Can you describe what the pain feels like?
Firstly, it is one-sided. > 95% of the time for me it is left hand side. Imagine a clamp around your head tightening, but at the same time there is a sharp hot object behind your left eye trying to drill an exit hole through your eye. The clamp continues to tighten – and every time that you bargain with the universe that “OK, thats my limit, stop now pleas” it tightens a little more. You vomit, loss of balance, and sometimes get quite scared for no real reason. You know what is going on (most of the time) but you have a deep feeling of fear. I also taste stone at the top of my head (how weird).
I’ve been run over at an estimated 40 MPH, I’ve broken legs, arms, dislocated knees and nothing comes close to this. It does take you to a new level of pain – and the human body can take more than you can imagine.
Cluster headache are probably the worst pain that humans experience.
How does it compare to getting kicked in the balls?
About the way getting flicked on the arm feels compared to getting a steak knife driven into it.
Do you ever contemplate suicide?
To be brutally honest – yes, at the worst moments, it is an option. Anything to kill the pain. Now that I am on O2 therapy and we are stabilizing the daily attacks, that has helped. Sometimes, when you are in a three day attack with no relief, it does seem like the only route, but most of the time it actually makes you appreciate the good moments more.
Did you say 3 day attacks? Like non-stop? How do you eat / sleep / work?
You learn to adapt – and so do your family. The main clusters are timed: 01:15 and 05:00 are my worst ones – using oxygen and at least one dose of Imigran Injection. The challenge is that you can only use two Imigram per day – so whilst it does abort the attack, it has limited use in any 24 hour period. The pure O2 therapy works very well, and my wife and kids notice the warning signs now before me, so I can now bang on the O2 for half an hour as it come on. Its not the most fun I can imagine, but you learn to cope. I work my own business, so I can program from home when my body allows me to work, and they guys at work are amazing as well.
Having a family and workmates that are understanding is the best thing in the world though. They know that when the beast kicks in, it takes priority over everything – Everything – I mean Christmas, New Years, Birthday, misses then all because of this damn thing, it just takes over when it wants to. But hey, its not terminal, I’m alive, and people have it worse.
How long do the attacks usually last for you?
It can be as short as 1.5 hours if it wants to responds to the oxygen and Zomig – AND if I spot it in time, rising to three hours if it feels like being stubborn or if I didn’t treat it in-time (with headaches for the rest of the day but at least the major attack is over)
Worst case, this can be up to three days if untreated or just because its my turn to get a long one and my body decides fuck you, thats why.
Is oxygen the best way to alleviate the pain?
Yeah, the oxygen is the best thing that Ive tried aside from the Imigran (but that has limited uses in a day -O2 is unlimited and 100% natural). I will normally sit on the oxygen for half an hour and it may abourt, or at least hold it off long enough for something else to take effect (Zomig or zydol depending on severity.)
Are you able to do anything when you have a headache?
No, fraid not. Its complete zombie state. Lying in bed, crying, waiting for the pain to pass, cant cook, hard time walking, dont really feel like eating or drinking. This can lead to problems in the longer ones because you have to keep hydrated, but IF you just dont drink any fluids when you are in one – then this just extends your cluster period!
What’s the most unconventional or weirdest thing you tried to stop the pain?
Weirdest thing was trying to knock myself out – ran head first at walls, blood let, hit my kneecap with a brick to distract the pain – none of it worked!
When did you first start getting the attacks?
About 15 years ago – started off as migraines then (one every three months), but changed forms about 6 years ago and became increasingly regular. The Dr admitted that this was not migraine behaviour, did the usual CAT scans etc, and eventually sent to a Neurologist. Good boy NHS, the Neurologist instantly know what was. The O2 therapy and Imigran cant be cheap, but welcome to the UK -the NHS do not let that cross their mind – once they have you diagnosed, they do everything they can to help.
I don’t remember the first specifically, but I was around 14-15 when they first started, and my reaction was generally to throw up and go sit in the closet in the dark with a blanket over my head because that’s the only thing that felt better.
I also shared a room with my younger brother at the time, who was quite loud and annoying, so I tended to be very violent and throw things at him when I had a headache and he wouldn’t turn down his TV or stop being annoying.
Do you know what causes them?
I have some basic triggers (dehydration, tiredness etc) but not the usual migraine triggers like food, coffee, paint, perfume etc.
What’s the difference between cluster headaches and migraines?
Cluster headaches are generally several orders of magnitude more painful, focused, and come one after another in “clusters” hence the name. They are not triggered by anything we know of, unlike migraines that can be brought on by light, sounds, etc. They can also disappear for months, even years at a time, only to come back nonstop for even weeks without rest.
Have you ever been confronted by someone saying “some event” hurts more. If so how did it go down?
Yeah, I’ve had that. “Just take a few ibuprofen and walk it off, or drink some water" thanks random co-worker, if only I had thought of that sooner.
I know some people are really trying to help, but some people are so bitchy and passremarkable. That soon stops the day you simply collapse in a heap, featal like on the deck, unable to move, ambulance called as you can’t even speak properly (one co-worker later said I sounded possessed!). That tends to let them know what scale of pain we are really talking about. The comments soon stop after that
What medicine do you take for it? Have you tried medical mj?
I don’t take any prescription medication for them currently. I used to have 800mg Ibuprofen, but they stopped working. I had the opportunity to try Vicodin for them, and it did not do anything but make me pee a lot.
Marijuana doesn’t do anything for them either. It does help to distract my thoughts sometimes, but I wouldn’t really consider that a treatment.
Have you ever tried morphine-based drugs to alleviate the pain?
A few of the medications are morphine based – and whilst they lift the smaller attacks, the problem with them is two fold: 1.) Time taken for the body to absorb. They just take too long to get into the system. By the time the pain killing element kicks in, the pain level is beyond medicating. The injection or the O2 is a lot more direct and quicker. 2.) Rebound headaches. Yeah, the human body is a scumbag. It can give you rebound headaches so that it can get more codine or zydol!!
The injections are amazing – BUT worth pointing out that they are not traditional pain killers. if you were in any sort of pain, I could give you this and it would have no effect at all. They work by changing the expansion/contraction of the blood vessels in the brain and perhaps also assist with Serotonin binding – but to be honest, the medical trade know they work but are not 100% sure why!
I hear small doses of Psilocybin have been known to virtually cure cluster headaches. It is also a legal form of treatment.
Ive heard they work, but not tried them yet. I rule out nothing. I would inject heroin directly into my eyeball during an attack if you said that it would help!
Are there any long term side effects? Are these headaches slowly damaging you beyond repair, or is it literally just a shit load of pain and nothing more?
As far as I know, there is no long term damage to the brain – which is so reassuring. At first, you can not believe that you can have this level of pain without some sort of scaring on the brain, but its more down to blood vessels in the brain contracting (or expanding, can never remember which) and causing the most unbelievable pain. I am so grateful that there is no long term damage though….
Is there any illness/disease you would NOT prefer to have?
Yeah, despite the pain and general cr-pness of this condition, lets face it – people have worse. its not terminal for a start. But if we are thinking non-terminal, my sister in law has MS and that scares me. Also Alzheimer’s sounds really scary, as does Parkinsons. I think they scare me worse than what i have.
Theodore Lee is the editor of Caveman Circus. He strives for self-improvement in all areas of his life, except his candy consumption, where he remains a champion gummy worm enthusiast. When not writing about mindfulness or living in integrity, you can find him hiding giant bags of sour patch kids under the bed.