MoxieGirl

Hey Purple, Welcome back, wish you weren't here. If you know what I mean. Must be tough when the beast returns after such a break. I hope the seeds work. xx Renee

Pain. It wraps itself about my forehead like a steaming towel. Enveloping my skull, consuming my every thought, burning into my every action. Headaches, nearly daily, plague my life and snuff out my laughter. They thump, they pound they pierce my joy like a jack-hammer on steroids. Migraines, shoot white hot needles into my eyes. For five days or more, I cannot bear movement, light or sound as they suck from me all remaining resemblance of life. And then there are the clusters. Pure, undiluted pain. Out of the blue they come, morning, day or night. They pounce without warning, and when they leave, all that remains is a hole where my sanity once stood. Migraines: headaches are insignificant by comparison. And if one tried to compare a migraine to a cluster..? Well, you might as well be comparing the size of the Earth to the Sun. And yet, there is one thing that scares me more than these three demons, combined. What if I find a cure? I have realised, over the years, that my pain does not merely consume me. It does not simply ruin my life or put me in bed for days on end. No, this pain that I describe, it often defines me. What if I were able to be free of it? I wonder what I might do. I know many would ask what wouldn’t I do, what couldn’t I do? But I do not remember, nor can I imagine, a year, a month, or even a week without such pain. Surely such a thing is not possible?! Surely it is unimaginable. At least, I, cannot fathom it. I do what I can to fight the battle I must. I try this drug and that, always seeking an answer, an escape from my Hell. Always in fear of what that freedom might be like. Renée

It would to be interesting to see if mushrooms helped. They all but stopped my migraines (43 a year down to 3), and broke my streak of clusters. And with no side affects (really) other than feeling drunk for a few hours. Renee

Wow, really good article. I like Professor Nutt, and what he writes. Here is that paragraph in full, as I think it makes more sense: Cluster headache is one of the worst pain syndromes known with limited treatments and high suicide rates. 'Magic' mushrooms are widely used by sufferers, but the controlled status of psilocybin means it has not been formally studied. When a charity for this disorder was approached to request support for such a study, they replied that they could not consider working with 'illegal' drugs. This sentiment was echoed by Member of Parliament Jim Dobbin, who when he heard of current psilocybin work, asked the Drugs Minister to confirm that the appropriate licences were in place. This remarkable – and probably unique – level of parliamentary scrutiny of a scientific study illustrates how the 'illegal' status of this drug can provoke intense public interest of a negative sort.

That's amazing! Well done. It almost makes all this *swear word* worth it, when you can help someone else find the exit door to their personal Hell. If even for just a little while. Hope is a wonderful gift, and that's what you gave. Renee

So, which is it? Poison or really good to eat? Am sorry to say, but they are going in the bin at this very moment. My best mate is around with her dog, and we couldn't risk the dog having a taste. If it's any consolation, I'm going to plant a new crop this week. LOL

I have no idea what these are (clearly not consumable), but thought they were pretty, popping up in my drive as they did.

Yeah, I'm quite sure the two are linked. I believe low testosterone = more clusters.

To be fair, I'd just be happy if 5-HPT would reduce the mornings I wake up with a headache. So if it doesn't help clusters, that's fine. I have something for that. So, busting seems to be helping clusters and migraines. Hopefully, 5-HPT and/or Melatonin will help with my headaches.

'... ludicrous beyond compare.' I like that, and sums it up well. And Hipshot, the Wild Side is the only side to be on. (and a great song to boot)

Thanks for the link. Some interesting comments. I'm quite active in the UK scene, and a member of a few .. um .. intersting sites. Spiny, yes, it does work well on short lived pain, but with practice and concentration, it can last much longer. I've had laser treatment on my face to remove my beard, something around 20 treatments now, each lasting 20-30 minutes. This is the closest externally created pain to a cluster I have yet found. Imagine being stung by 350-500 bees, in the face, for 20 minutes. It is intense to say the least. I find tapping my finger and counting the taps to 4 helps, but is a challenge to keep focused the whole time. Renee

Yes, I do think there is value in focusing on something (driving when you have to). But, in general pain management, not focusing on it reduces the pain level. I can reduce a REALLY bad, 5-7 day migraine by chatting with friends online. It takes my focus away from the pain, I can do it in a dark room and with the laptop brightness turned down low. But I also totally agree, it works to a point with clusters. There is a point when the cluster just overwhelms EVERYTHING. What I do with the needs is pinch a bit of skin to create a fold, and push the needle through the fold, so the needle ends up laying flat against the skin. It goes in, and back out again. Much like one might pierce an ear. I've pierced my own ears btw.

Hi, I believe my clusters have a foot in the SUNCT definition and a foot in cluster headaches. There is actually a triad of 3 headache types that fall under the cluster grouping. SUNCT, Cluster and PH (Paroxysmal Hermicrania). My clusters tend to be quite short, normally 10-15 minutes, a long one lasting 30 minutes. But I also have extremely short ones, measured in seconds or 1-2 minutes. I get a lot of these, but not the 10+ a day for a SUNCT diagnosis. Usually 1-5 a day, and not every day. So, I don't have the frequency of SUNCT, but I also don't normally have the very long headaches of a cluster. I am finding mushrooms are helping me. RC Seeds also helped, but I think shrooms are working better. Worth a try. Renee

Hi, Not crazy. Well, that's not a professional opinion, but in regards to this question, no, makes sense. LOL I used to, when my clusters were really bad, get extreme body temperature shifts after an attack for about a 1/2 hour. Someone on the board said they tend to get temperature shifts BEFORE an attack, which warns them of a coming attack. I sometimes get more subtle signs, but then it's not 100% accurate. I'll get a feeling, or a sense that one is due, but then maybe nothing. Or a headache for an hour, then a proper attack.

toostrike, I've heard of people going running when they get a hit. Physical exertion seems to work for some. I hate running with a passion. Quite possibly as much as many people hate the type of pain I adore. LOL ironic, isn't it. Cluster are constantly changing, and are rarely the same for one person for long, and can be very different across groups of people. I do believe the best course of action is to try just about anything and everything. Well, safe things anyway. I don't suggest you go sticking needles in your skin. That's just crazy (but I'm a little crazy). Me, I tend to curl up in a ball and rock a little. I used to pace, I used to not be able to keep still. But now I find I just focus on the pain, or try to focus away from the pain.

Sorry, really trying not to offend. Pain is a big part of my life, understanding it and controlling it - if possible. If the moderators feel my post offends, they are welcome to delete it. I won't be offended, just trying to be open and honest about a sensative topic, and possibly find some answers.

So, went to my second health food store today and asked if they had Meletonin, as Holland and Barrett didn't. I was told that it can't be sold over the counter in the UK. Other countries, no problem. But because it impacts on your hormone levels, you have to have a prescription to get it here. Guess I'm off to see my doctor.

Hi guys, I totally get what you are saying, and why I feel this is such a sensative subject. You have to understand that I am very much an explorer of pain. I have done things that made very extreme practicianers in this specialist subject, wince and turn away. And this was before I had clusters and my pain threashold more than doubled! However, I also know how utterly all consuming a cluster attack is. And even with all my practice, I can't distract myself from the worst of them. And the needle thing, it works, but only when the cluster has calmed down enough that I actually have fine motor control back. It's dangerous enough as it is. For about 18 months, I explored more and more intense, controlled pain, with an aim to get as close to a cluster as I could, while remaining in control, and able to distract myself from it. I barely scratched the surface. But, on a smaller scale, on the more managable ones, I was curious if anyone found success - like spiny's driving story. The concept of 'looking away', being distracted, is a good concept. But clusters just blow it out of the water.

SOME COMMENTS IN THIS POST, AND POSTS FURTHER ALONG, MAY OFFEND. THAT IS NOT MY INTENTION, JUST TRYING TO BE HONEST AND OPEN ABOUT A SENSATIVE TOPIC. I've been wanting to write this post for awhile now, but have been trying to find a way to say it so it doesn't sound condescending. I really hope I succeed. Also, Spiny's recent comment about counting, in another post, has prompted me even further. There is a technique I have been trying to get to work with clusters for a few years now. It involves distracting yourself from the pain, or what I think of as looking away from the pain. The concept is this: If two people are talking to you at the same time, you will only clearly hear the person you are looking at. Look over to the other person, and the first person's voice becomes a blur as the second person's comments become clear. Wherever your focus is, that is what you hear. Pain works the same way. The mind can only process one source of pain at a time, and if we distract it, or turn our attention away from the pain, it shifts to the background of our consciousness. I won't go into details of how I've learned this, at least not on a fairly public forum, open to many age groups. I once found a very effective abortive by driving a needle under my skin. Or perhaps 2-3 needles. The pain was sharp, and intense, and nearly always aborted a cluster, even though the needle was a 10th of what the cluster was. Now, I'm not suggesting people start sticking themselves, or hurting themselves. No, not at all! But there are stories of people banging their head, and I believe this is the same concept. I've also found, with much lesser extremes of pain, that if I tap my finger and count each tap, 1 to 4, and repeat (1-2-3-4, 1-2-3-4, etc.) that this is a very effective form of distraction. By concentrating on the counting, the pain becomes a background noise. I know what you are thinking. Clusters are 1000 times stronger than what I'm talking about, and no such technique works. Yes, I know. Clusters are like 10 4-year-olds in a small room screaming for your attention at the top of their lungs. Tapping your finger and counting to 4 isn't going to help. But I think the concept is valid. I have found that when I get hit while driving, if I keep driving and focus on driving, the pain is less. The instant I pull over and stop, the pain quadruples. I've thought about having a sheet of paper handy, full of easy math equations, and trying to solve them while having a cluster. I know, from my experience, that if I get into the left side of my brain, I can get away from many forms of pain. And doing math is a great left-sided activity. Haven't tried it yet, but will one day soon. But, my clusters are fairly short, and not like a 'normal cluster', in my opinion. Just curious if anyone has any experiences along these lines, and if you found it helpful. Renee

Hey David, and all. I was born in a male body with normal testosterone levels. About 6 years ago I started on a high dose of anti-antigen, to reduce my testosterone levels, and at the same took high doses of Oestrogen. It is believed that this change in my hormone system is what triggered my clusters, and I've had them ever since. There is strong indication that such changes in hormones affects the hypothalamus, which we all know is the centre for triggering clusters. I believe there is a strong and direct link between testosterone and clusters. I now have a normal T level for a woman, but it is naturally lower than it was when I was a man. My doctors don't think that if I raise my testosterone it will help my clusters, and quite possible cause other unwanted changes.

Thanks FG. I also have bad daily headaches, so if it doesn't do a thing for my clusters, it might help them. Even if it helps me sleep, that would be a bonus. But still keeping my eye open for Melatonin.

Thanks Hipshot. I do my best to write well. I lived in Dallas about 2 years, or so. Way back in the 80's though. It may have changed a little since then. I also did a year of uni in Arkansas, and also lived in North Dakota when I was in the Air Force. So been around a little.

So, I cart myself down to the health food store planning on buying some Melatonin. Only to find out Holland & Barrett don't sell it. Something to do with a licencing issue or something. The lady I was speaking to offered me 5-HTP instead. She went on to say this is really good for balancing out the serotonin levels, and ideal for people who get headaches in the night. I didn't mention I get headaches in the night, just that I was looking for Melatonin for clusters and to help me sleep. She said this should do the trick (my favourite word, 'should'). So, thought I'd try someone.

Feck, that would be a good title. Although I'd probably want to use its stronger cousin, but then would get banned for swearing. LOL

Hi toostrike, and gang. I was initially raised Catholic too. At 14 I became a born again Christian, and started attending a pretty radical Christian Church. At 19 I went to a Bible college in Dallas where I studied the Bible in the original Greek and learned some of the Hebrew in considerable depth. When I lived in England the first time, for 6 years I was apart of a very fundamentalist church, street preaching and Bible bashing my way to God. At 29, I very thankfully escaped organised religion. I usually tell people I barely escaped Christianity with my life, and that isn't far wrong. I was VERY suicidal, and largely because of the guilt cycle the 'church' had taught me all my life. Breaking free of religion saved my life. I very much see MOST organised religions, at least the big ones I've interacted with, as being a form of control. For many years I was an Atheist. Still am, in that I don't believe in a 'higher being' that is concerned about our daily lives and knows the number of hairs on my head etc. I have studied the Bible too well for 15 years, that I can now clearly see its lies and misconceptions. BUT! And this is a big but. That isn't to say I'm not spiritual. I have seen some amazing miracles in my life, experienced some amazing miracles too. And through the avenue of prayer. But I don't believe prayer is going to a higher being who will decide to act upon it or not, or manages our fates. I do strongly suspect that prayer and faith is a way for us to tap into higher powers that we all posses, to reach out and touch our spiritual self, and thus activate powers that we don't yet fully understand. So, does prayer work? Yes, I believe it does sometimes for people who really believe in it. Does sending out good thoughts and/or vibes help? Yes, I believe it does sometimes for people who really believe in it. Life is about finding the connection with our spiritual self, in any way you can. If religion, and calling this power God works for you, then awesome. It doesn't work for me. I was hurt by that concept far too deeply. And, although I slept well last night, I was awoken at 3:30 with a REALLY bad cluster. Felt like someone was playing kettle drums in my head for an hour. Not nice at all. So, pray harder.