MoxieGirl

Thanks for the advice everyone. I may try capsules, have thought about it before. I've finally gotten a mix where I don't mind the taste, just the smell. Even the thought of chopping up shrooms for soaking makes my stomach knot up a little. But the effects aren't bad. I don't get nausia. Was a bit bloated last night, but had had a heavy meal earlier in the day. Have woken up this morning with an almighty thumping headache just behind my left eye. Not sure yet if it is the start of a cluster, a shadow, or just one of my normal headaches greating me on a new day. MG

I've always used Peppermint Tea when I make my 'herbal tea', as we call it. The peppermint helps with the taste A LOT. I've also started adding honey and lemon, which helps with the taste (and from what I understand, the psilo to break down). After my first cup of 'herbal tea' two years ago, I can't smell peppermint tea without it triggering the taste of mushrooms (which I hate). The smell alone can give me a sickly feeling in my stomach, even though the shrooms themselves don't make me feel ill in any way. They say smell is one of our strongest senses of association, and it certainly plays a part here for me. Does anyone else experience a strong smell sensation? MG

CHS - so glad you are in a happy relationship now, and your son sounds AWESOME! I made a rule 7 years ago when all this Hell started, that I would never lie to anyone about my headaches. I get so many, and have had to cancel on so many events at the last moment, I didn't want anyone to ever think I didn't want to go, so said I had a headache as an excuse to get out of it. Everyone who knows me, knows that when I say I have a headache, I'm serious. And generally, it is something of the level or intensity they can barely conceive of. I've found that approach to help me, and those around me, a lot. Happy New Year to everyone, and Pain Free wishes all around. xx MG

Thank you. Mine aren't usually THAT bad. Has been a few years since I've had to pace around the room with them. A bad one will have me rolling and tossing in bed, but it takes too much thought power to actually walk without effort. For me, a long attack is 30-45 minutes. Most are probably 5-15 minutes, although can often have a bad headache before or after as well. I try to control my breathing during an attack as well as focus my thoughts. The two hemispheres of my brain tend to have their own independent thought processes, and I'm often aware of both strains of thoughts at the same time. This allows me, if it's not a BAD attack, to retreat into my other 'mind' and escape a certain amount of pain. But takes a lot of concentration, and walking around during an attack is a distraction. So I've learned to curl up on the bed and retreat into myself, as it were. MG

My daughter is 10, and doesn't live with me. BUT, she is down visiting this week, and I'm starting to understand the impact these blasted clusters can have on family life. Because my daughter lives so far away, she doesn't get to spend much time with me and my son (who is 23 and doesn't live with me). So we have been taking advantage of her being down for a whole week and spending a lot of time together, which is fantastic! Apart from the times when I need to go and lie down for a half-hour. Also there is the generally grouchiness (to put it nicely) that tends to encompass attacks and on their own can ruin one's day. This morning for example, my daughter and I were laying in my bed, all snuggled up like parent and child often do, talking about out day. The plan was to start with making pancakes. I have a great recipe and we love cooking together, and then go to a Panto this afternoon. She gets up for a couple minutes, and by the time she returns, my head is thumping away. Not a horrific, grasp-head and scream sort of attack, but still enough of a one to put me off doing anything but staying in bed for a bit. She pressed her cold hands onto my forehead, which was surprisingly refreshing, and we lay there together for awhile. I eventually get up to make coffee, which is also helping a lot. But this is pretty much how the week has gone. It sucks for my kids, big time. I can't imagine what it must be like for those of you in relationships and with kids, and with the full-on head banging clusters. I'm now entering my worse season of the year, Jan and Feb. I so need to bust! My heart goes out to everyone on this board this holiday season, and especially to the supporters and loved ones. Hang in there. It's only life. MG P.S. Pancake time! (although my head would prefer I crawled back into bed)

Hi Sabrinak I live in the UK and can get Codeine over the counter for my migraines in a product called Migraleve. Not sure I've ever busted within 5 days of taking it though. Might have, but presumed it wouldn't affect the bust. Might be wrong. Before busting, I was having 40+ migraines a year. The year following busting, I had 3. I now average between 3-6 a year. MG

Hi Art, I think you have a good (if that's the right word) benchmark for what you can survive. My worst year was my first year with Clusters - 2007. I had 1 single headache that lasted 7 months! I do mean non-stop, day and night, for 7 months. On top of that I was getting hit a couple times a month, or more, with migraines and then clusters left right and centre. For a time, the clusters had a regular pattern, Tuesday night, 7pm or 7:20pm was a pretty certain thing. Apart from that, they could attack anytime, anywhere. I call it my year of Hell, and that is my benchmark for when things get bad. Hang in there. MG

I'm not the expert, have only grown a few batches. It was much closer to the 2 week point before I really saw a lot of growth. It should be white, almost cobwebby in colour and consistency. Green is bad, that's a bacteria I believe. But white is probably OK, give it more time. I would store mine in a box in the cupboard. Out of light and not too warm and not too cold. MG

Hi Art, Welcome to the board, and sorry you are here. I was hesitant to try busting for a long time too. I had heard about this board a good 18 months or so before joining and really looking into it. I would say it was a 50/50 between the illegal aspect of it and the fact that I'd be taking hallucinogenic drugs. You see, I have a brother who used to be a dealer. I smoked pot pretty regularly when I was about 10 years old with him, and was offered coke when I was 14 or so. Thankfully, I turned down the offer. Not long after, my brother did 2 years in prison for dealing. Although I have nothing against such drugs philosophically, I didn't want to be like my brother. So for me, busting was always a last resort. Like you, I'm chronic. I started out as being chronic 7 years ago. 2010 was a very bad year. Was getting up to 5 attacks a day ever 2-3 days, plus migraines, plus daily chronic headaches. It wasn't my worst year, but it was a bad year. It's also worth noting that I had been on Topiramate for 18 months by Nov 2010. I was beyond the highest recommended dose, and it was doing nothing for me. So I told my doctor I was coming off it and was going to try magic mushrooms. I've never looked back. The improvement, although not complete, was amazing! The 20-30 minute PTSD attack I would get after every cluster was gone after the first bust. Migraines went from 40+ a year to a handful. And I've had Pain Free days of up to 23 days. I spoke to a friend of mine about it who is a police officer (constable here in the UK). Like already mentioned, she said the police have bigger crimes to fight. As long as I'm not dealing, or announcing it to world, I will more than likely stay off the police's radar. Take care, MG

Thought I'd get in early wishing everyone a very Happy (and Pain Free) Christmas and New Year. MG

Hi CHS and Bundy I agree, #10 is the big one. The one that means the most and is also often the hardest to do. It's not only invisible illnesses that suffer unbelief. Left-handed people suffered for years, and were forced to write with their right hand. The homosexual and transsexual communities also suffer. All of these things, as well as headaches, you can't prove with a blood test or MRI scan. There is no visible indicator to solicit sympathy. Which sucks because society seems to need that visible indicator to grasp the reality of the situation. Perhaps we could issue every cluster sufferer with a taser. And when people don't believe clusters are painful, we could say, 'a cluster attack feels like this' - ZAPPPPP! OK, perhaps not. Then again.... http://www.taser.com/products/self-defense-products Disclaimer: I do not condone or promote the use of tasers to convey the pain of a cluster attack. I'm just joking. LOL MG

So often I read supporters saying they feel so useless, well, here are 10 things you can do that mean the world to those of use that suffer.

90% of my busts, I've done on my own. When on my own I would always line up a movie to watch. Something funny, something I've seen 100 times so there are no surprises. I've also learned that having someone around (a babysitter I think everyone calls it) isn't enough on its own. This person needs to engage with you. Let me explain. When my best friend and I rented this place together, she was 'around' when I busted. That is to say, probably in her room or off doing her thing, but in the house. I felt safer cause I wasn't alone, but was still left to my own devices. Eventually she agreed to try a small amount of mushrooms to combat her depression, and when she did her bust, we also invited her son over, (who has plenty of experience with mushrooms). The two of them split a 1.2 gram dose, and I was the sober babysitter. The two of them had a GREAT time. They laughed, watched funny films, talked. My best friend REALLY enjoyed her minor trip. She then realised that leaving me alone when I busted isn't what I needed. I needed to engage with people. I think the dose level has a lot to do with it too. I've found 1.2 gram is a good dose for me. I've worked my way all the way up to 2.4, and really did not enjoy that. Granted, this was during the time I was more or less on my own. Even at 2.4 I didn't hallucinate. MG

Weatherman, Thanks for the link, I shall read up on Roz, she sounds amazing! I love amazing, inspirational people. I soloed when I was 15 or 16, would have been 1980(ish). Then got a girlfriend and my flying funds were diverted. :/ But my second year at Uni I went to a university in Arkansas that taught flying, and got my license. After that year, I promptly ran out of money (the story of my life until recently). I took it up once again many years later, but didn't really have the funds to keep with it. As you say, it has gotten expensive. I was hoping to one day learn to glide, or even get a power-shute or ultralight configuration. Anything to get in the air. But I have a feeling all that is a no go. Although... I haven't specifically checked the regulations in the UK.... At any rate, flying always represented freedom to me. Freedom to travel anywhere, to travel the world, no roads required. And, sailing has that same feel of adventure and freedom. I think, really, my biggest drawback is that I don't like fish. LOL Thankfully, my clusters are short enough that 99% of the time I'd be fine if I got hit underwater. They usually only last a few minutes, and I am generally able to stay composed and in control. I might suck down a bit more oxygen than normal, but otherwise I should be fine. Interesting about the negative pressure thing, I wonder if extra care should be applied when surfacing. I'm now at a point in my life where I have the funds to do things I've always wanted to. I also have a project or two in the works that should help with my future financial situation. I've been a hard worker since about the age of 10 (grew up on a farm in Iowa, was in the US Air Force, now have my own business). Retiring on a yacht in sunny climes.... can't think of a better plan. MG

Hi gang, So, I must say, I was pretty gutted when I found out clusters would cause one to fail the Pilot's Medical Exam. I miss flying, and had always dreamed to one day fly again. With that no longer an option, and thinking about the sea. More specifically, sailing. I've always wanted to learn to sail, and the ocean has always had a powerful pull on me. So, next year, I plan on learning to sail. My dream (hey, if you're gonna dream, dream big I always say) is to one day retire with my own sail boat, sailing in warm waters somewhere in the world. A couple questions are dancing around in my mind. As my clusters are often impacted by climate change, I wonder if this will be more noticeable when I'm at sea, as I imagine changes in climate come faster and are more strongly felt. Also, does anyone scuba dive? Does the change in pressures trigger clusters? I learned to dive in Honduras many years ago, and is another thing I'd like to do again, if I can. Cheers, MG

Good article, thanks for sharing.

Hi Anv, welcome to the family, One of the biggest problems with Clusters, apart from the pain of course, is that so few people know what they are or have a clue for treating them. Even, and often especially, the "professionals". I was on Topiramate for 18 months. I was one of the 'few' that could tolerate it. I'm not sure where your neuro got the concept of 'a lot' from, but I was told 25-50% of the people who try it get on with it. The best thing it did for me was to help me loose weight. I was on it for so long more for the weight loss than helping the clusters. It seemed to work OK for a month or two, then I'd have to up the dose. At 18 months I had well exceeded the maximum effective dose for clusters, and it stopped working altogether. That's when I turned to Mushrooms and RC Seeds. If you're able to cultivate a relationship with your doctors where you are going to them well informed, and say 'this is what I need to combat this condition...' Like with the O2. It should be the standard, first treatment, first words out of a doctors mouth. 'You've got cluster headaches. Here, have some O2'. I really like my GP. I tend to go to her and say 'this is what I want to try next, any advice?' Like when I came off Topiramate to start on mushrooms. I had already started reducing my dosage at a very rapid rate when I saw my GP and told her what I was doing. She advised caution, but knows I will research something to the Nth degree before doing it. Prior to coming off doctor prescribed meds, I was seeing my GP nearly monthly for about 2 years or so, probably longer, and my neurologist ever 6 months. I've gone to my GP for an unrelated reason once since starting shrooms 2 years ago. This stuff works. And I've found RC Seeds very effective, sometimes as much if not more so than mushrooms. So if you can get them easier, I'd say have a go. Anyway, welcome again to the site. Ask if you have questions. hugs MG

Hi, I think it's easy, especially for young people, to put their head in the sand and not talk about the elephant in the room. Sometimes for older people too. My house-mate and best friend frequently worries I think way too much about headaches and pain. She doesn't think my spreadsheet, where I track headaches on a daily basis, is a good thing. She thinks I can spend too much time on sites like this one, thinking and talking too much about headaches. And although I'm aware reading too much about clusters is a trigger for me, I am the sort of person that has to know all there is to be known about something affecting me. But some people aren't like that. I'm sure when he's ready, he'll find his own answers. Hugs MG

From what I've seen other people post, a sign that they are out of their phase is that they can drink again. So I would say, odds are, when he's not in cycle he can drink. But that is 2nd hand information. An alternative might be to bust on mushrooms for his birthday. Now that would be something to celebrate, attacking the beast for a change. LOL MG

Testosterone, a subject near and dear to me. Not sure if you've read my story before, and I shall try not to go into much detail yet again. Basically, I used to be a man, am now a woman. During the 'transition' phase of my journey, I was taking testosterone blockers and very high doses of oestrogen (pretty much the opposite of what you're doing domino). I was about 3 or 4 months into this process when the clusters started. Along with a headache that lasted 7 months. Yep, no exaggeration there. There is a lot of back story I'm leaving out, but basically they believe changing one's hormone system like I did has an impact on the hypothalamus. My neuro believe my hypothalamus was primed for clusters (migraines run in my family) and when I changed my hormones, I triggered it. As we all know, the hypothalamus has a lot of control over clusters too. I'm now running with very low level testosterone, well, compared to 8 years ago that is. I'm not prepared to increase my T level because of other effects it could have on my body. Omega 3 is high in T, and I think that is why it is such a vital ingredient to the Vitamin D3 Regimen. If you take enough Omega 3, you'll notice similar things you are, like a big gain in the sex drive and endurance. How strong are your finger nails? That is another test for how much T is in your system. High Testosterone and you'll have strong nails. Weak, brittle finger nails is a sign of low T. MG

I am one of those few for whom alcohol is not a trigger. In fact, it aborts the really stubborn migraines that triptans won't touch. What if he tries a drink or two this weekend, well before his birthday. A trial run. See if it triggers an attack. I think the important question is this. Does he want to remember his 21st as a fun day (with or without alcohol) or does he want to remember it for that phenomenal cluster attack he got because of the drink he had? I love my Rum, and would be utterly gutted if I had to give it up because of clusters. But I would do so without a second thought if it reduced the number of attacks I got. MG

My clusters hit on both sides. Usually on the right, but sometimes on the left. On the rare occasion, It'll be on both sides, even though the doctors say that doesn't happen. What do they know. MG

Here are some techniques that you might find helpful for a headache or cluster. I've had this sort of massage clear a headache before, but haven't tried it too much on clusters. For one, my clusters have significantly reduced since getting regular massages, so haven't had a chance to test it. You may find many of these pressure points are very sensitive during an attack, so go careful. Pressure Points 1. Place your thumbs on either side of the bridge of your nose at the base where it joins your forehead. 2. Squeeze the bridge of your nose by pushing your thumbs towards each other. Apply firm pressure. Hold for ten seconds release and repeat x5. Keep your thumbs in the same place on but rotate so the pads of your thumbs face up towards your forehead. Press upwards with your thumbs, hold for 10 seconds, release and repeat 5 times Massage the area under your eyebrows. Move your fingers and repeat again 4. Place your three centre fingers on your temples. Apply steady firm pressure and hold it for 10 seconds. Massage this area in a circular motion. Stretch your neck muscles 5. Tilt to your head to one side, lowering your ear towards your shoulder. Hold for 10 seconds. Do the same stretch on the other side. Repeat this neck stretch alternating from side to side with a rest stop in between until the muscles on both sides of your neck feel relaxed. Drop your chin to your chest to stretch the back of your neck. Hold the stretch 10 seconds and then return your neck upright. Repeat this stretch in the opposite direction. Massage the back of your neck and base of your skull 6-8. Use your finger tips to massage up and down your neck. Place the fingertips of both hands on the base of your skull on either side of your neck. Use a circular motion to massage the base of your skull. Move your fingers out towards your ears slowly. Keep a glass of water with you during this massage MG

Hi Joe, I'll give you the standard greeting we give most new people here. Welcome to the site, what CHFater said, and sorry you have to be here. I think that pretty much covers it. I've been chronic since my clusters started in Jan 2007. Some years they were better with almost a clear cycle of 2 weeks of attacks, then 2-3 weeks break. 2011 was hell, I was getting up to 5 a day every 2-3 days. At the end of 2011 I started 'busting' with mushrooms and RC Seeds, and broke that Hellish cycle. I still get attacks, but rarely bad ones, and rarely more than 3 in a day. But I have cluster free gaps often measured in weeks! Also, the post traumatic stress attacks are a thing of the past, as well as about 95% of my migraines. So, does it work? No doubt about it for me. But that doesn't mean to say it is a miracle cure and will make it all go away right away. The cluster demon is a tough beast to kill. MG (also living in England)

Hi gang, Sorry I haven't been on-line for a few weeks. Or longer. On top of a full-time job I'm also doing a massage therapy course, which is chewing up ALL my free time. But, the course will be over in a couple months and my surfing habits will return to normal. As part of the training to become a massage therapist, I am receiving quite a few massages. Some are at our weekend classes, which are every 3 weeks. But my best friend is also doing the course, so we use each other to practice on. So I've been getting about a massage every week or so for the last few months. I've noticed an odd thing. My cluster attacks have taken a pretty substantial nose dive, along with me getting a lot less daily chronic headaches. I haven't really done anything else different in the last 3-4 months. In fact, I haven't taken shrooms in weeks! Prior to this reduction in clusters, I was taking shrooms every couple of weeks, but they weren't making a huge impact on my clusters. I'm not 100% sure my improvement in attacks is down to massage. It may be the shrooms have finally kicked in. Or that my stress levels are so high from non-stop work, massage course, work, that they are staying away. But there has been a noticeable change in how many attacks I'm getting, which corresponds to a period when I'm getting a lot of massages. So, has anyone else tried massage to treat clusters? If you live in or around Suffolk, England, would you like to try? I'll offer free massages to anyone with clusters in my area. MG