MoxieGirl

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

Oh, crying. I've had crying trigger cluster attacks. And once, sex. That sucked.

Hi JH, Alcohol is a popular trigger for a lot of people. Thankfully, it doesn't trigger mine, but I'm rare in that regard. This is the first I've heard of a food trigger, but as chocolate triggers migraines for some people, seems logical it could trigger clusters. A drop in stress is another big trigger for a lot of people, as well as atmospheric conditions, barometric pressure and of course, sleep. MG

Hi, If Melatonin is making him groggy in the morning, but you/he thinks it'll help, have him take it earlier in the evening. I know they say 'before bed', but 6pm, 7pm 8pm are all before bed. It means the grogginess may wear off before he wakes up. I had this same issue with a medicine once, and the doctor recommended I take it earlier till I found that time in the evening when the morning grogginess went away. Only a small percentage of my attacks happened while I slept, like your son, most of mine were during the day and evening. I found that when my stress dropped, that's when I was most likely to get hit. I wouldn't get hit very often at work, I think because I was so worried about getting hit at work it raised my stress levels enough to keep the beast away. But when I'd get home and relax, or even on the drive home, BAM! the beast would come. Weekends were often the worst. So, if your son is noticing this pattern too, see if he can try some stress management techniques to keep his stress more balanced. I found that if I always had personal projects to work on, things to keep me focused with deadlines outside of work, it kept my pressure up outside of work and balanced my stress. I couldn't reduce my stress at work, but I could bring my stress outside of work up a little. Then, I'd have times in the evenings or weekends when I'd shut down and destress, times when it was Ok to get hit because I could manage it. Not a perfect solution, and doesn't always work. But I found it helped. MG

BoF - good call, REM every 90 minutes. Not sure why I had 45 minutes in my head. I often have 2 dreams at once in parallel, especially if my clusters are migraines are bad. I know, it's weird, but it happens. A quick Google search reveals that it's not that uncommon. The way it seems to work for me is that both the left and right hemispheres of my brain work independently, and not only when I'm sleeping. But when I'm sleeping, both sides of my brain can have their own dream. Sometimes, if I'm really lucky, I can be lucid in them both, and flit back and forth controlling the dreams. Doesn't happen as often as I'd like, but is fun when it happens. Remembering your dreams is like anything else, we just have to practice and make an effort at it. MG