MoxieGirl

Hiya, The way I identify my different headache types, is like this: Headaches - general pain, anywhere on head, annoying and distracting. Migraine - more painful than a headache, super duper sensitive to everything - movement (even moving my eyes hurts), head movement, standing, walking, sound, smells, light - especially light. Sometimes even being touched hurts, and even thinking. Sitting still in a dark and quiet room is often the only way to manage the pain till the triptans kick in. I definitely could not exercise during a migraine, I can barely roll over in bed. Can be anywhere on the head. Cluster - intense pain, one sided, but it doesn't impact movement or sensitivity. I'm fine with light, noise, smells and movement. I often say that if a headache were the Moon, then a migraine would be the Earth and a cluster the Sun, in relation to magnitudes of pain. The super sensitivity issue is the big difference. If it hurts to move my eyes or to have the lights on, a migraine. If not, a headache, and if my hands fly to my eyeball of their own accord and try to push it out the back of my head, a cluster. Can't recommend O2 enough. Although, I've not used it myself. But, everyone else on this forum will highly recommend it. It should be the first thing doctors prescribe, and it can cut a 3 hour attack down to 10 minutes. I never used it because I started Busting, which sorted out my clusters before my GP could get the O2 approved and through the system. Not all triptans work on clusters, and those that have them usually have a self-injector or nasal spray, as the capsules just take too long to kick in. Have you found any posts on the Vitamin D3 Regimen yet? It's worth having a look at (look in the ClusterBuster Files section). Although, it sounds like your body may not bode well with too much Vitamin D. But, worth checking out all the same. Mox

Hi CAClusterHead, Welcome to the group, sorry you have to be here. Life is, as I say, what happens between headaches. I think I've only come across one or two cases where the clusters lasted longer than the predicted 3 - 4 hours. I personally, have had 4+ hour cluster attacks, but don't think they ever exceeded 5 hours. Those were some hellish days. But that doesn't mean they aren't clusters. And as you also have migraines (they also run in my family), I'm sure you have ways of telling the difference between them. Not going to insult you by saying, 'are you sure it's not just a migraine'. As if migraines are trivial events and you can't tell them apart. It's interesting that it maintains a constant pain level throughout the period. I know Shadows can last that long, but I don't know how painful they are. My perception of Shadows are different I think than most people's. Have you tried doing something physical during this time? Running, cycling, etc? Some people say physical activity can sometimes abort a cluster, and if it's a low level cluster like that, lasting that long, might be worth a try. Twice I've had a cluster span both sides of my head, even though the 'rule book' says they are always one-sided. Or, and this is probably more likely, I had 2 clusters at the same time on either side of my head. Again, those weren't fun days. Have you tried using energy drinks or coffee to abort? Oxygen? What else is in your inventory at fight back with? Mox

J, Thanks for the real world descriptions of this pesky little thing called pain. There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. But it is what I think makes Clusters uniquely extreme. Mox

I wrote this today while Busting my migraines. Part 2 may have to wait for the next bust, but I already have ideas for it. I'm finding it interesting what it is saying to people (have shared it with friends) and thought I would post it here. Mox the run, part 1 by moxiegirl it only takes a moment, and in a flash you decide the run is worth it. so you set your sights forward, never back, and start running feet pounding the pavement, you round the bend, your heart racing the path turns, climbs hills and goes over obstacles. but you don’t care you keep your eye on your goal. and run it’s a worthy goal after all. no one else can do it. so you keep running. the hill turns into a mountain, so upward you run the path cuts through forests and over rivers. still, you run. forsaking friends and family you run possessions, jobs, career you run all the harder your life savings, all you worked for is long gone still, you run, ever prouder all that you are, is the run. and still, you run. ever onward, ever upward. you run. the sun is hot now, you’re breaking through the clouds. still, you run. the edge of the cliff is before you, it’s getting closer still, onward you run. there is an arm, an out cropping of rock you see it and run it juts out beyond the cliff so on that…, you run the arm becomes a hand.., a finger… and just as it turns to dust, you jump. you reach out with all your might, stretching every fibre of your being to grasp….. nothing. nothing is there. just air. a wisp of smoke, a false hope and a tear left on the breeze by an eagle as you twist in mid-air to look behind, you notice the crowd families with children standing along the edge fathers wearing shorts and sandals with socks. all standing at the edge of the cliff watching you. some are even taking pictures with their phones beyond them is a car park, filled with cars and busses scooters and bikes are dotted about the edge a man is selling ice cream out of a van, and another selling burgers between the families and the cliff’s edge, a rope barrier keeps everyone safe as gravity begins to tug on the tattered fabric of your clothes and the realisation of your situation implodes in upon you, you find yourself wondering, ‘why am I just now noticing the barrier?’

B, Hugs. Mox

Big hugs Devonrex, I wonder if people in an abusive relationship have similar feelings. Ok, sure, maybe you're partner gets drunk and slaps you around twice a week, but maybe that becomes a security blanket, and leaving the relationship and that pattern is more scary than staying in it. I started to write out the following in my previous post, then decided not to. But think I will. I Dec 2016, my best friend and housemate, the person I cared more about in this world next to my children, received a suspected diagnosis of MND (ALS/Lou Gehrig's Disease). She went through a battery of tests, and the diagnosis was confirmed in Feb 2017. Between Feb 2017 and 19 Nov 2019, when she slipped into a coma and died with me holding her hand (a week after her 47th birthday), it seemed like there was a critical event happening in our lives every 2-3 weeks. Our landlord kicking us out, trips to the hospital, her mum getting diagnosed with terminal lung cancer, debts piling up, I gave up my career and shut down my company, returned my new car and bought a junker.... The list of things we went through in those 2 years is insane. We easily ticked off the 20 top most stressful events in life, and then some. Something would happen, or threaten us, and we'd look at each other and wonder how we would ever get through it. Then, 2 or 3 weeks later, something so much worse would happen that the previous event would seem trivial. After my friend died, things got worse for a time. I had just 3 weeks to return 2 rooms of medical equipment, sort through all her stuff (which her family did most of, thankfully), sort through and pack all my stuff and downsize from a 2-bed house to a 1-bed house. We had already downsized from a large 4-bed to a very small 2-bed, so I'd been selling and binning things for nearly a year by that point. I moved into a house with no flooring and required a serious repainting of the walls. The kitchen didn't have stove, still doesn't, and only partial cupboards. Then, Christmas hit like a freight train coming out of the fog. This sensation you've been experiencing, the feeling of impending doom, I've been living in it from Nov 2018 till just a few weeks ago. I was constantly waiting for debt collectors to knock on my door, or for my GP to phone and say I had cancer or for the police to show up at my door. My body was so geared up for a disaster every 2-3 weeks, I didn't know how to handle life without one. I didn't know what normal was. I was constantly on edge. When we are in an extreme situation for a long period of time, our bodies and minds adjust, and we start calling that normal. Coming down out of that is difficult. It then becomes a double-edged sword. You don't want the pain (returning to clusters), will do anything to get rid of the pain; but then freak when the pain is gone. I hope you are able to find a PF Normal. Or, perhaps, a less-pain normal. xx Mox

In a way, it's like having the flu or food poisoning. You dread having to kneel at the toilet and empty the contents of your stomach, but at least once you've done it, you know it'll be over with and you'll feel better for a few hours. I've been chronic 12 years now. Wow! Shocks me it's been that long sometimes. When they were bad, they were really bad, similar to the OP. I would come online and hear people chat about their cycle starting over again, and I would wonder how could anyone survive having months off, then being slammed again. At least, as a chronic, I knew a cluster was NEVER far away. I didn't have to worry that I might forget I have them and attempt to live life again. I wouldn't slip into that false sense of security to be shocked when the beast returned. PTSD sucks big time. Hang in there. Mox

Interesting. When stress, i.e. pressure, decreases and I'm relaxing, that's when I get hit. Maybe it isn't just metaphorical pressure like stress, but physical pressure as well, like atmospheric pressure that can be a trigger. Mox

I agree, only in the BDSM world is your ability to take higher levels of pain a bragging right. The descriptions I write aren't meant to show how tough I am or how bad my clusters are, or even to scare people into believing they are worse than they are. Yes, everyone experiences pain differently, what one person finds excruciating, the next person will brush off with little thought. Do we need to convince people who don't have clusters how bad they are? Yes, I think we really, really do. Have I gone over the top with that, clearly some people think so. I had a job awhile back where my manager bragged to me how he had only ever had one headache his entire life. Not even a migraine, just one headache. And this was at a time where I was getting signed off work for up to 7 days with a single migraine. He just didn't get it. He didn't understand how it was a problem and why it was affecting my work. So much so, that the company paid for me to see a headache specialist and get a proper diagnosis. Once I had that, he backed off. But he still didn't get it. And that is one example of discrimination I received BEFORE I had clusters. I've often said, that if I could have a super power, it would be the ability to touch someone and give them a 5 minute cluster headache. Now, you might think that is harsh, but it is the only way people will understand it. Short of that super power, I put my pain into words. Here is a description of one of my worst ever clusters. There is no exaggeration in this, this is how it felt, and is taken from my diary written at the time. The part about where I was standing outside my body, looking down on me, is called Depersonalisation, and sometimes happens when someone is in an extreme situation. And lastly, I would say, if you don't like my descriptions, that's fine. Don't use them. But you can't say that isn't how I perceive clusters just because it isn't how you perceive clusters and think it's over the top. My clusters are not your clusters. Mox

I did a pain survey of members of this forum, and our sister forum, a few years ago. I asked people to score a number of things based on their 1-10 cluster headache pain scale. I then pulled in all the results and averaged them, and the results are listed below. But like BoF said, pain is subjective. A couple examples: Kidney Stones ranged from 5 to 9, with 7 being the average. Personally, I'd the kidney stones I once had at a 5 compared to a cluster attack. Broken bone ranged from 1 to 9, with 5 being the average.

Hi John, Yes, I do agree, it is a more extreme example. And yes, you're probably right about how one's body would react to such an amputation. Sort of. There is a museum here in London where they demonstrate how legs were amputated in the early 1800s, and it's really fascinating. And no, they didn't use pain killers, and the amputation itself didn't actually kill a lot of people. You are more likely to die from the post-surgery infection you got because the surgeons didn't was their hands or instruments. But, what I like about this analogy, is the utter terror it implies. You never know when 'the men' are going to turn up, and when they do, it's going to be extremely painful.

Yeah. I used to call anyone that less than 10 migraines a year an amateur.

Probably not this year. I'd love to come to one though. But probably won't make it back to the States for awhile. Sadly Mox

I've come across a few posts recently where people have said that those around them don't believe, or understand, the level of pain created by a cluster attack. That they think it's just a migraine. I thought I'd start a post on how to adequately describe the pain of a cluster attack. Feel free to jump in with your own examples. Also, I've made it a habit to call them 'cluster attacks', not 'cluster headaches'. I personally feel the word headache undermines the severity of what we go through. In my mind (and in my descriptions below) I view them as an attack. No one gets PTSD from a headache, but you can get PTSD from an attack, and that's what these things are. At least, that's how I see them. Here's my favourite one that I've used that seems to get the point across. Here's another one I like, slightly more graphic. And a third description. I could go on, but I'm probably grossing you out now. The first one is a really good one though. Mox

Devonrex, A good descriptor of cluster pain that I've used before, that you just reminded me of... Think back to the last time you had a really bad muscle cramp, which most people will have gotten in their calf muscle. Remember how the pain came on suddenly, how it crippled you and how it drew in 100% of the focus of your mind. All you could think about was the pain in your leg and how to stop it. Now, double that level of pain. Then, double it again. Then, relocate it to your eye and have it run at that level for 3 hours. Mox

Thank you BoF. What I'd love to do, at a Cluster Buster's Conference, is have someone read it out on stage while a performer acted it out. I think it would be a really strong visual. Mox

Bump

Mox's first rule of cluster headaches. No two cluster heads are the same, and just as soon as you figure your's out, it changes. Get your head scanned. If for no other reason than it'll put that question to rest. Stress management is an important factor in all headache types, and if that is a lingering question, then it's a stress that is having an impact. Photosensitivity tends to be related more to migraines than clusters. I'm never light sensitive during a cluster attack, but super light sensitive during a migraine. Mox

Zoejarvis, When my clusters started, a friend on another board told me about Clusterbusters, and what they used to 'bust' clusters with. Like you, I shied away from it. I did bookmark the site, and said to myself I'd use it as a last resort. About 4 years later, after trying EVERYTHING the doctors could give me, and after being on Topiramate for a year, I opened my calendar and was selecting a date to kill myself. I decided I'd give myself 1 year to find a solution, and if things weren't any better, then I'd had enough. I was getting 2-5 attacks a day every couple of days at that point. Just as I picked a date, I remembered about this forum, and signed up. That was 8 years ago. To say busting, and the people here saved my life, is no understatement. By all means, try everything you can. Try everything you feel safe trying. And one day, if you find it doesn't work for you, we'll be here and will help where we can. I was nervous at first too, but I went slowly, followed the advice given, and am doing well. Be safe my friend. Mox

That's good to know. I shall just put that back onto my bucket list then.

Hey Zoejarvis, The busting methods as we talk about here on the forum have worked wonders for me. Can't really go into details on the General Board, as it doesn't require a login to read. I'm still chronic, in that I get 1 or 2 hits a month. But they are so mild, they don't disrupt my life at all. Mox

My clusters got worse while on Topiramate. The year before I started on Topiramate I had 63 clusters, and I thought that was a bad year. The year I was on Topiramate, they shot up to 257. So, yeah, not a big fan. Mox

I've wondered this too. I think Spiny (might be wrong) would get hit when she went down (or up?) a mountain due to the change of pressure. And, apart from scuba diving, have wondered about sky diving as well. Mox

I have NEVER heard of this. How wild. Wonder how many other people have it? Mox

Hello Mr S. Welcome to the forum, sorry you have to be here. You're Sumatriptan, is it in pill form or an injection needle? I've not used it myself, but I understand the self-injection needle works pretty quickly. Also, talk to your doctor about high-flow oxygen. Again, I've not used it, but people swear by it for aborting attacks. It can cut a 3 hour attack down to 10 minutes or so. Also, energy drinks, Monster, Red Bull, even Mt Dew or coffee, can help reduce an attack or help with the after affects. There is also a method referred to as the Vitamin D3 Regimen, which a lot of people find very helpful in keeping the beast away. It's perfectly legal and consists of over-the-counter vitamins and supplements. Worth looking into. "Busting" is the slang term we use for other methods, not so doctor approved, and not so legal. I won't go into details in the General Board, as it's open to the public. (Perhaps one of the kind moderators will move this to another forum sections?). But, if you look through the ClusterBuster Files section, you'll learn a lot about it there. The posts at the top of that page are a great place to start - UNDER CONSTRUCTION!! Welcome Newcomers! has a slight intro and links to key threads (DD is still working on it). Details of the D3 Regimen can be found on that board as well. Mox