MoxieGirl

A sailboat in Florida sounds FANTASTIC! One of my sisters used to sail, sailboats for rich people from Maine to Florida, then fly back to Maine and do it again. At the end of winter, she'd sail them back up North. Talk about a sweet job. I've never even been on a sailboat, but have always wanted to learn to sail. It's on my bucket list. And would certainly be a way to de-grouch. Only seagulls to shout at. LOL Renée

I totally, totally get that Spiny. Sometimes, I just want to grab people by the shoulders and sake some sense into them. Even though I know I didn't used to be like that. I didn't really notice it until my best friend commented on how short tempered I am with people these days. She said something along the lines of 'I have issues with people'. No, not all people. Just those that piss me off. Which is growing in population I must say. Today, in a shop, the guy in front of me at the till, who obviously wasn't hurting for money, was trying to buy 2 sets of metal shelves that were still in their packaging, but damaged. He asked if he could get a discount for them because of the damage. He was offered 10% by the guy at the till. He didn't like that amount, and asked him to get a manager. The manager also said 10% discount. The guy tried talking them down further, but they wouldn't budge. I just wanted to grab him and shout that the shelves aren't that expensive to begin with, and if he wanted them, why not pay full price for some that weren't freaking bent!!! In the end, after squabbling over a few Pounds, he didn't buy them. Left them in my way in the queue. He should be very grateful I didn't add a dent to the shelves with his head. A year or so ago, thoughts like that would never have entered my mind. But drivers are the worst. Why do people drive 40 in a 60? And worse, why do they speed up in places where you can pass them, so you can't pass them, then slow down in places where you can't pass them. I swear, they do it on purpose.

I'm finding that I have less and less patience with people. So much so, my friends have even commented on it. I'm normally a pretty easy going person, and generally believe people do their best and aren't out to annoy me. But lately, it takes very little for people to annoy me. Drivers, clueless people at the tills in stores, clueless people in the queue at the tills, etc. etc. Now, I know we shouldn't put everything bad in our lives down to clusters. But am just curious if other people have noticed this in themselves. I generally sleep well as my clusters rarely attack at night. I could understand, if someone was loosing sleep, as many of you do, from clusters, it would affect your mood. But, maybe I'm just getting old. Thoughts?

Make jam? Me? I'm domesticated, but not that much. Lol Granted, I do make candles as a hobby, and they would make very nice candle holders. Could even make candles that look like jam.

And just when I'm getting used to what life might be like if I didn't have CH, WHAM!! The demon returns. Guess I better get planting my spores.

Jeff, add them to the 'other' item in the survey. I can't change it now without wiping the data already collected. It's a start anyway.

Hi, I've put together a quick little survey on cluster headaches, mostly focused at Triggers, Preventatives and Abortives, with a few demographic questions. If you have 5 minutes (probably won't take that long) would love it if you'd fill it in for me. I'll publish the results in a few weeks. Here is the link to the survey: http://www.surveymonkey.com/s/XX2SGNG Thanks, Renée

No, may not have set a trend yet, but is a step in the right direction. Took me 9 busts in total to break my chronic cycle. Hang in there.

Brew, that is fantastic news! Hope you have many more nights like that. xx Renée

Hi Nick, Welcome to the family, and sorry you're here. I can't answer many of your questions, but might have some information that is helpful. Alcohol doesn't trigger my clusters, which seems to go against the norm. I know of one or two other people who can drink with no ill side-affects. In fact, 4-6 shots of vodka often aborts my migraines. Go figure. For all of 2011, I had 1-5 attacks every 2-3 days, almost without fail. I think there were a couple of times that I managed 6 days without an attack in that year. In December, I started busting. In total, twice with mushrooms and 7 times with seeds. In the last 3 months, I've had pain free gaps of 12 and 16 days, and several that were nearly a week long. And when I do get hit, they are greatly diminished. I do get a few bad ones, but NOTHING like I was getting last year. This board, and the wonderfully supportive people here, has quite literally saved my life! Last year I did try the Omega3 routine for a bit, but it seriously clashed with the Topiramate I was taking (turned my pee to fire). I am going to start back on it before long, but haven't yet for one or two unrelated reasons. It is well worth the try though, and I'd highly recommend it. It doesn't clash with busting (read closing the door thread), and for many people it takes effect in just a few days. I would also look into growing your own mushrooms, if you are going to go the shroom route. You can buy spores online, which are legal to own, and there is plenty of information about on how to grow them. Growing your own means you aren't going to pick the wrong ones, or buy off the street. Hope things improve soon. Renée

Hugs. xx Renée

Totally agree. I actually think that because so little is known about CH, and so few people have properly studied it, that half criteria for determining if someone has CH is inaccurate, or at the very least, an over generalisation. Just from what I've read of how people describe their clusters, so many of them fall outside what the doctors define as a cluster it's laughable. My clusters are clearly clusters, but they are quite different from what many of you experience. I just think it is too early in the lifecycle of fully understanding the condition to put too many restrictions on what it is. Renee

I came across this article and video today. It is really good! http://communities.washingtontimes.com/neighborhood/moment-space/2012/apr/2/suffering-sinus-problems-or-migraines-it-may-be-cl/#.T4dpTJXrHgo.facebook Renee

I know Brew, I keep telling myself that. I know the demon isn't dead, just on holiday. Or driven away by a combination of hormones and seeds. All my other headaches have greatly reduced too, and I feel so much better. But, have had a few headaches this past week, so the smart person in me says I need to prepare. Where can I buy jam jars in the UK?

I need to get my arse in gear and plant some mushrooms. The spores have been chilling in my fridge for ages. I just haven't gotten the rest of the kit together and planted. But (there's always a but) I have been feeling so fantastic the last several weeks, it feels like they are gone! I know they're not. I'm not that thick. I've had a few minor ones recently. But my head is so much better, in every way, I feel normal. Hard to plan for the bad times when the good times are so good. Renée

I think it's great that word is getting out more about CH, and also the cure that works. Is bad he has them, but glad they have found you. xx

Hi Everyone, I came across this article today, that mentions CH, but isn't about CH. It uses the term 'cluster headache' to indicate a really hard time. The full article is here: http://www.perthshireadvertiser.co.uk/perthshire-news/local-news-perthshire/perthshire/2012/04/06/cops-target-rogue-drivers-73103-30701779/ It's about police clamping down on uninsured/unlicensed drivers. The relevant paragraph is: "And in addition to this cluster headache, culprits face being charged and reported to the procurator fiscal or a conditional offer of fixed £200 penalty and six penalty points on their licence." MG

Pain Free. Usually, when I think about 'pain free', I think only in terms of being cluster pain free. I have so many normal headaches and migraines to easily fill any gap I might have between attacks. But, I actually have some fantastic PAIN FREE news to report. Today is the 13th Cluster Free day I've had!! For me, that is utterly amazing! I've had one 12 day cluster gap this year, and a couple around 9 days. All that is after a year of getting hit every 2-3 days. And although in the back of my mind, I'm expecting the next attack soon, I have started to feel normal again. On top of that, I have also had 9 days with not a single headache!!!! I don't think that has happened for 2 years, or more. Perhaps even 5 years. And if that isn't enough, I've had only one, short, migraine this year. I am nearly speechless! But, that is not the awesome news. That is only the good news. Because the most wonderful thing has happened this past weekend. I saw my daughter (age 8) after not seeing her for 5 years. It's a long, complex story, and hard to understand, or really explain, if you don't know the full situation. So I won't go into details here. But I now have her back in my life, and I couldn't be more happy. I'm going to be seeing her just as often as I can arrange it, and plan on moving so I can be closer (she's about a 3 hour drive away now). The last 4 or 5 years has been dominated by headaches. And now, suddenly, I feel I have something to live for and a light at the end of the tunnel. :-D MG (aka Renée)

OH! Both excellent points. Thanks Jeebs. This is a US Magazine, so linking it to the Harvard studies is an excellent idea, and maybe BOL too (are they the same thing?) Need to do a bit of research me thinks. And, I was a little concerned about the ending. It doesn't really wrap things up, but closing off the story of Samantha (me) would do that nicely. And even if I'm not 100% PF, I am SO much better than before I busted. I knew asking for comments was a good idea. Thanks again, MG

I have been presented with an opportunity to write an article on psilocybin for a new magazine that is focusing on the medical uses of plants. As I'm relatively new to this arena, and far from an expert, I thought I would post my latest draft of the article for some constructive comments from those of you who have been around a bit longer than me. This may very well be the first in a series of articles, so I don't feel pressured to include all information about everything in this first one. That is of course assuming the magazine goes beyond one issue. At the onset of the article, I wanted to make clear what a cluster attack was, and its severity. I hope that comes across well. Thanks, MG (Renée) ------------------- Samantha was having a bath, like she does every day. Relaxing in the hot water, nothing unusual, nothing out of the ordinary. Then, without warning, a heavy, steel crowbar was rammed deep into her left eyeball. It was cold, as only steel can get. So very cold - it burned. The steel shaft was pressed in deeper and deeper, all the time being twisted to the left and the right, gouging out her eye and shredding the optic nerve behind it. After a minute or two of this, the crowbar started prying, ever so slowly, in a downward direction and putting pressure on the top surface of the eye-socket. The pressure would increase, then ease off a bit, only to have more pressure applied a moment later. She could feel, in finite detail, the top half of her skull being ripped apart. A jagged line had formed across her forehead, and in agony as she was, she could visualise the bone, first cracking, then splitting wide open. A few minutes would pass and the crowbar would ease off just a little, and her skull would mend. Only to be torn apart again a gasp-of-a-breath later. The 30 minutes that this ordeal lasted, seemed like hours. But then, it stopped. Just as suddenly as it started, it stopped. The pain eased to nothing in the span of about 30 seconds, leaving Samantha as much of a broken puddle of tears, as the bath water she was in. I wish I could say Samantha’s experience was a one off. A rare occurrence. However, that would only be lying to you. No, she knew exactly what it was. She had been having these sorts of ‘headaches’ for over four years preceding this attack. Her cycle consisted of five or six attacks over the course of two weeks, and then a 2-3 week break before the next ‘cluster’ of headaches. Little did she know then, that things were about to get worse. Much worse. Cluster Headaches are often described as the most severe pain known to mankind, or to medical science (depending on which article you happen to Google). And although Samantha is a fictitious name, the attack I described, and her condition is all too real. Cluster Headaches (although as ‘headache’ is such an inadequate word to describe them, I shall refer to them as Cluster Attacks) are believed to originate in the Hypothalamus, and directly affect the Trigeminal Nerve. This Trigeminal Nerve is the largest in a group of nerves in and around the face. It leaves the brain via an array of holes in the skull, and is a paired nerve, in that there is one on either side of the head. Its main function is to provide sensation to the face and controls the muscles in chewing. Cluster Attacks can last anywhere from 15 minutes, to 3 hours. Sometimes, breathing pure oxygen at the onset of an attack can abort it, or a self-administered injection of Imitrex . Many sufferers will also try a range of prescription drugs in an attempt to prevent attacks, such as Verapamil, Lithium and Topiramate. All of which have a range of challenging side-effects and/or potential health and mental risks. Forgetfulness, depression, weight gain, weight loss, dizziness and tiredness are just a few of the side-effects on a much longer list of possibilities. Sufferers often find that these drugs become ineffective in treating or preventing Cluster Attacks as the body adjusts to them over time. When the attack I described above happened, Samantha had been on Topiramate nearly a year, increasing her dosage every couple of months to keep it working. Eventually, she reached, then exceeded, the maximum effective dose for Cluster Headaches, and then her preventative stopped working altogether. By this time, she was experiencing 1-5 Cluster Attacks every 2-3 days. The medical world seems happy to dish out man-made medicines for any of an array of conditions. And yet, very often by returning to mother nature, a better solution is found. Such is the discovery that many Cluster Attack sufferers have made. Some sufferers are turning to a set of treatments that are proving to be surprising effective, and with very little side-affects. The primary ingredient of these treatments is Tryptamine. One source of Tryptamine is Psilocybin, the primary chemical found in Magic Mushrooms. Additionally, Tryptamine can be found in LSD and LSA, which is being extracted from the seeds of the Rivea Corymbosa flower. Popular in the psychedelic age of the 60’s, many countries, such as the US and the UK have made growing and/or consuming Magic Mushrooms and taking LSD or LSA, illegal. Which has greatly hampered research into potential medical uses of Tryptamines. But, it didn’t put a complete stop to it. Recent articles have been published on how Psilocybin might benefit those with depression, and with considerably less side-effects than conventional medicines. Studies have been conducted recently in the UK with such an aim. Also, recent studies in the US with a non-hallucinogenic version of Psilocybin, are indicating possible treatment options for not only depression, but also obsessive compulsion disorder, alcoholism and addiction. (BBC News, ‘I took magic mushroom drug psilocybin in a clinical trial’, by Dr Michael Mosley, 6 Jan 2011) For the Cluster Sufferer, the positive effects of even a very small dose of Psilocybin can be profound. Initially, one might have to take magic mushrooms once a week for a month or two in order to break a cycle of clusters. But once the cycle is broken, a sufferer would normally only have to take the medication every 2-3 months to keep Cluster Attacks away forever. Additionally, the dosage required to ‘bust’ a Cluster Attack cycle is much less than what someone would take if they were taking magic mushrooms for recreational purposes. Generally, a cluster sufferer would take half, or even less, than what is required to cause one to trip. In fact, cluster sufferers see tripping as a negative side-affect, and most I’ve spoken to don’t enjoy it, or look forward to it. Everyone’s goal, therefore, when taking psilocybin to stop clusters, is to find the smallest possible dose that will be beneficial without causing a significant trip. Quite probably the biggest hurdle to these natural sources of Tryptamine is people’s reaction when someone says they are taking Magic Mushrooms for their Cluster Attacks. ‘Oh yeah, sure. Wink, wink, nudge, nudge,’ is often the response one can expect. This has perhaps been exasperated by the medical use of marijuana, and a perception that users will make up any condition to get some. But of all the Cluster sufferers I have spoken with, taking an illegal drug is the last thing they want to do, and for many, a last, desperate resort, before suicide. Yes, Cluster Headaches are so bad they have acquired the nickname of ‘suicide headaches’ because of the high number of suicides attributed to them. The hope, is that current and future experiments into the medical uses of natural sources for Tryptamines such as Psilocybin, LSD and LSA, will break down some of these negative misconceptions and provide a tangible relief to Cluster Headache sufferers.

I haven't read the article yet (just logged on while my bath water was running). Will throw out a couple thoughts though, and read the article this weekend. There is advantage in numbers. Being Transsexual has nothing, absolutely nothing, to do with being homosexual. But yet, there are LGBT lobbying groups (lesbian, gay, bi, transsexual, if you didn't know). Why do we throw our hat in with the homosexual community when we aren't (necessarily) gay? Because it gives us a loud voice when otherwise we'd have a squeak. I would go so far to argue that Transsexuals experience many equal rights in the UK because we were included in with LGBs. So, standing on our own won't give us much of a voice. And even if we aren't even remotely close to headaches or migraines, at least we can jump on their coat tail. I think we should be more focused on changing the name of cluster headache, to cluster attack, or some other appropriately hellish name that has come up threads time and time again. I think our greatest downfall is the 'headache' in cluster headache, not what colour we pin on our jackets. If I were picking a colour, I'd say red. Simply because cluster attacks feel like a red hot poker to the eyeball. Anyway, that was my 2 cents on the subject. MG

Sorry, didn't mean to come across so strong. People often say the Brits love to talk about the weather all the time. But that is because the weather here is so interesting to talk about and is always changing. Everyone thinks their weather is variable, but till you've lived here, you really don't know what variable is. MG

You know, I've lived in a LOT of places, Iowa, Arkansas, Texas, North Dakota, Honduras, England... get the idea. Everywhere I go, the locals all say 'if you don't like the weather, wait 5 minutes.' The only place I have found this to be consistently true is in England. When I lived here the first time, one day I sat at my drafting table and I watched it snow until it turned the ground white. Then the sun came out, it melted till the pavement was dry, then it rained, and hailed, snowed again, melted, snowed, rained....etc. Each change was a complete stop of one event with a break, then the start of another. This was all between 8am and noon! In Texas, Iowa, etc., when the weather changes on short notice, 1. You can usually see it coming from miles away. And 2. It might go from hot to warm to cool. Or sunny to cloudy to rain, and then rain ALL DAY. But generally, when the weather man says there will be sunshine for the next 3 days, there will be sunshine for the next 3 days. Not so much in England. In England, you always have an umbrella in the car, and take a jacket along, just in case. Because you may look out the window to a beautiful, warm, sunny day. But by the time you walk down the stairs and out the door, it could be pouring down with rain and cold. I know, I've harped on too long. Sorry. But that saying (used anywhere but in England) is a pet peeve of mine. LOL MG

Many congrats to the two of you. Love the hat. Xx

MJ? I totally understand the relaxation after stress. Hits me that way too, which is why most of my hits are in the evening or weekends. If I'm busy, I'm ok. MG