassional imitrex jab downs the rest. Almost no noticeable side effects, a little lethargy at first and you pee a lot!
If you go the lithium route don't tell your friends or they start talking real softly around you!  As far as the cafergot, don't throw it out!!! I take an oral cafergot when I start the oxygen, the 02 beats it down, the cafergot buys me up to 12 hours pain free time.
You have much reading to do on the board, there are too many treatment options available now to needlessly suffer. Welcome home.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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mummymac
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New Board Old Timer
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Re: New to the site
« Reply #5 on: Jan 5th, 2008, 2:12pm » |
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Quote:| This particular bout I'm experiencing at present is probably the worst I've ever had |
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Welcome
This too is my worst cycle, no set times a day, no set lenght, and no set season.
I feel your pain, but read everything on this site, it helps a lot and the people are really great
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Tanya
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imfareware
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New Board Veteran
Hello Everyone!!
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Re: New to the site
« Reply #6 on: Jan 5th, 2008, 2:27pm » |
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Hello, I joined a day before you so you are the real nooby!! I just started my cycle of headaches also. I wish I would have thought about googling Cluster Headaches alot earlier.
Hang in there, the sun will always shine!! 
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Pain is temporary, Love is Permanent
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Bob_Johnson
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Re: New to the site
« Reply #7 on: Jan 5th, 2008, 2:31pm » |
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Here are links to two lists of the most currently used meds. Suggest you print them out and use as a way of discussing options with your doc.
The books are quite good for an organized presentation of how to handle.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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Ten
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I love YaBB 1G - SP1!
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Re: New to the site
« Reply #8 on: Jan 5th, 2008, 3:07pm » |
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Nice to have ya mucka. I only landed here myself a few days ago so you'll get much better advice and info from some of the wiser cluster heads around here. But I can be here whenever you need a chat or just need cheering up. I know how much it helps just to talk to someone who knows its not just a headache. Not sure if you know this but to put things into context when someone has a migraine the blood vessels in there head swell up x2 in a cluster attack up to x20. Amazing huh? I was told that the other day. Keep your chin up pal. You've come to the right place. 
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"Once more into the breach dear friends"
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Barry_T_Coles
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Re: New to the site
« Reply #9 on: Jan 5th, 2008, 7:13pm » |
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Hi Speed
Welcome home, sorry to hear your having a hard time right now.
I see your using oxygen & that’s great, I swear by it.
Do you have a non-rebreather mask; they are a heap more effective than the normal one, what rate do you run your reg at, you need a flow of around 12 L/min to be most effective and you up it or down it as required, depends on how hard you suck it in.
If you have a look at the bottom of my post there’s a link to Mr. Happy’s site for a piece I wrote about getting o2 in OZ with some pics, you’ll note the pic of the non-rebreather mask still has the strap attached but that’s only to show what they look like when you first get one, remove the strap to prevent a mishap if you happen to fall asleep with the gas still going after aborting the hit.
Carrying o2 around with you can be a problem some times but you get used to it eventually, I have a C bottle I take every where with me & an E bottle set up at home, I also have a couple of cans of Red Bull in my car fridge to whack the low level hits if needed.
Hope you get some relief soon.
Regards
Barry
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RichardN
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Re: New to the site
« Reply #10 on: Jan 6th, 2008, 12:34am » |
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Hi Speed
Welcome to the fold. WE do understand! Here, your pain, your fear (of sleep or the next one), the "dance" are the norm. We share a common enemy and also share the info/ammo to battle our common beast.
It won't take you long to realize why we refer to this site and the people on it as "home" and "family".
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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speedbagger
New Board Newbie
So sick of it
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Re: New to the site
« Reply #11 on: Jan 6th, 2008, 1:02am » |
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Hey guys,
Thanks heaps for all of your replies, it makes me feel much less alone.
Quick question. How do you get rid of the shadow? I find the O2 works really really well getting rid of the HA's that wake me up at night but not that effective with the daytime ones. One of my major problems though is the constant low grade pain (i think that's what the term 'shadow' refers to?) just above my eye. I wake up in the morning and it's there and it stays all day long until i get hit with a full blown attack. It then gives me about an hour afterwards of pretty much PF time (if i'm lucky) then the shadow returns and taunts me till i go to bed, then BAM, woken up not long after with another. Does anyone have any advice on getting rid of the shadow? If that wasn't there maybe i wouldn't be thinking about it so often and maybe i wouldn't have to raise the topic of cluster headaches every time i sit and talk to someone. I know my friends and family try to understand but I know they must be sick of hearing about them; they've almost become an obsession with me and seem to be ruling my life.
In response to some of the questions i've been asked i'm on 12-14 Lpm of O2, that's as high as my regulator allows. Red Bull used to work but doesn't seem to do anything anymore, plus i'm sure too much isn't good for me, especially seeing as though i have high bp. The quack had to take me off Verapamil because it wasn't working for my bp or the headaches and the new meds for my bp conflict with the verapamil.
I'd love to try Imitrex injections but the nasal stuff is expensive enough, i haven't asked my doc about the cost of IV imitrex but i can imagine the price is through the roof and i just can't afford it.
I'm sorry for all the guys in the US that have a hard time getting the O2. I simply asked my Dr to write a letter to BOC gas and they gave me a bottle there and then. I do use a non-rebreather mask.
Any tips on getting rid of the shadows is greatly appreciated.
Thanks again to all,
Speedbagger
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Hey you! I'm really sorry now lift the damn curse please
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AussieBrian
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Got beer?
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Re: New to the site
« Reply #12 on: Jan 6th, 2008, 9:24pm » |
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G'day Speed. Shame you need to be here but it's still the best place. Regarding shadows, afterburn, call it what you will, I've had a lot of success with just panadiene washed down with a serious cup of coffee. For the bigger ones, panadiene forte instead (need a script). Won't touch a full blown headache, of course, but certainly gives relief for the little ones.
Good luck, stay in touch and beer parcels happily received.
Brian up north.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: New to the site
« Reply #13 on: Jan 6th, 2008, 10:02pm » |
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Quote:Any tips on getting rid of the shadows is greatly appreciated.
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Coffee sometimes works on these, but if you can get them in OZ...try some of those energy drinks like Red Bull, Rock Star. They not only have caffeine in them but Taurine also. Together they have helped a lot of people here.
The guy you saw on you-tube was either Tony or Chuck. They are part of the family here and thye did that video to bring more awareness to the Doctors who treat us as well as the general public.
Sending beer to Brain is NOT a pre=-requisite here.. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Annette
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Veni Vidi Velcro
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Re: New to the site
« Reply #14 on: Jan 7th, 2008, 9:06pm » |
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Hello and welcome !
I am a supporter for my husband who has CH, his username here is Minime. We live in Sydney.
If there is anything we can help you with, even just to talk about CH or to share experiences, do not hesitate to drop us a PM or email.
Painfree wishes to you.
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
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