MoxieGirl

Fantastic comments and advice guys. Unclebird, When I found this site and made the decision to try busting, I had a few weeks to wait while I weened myself off of the rubbish doctor meds I was on at the time. I spent hours and hours reading this site. Especially the Clusterbuster Files section. Read that 3 or 4 times. I'm one who needs to fully understand something before I dive in and try it. So all this background knowledge and advice was fantastic. I'm still often amazed that I'm now in a position to repay the favour and help others. Busting isn't always (or often) a quick fix. Some people are lucky and get really quick results. Some of us have to work at it a bit longer. Considering I was getting 5 hits a day when I started busting, and now only get a few a week, I'm pretty amazed. Also, my migraines dropped from 40-60 a year to less than 10. MG

Hi Unclebird, I shall proffer our standard greeting. Welcome to the site, sorry you have to be here. I've been chronic 7+ years. I often wonder what it would be like to be episodic, to go months and years without an attack. And then WHAM! to come in cycle again. Having been an active member here a couple of years, I do notice people come and go, then come back again when things turn bad. There are a handful of us that are pretty hard-core posters, all seasons. But many only come when the beast returns. One analogy I use when explaining clusters to non-sufferers: Imagine having a muscle cramp, you know, one of those that come on really suddenly and make your calf feel like it is on fire. All the world stops. The only thing that exists is the pain in your leg, and nothing you do seems to help. It just has to run its course. Now, take that memory of the muscle cramp and double the amount of pain. Now, double it again. And then, instead of it lasting 30 seconds, have it last 30 minutes. An hour. 2 hours. And lastly, relocate that pain from your large calf muscle, and condense it into your eyeball. Now you have a semblance of what a cluster attack is like. Also, never use the word 'headache'. I always call my 'cluster attacks'. MG

Spiny, very interesting information regarding hypoglycaemia, and what to do to manage it. Some nice tips there. There is a form of migraine that strikes without pain. One gets all the other symptoms they get with a normal migraine - sensitive to light, sound, movement, spots before the eyes, etc. - just no pain. It almost feels like I can get a similar thing with clusters. The pain ISN'T a KIP 9 or 10, maybe only a 4 or 5. It can last anywhere from 5 minutes, to 30. But afterwards I feel just as shattered as if I've had a 1 hour KIP 10. Earlier this week, after one such attack, I lay in bed for a half hour, barely able or willing to lift my hand. I wanted to get up. I wanted a drink, but was utterly drained of energy. One of my worst attacks ever, a KIP 14 by my standards, left me shattered for 6 hours or so. Even too tired to sleep. Glad, in a way, I'm not the only one that experiences this. Hugs to all. MG

Bejeeber and Jeff, my deepest and most sincere apologies. Monday's daily headache was like someone had soaked my eyeballs in napalm, then put them back in my head and lit them. They burned for hours. Tuesday was double cluster day. Yesterday was day long drilling of the temples and a kettle drum party in my brain. I should know better than to post when I'm in that headspace. Yes, you're right. When I get hungry my blood sugar does seem to drop, and mental focus goes out the window. I do tend to panic at this stage, but more so because all my life, getting to hungry has always been a migraine trigger. And if you've my sort of migraines, you'd go into panic mode too. So I'm not sure it is all physical, but probably a lot of conditioning. There are times when I get that hungry, and I can calm myself down, take control of the panic, and I'm fine until I get food. So, the jury is out. Will speak to my GP about it the next time I'm in to see her. Like DrTy, I don't believe I have an addictive personality. I know I like things, but do walk away from a substance if I feel I don't have control over it. Big hugs, MG

I couldn't agree more Tanner. I'm currently reading a book called 'This is Your Country on Drugs' by Ryan Grim (also a senior reporter at the Huffington Post). It is a very interesting read, and I find it interesting how society approves of certain 'drugs' and strongly disapproves of others. In Ryan Grim's history of drug use in America, one can spot the trends and influences over the years. But think about it, all of the following substances have a chemical impact on the body, all are essentially 'drugs' and some are more addictive than others. alcohol caffeine chocolate THC psilocybin nicotine LSD Why are some legal and others not? Why does society or the government have a right to say which I can, or can't, use to get a high from?

Ok, for the record. I am not hypoglycaemic nor do I have type 1 or type 2 diabetes. I have recently been tested for this and a number of things (high cholesterol, etc.), and am very healthy in that regards. Neither chocolate nor alcohol is a trigger for me. Yes, I like chocolate. Yes, I like rum. No, I do not always have the healthiest of diets, as my best friend often reminds me. But it is much better than it used to be, and I'm constantly making improvements. For example, today's snickers bar was my first in a month. Which is pretty damn amazing for me. If you follow my posts, then you know I've kept a very detailed and accurate record of my headaches, migraines and clusters for over 4 years now. Although I don't track food any longer, I did track it in detail the first year or so, enough to know I don't have any food triggers. My triggers consist of 'cold', either eating something VERY cold (KFC Chrush'em for example), or someone putting something cold on me (like an ice cube). Lack of sleep is another trigger, which is why I have a pretty strict bed time of 10pm, and certainly can't stay up past midnight more than 2 nights in a row. Strong smells is another one. Basically, with strong smells and cold, I'm OK with them if I know they are coming. But if someone shoves something in front of my nose, or drops an ice cube down my shirt for a joke, I'm in major trouble. Relaxation can occasionally be a trigger, but I think that pretty much sums them up. In fact, caffeine and chocolate are slowly, but steadily, working their way out of my diet. Alcohol and I part ways from time to time for 3 or 4 months a year. But then I'll get a really bad migraine that won't go away, and vodka turns out to be my last resort, and best abortive. I do have a VERY slow metabolism, so slow snails look fast in comparison. I rarely experience a sugar drop from eating chocolate. One of the side affects of my cluster has ALWAYS been a sharp and intense energy drain. It usually returns after a few hours, but I've been working pretty hard lately, busy with a lot of things. I really need some time off, except it would trigger more clusters. MG PS. Apologies if this reads a bit brash. Still on edge from the clusters. Normal, polite Moxie will return tomorrow.

I'm sure I've posted along these lines before. I had a short-ish, mildly intense cluster attack earlier today. I don't really use the KIP scale, but I'd call it a 4 on my 1-10 scale of cluster pain. It was enough to cause me to leave my desk and curl up in bed for 15 minutes or so. What amazes and baffles me is how completely and utterly drained it left me. The attack happened about 2pm, and I was still tired and grouchy come 5:30. I eventually found a snickers bar, which magically restored my energy (shocking, I know). Just in time for a second attack at 7pm. This one lasted a bit longer, was a bit more intense, and has left me equally shattered. It felt like someone was using a cork screw on the top of my eyeball. I've felt cold since the first attack. Mood is non-existent. Also left with a headache that won't die. Listless is a good word to describe how I feel. Am glad my house-mate's daughter is around and she's fixed some dinner. Otherwise I'd have no desire or energy to fix something myself. MG

Um... did you even read my post, or where you intentionally going off topic? Yes, I was using the old (and I believe incorrect) cliché on purpose, but to mean something completely different. I don't believe marijuana (420, pot, joint, cannabis... whatever word you choose to use) is any more a gateway drug to harder drugs than wearing socks is a gateway to hard drugs. One could, after all argue, that drug takers wear socks, therefore wearing socks is a sign that one is inclined to take drugs. However, if the societies and governments of the world can come to understand that Cannabis has beneficial properties, and isn't as evil and dangerous as we've been led to believe for 40 years or so, then perhaps they can come to the same conclusion about psilocybin. And in that sense, perhaps pot will be a gateway to reducing restrictions on our magic medicine. MG

Hi lapsan, Welcome to the group, sorry you have to be here. I started busting with RC seeds, and found they helped a lot. At the time I was getting up to 5 hits a day every 2-3 days, and all the doctor prescribed stuff had stopped working. What CHFather said about prepping seeds is pretty spot on, albeit brief. I've written the steps I used here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289 Hang in there, and I hope it gets better soon. MG

The article linked below highlights a recent report that clearly shows legalising marijuana reduces crime. Although this doesn't directly impact people with cluster headaches, it does demonstrate that recreational drugs may not actually be the spawn of Satan that so many people make them out to be. Better yet, the article shows the growing acceptance of marijuana use in the US, and how it is actually better (at least in some ways) for society than alcohol. So how might this be to be a gateway drug, and why is that a good thing? I believe one of the key steps in making drugs like psilocybin easier to study and develop into medicine is to change people's perceptions of these drugs, and reduce legislation restricting access to them. If we can do this for marijuana, it only improves our odds of doing the same thing for psilocybin. http://www.huffingtonpost.com/2014/03/27/medical-marijuana-crime-study_n_5044397.html MG

Awesome video! Thanks for posting 1eye.

Interesting topic, and something I've also not thought about till reading this. I don't often have nightmares, although my dreams can be quite emotionally charged at times. I've not noticed any different between those nights I have a cluster and those I don't. Although, as I'm chronic, maybe they don't change the way they do for episodics. I wonder, as clusters seem to strike when one enters REM sleep, if the fact that you are woken at that point by the cluster, you simply remember the dream you would have otherwise had and forgotten? Maybe the cluster doesn't make the dreams worse, just memberable because of the timing. If you want to improve your dream memory, there are a couple of things you can try. - I know that when I meditate regularly, 5-10 minutes a day, my ability to remember my dreams greatly improves. - Also, if when you wake up, the first thing you do is try to write down anything and everything you remember about your dreams, the more mornings you make these notes, the more you'll remember of your dreams. You are basically teaching the brain that you want to write down your dreams, so it remembers more and more over time. You need to do this first thing when you wake up, when you're still in that sleep/wake stage, and do it every morning for a few weeks. Granted, if you have scary dreams, maybe forgetting is better. MG

I call that year the 'year of Hell'. It was a rough time. Any form of exercise makes my headaches worse. Prior to the 7 month headache, I had been going to the gym a lot and was loosing weight. The headache put a stop to that. Also, if I bust when I have a headache or migraine, it makes it worse. Just goes to show how diverse a 'headache' can be. Some ideas that might help, might not. I posted some information about some beneficial massage techniques here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1379405543/7 I've found head and neck massages can really help with headaches. Also, cold then hot, then cold applied to the area. Once read a post about putting feet in hot water and a cold press on the back of the neck. Haven't tried it myself, but the theory is the heat will draw the blood away from the head. Indometacin can also work well on headaches. I took it as an alternative to Anadin once I'd reached a point the Anadin was causing rebound headaches because I was taking so much of it. Good luck. MG

Hi, I'm writing this from my phone, so please forgive typos. When my clusters started 7 years ago, they came with a headache that lasted 7 months. The headache actually preceded the clusters a bit. The headache started in the evening dec 31 2006, no, wasn't drinking that night. That one single headache didn't dissipate until July/Aug 2007. Within a few days if it starting I was being hammered with clusters and migraines. Nothing I tried helped, and I tried everything I could. MG

HBWRs? Are those the same as RC Seeds? I would normally crush between 50-60 RC seeds when I busted with them. MG

I think the New Science Journalism article is the best I've ever read on the topic. MG

Have watched this film a thousand times with my children, and thought this clip would be very enjoyable for this community. MG

Oh wow! I really like your website. I think you have a good thing going on there. I haven't been able to read as much of it as I'd like right now (am technically at work), but will poor through the pages more later, and would love to provide some articles and help where I can. MG

Next time, be sure to stock up on the Ben & Jerry's Cookie Dough Ice Cream BEFORE busting and save myself a 15 minute walk to the local shops in the cold. Happy now though. MG

Well said SOS.

Bromo is good stuff, didn't know you could just get it by asking for it. Which country are you in may I ask? There have been some pretty promising trials going on with Bromo, and a lot of us have a lot of hope that Bromo will develop into the standard drug used by doctors everywhere for treating clusters. MG

Great video.

I've read people here saying they use a lower dose when out-of-cycle, and a much higher dose when in cycle. It didn't do anything for me, but always worth a try.

Watched it last night, and really enjoyed it. It is raw, in that they don't hold anything back. And it was 1985, so their attitude toward the gay and TS communities wasn't what it is today. But the battle they have is ever so similar to the battle we are having. Matthew McConaughey lost a lot of weight for the role. Jarod Leto, who plays the supporting character Rayon, is also lead vocals, songwriter and guitarist for '30 seconds to Mars'. From what I understand, he asked specifically to play this role, a gay transsexual, even though he is straight. He does an amazing job. MG

Trust me, and watch it. Be warned though, sex and foul language throughout, but it is based on fact and is quite close to home. MG