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  1. No Escape Today is like any other, Yesterday, today & tomorrow, all blur together. Day in and day out, everyday the same, I wish I could escape this game. The Beast visits most when least expected, My face drains of colour, and I feel quite infected. Into one eyeball, always just the one, the Beast comes, Blinding and piercing like I’ve been poked hard, with a thumb. My eye seems to freeze as if turned to ice, And the pressure builds as if placed in a vice. My nose starts to run and my eye begins to tear, As m
    13 points
  2. My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable. Best Jon
    9 points
  3. Well guys, I’d like to start with my weight loss, as some of you may have read in my earlier posts, perhaps about 2 months ago now I believe, I had a significant weight gain from 75 kilos to 88 in the space of 4 months from January, where my cycle started, the cycle was only small, but I had dealt with heavy post cycle shadows for a several months. As a result, I stopped going to th gym and began eating very unhealthy, before I knew it I went from being quite fit and athletic to overweight, I am please to say that I am at the half way point, i now weight 81.3 kilos, only 6 more kilos to go bef
    8 points
  4. 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. Em
    8 points
  5. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches
    7 points
  6. Hi blueblueblue, So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018. I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now. Regards,
    7 points
  7. To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the c
    6 points
  8. I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. Best wishes from me, BOF. Get well soon and rejoin us when you can.
    6 points
  9. FYI I know many have been concerned about Freud. He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes. Best regards to a pain free future for all, Freuds mom
    6 points
  10. Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy an
    6 points
  11. I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins.
    6 points
  12. Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was
    6 points
  13. This popped up on my Facebook feed today, and I thought it apt. MG
    6 points
  14. Just a few comments on the gammaCore device. As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost. The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Eve
    6 points
  15. Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.
    6 points
  16. The thing is Mr. Shevel, the published studies that you are talking about include a total of one on cluster headaches and that study has a fail rate of 20%. That's IF you actually got relief for these people by your surgery and it's not, to use your own words-- "In the treatment of CH, the possibility must always be borne in mind that the cluster stopped spontaneously, not because of the intervention, but because of the natural progression of the disease." (or because you gave them the right drugs for anesthesia which knocked them out of cycle, just like many of the meds that we use for cl
    6 points
  17. Histamine Restricted Diet "the list" Allowed/Restricted Foods This diet excludes all: foods with naturally high levels of histamine fermented food artificial food coloring, especially tartrazine Benzoates including food sources of benzoates, benzoic acid and sodium benzoate Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT) Milk and Dairy Foods Allowed Plain milk Ricotta cheese Foods Restricted All prepared dairy products made with restricted ingredients All cheese All yogurt Buttermilk Breads and Cereals Foods Allowed All plain grains Plain oats and oatmea
    6 points
  18. Hi all, Thanks to @xxx 's vitamin regime, I seem to be skating past my first cycle after taking an earlier version of the regime, and I thought I'd share my results so far. After my previous cycle about 6 months ago I started taking 10k/day D3 gel tabs plus the magnesium, Mature Multi, Super K, and fish oil supplements recommended (I see Batch has updated the regimen a bit recently, am currently looking into this) Due to Covid, I have yet to test my D levels, but I am planning to see my Dr for a followup soon. None the less, my usual cycles last 6-10 weeks of daily episodes
    5 points
  19. Hi all, First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend. My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the
    5 points
  20. Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every nigh
    5 points
  21. Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for
    5 points
  22. I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule.
    5 points
  23. This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur
    5 points
  24. You may be right about this Pebbles, we simply do not have enough information yet. What I know is the following, the headaches started with the infection. While they have most of the defined symptoms of cluster headaches, there are some differences, so it is possible that they are not classic 'cluster headaches'. Though as to that, I wonder if it is really possible to clearly define cluster headaches in that way or if like many other syndromes involving the human body such as anxiety and OCD, etc, or autism and Aspergers, etc, there is really just a spectrum with a lot of overlap in a lot of
    5 points
  25. Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.
    5 points
  26. Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years. I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer. The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result
    5 points
  27. D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and
    5 points
  28. Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster he
    5 points
  29. Hi all I am alive and well. My PTSD ended up getting triggered in Dallas as I thought it might. Sorry for my long absence. Thanks to all that sent their love. I will be back on the boards and this thread w an update. Short version is I am now having 4-6 kip 7-9CH a day. My D peaked at 277 w no bump in Ca or PTH. (I was about 150ish before I was admitted unfairly by my psych thinking I was manic and not triggered and I knew it was going to happen so I loaded w 1.5 mil units before my admission. My D spiked to 277 w that and my CH were gone for a bit. But as it burned off they came back as expec
    5 points
  30. I'm going to go ahead and post this a few days early as I may not have the time this weekend! This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!! We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!! I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!! DD
    5 points
  31. Hi all, I have some great news to report! I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment... I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage
    5 points
  32. I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
    5 points
  33. Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
    5 points
  34. Damn it Denny....you mean I have to lug a thumb drive all the way to Dallas??!??! What kinda rookie operation is this?
    5 points
  35. Hi bobcat, Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap he
    5 points
  36. Hey batch, I meant what I said you do a great service to the community. I have directed many people to D3 and your work. It was just the opening statement that got me. Keep up the good fight. Brian
    5 points
  37. ….a clusterhead's gut is better than many a doctor's head....and CERTAINLY better informed...….
    5 points
  38. I've been able to get tremendous help and support from the people on this forum. Thank you. Please know that for the rest of my life, I'll be praying earnestly for everyone to be healthy and pain free. And for there to be a cure. Season's Greeting to all, Jimmy-
    5 points
  39. Freud, Fair question and thanks for the kind words. I'm a 74 year old retired Navy Fighter Pilot. I was flying Navy fighters like the F9-F8 Cougar and F-8 Crusader, a.k.a., Mig Master before they started the first Top Gun class... I've a degree in Chemistry and at one point, was considering a career in medicine... I got a ride in a Navy trainer aircraft (T-34) my Junior year at the U of W, Seattle and that sealed the deal... The thought of flying Navy fighters appeared to be be a lot more fun than another 6 years of school so I joined the Navy to fly in 1965... I'm also a long time
    5 points
  40. https://scholar.google.fr/scholar_url?url=http%3A%2F%2Fdownloads.hindawi.com%2Fjournals%2Fcrinm%2Faip%2F3901619.pdf&hl=fr&sa=X&scisig=AAGBfm1vtUTuZ_cQpBApdV3xiS688Nwr2A&nossl=1&oi=scholaralrt This link was posted on Facebook Saturday, a medical article about one patient using B1 for cch. I'm 11 years cch, o2, d3, lsa, I get some daily shadows and then 5 - 7 hit. I started taking B1 200 mg Saturday evening, Sunday took 300 mg with a very light pm hit, Monday took 400 mg through out the day, no shadows or 5 pm hit, Tuesday went back to 300 mg still no shadows or evenin
    5 points
  41. I've been thinking a lot about the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going. I had trouble coming to terms with having CH and that it even existed. The pain was always a reminder that this is real. That i have this. That too many people have this. I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way. I don't have much in the way of super helpful advice for an
    5 points
  42. something new for me is a deep sleep, also changing my dose to one dose of B1 400mg am and see someone on facebook emailed Dr. Constantini and asked these questions: Q1- Was your healed patient taking any other vitamine supplement1 (Omega3, D1, Magnesium and adult multi-vitamin, etc.)? A1: The patient didn't take any supplement Q2- Are you aware of cases where the B1 treatment isn’t working? A2: We only have three cases in treatment and they are responding. We also have 10 cases of chronic migraine and episodic migraine and all responded wonderfully to our therapy, with the comp
    5 points
  43. Hi littlecush...welcome...sorry you gotta be here...but tis the RIGHT place! For many years I was DESPERATE to "explain" to non clusterheads what it was like. Even best of friends, coworkers and family members would roll their eyes and "yup" me. There is even a marvelous letter penned by Simon explaining what the ailment is...quite thorough and touching...and I even gave up giving that to folks....it just didn't register. The ONLY person...other than other clusterheads and ONE neurologist..... who ever got it..... was a coworker who had a friend with CH he used to drive to the ER. Anymore
    5 points
  44. I don't like speaking ill of someone but I went to see Dr Shevel in 2013 and left the consultation in tears. After suffering with clusters for many years, I stumbled across Dr Shevel on my local radio talking about his surgery and hope sprang up inside of me. I contacted his clinic and waited a few weeks till he came to my city. When I went to see him, he asked me what was wrong and I told him about my history of clusters. He seemed tired and uninterested and his answer was that I needed surgery and that it would cost round about R70 000 in total (That is our local currency) which medical
    5 points
  45. Hi Andrew As Ch father states busting or d3 may help but first a correct diagnosis is essential ,as you are in the Uk like myself can i ask a few questions that may help us help you 1.has a headache specialist /neurologist diagnosed you? 2.have you tried oxygen ? (its quite possible you now live in an area where the demand valve system is available on prescription ) 3.if no to the two above has your GP referred you to a headache specialist neurologist ? pm or answer here if you wish zany
    5 points
  46. Andrew, mm (and truffles), LSD and LSA definitely help. They've been the only thing that's given many of us our lives back. I was chronic and have been taking regular doses for over 7 years now. I've been pain free a significant amount of that time. I believe truffles are available where you live. Please read the files section on this message board. There's a specific process you need to follow. 1) detox from all triptamine type drugs (Imitrex, maxalt etc. etc). 2) Wait 5 days from he start of detox for your first dose. Take enough for a "threshold" dose. Meaning you
    5 points
  47. hello all,my storey is 2 yrs ago i started getting a pain in my right eye and the side of my face after drinking alcohol and only when i had a drink this would happen didnt know what was happening to me went to docs and he said i had a sinus infection and put me on antiboitics which didnt help.then i started getting the pain more and more with out drinking alcohol i was getting 3 attacks a day all at the same time,so went to docs again who booked me in for mri scan and to see a neurology team,where i was told i had cluster head aches.i am allso a recovering addict and was on methodone for this
    5 points
  48. CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind. You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair
    4 points
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