MoxieGirl

So, I'm sitting here, watching a film, chillaxing as an American friend of mine might say. Then there is an almightly WHAM in the side of my head, like someone has just struck my temple hard with an ice pick. Then, it feels like someone is hammering a pair of needle nose pliers into the hole, and they begin squeezing the life out of my optic nerve for ten minutes. I've had 2 of these attacks so far tonight. I don't normally get them through the night, well, not normally. I tend to get hit evenings and weekends. Thankfully, I also don't usually get bad ones at work. As I'm a stand-up teacher of software, this is a really good thing. HA! A good thing. Does such a concept exist when it comes to clusters? If I could devise the most evil torture I could imagine, I could not imagine anything as evil as cluster attacks. And that is saying something, considering my experience with pain and torture. Clusters seem to trump everything else in the world. Am going to sleep now. And going to pray for a peaceful, full night's sleep for a change. Shame I don't believe in praryer.

I used to be a man. No, that's not right. I once resided in a man's body, I've always been a woman. There is a difference. All my life I hated my body, so I fixed it. I resolved the issue that drove me to the brink of suicide for 40 years. During my transition, I had a wonderful girlfriend (now my best friend). We split up, but not related to anything I was going through, long story. Anyway, I largely fully expected to find love again, and now that I was happy with my body, never expected other people wouldn't likewise be happy to be with me. I couldn't be more wrong. Getting a date as a post-op-transsexual is like getting a date as a leper. No one wants to know. Sure, many, many people are happy to be my friends, but try and turn it into a romantic relationship, and NO WAY! In fact, many people I tell can't run fast enough. I know most of them have no idea who _I_ am. Have no idea that I pass perfectly as a woman, but they just don't want to know. Most of them are operating on the preconception of what a transsexual, or much more likely, a transvestite or drag queen, is. I hate it, absolutely hate it, when people say; 'oh well, you didn't want to date someone shallow like that anyway. The right person will come along.' That is the worst thing to say. And no, I don't want to date a shallow person, but I also don't want to have to sort through 1000's of shallow people in hopes of finding the perfect, accepting, loving partner. Each person that turns away from me because of my gender breaks my heart. Every single one was a chance for love, but is a knife in the back. Love and Other Drugs is a lovely movie regarding this topic. Well worth a watch. xx Renee I've not yet lost a relationship because of CH. This is because only one person in 5 years has gotten past my gender. Sorry for going on, but I feel your pain (in more ways than one). It sucks. It sucks big time. It is wrong, and I hate it (both my situation and yours). Yes, they may be shallow or short sited for not getting to know you, but that doesn't make it hurt less. You don't get your hopes up any less for someone because they might be a shallow twit. You meet someone, and are open and honest, and just hope they won't crush your heart.

Hi bounty, welcome to the group. I wish, like the rest of us, you didn't have to be here. If you know what I mean. I live in England, so can't help with where to get them in the States. I was/am chronic, and used to get hit every 2-3 days, up to 5 times a day for over a year. But like you, I felt mine were quite tame compared to most of the wonderful, but unfortunate people here. My clusters tend to be 5-30 minutes, and seldom disrupt my sleep. So I already consider myself lucky. I busted both with shrooms and seeds. Started with seeds because they were easy to get. Then, a few months ago, I grew my first crop of shrooms, and have 1 dose left from it, which I'm taking tonight. It was a small crop, being my first one, but I've been able to dose weekly now for 5 weeks. The last 3 weeks I've been 100% cluster free. 21 days without a hit! That, I think, is about the longest I've gone for 2 years. I found seeds worked well too, and I started having cluster free days into the double digits after busting with seeds (started back in Dec). For me though, I think I like the shrooms better. But it is well worth trying them both, if possible, as each person is different and many find the seeds work really well. Again, welcome to the community. Renée

Thanks Ricardo, good to know.

Well, not completely accurate. I am significantly migraine free (2 this year, down from 40 something last year), and recently having more cluster free days than ever. But headaches, still 4-5 days a week, sometimes twice a day. BUT! My headaches don't turn into migraines like they used to if untreated. Also, they tend to last hours instead of days. So, am much better, and able to function and not miss work. But PF, no, don't think I'll ever be completely PF for more than a few days.

I know I'm probably jumping the gun here a little bit, but it has been nearly 3 weeks since my last cluster. That is the longest I have been cluster free for 2 years! Quite possibly longer. I've busted with shrooms 4 times now, a week apart. One more bust left in this batch. I'm hoping for even longer CH periods.

Ah, interesting, I hadn't thought about the triptan affecting the bust AFTER the bust. I thought it was strictly a pre-bust event. But, my question is more about will the bust affect the triptan? If I have a REALLY bad migraine a couple days after a bust, will taking a triptan be pointless?

Hi gang, So, if one takes a triptan, or a list of other meds, that will shut the door on busting, and make it not work. But does this work in reverse? If I bust, does that shut the door and stop migraine medication (triptans) from working? Apart from clusters I have a lot (well, used to be A LOT before busting) migraines. And I'm just wondering if a recent bust will make my migraine medication useless for 5 days. Thanks, Renee

Usually talking to your doctor is the best advice, if you are prepared to tell your doc you are ditching all their meds. LOL When I was on Topiramate, I increased it 25mg a week, which probably made sense to come off of it at the same rate. But, I was in a hurry to get off it and start busting. So I dropped 25mg every 3 days for 2 months. It was Hell, and I wouldn't recommend pushing something that hard, but long term I'm glad I got free of it. I'd suggest, maybe, starting slow, and increasing the rate over time and see how it affects you.

Hey dd, In reference to having a bleak outlook. This time last year I was on a higher dose of topiramate than is considered effective for clusters. I had been on it for 18 months, gradually increasing the dose ever few months as it stopped working. And this was after a few years of trying everything the doctors could think to give me, and having unbearable side affects with it all. Topiramate was one of the very few things I could tolerate. Which is ironic, as the majority of people can't. Anyway, this time last year I was at the end of my rope. I had mentally put a date in my calendar to end my life, and was just about to actually write it into my calendar. The date was Novemeber of this year, for I told myself I would have 1 year to find a solution, because I knew I couldn't make it on my own in the condition I was in beyond that. I knew about busting, and the use of LSD and Magic Mushrooms, but I always, always! considered it a last resort. I realised that planning a date to end my life was a pretty good sign it was last resort time. So I joined this forum, and started reading. And reading. And reading. Then asking questions. Then ordering seeds. Then growing mushrooms (over a course of months of course). I now have NO DESIRE to die, what-so-ever. I have found hope. I have found a solution that is working for me. And is amazing, with no side affects. It is 100, 1000 times better than ANYTHING any doctor ever gave me. I remember people telling me many months ago, long before I could imagine it possible, that I would one day be singing the praises of busting. And I predict you will be too. All my heart and hopes go out to you. Renée

I would like to echo CHF's comments, as I forgot to mention it in my previous post. One of the things I LOVE about busting, either with seeds or mushrooms, is the complete and total lack of long lasting negative side affects. Topiramate, now that too me 3 months to get through the bulk of the side affects, and it was messing me up all day long. Amatriptaline, left me groggy and not quite connected to the world all day too. But busting! Had a minor trip for 4-5 hours, slept REALLY deeply, then perfectly fine. The only 'side affect' I experienced was that I was no longer plaqued by post-tramatic stress after the attacks. And I had a more positive outlook on life. Also, from what I understand, psilo doesn't show up on normal drug test screenings, and is completely out of the system in 3 days. Not sure about LSA, but guessing similar. Renée

Hi again diver, I am assuming you are going to start with RC Seeds? As they are usually easier and quicker to get than shrooms. There is a lot of good information on the site, of course. I recently posted the recipe I use with seeds, which can be found here. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1341183861/6#6 Let us know how you get on, and if you have any questions. And good luck.

Hi dd, and welcome to the group. Migraines and headaches run in my family. I've had headaches all my life, and as a teen, if I missed breakfast would have a migraine in the afternoon. They got really bad when I was 25 and going through a divorce. I had migraines last entire months, minus maybe 1 or 2 days. In 2006 I was on an intense HRT program (another long story), and on Dec 31, 2006, I got a headache. It lasted 7 months until mid July, when it started to break apart and wasn't every day. This headache was punctuated with FREQUENT migraines, ice pick headaches, and a new thing called Cluster Headaches. 2007 was my year of Hell. I too tried all the drugs doctors could give. At the moment, I carry with me: Zomig (zomiltriptan), Relpax (Eletriptan) and Migraleave - an over the counter paracetamol and codeine table we can get in the UK. I found that if I took Zomig for awhile, it would stop working and I'd have to switch to another triptan for 9 months or a year. But then Zomig would start working again. So now I pretty regularly cycle my triptans. Maybe this is what you need to do with Botox? I don't get sick with my migraines, or have aura. Just pure, unadulterated pain for 5-7 days, if the triptans don't work. Like you, I was sick and tired of missing work, of having a boss give me that look 'oh, ANOTHER migraine', and cancelling social engagements left right and centre. I have always told all my friends that I would never use a headache as an excuse to not attend something. I don't think that's fair, as I have (had) so many. All that was before busting with RC Seeds and Mushrooms. In 2010, I had 63 migraines lasting 2-7 days each. In 2011, that dropped to 42. But this year, 2012, I've had 2. Yes, 2! I started busting off and on in December, and it has significantly helped my clusters AND migraines. I still have headaches 4 or 5 days out of 7, but I can deal with that. A bad migraine, and my world would come to a scretching halt. I was once told by a member of this group that she was preparing mushrooms for her husband, and just handling them stopped her migraines for 3 months. Or something along those lines. So, will they help you? No idea. We are each different. But they've saved my life. Please read all the information on this site you can before taking them though. There are precautions regarding mental conditions and shutting the door issues to take into consideration. I hope things get better for you. xx Renée

Hate it when that happens. Like having your purse stolen. Hugs.

I don't have a firm medical answer, or even an answer from experience. But, I can't see how sleeping or not sleeping would impact a drug you've put into your body. I can't see sleep altering how psilo works. Now, add alcohol, and you might have a change, at least in the trip. Add another triptan, and you'll reduce it. But sleep??? I would think you are more likely to notice a difference from different strains of shrooms than from sleeping.

Hi Raoul, and welcome. Migraines run in my family, and I too have had them since a very young age. My main trigger, for most of my life, has been getting too hungry. If I ever missed a meal, I would be sure to get a migraine later in the day. They started getting bad when I was 25, and were very stress related (another of my triggers). I was going through a divorce then, and life was not good. I had migraines, constant pain we are talking, that lasted weeks. One month I had only 2 pain free days the entire month. They got better after the divorce and when returned to normal. Everything started up very bad again about 6 years ago, when the clusters also started. I had a headache for 7 months, punctuated with migraines and clusters. I was having clusters that lasted 2-7 days, and getting 2-4 a month that year. I don't have migraine with aura, so they may be different from yours. Like you, I am VERY sound and light sensitive, and movement of any kind, especially the eyes, is absolute agony. I don't EVER get sick from headaches, migraines or clusters. Yes, migraines (in my opinion) are very different from clusters, like a cold is different from the flu. In 2010 I started keeping a detailed record of all my various headaches, and that year I had 63 migraines. In 2011 I had 42. I started busting with LSA and Psilocybin last November. This year I have had 2 migraines, both lasting only a day or so, and treated with normal migraine painkillers. Yes, I still get a lot of headaches, and some are quite bad. But proper shut me down, send me to bed migraines, only 2 in the last 8 months! For me, that is absolutely AMAZING!! And I believe completely down to busting. Renée

OH, there is one difference I've noticed between RC Seeds and Shrooms. Every time, without fail, I've taken seeds, I've woken in the middle of the night painfully constipated. Doesn't happened with Shrooms. 2 Weeks ago I took 1.4 grams of dried shrooms, and had bad slapbacks for a week. Last week I took 1.6 grams, and haven't had a single cluster since. Tonight I'm increasing the dose to about 1.8 grams. Of course, it might not be dosage related at all. Renée

Hi Joshua, Yes, that sounds like a good plan. Not something to rush into. Coming off meds can really through your body into a spin. I'm the type of person who goes to my doctor and says 'this is what I'm doing, you OK with that?' I was 1/3 of the way off my Topiramate when I told my GP I was dumping them for an illegal substance. LOL But it was a rough couple of months, seriously depressed with some very dark thoughts. If I hadn't kept reminding myself it was all because of reducing the meds, and hadn't been so very experienced with depression, not sure I would have made it to be honest. I am SO much happier now on seeds and shrooms. And I agree, I think seeds are a good, and easy way to test the waters, and shrooms are a nice long-term project. Hang in there. Renee

That's a TENS unit. They seem to be different from this new toy they are describing. I know quite a bit about TENS units, and Violet Wands, neither will do what they are describing. TENS units reach to the muscle, Violet Wands run along the surface of the skin. They are talking about hitting the nerves in the neck.

http://zeenews.india.com/news/health/health-news/now-a-new-device-to-provide-relief-from-painful-headaches_18408.html Hard to believe if you ask me.

Oh, wow, yes, I hear you both. Migraines run in my family, and as a teenager if I missed breakfast I would get a migraine in the afternoon. So meals, and not getting too hungry, have always been important to me. Ironically, I had surgery a few years ago for an unrelated issue, and 'hunger' as a trigger stopped being a trigger. Light, yes I'm also hyper sensitive to light. One day, when I build my dream house I'm going to have no direct light anywhere in the house. All the lights will be reflective - off the ceiling or walls. I want it to be impossible to accidently look into a light.

Hi Joshua, I was Chronic, getting 1-5 hits every 2-3 days for over a year. I reached a point where I was putting a date in my calendar to end it all. I had tried, not everything, but nearly everything, and was on a very high dose of Topiramate at the time (This was last Oct/November). I had told myself a couple years ago that busting would be a last resort, and I realised then I had reached that point. It took me nearly two months of hell to get myself off of Topiramate, for I was dropping a dose every 3 days, and the depression and side effects were rough. During this time I bought a bunch of seeds, and a friend sent me 2 doses worth of mushrooms. I was off the topiramate for a week when I started busting. A week apart I did 1 dose of mushrooms, 2 seeds, 1 mushroom then another 5 doses of seeds. I started having pain free gaps of 20 days and more, and when I did get hit, they were much more mild and shorter. When I went on Topiramate, it took me 3 months before the side affects settled down to where I could pretty much function as normal. Busting, zero side affects and the post-tramatic stress attacks I sffered after a cluster, gone. Completely gone. Before busting, I would curl up in a ball and cry for 20 minutes after nearly every attack. I've done that maybe 3 or 4 times in the last year. I haven't quite settled down into an episodic routine, I still get hit quite often. So I've taken to growing mushrooms, and have now taken 2 doses of my own crop. Which is better? I'm sure it will vary person to person, like all drugs have different effects on different people. Seeds worked to an extent for me. Although I found them a pain to prepare. Sorting good and bad seeds, crushing, soaking for 2 hours. Yes, easy to get, but harder to prepare. Mushrooms, I just chop up and brew into pepperment tea for 10-20 minutes. Strain and drink. Neither had ever made me sick, just a little sleepy and the colour green is VERY distict for a few hours. But apart from all of that, I love the fact that I am growing my own medicine. I am taking my condition and its treatment into my own hands. From production, to medication, I am in charge. After years of taking whatever the doctor gave me, this is massively enpowering. I hope that helps a little.

I read a study once that said migraine sufferers are more sensitive than most other people. More sensitive to heat and cold, weather changes, emotions, etc. Pretty much in all aspects. The study was saying that our nervous system is just more sensitive to outside and internal influences, and that sensitivity often triggers migraines. I've found, as I've become a cluster sufferer, my normal high level of sensitivity to things has increased many times over. Smells, tastes, temperatures, changes in weather, strong emotions, all those things can set off a migraine or cluster attack. It is quite warm right now in England. 28-30 degrees C, or around 80-82 degrees F. Most English people are loving it. Complaining, for they wouldn't be English if they didn't complain, but also loving it. I am dying. The heat translates almost directly into stress for me. I can feel it pressing against me, smothering me. More so than I believe other people feel it, and much more so than I used to. I'm also ultra sensitive to cold. Ice, or even a cold drink, pressed against my skin is enough to trigger a migraine or cluster. So, I was just curious if you are more sensitive to 'things' during your cluster cycle, or since you started having clusters. Renee

Slapbacks! That's it. I knew kick backs wasn't right, but my brain wasn't working enough to figure it out. LOL I'm working from home this week. Which is grand as I travel A LOT with my job, and is nice to sleep in my own bed for a change. Although, I tend to get more clusters at home on a normal basis, let alone after busting. I lost 90 minutes of work this morning because of a cluster, and the recovery time afterwards. I haven't had them this bad before. I'm planning to bust 5 times, and hoping it all gets better as I go.

Hiya I've busted quite a bit with seeds, and have just recently switched to shrooms. I did 12 RC busts all together, my smallest dose being 30 seeds, and largest was 58. Most doses were between 46 - 50 seeds. By enlarge, the trip effect for me was the same from 30 seeds to 58, with my first time ever being the worst because I felt a little sick for an hour. Probably worth saying that I was chronic for over a year before busting, with up to 5 attacks every 2-3 days. Since busting, I've had PF gaps of 20 days and more. Something I hadn't experienced for some 18 months before busting. Oh, just remembered. There was one experience I had with seeds that I didn't enjoy. I had let the seeds soak for 12 hours. Some people find this helps them a lot, again, made me feel really ill. The routine I settled into is: 1. pour all my seeds into a shot glass with water. 2. with tweezers, remove and discard all the seeds that float to the surface. 3. From the remaining seeds that sink, count out how many you want to take. 4. Crush 5. Put in a shot glass with fresh water and a little lemon juice. 6. Let soak for 2 hours. 7. Strain through a tea filter into a fresh shot glass, and squeeze all the juice out of the sludge you can. 8. Down solution in one and chase with a glass of fresh water. I don't eat 2 hours before busting, and wait 90 minutes after I bust to eat or drink anything. I also usually put a film on to watch after I bust. Usually a comedy or romance. Something I don't mind sleeping through, as the seeds will make me tired for a bit. Renée