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      Welcome   01/25/2017

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  1. Today
  2. I think melatonin being far to weak, too much easy for the beast getting through. Benzo's to I guess. In my opinion the beast even could make a dead mean walking again. Bud this is my experience others may chime in having different experiences or even tools. So far I didn't notice anything keeping us sleeping...
  3. So, No need to take the Melatonin to keep me more in sleep if the beast is trying to pop though at night? Seems like the slightest thing to wake me up ie: to piss, would start the beast to come through.
  4. yep, so if you do not suffer from sleep disorder, there is no reason to take them at all for sure. Flying international crossing time zones melatonin can make the difference yes, but not every time, everybody. Flight-crews and so fort do know well about it, normally
  5. I don't ever take it. I can sleep through anything and never have a problem falling asleep. I read it here so I tried it yesterday for the the first time. With the beast being an exception to sleep.
  6. Great but I'm just wonder why do you take Melatonin? Just because you read about it here or do you suffer from sleep disorder? If so, since when? Since ever or just when in cycle. Thanks
  7. Thanks Urs, Everything was the same, same side, same areas of pain, only difference was the acuteness of the pain over the past couple weeks. Sharper less vice like and more searing, localized. On an AMAZINGLY better note, I had a pain free night and nothing this morning! I upped my D3 yesterday to 15,000 mg, was my 3rd day of dosing MM, took 10mg melatonin, and 50mg of Benadryl. Also probably consumed at least 10 liters of H2O all day. Had some phantom pain around 10pm just before I took the Benadryl and Melatonin. Then I was out. Ill dose again MM later today when I get some work done. As for the D3. Ive been taking 600mg magnesium, omega fish oil's, 600mg calcium, 1000 mg lyposphric vitamin C, and my multi vitamin. Keep you posted.
  8. Welcome to the community Kevlar and ditto on what Chf said^^^^ Dallas Denny
  9. What they said.
  10. Hi and welcome kevlar! It seems that you have done a lot of reading on the board and learned a lot. Isn't it amazing that this site is miles ahead of most doctors? Oh course it is a rather rare disorder and most physicians would go broke if they only treated Chers! Kudu's for getting started on the D3 Regimen. For some it actually stops the hits and for many it will lower the intensity and ramp up time considerably. Either way, you win. A proper O2 set up will amaze you! You really need at least 15lpm with a non-rebreather mask. With the proper breathing technique, you can kill a hit in 10 minutes or less. Have you tried an energy shot or caffeine at the first sign of an attack? They can abort one for you. Drink it down fast. at the first sign of a hit. Yes, falling barometric pressure is a common trigger. Airplanes do not maintain the same pressure that you experience down here. And falling pressure due to weather fronts can be rough too. Triptans are famous for extending cycles. The pills take too long to really help much. Nasal spray or injection are preferred. As for Topa many of us call it Dopamax. Verapamil is often the first pharma prescribed. Good luck with your appt. and I really hope that you get the O2 you so desperately need.
  11. Thanks for note URS! Yes, I never leave anywhere without the sumatriptan during my cycle, but I am excited to try the RIGHT oxygen flow, as the only time I tried at a doc's office was through the nasal tubes and not a mask, and it prob wasn't 15+ LPM. You're right I'm not in as bad a place right now, I have only had shadows the past couple days and if my last cycle is any indication of pattern, them I'm hopefully winding down, but who knows, trying not to jinx it.
  12. Rsrsrsrs, hi kevlar, welcome to the club Have a look to the trigger list( but I guess you've already done so) as far as I remember, yes flights changes in air pressure affects some of or fellows (scuba diving too...) O2 is even more than as terrible strong MUST. If I could I would force every CH-head by the law doing so and of course putting in jail every MD/ND not knowing about it, unfortunately I'm not Mr. Trump I personally think you do very well going into D3 regime prior do bust. You are in a comfortable situation as you seem doing well at the moment. Don't abandon Sumatriptan completely as it is the main abortive and proven by many. Should be always near you for emergency. 10/10 to you!
  13. Wanted to say hi to the group and thanks to all for sharing such amazing information I never knew was out there. I'm 31 and have had episodic cluster headaches for about 10 years, only the last 2 of which were diagnosed. For years I thought I had severe migraines/sinus headaches that came and went in the exact same place in my head behind right eye, and never heard the term cluster headaches until I stumbled upon some online survey and started reading and then the lightbulb moment went on I finally got some clarity to what I had. Therefore, I really have only been logging my attacks/cycles for a short period of time, but my last cycle was 41 days and was CH free for about 14 months and now today I am in day 41 of this current cycle. Definite trigger for me is alcohol and have stayed away during this cycle which seems to limit the severity of attacks. An interesting note is that both of my last cycles began when I was away on business, so could the flying / pressure change be a cycle initiator? My neuro put me on sumatriptan and then topiramax, but I have since quit taking the topa as I did not enjoy side effects. The sumatriptan seems to abort OK if I recognize early, and I only have the pills which I realize are not as effective as the injections as I continue reading on this board. I just ordered all my D3 regiment supplies and plan to ask at my appointment next week for the O2 setup as described in your files. Thank you thank you for all the helpful information, I am much more informed and prepared, and I'm also more inclined to try the non-pharma strategies, especially as I read that sumatriptan may extend cycles/frequencies. In fact I think I may have more shadows this cycle than last when I didn't take sumatriptan. Pending the outcome of the D3 effectiveness for me, my next step is trying to bust. If/when I find the resources to attempt MM I will be sure and share my debrief on that board. I have read and printed many of the threads and files on here in the last few weeks, so my main goal today was to say thank you for all the contributors for this encyclopedia for CH. - Kevin from Delaware
  14. Hi Bigtime, welcome. It seems you did very well until know. I'm super happy for you and thanks for contributing your story here on the board. one thing I like asking you: This time, did the beast change in format? Same side, apearing exactly the same way as it did in the past or do you notice any change? thAnks
  15. Hey all, Thought I'd finally give back and share after pillaging content and research for years. Thanks for all the help though out and I will do my best to stay active here. My Ch's are different now. I'm 38. Been having CH's since I was 15. Diagnosed right away by a friends dad who was an ER doc. Text book episodic. Imitrex and vereprimil back then. Then injections, mostly just dealt with it. Every year Jan to April, 6-8 weeks, usually 1 a day maybe 2 if I was drinking. Always middle of the night, unless drinking. Puke and pass out was fairly standard, pain has always ranged from 5-10 with occasional shadows. Started smoking in my 20's and still do. Fast forward to 12 years or so ago when I came across the busters using MM. Didn't have to twist my arm. Had tons of connections so they were easy to get, all upright citizens. I managed to keep from getting my cycle pretty well with them. I think maybe 2 mid level cycles in 8 years. Busted a cycle twice. Or at least at onset. During one of those attacks I got an MRI, went to a neurologist, etc. More of the same. Vereprimil imitrex etc. Scoffing at my alternative medicine suggestions. I stopped using those meds after I learned the adverse effects with the MM. Never have I tried Oxygen, never got a prescription and was always too busy to deal. But that was this time that I should have started. I also started using Redbull's during an attack to some success / help. Also smoking a cig would give me that headrush and would dull or abort an attack occasionally. Started using H2O method then and still do with some results. Same with quick fitness. 25 pushups as fast as I can, stretch and breath hard for 5 min, do push ups again. Never enough to raise my core temp but enough to get the heart racing. That was then. Then remission for 5 years. I moved to California, started spending a lot of time in the ocean, doing yoga, eating well etc. all that text book cali stuff. So I contributed it to lifestyle change and stopped dosing MM. Which I had been doing every few months. Then they came back. Its been 8 weeks now. In like a Lamb, scared the shit out of me. Now the lion is here and they are really scaring me. They started Super mild, maybe 3-5's at most. Dosed right away with MM. Usually just micro dosing to have body high without visuals. Did that once. Had to travel and yes, flying is a trigger. Started D3 regimen. Micro dosed again a few times. Went 6 weeks with 2 or 3 days on and 2 or 3 days off. Maybe 1 or 2 a day, evening and then early morning. Then about 2 weeks ago they hit full force and have gotten worse, 7-10s. Back to puking. Since then I've upped the H2O intake, and have now eaten more MM every day for the past 3 days and will continue for a few more. Bought melatonin, benedryl, sinus busters, 5 hr energy, and will try the hot water tonight If I can. Been laying off the yeast / gluten and alcohol. So whats weird now is that Ive been getting one in the evening, dinner time or a bit later, realizing now its when I relax. Then they just don't stop at night. Like 3-4 a night with phantom in between but just enough for me to sleep until the next starts. The worst is always the last, anywhere from 5am to 7am it hits. Today's went for 1 hr 45. They were never like that before. Wondering or trying to remember if they get worse towards the end of the cycle? I eat MM in the morning first thing at onset. In the lip. Empty stomach, with vitamin C packs and OJ. Chug the cold brew, Start the pushups and breathing, pacing, and a cig at first hint of a light at the end. Hoping I can bust through this time. Or try and get an Oxygen script tomorrow.
  16. Thanks a lot CHfather. I'll dig deep into it.
  17. Yesterday
  18. urs, if you haven't seen these, you can click on them (thanks, Jeebs) Alteration in nature of cluster headache during subcutaneous administration of sumatriptan Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients On the other hand (and these subjects were overusing triptans). . . Sumatriptan overuse in episodic cluster headache: Lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis
  19. I urge everybody using triptans only as an emergency abortive. Nothing good comes out of frequent use of Triptans. Naratiptan may be better than Sumatriptan. Never the less, use them with very much caution. Never ever on a permanent base, no mater dosage used. A few days ok, but after you have to give a break!!! A break does mean to me at least a month... I've made some really crazy experience using Naratriptan (for years) and Sumatriptan lately. Now I'm working hard getting more evidence and scientific background on my findings which at the moment I won't reveal at all, but yes, I may be able to come up with some really ugly shit... O2, verapamil and busting still considered being save! So I hope I can come back with some verified sounding input for all of us found through logic as I'm not qualified talking on a pharmaceutical level.
  20. Guys: I expound a theory that the ultimate treatment for the headache cycle lies within the pain itself. I have found the Triptans do cause me re-bounds, but only when in high cycle - also found that there is a point in high cycle when I have to go down in my office at home and let 'er rip. No meds - cold turkey - ice on the head - bang and scream and let the attack run its course. It seems almost like there is a number of attacks in a cycle that you must endure in the purest form of the pain for the Beast to begin to release its bloody talons. However those of you who have let me whine here for the last decade or more know that I keep the injections handy - and I take a healthy dose of Verap. every day all year - I have the big big O2 tank in the hall all year - I have tried a visit to the Portuguese wizard, busting with shrooms, Chinese doctor and herbs - nothing but licorice water for a week, water water water, exercise rapidly, ice on the carotid artery, steroid dose pak, Cluster vitamin regimen, Opioids, benzos, advil, melatonin, a Shaman in the Navajo tradition, Hot water pads, every other god dam thing. In the end; every single cluster cycle required absolute submission to the Beast in varying amounts before I can see the light.
  21. I tried the Botox 3 years ago - I agree with Pixie that it hurt a lot - I felt bruised for a week or more. The result for me was strange - it was as if it put a doughnut in the pain - there was a hole in the middle of the pain. No going back there at this time - heading into annual Spring cluster God Help Me.
  22. Great news, not having understood most of this I´m gone see the cows in the open fields within the next days or so as growing kits are not available in my country... Psilocybin may give another drill to my issues as my insane LSD consumption has a certain limit to me! (no mater which amount I take, no mater how long I wait, no tripping at all) 4 sure,
  23. I would just click the "like" button, but this is far beyond that. Thanks so much.
  24. Spiny no no NOOOooOOO NOT THE BOMBA SHACK WITHOUT ME, aughhhhhhhhh!! Oh Lordy I bet the Fusterclucks performed and everything. And CHf they don't call you CH "hipster" father for nuthin'. Sorry to say I don't know if I can tolerate non-HD. Spoiled to the core.
  25. MAPS notes Just finished attending the last lecture of the Multidisciplinary Association of Psychedelic Studies (MAPS). Coined Psychedelic Studies 2017 this was the largest (to date) gathering of professionals, academics, lay therapists and those with a life long interest in the benefits of psychedelic modalities. There were researchers, clinicians, advocates and enthusiasts sharing data, experience and advice. Among those at this robust and vigorous event was Bob Wold representing Cluster Busters at an informational table and Brendan Burns sharing his personal story and knowledge. Emmanuelle Schindler presented the clinical study design and rationale setting the stage for presenting solid data at future meetings. Our cause was well represented. Certainly our situation is a bit one off from the mainstream but it is important we don't let the avant garde of this exciting movement forget our interest as psychedelics rapidly reenter current therapeutic options. I attended many of the talks and wish to provide a high level summary of some of the talks that may be of interest to those considering alternative cluster treatments. The videos of specific presentations are going to be available on You Tube and searching MAPS with the presenters name should guide you to the source. The program should be on the MAPS sight. No claims are made of unerring accuracy, lack of bias in interpretation or completeness. My best is all I have to offer. Stanislav Grof opened the lectures and included his work on breathing techniques to produce a psychedelic state. He is a well loved researcher in LSD psychotherapy prior to making LSD illegal and developed these techniques in the void left by draconian legislation. Many workshops have evolved based on his techniques and components are reminiscent of what Batch has suggested. There was much about herbal roots from around the world I don't want to spell but since we have limited input on things other than LSD and psilocybin I leave their usefulness to inevitable discussions. MDMA got lots of attention but no data for us. Sounds like great stuff for the right application. These will eventually crop up in one form or another. I will also reserve judgement on the large number of folks bemoaning their migraine experiences to Bob. The guy suggesting a stem cell transplant fixed his clusters will go on the shelf for now, Heaven points for Bob. Psilocybin was discussed in a significant number of presentations. The context was in death and dying, addiction, PTSD and pharmacology but the message was loud, clear and repeatable. The use of psilocybin in these context is safe, effective and long lasting. This included measures of anxiety, mystical experiences, squashing suicidal ideation and overall improvement in sense of self. Trait measures of forgiveness, life meaning and faith maturity are amplified in a sustained way. Psilocybin was given in a safe set and setting and included psychotherapy and counseling. Look up work at Johns Hopkins and NYU. Neuroimaging studies report pretty consistent findings. There is the well known interconnection throughout the brain on psilocybin. Decreased blood flow is seen in the Cingular nucleus. This results in slowing or blocking the brains inhibition of data inflow allowing for freer communication. There is desynchronization of the posterior Cingular nucleus and decreased inhibition. Basically psilocybin is believed to inhibit the inhibitor and allow free flow of information. Interestingly the brains Default Mode Network (DMN) decreases with immediate dosing but in 24 hours and then increases in a sustained way for a long time. Similar changes are seen in experienced 1000+ hour meditators. Meditation showed similar findings to a dose of psilocybin 25 mg / 70 kg. The posterior hypothalamus is activated by psilocybin and this activity can be affected by hormones, genetics and inflammation. UW- Madison presented participants in a pharmacokinetic study looking at dose relationships and physiologic safety. It was a Phase I trial to establish safety parameters. It was very safe at all doses. There were 3 dose regimens given a month apart and dosing was based on body weight. 0.3-0.6 mg/kg body weight. So if you weigh 154 lbs your largest dose was 42 mg. That is equal to 6.7-8.4 grams dried shrooms. (4 grams dried is equal to 20-25 mg psilocybin). No adverse physiological events and the participants report sedate to wild experiences. They sought each other out after the study and remain bonded. The question of dosing by body weight or standardized dosing was addressed. Study's showed no difference in outcome measures related to body weight. The experiences where all over the place irrespective of dose and body weight. Seems you get what you need? Looking at bad experiences on meds (bad trip) demonstrated guidance through the event in a safe set and setting was effective. Most related the experience to be profound even if seemed negative to sitters while occurring. Good experiences and bad experiences were latter judged helpful. Look up the Zendo project on psychedelic harm reduction and study the tenants of safe place, talk through not down, sitting not guiding and difficult is not bad. The biggest impression was all the 70-80+ year old wandering around with extensive experience in psilocybin and LSD use. Of course these represent folks who see a profound benefit of these substances in their lives. They are healthy, intelligent productive folks with mind blowing exposure to these substances. A pretty good real life testament to safety.
  26. Thanks for the guidance, Jeebs. I was just copying and pasting the links; never noticed the link thingie. MST3k is good. Of course, if you're jonesin' for some and you don't want to splurge on Netflix. there are tons of full-length older episodes on youtube, if you can tolerate non-HD. (Heck yes, I'm old but I'm hip. I can say "jonesin' " with authority.)
  27. Last week
  28. Jeebs, you should know that several of us went to The Bomba Shack without you too.
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