valerie Posted September 10, 2010 Share Posted September 10, 2010 Hello everyone, my name is Val, and I suffer from 27 years of CH. First of all sorry for my bad english I'm writing you from Italy! Like many of you, have tried everything out there, to try to have a normal life, and have been visited by neurologists in three different continents .... but no one has ever given me hope for a cure. In averaged I have 1 / 2 day crisis a day, and when I get K9/10 I take Imigran 6mg (every nights) and some time for a period (4 months) I take Verapamil, which makes me feel really bad ... like a zombie! When I learned about Cluster Buster and the research, it was like to see a divine light in the darkness of hell .... I studied all the articles and all conversations on the blog, and I decided to try ... I'm living in Italy, and it's not easy to find the raw material, then finally I found through a friend in Amstrdam the magic TRUFFLESS ( www.magictruffles.com/) they told me that the substance (psilocybin) is the same. I took 3 times the dose every 5 days, but unfortunately nothing happened .... NOTHING AT ALL (only the fun part, but that was not the purpose) They assured me that truffles contain psilocibina like mushrooms, but my cycle of CH is always present, the only difference is that, it dosen't comes any more at 3:20 AM but at any time during day or night.... :'( I am desperate because I'm afraid of not being one of the "miracle" of this site ... Do you know if the truffles works? Do know if I have to take higher doses? Do you think that mushrooms can be different from truffles? Please, if any body know any things about it please write me asp.... Thank you for your attention and your help... Val Quote Link to comment Share on other sites More sharing options...
MJ Posted September 11, 2010 Share Posted September 11, 2010 HI I am no expert on psilocybin vs psilocin. I hope BobW or those with greater understanding will see this soon. From my readings on the subject the truffles (sclerotia)create more, though less stable, less soluble psilocin which may be absorbed differently in the body. Psilocin is reportedly stronger than psilocybin. The fruits or mushrooms have more psilocybin a more stable compound easily absorbed and then converted into psilocin in the body. This is one of those seems it should work deals but some technicalities in the chemical conversion could exist for clusters. I dont know but I too would like to know if any difference exists. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 11, 2010 Share Posted September 11, 2010 Hi Valerie, Sorry you're experiencing this hell. A few things occur to me: 1) You might want to try lower dose injections of imitrex - they still work! Here are the details: http://www.clusterheadaches.com/imitrex.html 2) Imitrex and other meds are believed to block the effects of psilocybin. Is there any chance you could get oxygen and administer it as outlined in the link below for aborting your attacks, allowing you to detox from the meds, so the psilocybin will have a chance to work for you? http://www.clusterheadaches.com/O2/index.html 3) I've never heard about the truffles. It sure would be nice if you could get some actual mushrooms. 4) You're english is good. Way better than my Italian, which consists of a few words such as "pizza", "spaghetti" and "lasagna". :-[ Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 11, 2010 Share Posted September 11, 2010 I took Verapamil also and could hardly get out of bed after a couple of years. The mushrooms didn't work for me when I tried a few years ago and I am sure it was because of all of the meds I was on. In April this year I detoxed COMEPLETLY from all meds and the shrooms worked very well after about the third dose. I am pain free after 7 years chronic. Dosing now every month or so. Oxygen quickly aborts attacks after beginning to dose. Using the right mask is a must! Good Luck!!! ;D Quote Link to comment Share on other sites More sharing options...
alleyoop Posted September 11, 2010 Share Posted September 11, 2010 Hi Val, First of all, "Welcome!" Sorry you had to find us, but glad you did. I tried to go back into the old Clusterbusters archives, but was unsuccessful. Apparently, the Yahoo search engine is temporarily down. So all I can do is try to rely on my memory, which is quite bad. Someone will be along shortly that has had experience with busting with truffles. I do remember that several tried the truffles back about 5 years ago. If I remember right, there were mixed results. But that is not unusual. As has been said many times, we are all different, and what works for one person, may not work for the next. Some seem to have more luck busting with LSD, others psilocybin, and others with LSA (seeds). So, if truffles are the only ammunition you have, then by all means, use them. And please report whether on not you have success. As Bejeeber and Hipshot said, you should try to procure high flow oxygen with a non-rebreather mask. Then taper off of the verapamil and leave the Imigran alone. You need to be med free for five days before busting. I would say that is probably why you had such poor results from your first three busts. All the best, Bob Quote Link to comment Share on other sites More sharing options...
valerie Posted September 12, 2010 Author Share Posted September 12, 2010 MJ, BEJEEBER, HIPSHOT, ALLEYOOP first of all thanks for the answers! I did not think that Imigran and verapamil could reverse the effect of psilocybin .... I now understand why it did not work .... I started at the psillocibina a week after the crisis began, and then I came to truffles I was already intoxicated by Verapamil and 10 injections of Imigran... at least .... I suppose I should detox, as ALLEYOOP suggested, of course, the idea of spending five days without injections terrifies me as you can imagine .... Oxygen does not make me overcome the crisis .... oxygen does not help me much .... I must find the courage to do it, because five days of torture are nothing compared to a lifetime of torture (with 2 months of vacation a year )...!!! Have you heard somethings about Dr. TORSEN PASSIE ?...... Get answers from you, make me really happy .... talk to people who live your own same experience makes you feel less alone, so thank you again for giving me your precious feedbacks Val Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 12, 2010 Share Posted September 12, 2010 Hi Val, About the oxygen - it doesn't work for a lot of us until administered in the newer, much more effective manner. I know that after the first week of an episode when the intensity of my hits are just starting to ramp up, O2 at 8 to 10 LPM as commonly prescribed by idiots neurologists does NOTHING for me. BUT, since I have adopted the high liter flow / non rebreather mask approach that idiots doctors are universally unaware of, O2 suddenly becomes an effective abortive (for me this requires a really large reservoir bag and hyperventilating at a whopping 45 LPM!). Many many many others are finding similar results. Since you are in such a precarious position with these severe CH attacks, if you can afford it, I'm thinking you might benefit from a demand valve system, which could both simplify and optimize your high flow O2 use. If you've already tried this high flow O2 and still aren't getting 100% results, then drinking an energy drink with a lot of caffeine and taurine right at the onset of the attack is reputed to "help the O2 work better/longer". Also, there's an O2 guru over at CH.com by the name of Batch who is making the case for optimizing your PH in order to allow the O2 to work most effectively. This seems very easy and harmless, and very much worth a try to me. Here's a quote from one of Batch's posts at the CH.com forum where he details the recipe: "....when I go into a high cycle, I take 3 to 4 calcium citrate tablets with vitamin D, magnesium and zinc washed down with fresh homemade lemonade. This regimen acts as a buffer on the gastric juices in the stomach with the ultimate result, an elevation in arterial pH as measured with pH test strips that show my saliva pH has risen... This regimen also breaks my high cycles in 12 to 24 hours... Hope this helps." He considers an elevated arterial pH to really help the O2 do it's thing. Here's the link to the full thread this came from where he supplies charts (you'll find his post with his characteristic giant font at the bottom of the thread): http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1276030335/3 Quote Link to comment Share on other sites More sharing options...
MattyAA Posted September 13, 2010 Share Posted September 13, 2010 It will be hard but as bejeeber said try PH regiment and then use non-rebreather mask with O2 at 20lpm or even higher. You will need to detox from imigran and all other stuff preferably to bust succesfuly or the other meds may I repeat _may_ block (since we all are different) busting. And keep trying until it works, I know it sounds harsh but there was so many people who didnt get any relieft after 1-2 times but they did found it working after 1 month of dosing every 5-7 days, it is rule #1 you must wait 5-7 days since receptors in our brain close up after taing psychadelics and open once again after period of time of 5-7 days depending on human. Wishing you well and do keep asking us questions if something is not clear for you. - Matthew from Poland Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 16, 2010 Share Posted September 16, 2010 Hi Valerie, I have heard of Dr Passie. I think he and Dr Halpern work together. Dr Halpern is associated with Harvard U and they have the patent on BOL. That is my drug treatment of choice once it ls legal in the US. Hope you're doing OK. Dan Quote Link to comment Share on other sites More sharing options...
BigDose Posted September 16, 2010 Share Posted September 16, 2010 A truffle story…….. I’m an ECH sufferer of 22 yrs. From 2003 through 2008 the cycle was 8-10 weeks on and 13 months off. That changed at the end of 2008 to 6-7 months on and 5-6 months off. Preventatives have never worked for me and O2 seemed to make the attacks worse. My only line of defense was 1/3rd (2mg) shots of Imitrex to abort an attack. April 2010 was a bad month and, being out of Trex, I was hospitalized for 4 days to receive 8 doses of DHE via IV. During those 4 days I was pain free. However, 24 hrs after my release the attacks returned. I checked my pharm and to my surprise, I harvested a jar full of truffles ranging in size from peanuts to golf balls. I started using these “fresh” stones as an abortive by consuming approx. 2-6g, chewing to a pulp and holding under the tongue for 10 to 20 minutes. The more times I did this, the faster it aborted the attack. By the end of 10 – 14 days, the attacks were gone. A few notes, disclaimers, etc. 1) As you might deduce from my sign on (BigDose), I am fairly resistant to the effects of shrooms, LSD, and truffles. While most folks use anywhere from 1.5-3g of dry shrooms, I will use 10-15g. 2) I tend to use Trex (when I have it) along with the alt-meds. For me, I don’t feel that the Trex hinders the alt-meds because taking shrooms when out of cycle I still require huge doses to reach any kind of T-level. Example…..15 tabs of lsd has been known to produce little trip effect. The product was from a reputable source and of good quality! 3) I never wait 5-days between doses. Using the truffles, I would be lucky if there was 5 hrs between doses. My conclusion…..repeated doses close together had an accumulative effect. Explanation…..While using the truffles, I never felt any T-level while dosing. BUT, after about 8 days, I woke on a Saturday and found the world was spinning and walking was a bit difficult. 4)Instead of drying the truffles, I tried to keep them fresh/moist by sealing them in a Ball jar. CAUTION….they cannot be kept for long in this state because they will grow moldy. 5) During this same time period, I harvested a crop of B+ shrooms. I dried the shrooms, but left them whole, and used them the same way as the truffles. About 2-4g chewed and held under the tongue worked almost as well as the truffles. Again, IMHO, it was the accumulative effect that worked for me. I have been PF since mid-May but am not sure if it is ‘my time’ out of cycle or if the treatment ended a 7-month cycle. As of late, I feel some of the early signs of another cycle, but alcohol does not bring on an attack. Hopefully, this will continue to be the case until I can get another successful grow harvested (the green monster has ruined 6 attempts). Hope this helps but, remember…..be your own judge as to the size and timing of your dosing. -dan Quote Link to comment Share on other sites More sharing options...
FunGuy Posted September 16, 2010 Share Posted September 16, 2010 Good day all: I've not tried truffles yet, they sound promising though. I look forward to more discussion on this topic.  I know BigDose has a lot of experience overall in this treatment of CH, far more than I. This thread aside, I'd like to urge some caution on the use of paper, other compounds and dosing frequency, especially for the newbies to this treatment. As Big Dose said, be your own judge as to the size and timing of your dosing. I want to highlight that. While 15 tabs has not had an effect for BigDose, that is highly unusual and not the norm. I have no doubt this is what he experienced but please don't anyone else try that much at one time without some caution.  :-) As always, the treatment schedule, frequency of treatment and amount needs to be tailored for each individual. In the files section are the recommendations that have been developed after reviewing many many reports from people with CH. We recommend you start there and then adapt as necessary. It is imperative that your personal dose and schedule based on your tolerances and experience. Please, do not make a decision based on the experience of others. Your results will vary. My personal experience with seeds (posted elsewhere) and altering the treatment schedule was ineffective due and IMO prolonged my cycle because I messed with the schedule. Carry on.  :-) FG Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 16, 2010 Share Posted September 16, 2010 Good advice FunGuy. It seems to me that the smallest effective dose of any med is well advised. ....still pain free in abilene, tx. Thanks to everyone here especially Lee Ann and Denny Quote Link to comment Share on other sites More sharing options...
alleyoop Posted September 16, 2010 Share Posted September 16, 2010 damnit! You've got a "Delete" button on the top right side of your screen. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 16, 2010 Share Posted September 16, 2010 Silly Wabbit. Thanks Quote Link to comment Share on other sites More sharing options...
alleyoop Posted September 16, 2010 Share Posted September 16, 2010 Hope this helps but, rememberÂ…..be your own judge as to the size and timing of your dosing. -dan Good to see you on the board Dan, and good advice. Bob Quote Link to comment Share on other sites More sharing options...
Bonkers Posted September 16, 2010 Share Posted September 16, 2010 Hi BigDose, Welcome to the forum. Your experience is similar to my son's. Like you, oxygen worsens his attacks. Alcohol has no effect and he requires larger doses (3.5-5.0g dried) of shrooms than most. He is, however, chronic but gets up to 10 days relief from each dose. Imitrex lost effectiveness several years ago. Stick around, your experience will be helpful to many of us. Ron Quote Link to comment Share on other sites More sharing options...
1961mom Posted October 3, 2010 Share Posted October 3, 2010 He considers an elevated arterial pH to really help the O2 do it's thing. Okay now I understand the lemonade references! Thanks for posting Bejeeber 8-) Quote Link to comment Share on other sites More sharing options...
1961mom Posted October 3, 2010 Share Posted October 3, 2010 ps Dan great to read you're still PF and I learned about the delete button through you too! LOL Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 4, 2010 Share Posted October 4, 2010 While most folks use anywhere from 1.5-3g of dry shrooms, I will use 10-15g. WOW!! THAT IS A GINORMOUS HONKLOAD ALRIGHT!!  Well in my book it is at least - 2g can knock me for a loop. Quote Link to comment Share on other sites More sharing options...
valerie Posted November 15, 2010 Author Share Posted November 15, 2010 Hello every body! first of all thank you very much for the adwice that you gave me a will ago... you were right, of course, the truffles did not works....I was not detox! so after I read all your advice, I decided to tackle the terrible five days! I began to split syringes of Imitrex 6 mg, in 2 syringes of 3 mg... and it works perfectly. ( ) Instead of taking 18mg per day (3 episode per day), I only took 8mg ... and this was already an achievement! I was taking also 240mg of Verapamil a day, and in one month I was able to reduce in one 40mg pill in the evening ... Unfortunately, at that point I felt really bad ... I had Ch every two hours of sleep ... but ...I was more or less detoxified! At that point, I withdrew my oxygen tank, and a lot of courage and I faced the terrible five days!! The first day I was brave and motivated. The second day I was only motivated. The third day I was ready to sell a kidney, or the soul to the devil to end the torture ... so I decided that the afternoon of the third day without medication, would be the perfect day for the Busted!! To be certain of the results, I've got dry mexican mushrooms, I left truffles in the drawer! I took them .... after 90 minutes I had a kip 9 CH !!!!!!!!!!! I spent more than two hours on trip, sitting in the bathroom with a imitrtex syringe in my hand, fighting the urge to finish everything in a shot [smiley=undecided.gif]..... or follow, the hope of a light after the tunnel, the miracle of psilocybe ..... I hoped ... I thought .... after 3 hours, I started yawning like a hippo, I was very sleepy .... I went and came from deep sleep and pain, and thought of all the people on CB who received the magic miracle!...but I was not one of them... does not work on me...bye bye hope.... ... in the evening I felt to sleep tired and desperate .... But.... I woke up in the morning ... morning?.... AFTERNOON! ....2 pm! I had SLEPT 10 hours !!!!!!!! Yes, 10 hours ...........!!!! I was in shock, 10 hours??? me???....never happens since I was 16!!!!! I was trying to find the pain in my head .... no nothing ... not even the aura .... I even shook my head as you do with Christmas packages, to see what's inside !!!... nothing .... not even a trace of pain .... [smiley=huh.gif] I walked on eggshells all day, listening to my ch .... looking for signs of "life" ..... CH are you still there??? I took again the mushrooms after 5 days ... a wonderful experience .... no needles and no pain .... now it's exactly 10 days that I have not even had a small headache ... I sleep like a baby every nights I slept slept slept ... also in the afternoon, which for me is a big trigger (and alcohol too) I wanted to share all this with you, my new experience of PFHB (Pain Free Human Been!!!!) I wanted to know if it happens often that a person only after these few doses, can have a result so astonishing?? I'll continue on this amazing journey, and I will continue to fallow all your advices, to keep my self in this state of grace.... ! I hope that I've been useful with my story, to some one who may have lost hope.... And THANK YOU very much to all the people on this site who spend time and precious energy on keeping Cluster Buster alive... I hope that every things remain the same as today....better it's impossible.....!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Lee_Ann Posted November 15, 2010 Share Posted November 15, 2010 Congratulations Val!!! Hope you continue to have many pain free days and nights. Thanks for sharing your story. Keep us updated. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 15, 2010 Share Posted November 15, 2010 [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif]Fantastic news Val!!!! [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] Long may it last! [smiley=thumbup.gif] Bob Quote Link to comment Share on other sites More sharing options...
Angel Posted November 15, 2010 Share Posted November 15, 2010 Thats is GREAT news Val  Thank you so much for keeping us updated, we always love a great success story and your right it does give others hope !! Please continue to keep us posted Quote Link to comment Share on other sites More sharing options...
Bonkers Posted November 15, 2010 Share Posted November 15, 2010 Hi Val, What a heart-warming success story! I wish it worked like that for everyone. My son's first few busts were similar. He'd dose and after a good night's sleep would wake rested and PF. What we never did, but intend to do this next time, is dose while he's STILL PF. We're going to try, starting with tonight's dose, the same schedule used by those testing BOL. He'll dose on day 1, day 5 and then day 10. He's getting 6-7 PF days now starting 3 days after dosing so we should be able to hit both the 2nd and 3rd doses before the HAs return. It'd be nice if Michael could follow in your success. I'm so very happy for you. I wish every clusterhead in the world could read your story. Your success is an inspiration to us all. Ron Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted November 15, 2010 Share Posted November 15, 2010 Hi Val, First off, congratulations on pushing theough the detox. We know it isn't easy. It can be even harder then breaking an addiction to drugs or alcohol in that it has elements of both physical and mental hurdles to overcome. Yes, some people are lucky enough to have similar results with only a dose or two. Congratulazioni. Goda di. Bob Quote Link to comment Share on other sites More sharing options...
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