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MoxieGirl

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Everything posted by MoxieGirl

  1. Hi my friends, I normally get a bad case of brain fog after a cluster attack. They are fairly short lived, 1-2 hours, maybe 3 or so. What often surprises me is when I’ve had a 10 - 15 minute, short fairly mild attack, but then have brain fog for hours afterwards. Anyway, yesterday morning I woke at 5am with a super mild headache. I should have taken pain killers then and there, but hoped I’d sleep it off. I woke at 7 with a really bad headache that morphed into a migraine. I too a triptan, and before too long the migraine was gone. But then, I had horrendously bad brain fog the rest of the day, right up to crawling into bed. It was so bad I left work at noon, I just couldn’t concentrate on anything. I’ve never had it that bad from a migraine, or had it last that long. I asked Dr Google and found out the proper name for it is Postdrome, and if you get it before a migraine, it’s Prodrome. It can last hours to days and is quite common. So, I was wondering if this is a common post (or even pre) side-effect fo clusters, and if others experience it too. Stay safe, Mox
  2. You know, I’m really, REALLY fed up with this whole “war on drugs” rubbish! A couple years ago, the UK legalised cannabis for medical use. This meant any doctor who wanted to prescribe it had get up to speed with its use, and only expensive, private consultants did that. You can’t get it on the NHS like you can any other medicine. Someone recently came up with an ID Card (called a CanCard) that says you have a medical condition that you’re treating with cannabis, and the police have agreed to not arrest you or take your medicine if you have the CanCard and are caught with cannabis on you. A step forward, but the government should have done that long ago, and not left it up to someone suffering with MS and was in desperate need of cannabis. But it’s crazy that they make it so difficult to get effective meds but happily hand out very addictive and harmful meds like they were M&Ms. Rant mode off. Mox
  3. Had a <bleep> <bleep> <bleepity> <bleep> <bleep> headache. OH!!!!! That’s why they don’t ask us to name these headaches. Mox
  4. If I remember correctly, Michael Pollan's book, How to Change Your Mind, gives a really good description of Hoffman's bicycle ride home that fateful day, and the history behind the discovery. A really good read, can't recommend it enough. Mox
  5. Hi Mike, Has been a couple of months since your original post, I hope things have settled down a bit for you in that time. But, knowing the beast, it may not have. The best way I've found to convey the level of pain to a non-clusterhead is this: Most people I talk to have had at least 1 muscle cramp in their life, and it's usually a calf muscle. I start by asking them to think back to the worst muscle cramp they can remember, and get them to think about how suddenly the pain came on from out of nowhere, and how it was all consuming. They couldn't move, or speak or think about anything apart from the pain. For the thirty seconds or minute that it lasts, it becomes their entire world. I then ask them to imagine the pain being doubled. And then doubled again, so it is 4 times as painful as it was. Then, shrink the pain down to the size of a golf ball and shove it in your eye. Right in the inner corner where you get a brain-freeze attack from eating ice cream too fast (another good analogy). Now, instead of lasting 30 seconds, imagine that pain lasting 3 hours. At this point, you can usually see the realisation on their face. And you cap it off by saying that's a tenth of what a cluster attack feels like. I also never call them cluster headaches, I always call them cluster attacks. Because that's how it feels, like I'm being attacked. I have headaches, I have migraines, this ain't them. I've also often said that if a headache were the Moon, and a migraine the Earth, then a cluster attack would be the Sun. When I was house-sharing with my best friend, she would get frustrated too that she couldn't help. We came up with a system that worked well for us. During the actual attack, she'd just leave me alone. I'd normally go to my room and just be on my own to deal with the pain. There's nothing anyone can do, and just having someone around made me feel self conscious. But, as soon as the pain subsided, she'd be there with a blanket to wrap around me and a tall glass of cold water. My body temp normally fluctuates wildly after an attack, and having a blanket or bathrobe to wrap myself in was helpful, but sometimes I wasn't in a state of mind to get it myself. Also, I'd be extremely thirsty and dehydrated. As soon as I downed the first glass of water, she'd go and get me a second, and a third if I needed it. Lastly, she'd offer a hug and a shoulder to cry on. She'd sometimes bring a bit of chocolate too, which helps after an attack (I find). That worked really well for us. She found that she didn't feel guilty for leaving me to suffer on my own, there was nothing she could do anyway then. But as soon as the pain was gone, she was there for me when I needed someone most. Hope that helps. Mox
  6. And other States are decriminalising it too, aren't they? Good news for sure. Mox
  7. Hi, My neurologist is recommending Cadesartan for my migraines, and just wondering if any of the good people here have experience with it. Mox
  8. Are there anymore details about the conference yet? Like, who is speaking when, time table, software that is going to be used.. (zoom??) I live in the UK and would love to attend. I've been to the website linked in the other posts, but many of the links to photos are broken (in Safari at least) and there aren't a lot of details (doesn't instil confidence). According to the page, the conference is starting at 5pm CST on Thursday and running non-stop till 10AM on Sunday. Surely not? (Yes, I just) Is the conference going to be recorded so those of us in other time zones around the world can at least see the speakers? Or am I missing a link or something? Thanks, Mox
  9. Wanted to bump this to the top, if you don't mind.
  10. PS. I often think these headaches are equally difficult on those that care about us. My best friend used to get so frustrated watching me in pain and unable to help. We eventually agreed that when the cluster started, she'd just leave me alone and get one with it. But, as it ended, I would always want 2-3 glasses of cold water and a blanket or bathrobe, and she'd always have these ready. Mox
  11. HI Rios, I had clusters for about 4 years before I signed up here. Like your sister, I had tried everything doctors could give me. The last doctor med I was on made them worse (Topiramate, nasty stuff). At the time I came here, I was having 2-5 attacks every 2-3 days for nearly a year. I was actually, and quite literally, picking a date in my calendar to exit planet Earth. I'd decided to give myself 1 more year to find a solution, and that's when I remembered once being told about this site. I spent the following 6 weeks doing two things: 1, weened myself off Topiramate, and 2, read everything I could on this site. I think I read the key files in the Files section 4 or 5 times. I asked questions and made friends. It took some work, and wasn't an overnight fix. After my first bust the post traumatic stress attacks stopped. They just completely went away. The year prior to using these methods I had had 257 cluster attacks. The following year that dropped to 169. That's still a big number, but was much, much better. Last year, I had a whopping 37 attacks, all but three of those lasted less than five minutes. There is hope. There are solutions. You have to be your own doctor, researcher and test patient, but you can make these better. The Vitamin D3 regimen is a good place to start, along with a deep dive into the File section. We are here to help. Mox
  12. This morning I had a cluster attack that lasted 15-20 minutes. And, it was maybe a KIP 4 or 5, nothing horrific. Bad enough that I curled up on the sofa for a bit. But, I felt totally drained for 2 hours afterwards and was in a brain fog for 4 hours. I couldn't concentrate or even look at a computer screen for more than a few minutes. Then, it just went away at the 4 hour mark, and I felt fine. Is there anything people do to help them get through these after affects? I find chocolate and caffeine helps a little. Here's my FaceBook post from this morning, might make 'ya chuckle. Random thought of the day. If you had a choice between going to Hell to be personally tortured by the Devil himself for 1,000 years, or having one really bad cluster headache... What would you say to the Devil after you spit in his face? I'd probably say something like, 'well, get on with it you weak arse loser who thinks you understand pain.' Yes, it's been that sort of a morning. Had a fifteen minute cluster headache at 9 this morning. 3 Hours later and my brain is still scrambled and I have no energy, my body temp is fucked and I'm not always confident which way is up. Mox
  13. Hi gang, I'm curious what sort of things other people experience after the cluster headache has gone away. What fun little things linger after the raw pain is gone? Here's my list: Prior to busting, I would have 20-30 minutes PTSD experience where my whole body would shake and I'd cry uncontrollably after every attack. But that essentially went away after I started busting. My body temp normally swings from very cold to very hot, and I spend an hour or so adding and removing clothes or blankets to regulate my temperature. Extreme energy drain that lasts for hours, even from a short, 15 minute cluster. It tends to wipe me out for ages. Sometimes I get left with a headache or a migraine. Foggy brain and it's difficult to concentrate or focus on anything for hours. Holding a conversation can sometimes be difficult. My body's balance can sometimes be off kilter. For all of these things, it doesn't seem to matter if it's a 10 minute attack or 3 hours. As long as it reaches a KIP 4 or 5, then I get all or some of those. Mox
  14. Hi memememe (nice nick) Here's how I explain the pain to people, might help clarify things with your partner. Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp. Then, have him double the pain level again. Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. Mox
  15. Thanks everyone for your support. The clusters have seemed to ease off. I've only had one or two minor attacks since I started this thread. Very weird. My migraines are easing a bit too (knocks on wood). My daughter is down for a visit this week, so I've taken some time off work. That might be helping things. Hoping to bust soon, once she goes home and I have a week clear of triptans. Which may now be possible. Hoping to get 3-4 busts done in fairly quick succession. Hope everyone is enjoying the summer. Mox
  16. The Beast is back. Have had 5 clusters in a week now, and they have been proper strong ones too, not my normal KIP 2-3. These have been in the 5-6 range, and lasting much longer than normal, e.g. 15 minutes instead of 1-5 minutes, but still! Was woken up in the middle of the night this past week, and that's extremely rare for me, even when in the full depths of Hell. So, just tracking things for now. Trying to get clear enough away from triptans so I can power up a fresh busting routine. Think I have enough meds on hand for 6-7 busts, at least. Time to dig my farming gloves out. Stay safe everyone. Mox
  17. Hey Rudolph, I'm also in the UK. Welcome to the forum, sorry you have to be here. You can still get RC Seeds in the UK from eBay and sometimes Amazon. But it's getting harder to find. We need more law makers, or any law makers, with cluster headaches if you ask me. The only side affect I've ever had from the VitD Regimen is that it turns my urine to acid when I pee, which isn't at all fun. But my body can be quite sensitive to high doses of vitamin D. I'm just weird that way. I would be surprised that calcium would have that sort of an impact on an adult. How long has the knuckle been swollen for? Mox
  18. Hey Dr J, Welcome to the forum, so sorry you have to be here. Looks like you've already received some good advice. I'd also recommend you do as much research as you can, as mentioned above, most doctors (even specialist neurologists) are pretty clueless when it comes to CH. They just don't know what to do or their data is out of date. Ouchuk.org is a good sight for background information on the different types of primary headaches, and explains them well along with some standard treatment options. Some things work really well for some types of headaches (e.g. triptans for migraines and indomethacin for SUNCT). Triptans don't normally do anything for clusters, in my experience. Although I think some injectable forms of triptans can be beneficial. Caffeine is also helpful to abort an attack. Strong coffee or an energy drink will sometimes shorten attacks. Mox
  19. Yep, nasty stuff Indomethacin. Effective, but not fun. Best advice, eat food before or with it, I found that always stopped the dizziness. And, feeling like you're seriously drunk is a good description. But, food makes a HUGE difference. Seriously huge difference. Can't stress it enough. Mox
  20. MoxieGirl

    BOF

    Hey wonderful. Sounds like you're having a tough time atm. I'm not coming to the forum much at the moment, other projects taking up my time. But you're in my thoughts a lot, and I hope you have a speedy recovery. Stay strong, and it's Ok to cry. xx Mox
  21. A cluster headache is ... Like being hit in the eye by your own brain at random times of the day and night. Of course, your brain is wielding a baseball bat. With nails hammered through the business end, sticking out menacingly at acute angles. Nails, which have been heated in a fireplace for hours until they are glowing red. Sure, the first time the bat makes contact, you only wince in pain for a moment and try to brush it off. After fifteen minutes, it starts to take its toll on your pain threshold. Thirty minutes in, and you want to pluck what is left of your eyeball out and soak it in ice cold water, you know, just for a refreshing break. But of course you can't. There's not enough of your eye left to pluck out. The migraine you had has long fled in terror. An hour in, and your sanity is as shredded as your face feels. Two hours in, and you're a blubbering mess. You have real bruises now from hitting your own face and from that dent in the wall, in an effort to distract yourself from the real pain. Your eye is bloodshot, your nose has been running non stop and your face looks like it is melting. Eventually though, the beating stops. You're hungry and thirsty, the attack has taken a lot out of you, but you also have no energy or desire to move. If someone would only bring you some chocolate, a coffee and a tall glass of cold water. Quietly, a voice from the depths of your mind whispers, 'post-traumatic stress attack starting in 20 seconds... 19... 18.. 17.' You have enough time for a deep breath. Maybe two. Then absolute terror grabs your soul by the throat. It shakes the very core of who you are back and forth like a rag doll, and then throws it into the far corner of the room. Rocking back and forth, body shaking from your bones to your skin, you huddle in the corner in utter terror. Every muscle cries out in fear. Tears seem to escape through the very pores in your skin and flows from your eyes like a river. You don't know when the bat will return to continue its work, but you know it will. It always does. It always will. Note: Today, I only had a brief attack, measured in seconds. It was my third, and shortest cluster attack this week. But, it managed to bring back this flashback from when they were bad. Or, perhaps a flash-forward to when they'll be bad again, for surely they will. That is their nature. Not one word above is an exaggeration, if anything, it undersells the experience. Mox
  22. No two cluster heads are the same, and just as soon as you figure your's out, it changes. Mine have always switched sided. Left side clusters always hurt worse than right side clusters. I wouldn't read too much into them switching around. Might be connected to a change in meds or hormones or the wind blowing a new direction. I know, not a lot help there. Unless your clusters are caused by the cysts, it all sounds pretty normal. (not being a doctor that is). Mox
  23. Aspartame triggers migraines in some people. So worth testing when you're not in pain. Trading a Cluster for a Migraine isn't much of a win. LOL Mox
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