MoxieGirl

Hi t2b, Really feel for your pain. It sounds horrific. But I don't think it is sounding like Cluster Headaches. Movement doesn't normally cause more pain during a cluster attack. In fact, most of us can't sit still while suffering, and must walk around, bang our head on the wall, anything but be still. It does sound like nerve generated pain of one sort or another. I have a friend who has a degenerative condition in her spine that only gets worse over time. The docs all give her strong pain killers that just make her zone out for days, but she much prefers a joint once or twice a day. It is SO much more effective than the pain killers. If that works for you, get some, is my advice. I've learned from having cluster headaches that doctors don't know everything, and sometimes we have to find our own solution. That may include finding a doctor who is more open minded too. Good luck. MG

Hi again, I may bring up some things here you already know, forgive me if I'm stating the obvious. I read a paper once that connected asthma with people who have migraines in the family. I have asthma, although not sure it conbributes to the migrains in anyway. Chiropractors can be good for migraines/headaches that are caused by pinched nerves in the spine. Mine aren't caused by that, they are heriditary. But, I have seen chiropractors for other reasons, and it didn't help my migraines. I'm going to see one again soon for some lower/middle back pain, and will be interested to see if it helps my daily chronic headaches. One of the best things I've found for headaches/migraines is massage. I've recently trained as a holistic massage therapist, and was giving/receiving several massages a week. My daily headaches were never at their lowest! Also helped with my clusters. I can't recommend it enough (although don't want to sound like I'm pushing something I sell). It has made a huge difference in my life. I have found, for me, that if I bust during a headache/migraine, it makes it worse. Much worse. I always, and only bust when I'm pain free. When a person gets a migraine, usually the first thing in the body to shut down is the stomach. Anything you eat 15-30 minutes after a migraine starts, isn't digested very well. This is why all migraine pills say to take them as soon as possible at the first sign of a migraine. Otherwise, they are pretty useless - not totally useless, but take longer to work. A lot of people get auto-injectors for migraines just for this reason. It bypasses the stomach and goes straight to the blood stream. For my migraines, I have 2 triptans (Eletriptan and Zolmitriptan). The Eletriptan (Relpax) acts fast but doesn't last long, usually a few hours. The Zolmitriptan (Zomig) takes 20-30 to activate, but lasts a full day or so. I find that when one stops working, I switch to the other. I also use Migraleve, an over the counter migraine pill that contains paracetemal and codein. Between the 3, I can stop about 60% of my migraines within a few hours, or a day. For those migraines that last 2-3 days, and the pills are doing nothing, I take somewhere between 4-9 straight shots of vodka, chased down with coke over the course of a half hour or so. I then go to bed, and feel perfectly fine the next day. If I don't, my migraine will last 5-7 days. MG

I've not tried an energy drink for migraines either. But, with migraines, one of the first things to shut down is the stomach. This is why they say to take migraine pills as early as possible, at the very onset of a migraine. If you wait too long, the stomach stops processes food, and the pill is useless. I believe this is also some how connected with the nausea that is a common symptom of a migraines. They mess with the stomach as much as a cluster plays with the sinuses. iPain, might be worth asking your doctor about an injector for the triptans you take for your migraines. It should work faster, be easier to take and you won't struggle keeping it down. What I find works really well when my migraine won't go away for days, is to shut myself up in my room. I close all the curtains, and either have no lights on, or one dim one in the corner. Also, no noise, if at all possible. I used to live in the country, a lovely Hall built in 1908 with no neighbours for miles. It was so very peaceful and quiet, the perfect place to recover from a migraine. - But I digress - On my laptop, I have a display setting where the wallpaper is black, and everything that is normally white, is set to a light grey. I find playing on the laptop, chatting with friends, or watching a film with the volume low gives me something to focus on and I can ignore the migraine, to a degree. It also means I don't have to move around, or turn my head or eyes, which is very painful. I can often reach a point where I almost forget I have a migraine, until I get up for a drink or something and have to leave my room. MG

What sucks most is when sex triggers an attack! Doesn't happen often, but is annoying when it does.

Hi iPain (great nickname btw) Yes, what Bejeeber says is true. Migraines run in my family and I've had them all my life. An average migraine for me can last 5-7 days if the triptans I have don't work, and they are a 50/50. The year before I busted I had 42 migraines. The year before that, 63. The year I started busting, I had 3 and six the following year. I've already had a handful this year, Jan and Feb are my worst months for headaches, migraines and clusters, and I haven't been busting regularly the last 6 months. Need to step it up again. Also, when I do get a migraine, a really bad one might last 3 days instead of the 5 or so. Granted, if it goes on that long I usually drown it with 5 to 6 shots of vodka. I've found that works better than triptans and doesn't conflict with busting. MG

... They improve it. Has anyone seen this article yet? It is VERY good. http://www.collective-evolution.com/2014/01/14/psychedelics-dont-harm-mental-health-they-improve-it/ MG

Not sure what they used to numb the area. But had the tooth removed Friday morning, this is now Tuesday evening. So doubt it is that.

I had a tooth removed on Friday. Just had (well, actually still experiencing) my first attack since the removal of the bad tooth. I'm coming up on 90 minutes, and still in quite intense, cluster like, pain. One side of my head like a cluster, in and around the eye, you know the drill. The intensity isn't quite unbearable. Worse than a migraine, but not bang head on wall pain. What makes this unusual, is that for the last 2 years or so I've rarely had a cluster last 45 minutes. Most are 5-15 minutes. Really hoping this is a sign of the beast changing the game. MG

Wonderful information! Thanks Jeff

I went to the gym today with my best friend. I had had a minor cluster not long before we were due to leave, which left me with a lingering headache. But, we went anyway. And you know, it was one of my best work outs in AGES! The head didn't hurt while I was working out, which was fantastic. And working out with a buddy helped a lot as we encouraged each other. We are both seriously stoked now! MG

Thanks Alleyoop and Jeff, that makes A LOT more sense now. hehe From what I've read, "0" is smaller than "00". yes? My house mate was wondering if all the psilo gets digested when swallowed, or if some of the shroom gets worked out of the body with waste. So is swallowing the whole shroom more or less effective than drinking the liquid, which apparently digests easier?

That's fantastic to hear. I thought it might work that way. OK, so let's just get a few details worked out. If my normal dose is 1.2g soaked in tea, then would I also need to take 1.2g ground into capsules? If so, and there is .072 in a capsule, that around 16 capsules. Ug. MG

Hi gang, I'm thinking of replacing my mushroom tea and start using capsules instead. I'm looking at this device: http://www.amazon.co.uk/Capsule-Connection-CAPSULE-FILLER-MACHINE/dp/B00CZOCJJE/ref=sr_1_1?ie=UTF8&qid=1389602152&sr=8-1&keywords=capsule+filler Which I assume is the sort of thing most people use. How do you get the amount right? I'm guessing weigh the amount you want to take, say 1.2g, crush it then divide out amongst x number of capsules? Can you make up a bunch of capsules at once, then freeze them? I guess the moisture might dissolve them though. I presume you make them as you take them. Is the dose stronger than what you would get from the same amount of shrooms in tea? MG

Shya and your Sweetheart, Big hugs. I wish I could offer more, but it looks like you've gotten a lot of good advice already. I take Relpax and Zomig for my migraines occasionally, and always wait the 5 days before I bust. It can mess up my busting cycle, but if you don't, the bust is a waste of shrooms. Some people get by with a 4 day gap, but most say 5 to be sure the triptans are out of one's system. Is your Sweetheart chronic or episodic? Episodics tend to quicker results from what I've read. Wishing you both success. MG

I've just signed up for a gym membership, today will be my first day to go and work out. I'm quite nervous about this, not because of my clusters, but because I have so many daily chronic headaches and migraines (and clusters) the last 3 times I've joined a gym I had to cancel my membership because the frequent headaches prevented me from going often enough. But, my headaches are largely under control now, so fingers crossed. I find working out at a gym is much better for me. I have some equipment at home, but it's easy to get bored and quit after 15 minutes. When I go to the gym, I have gone there for that purpose, set aside the time and am working out around other people working out. Peer pressure works a treat. Gyms are the best way for me to slim. But, physical activity can trigger a headache, so I have to be careful. What if you bought one of the homemade business card kits, and printed up some business cards that say something like, "I'm OK! I'm having a rare, rapid onset headache called a cluster headache. Although very painful, there is nothing you can do apart from maybe re-fill my water bottle with cold water. That would be very appreciated actually. It will pass in a few minutes." Laminate the cards and put one in your gym bag or pocket when you go to work out. The comment about the water bottle has 2 purposes. One, I find I cannot guzzle enough cold water after an attack, and two, it gets them out of your face for a few moments. Or..... tattoo the message on your arm. LOL Maybe not. MG

Hi, Here's how I make mushroom tea: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1371238865 I usually use 1.2 grams of very dried and chopped up mushrooms, but have gone as low as .6 gram. But, I'm not sure .6 is all that effective. My first ever dose was around 1 gram, and the trip wasn't bad at all. There is some debate about eating before or after busting, and personally I've found it doesn't really make much difference. If you don't eat, you'll be hungry and it seems to me the trip hits faster. But probably more personal preference than anything. Hope it goes well, MG

Brooks? Nope.

Nah, CHS, it was a Karen on a CH Facebook page.

A discussion came up on another board I'm, and the poster was wondering if many CH'ers have additional incurable illnesses. She is wondering if there is a trend here. The list of incurable illnesses hasn't been defined. For example, I would answer No, but I do have mild asthma. So does that count? I can't see that being a contributing factor as I've had it all my life and clusters only 7 years. I am thinking she means more along the lines of fybromyalgia, MS or Ehlers Danlos, for example. I said I'd ask around and see if many people I know do. MG

Hi, Looks like you are getting a lot of fantastic advice from the wonderful people here. I wanted to clear one thing up. I've seen the term 'cluster migraines' used off and on by different people on different boards. I think there is a misunderstanding, or miss-diagnosis or wrong terminology out there amongst some doctors who think Clusters are a form of Migraine. They aren't. In fact, far from it in my opinion. I think it's also safe to say that most cluster heads hate the medical term 'Cluster Headaches' (which is the correct term). In my opinion, the word 'headaches' and/or 'migraines' diminishes what they actually are. I much prefer 'Cluster Attacks'. But, let's not get side tracked on what we should or shouldn't call them, as there are already a number of threads on that topic. What confuses me is that you mentioned you got 2-5 "migraines" a day the last time you tried to come off Verapamil. Now, was that migraines or cluster attacks? On the topic of being Chronic, I've been chronic 7 years, ever since the beast started attacking me. At my worst point I was getting up to 5 attacks a day, every 2-3 days. That's when I started busting. Since busting, I've had pain free periods stretching to 23 days, which is AMAZING! But, I'm still technically chronic after 2 years of busting off and on. And I think that has been my downfall, off and on. Because of a number of factors, I haven't been able to bust weekly, or even monthly, for more than a few months at a time. Life is 1000 times better than it was 2 years ago, but I'm not pain free (yet). On the plus side, my migraines (migraines, not clusters) have dropped from 40+ a year to less than 10. Busting has saved my life, but like others have said, don't bank on it being a miracle cure. This beast is a tough one to kill. Hang in there. MG

Hi jkandola, I shall give you the standard Cluster Busters greeting - welcome to the board, and sorry you are here. When I came to this site for help I needed about 6 weeks to wean myself off of the Topiramate I was taking before I could bust. I spent that time pouring over the posts in the ClusterBuster Files section. The pinned posts at the top mostly. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files There is a wealth of information in there. In addition, we are always happy to answer questions and help when we can. So ask if you have questions. I had never used mushrooms before busting and was really nervous. I started with a 1.2 gram dose of dried chopped mushrooms, soaked in peppermint tea for 10-15 minutes. This gives the tea time enough to cool so you can drink it right down and the psilocybin time to be absorbed. I also add a bit of lemon and honey to my tea. The lemon helps the Psilo break down and the honey helps with the taste. Personally, I have found a difference with different strains of shrooms. Not in regards of effectiveness, but in allergic reaction. Some strains make me itch like crazy for about 20 minutes. But other than that, the strain doesn't seem to matter much. I'd also suggest you find out all you can on using O2. This is generally accepted as the first option when it comes to aborting an attack, and if set up right can be very effective. Also, have a cold energy drink on hand, such as Red Bull, and or coffee. This also helps a lot of people abort. Good luck, MG

Agreed Ajax, the smell is revolting. I used to didn't mind the smell of frying mushrooms (normal mushrooms) and sometimes will fry some for my housemate or put them things I am cooking. Recently though, when my house mate fries up a bunch of mushrooms to go with her bacon and egg, the smell makes me want to techni-color vomit. But even that smell doesn't compare to the shrooms I fix. I think I may have to go with the cap route, or at least give it a try. Do you get shroom burps? MG

Interesting. Looking at the Gamma Core website (http://www.electrocoremedical.com), it looks like a basic TENS Unit that activates the nerve using mild electricity. I have a TENS Unit, and am tempted to try this myself for my migraines. MG

Hi, A comment from Spiny gave me this idea, and I hope others like it. Could this forum do with either a dedicated thread, or perhaps even a dedicated Board Page for supporters? It seems there are MANY supporters on this board, and they all have the same (or similar) issues. I think it would be great if we had a place (even a dedicated thread or two) with answers and help for supporters. I imagine though, that once we get the subject started, there will be a lot of posts and helpful information. Thoughts? MG

Do we need a scale, similar to the KIP scale for tripping? LOL I've never hallucinated with my eyes open, even when I took a whooping (for me) 2.4 gram dose. Eyes closed and I get pretty patterns, sure. But never anything with my eyes open. Last night took a low .6 gram dose and felt mildly giddy and the colour green stood out a little more than normal. But nothing I'd really call a 'trip'. More like a 'walk around the block'. Oh, just thought of this. How about these words to better define tripping. Walk - mild trip, no hallucinating, equal to one or two drinks. Trip - moderate trip, pretty colours with eyes closed, feel almost drunk Vacation - intense trip, quite drunk Adventure - full blown trip, hallucinating, the works. No, not being too serious at all, more a giggle. MG