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  1. 9 points
    MoxieGirl

    Cluster Headache Poem

    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 my body is gripped with fear. Red hot nails, they pierce and twist in my eye, The burning is such that I wish to die. Sharp blades cut and rip through my skull, As I pace the room and bang my head on the wall. I can feel my cranium crack, As all my world turns to black. For one hour or maybe two, How long it really lasts, I dare not tell you. For all that time, I pace and I walk, Sat on my bed, back and forth I rock. I suck on oxygen and drink caffeine, I can be quite snappy and downright mean. But eventually the nails are removed, as are the blades, And the pain within, all but fades. I am drained, I am spent, My energy is at zero percent. I need water, I need food, But instead, I lay here unable to move. I take one deep breath, and maybe two, Before the next symptoms ensue. Then the crying truly begins, As my body shakes from my bones to my skin. I am racked with hot convulsions in wave upon wave, To this terror I am now but a slave. Eventually, even this fades to a whimper, As my body begins to shiver. Wrapped in a blanket I raise myself up, Sloshing some water into a cup. Today was like any other, Yesterday, today & tomorrow, they all blur together. Day in and day out, everyday the same, Oh, how I wish I could escape this pain.
  2. 9 points
    jon019

    Episodic to Chronic - advice

    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
  3. 8 points
    Pebblesthecorgi

    Psychedelic Science 2017

    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.
  4. 7 points
    BostonHeadacheDoc

    Remission Over

    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, Brian E McGeeney, MD, MPH, MBA Neurology Dept, Boston University School of Medicine and Boston Medical Center.
  5. 6 points
    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. 6 points
    Ricardo

    Dr Elliot Shevel

    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 clusterbusting) The 80% success rate in this story gets a lot of press from you and your business, but very little attention gets paid to the failures. What are their stories like? Because on this site we have heard from more than one of them and the stories have been pretty horrific. In case Mr. Shevel has not taken the time to read through the rest of this post here are the reports- "August 29, 2015 My niece went back to JoBerg and stayed there for three weeks. During that time she had 3 procedures done but unfortunately it didnt work. When she arrived home in Australia she was worse than ever and it has been devastating. " "My sister went twice as she really believes Mr Shevel could cure her. Both times her wounds got badly infected and the cuts in front of her ears looks horrible as the stitches were not done properly." "I have been through 2 operations, and sadly my headaches is not even 1% better. As a matter of fact, where he has cut hurts tremendously. AND I AM R70 000 South African Rand poorer. He promised me he would make it better. > My husband took out a second mortgage on our home. I have also found out that he has lied to me. My jaw could not open after the first operation, and he said he never had this problem... Just to find out someone else on this forum had the same problem. I went to the headache clinic specifically asking them to help me with medication overuse headaches, and they just wanted to operate. I was already taken morphine on a regular basis, I WAS DESPERATE. I THINK THE HEADACHE CLINIC IS THE LAST PLACE TO VISIT IN SOUTH AFRICA IF YOU ARE SUFFERING FROM CH. IN my opinion they are money hungry sharks, which thrive on the desperate and vulnerable." After every operation, I got infection. They do not sterilize where they cut, that's why infection happens so frequently. I know they do not sterilize, because the tears on my cheeks where clearly visible through my make-up. The day when they did the tests I have given them a list of all the meds and ASKED HIM ON SEVERAL OCCASIONS.... WHAT ABOUT THE DETOX. Seriously, if I asked him 5 times, I am not joking. Every time, he told me that so how, after the operations, there IS ZERO DETOX effects. I had the WORST DETOX in Desember after the first operation. Sad, since, my original reason I went there was for them to PLEASE get me off of all the meds!!!! For goodness sake, as a clinic specializing in headaches, the effect of rebound headaches should be so clear!!! Again, they are money hungry sharks!!!" Even if you get relief from your clusters, if your clinic is so messed up that you die of a sepsis infection because your wounds weren't treated right who cares? Or how about some really great facial scarring with a side of bankruptcy and still have no relief from your clusters? It's true that it is hard as hell to find a doctor that knows what they are talking about and when it comes to cluster headache there really is only one way to prove that you are actually basing your actions on facts, not opinions. That's to pass the exam the United Council for Neurological Sub specialties has for headache medicine. https://www.ucns.org/ McGeeney has passed this, have you? When you say "If anyone is misguided, according to the medical literature, then it is Boston Headache Doc. Most “headache gurus” have very little real knowledge of the origins of cluster pain. They offer opinions with emotive phrases to scare patients and when in fact they are dooming them to a life of misery when help is actually available and scientifically substantiated." I would say you have this quite backwords. McGeeney has proven time and time again to all of us here on this site that he has real answers that can and have helped us. He's proven he knows what he is talking about and he has done all of this essentially for free, never once trying to make a buck off of anyone. I am pretty sure he has not actually left anyone without the option of eating solid food anymore either, which I am pretty sure is something you can not say. The only thing that you have proven is that you are willing to disparage people you know nothing about in order to save face from the mutilations and pain that you have caused in your effort to fill your bank account. Final note--On this board it is generally frowned upon when people try to sell things to other members. Especially when the price tag is around $50,000 and the only thing you are likely to get out of it is the knowledge that sometimes things actually can get worse than just having clusters. By the way, thanks! I'm giving a conference talk at the biggest psychedelics conference this world has ever seen in about a week and I was looking for some more material for my talk. The rogue "Dr's" that are out there trying to make big bucks off of desperate people by the old slice and dice will make for a good attention getter. -Ricardo
  7. 6 points
    Leonhart

    Low Histamine diet worked for me!

    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 oatmeal Plain cream of wheat Puffed rice and wheat Foods Restricted Anise Artificial colors Artificial flavors Bleached flour Cheese Chocolate Cinnamon Cloves Cocoa Margarine Preservatives Restricted fruits Some jams, jellies Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT Commercial pie, pastry, and fillings Baking mixes Dry dessert mixes Vegetables Foods Allowed All pure fresh and frozen vegetables and juices except those listed Foods Restricted Pumpkin Sauerkraut Spinach Tomato and all tomato products All vegetables prepared with restricted ingredients Fruits Foods Allowed Fruits Apple Banana Cantaloupe (rock melon) Figs Grapefruit Grapes Honeydew Kiwi Lemon Lime Mango Pear Rhubarb Watermelon Fruit dishes made with allowed ingredients Foods Restricted Apricot Cherry Cranberry Currant Date Loganberry Nectarine Orange Papaya (pawpaw) Peach Pineapple Prunes Plums Raisins Raspberries Strawberries Fruit dishes, jams, juices made with restricted ingredients Meat, poultry and fish Foods Allowed All pure, freshly cooked meat or poultry Foods Restricted All fish and shellfish All processed meats All leftover cooked meats Eggs Foods Allowed All plain, cooked egg Foods Restricted All prepared with restricted ingredients Raw egg white (as in some eggnog, hollandaise sauce, milkshake) Legumes Foods Allowed All plain legumes except those listed Pure peanut butter Foods Restricted Soy beans Red beans Nuts and seeds Foods allowed All plain nuts and seedsFoods restricted All with restricted ingredients Fats and oils Foods allowed Pure butter Pure vegetable oil Homemade salad dressings with allowed ingredients Lard and meat drippings Homemade gravies Foods restricted All fats and oils with color and/or preservatives Hydrolyzed lecithin Margarine Prepared salad dressings with restricted ingredients Prepared gravies Spices and Herbs Foods allowed All fresh, frozen or dried herbs and spices except those listed Foods restricted Anise Cinnamon Cloves Curry powder Hot paprika Nutmeg Seasoning packets with restricted ingredients Foods labeled “with spices†Sweeteners Foods allowed Sugar Honey Molasses Maple syrup Corn syrup Icing sugar Pure jams, jellies, marmalades, conserves made with allowed ingredients Plain artificial sweeteners Homemade sweets with allowed ingredients Foods restricted Flavored syrups Prepared dessert fillings Prepared icings, frostings Spreads with restricted ingredients Cake decorations Confectionary Commercial candies Miscellaneous Food allowed Baking powder Baking soda Cream of tartar Plain gelatin Homemade relishes with allowed ingredients Foods restricted All chocolate and cocoa Flavored gelatin Mincemeat Prepared relishes and olives Soy sauce Miso Commercial ketchup Gherkin pickles Most commercial salad dressing Beverages Food allowed Plain milk Pure juices of allowed fruits and vegetables Plain and carbonated mineral water Coffee Alcohol: plain vodka, gin, white rum Foods restricted Flavored milks Fruit juices and cocktails made with restricted ingredients All other carbonated drinks All tea All drinks with “flavor†or “spices†Beer Wine Cider All other alcoholic beverages
  8. 5 points
    Psiloscribe

    Patient Registry

    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 your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters
  9. 5 points
    Psiloscribe

    Gammacore/electrocore

    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. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery. So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching. The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%. It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community. Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community. When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down. Peace out~ Hope everyone has a great 2019 Bob
  10. 5 points
    Jimmy Martinez

    Happy Holidays and thank you

    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-
  11. 5 points
    Batch

    Oxygen supplier

    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 CHer (first CH attack in 1994), chronic since 2004. I've over 3000 hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen from takeoff to landing (usually aboard an aircraft carrier). I can assure you, I was sucking down 100% oxygen at flow rates that support hyperventilation during high G-Force dog fights and combat maneuvering... like getting shot at by bad guy SAMs and AAA. I'm a patent holder for the demand valve method of rapid CH aborts method of therapy. I also have 15 years training in aviation physiology with most of that training in oxygen breathing systems. I'm a member of the American Academy of Neurology as a cluster headache researcher and I've had the opportunity to meet with some of the top neurologists in the world experienced in treating patients suffering from cluster and migraine headache. Bottom line... I'm here to help CHers avoid the terrible pain we all know so well by providing information outreach on safe and effective methods of controlling CH (oxygen therapy with hyperventilation as a safe and effective CH abortive and vitamin D3 therapy as a safe and effective CH preventative). I started doing this in 2006. You can find my web page at VitaminDWiki at the following link: http://is.gd/clustervitd 'Hope this answers your question. Take care, V/R, Batch
  12. 5 points
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    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 evening hit. I'm not sure of anything, but it's been a rough last 12 months, if B1 help one man... I will try it and see.
  13. 5 points
    Dylan the potato

    Stay Strong

    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 anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong. I see so much unity in this community and so many people helping each other out whether it be with advice straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox.
  14. 5 points
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    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 complete remission of the symptoms. Q3- Do you have another future experiment planned with B1 and CH? A3: We will continue treating the cases which we visit in the next future Q4: For episodics like me, do you think I should start in between sycles or just wait for a cycle to start? A4: For episodics like yours, I'd suggest you to take the therapy when you have the first attack, with 500 mg in an only administration in the morning. Q5 Since vitamine B6 is linked to the Dopaminergic Systems functions, was vitamine B6 examined by your research? Was vitamine B12 examined as well? A5 We didn't examine B6 nor B12. Q6: Would you recommand taking 3 doses during the day of B1 or one a day? A6: We recommend to take the total dose all together in the morning at breakfast. Bruce He sent me these as well as all cases where Dr. Constantini treated diseases with huge intakes of B1 to treat MS, Fybromialgia and Parkinson; all so called auto-immune diseases..
  15. 5 points
    jon019

    5 year cycle

    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 I just don't give a damn....got more important things to concentrate on....nobody hears nothing but positive from me. Getting hit is a bitch....in between hits? life is wonderful. Mind game I guess............ Re work...I get it...used to worry obsessively about how I "appeared". This kind of depends on the type of work and the kind of folks you work with and their regard...or not.... for you...beyond your "ailment" ... YMMV. I just worked my ass off in between hits or inability to function: accepted extra work, extra hrs, extra responsibility, extra anything. I know this sounds glib....and it is the hardest thing to do and NOT always possible....but I figured I had no choice. Additionally, the stress of work was a preventative...until I got home...THEN got BLASTED..... What made the above...and life in general POSSIBLE was OXYGEN!!!!!! I carried an e-tank with me everywhere I went...with a clustermask purchased at ch.com (my favorite possession). I hit that baby with an energy drink appetizer at first sign of hit.....and back to work. I sure hope you got access to O2 ...and with proper technique you will be transformed.................................... Night time hits are particularly cruel...pain, sleeploss, aggravation, etc..... am quoting myself from another post below: When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep. Ya gotta work the mental aspect too. YMMV...this is what worked for me: Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out. Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat.... Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................ Best Jon
  16. 5 points
    Jay176

    Dr Elliot Shevel

    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 aid does not even cover. No tests, no checking me out, nothing. I told him that I wasn't on medical aid and my family couldn't afford that type of money and he said a plan could be made. I will be emailed a quote. As I was in a cycle at the time, I asked him for a script for the medication that my neurologist normally gives me and after I had told him, he said he needed to read up on Verapamil and will email the script to me. I saw him on the Friday and only received the scripts on the Monday. For someone that 'knows' the pain that we go through, there wasn't much urgency to get the script to me and I suffered with many beasts that weekend. (Still have the emails btw) Anyways, I received the quote which I declined and promptly received a call from the clinic offering a smaller surgery at a cheaper cost (About half the price). Apparently they really wanted to help me. I declined this and went to see my old neurologist. When I told him about the surgery, he said that I'm not the only person that has been fooled. Dr Shevel - Your procedure may or may not work but I will never forget the consultation that I had with you. Yes, you may help thousands of people but you didn't help me and your lack of empathy was soul crushing. I am so grateful to people on sites like this that look out for one another and can identify with the pain that we all suffer with. Verapamil has helped me keep my clusters in control and this past week I went for my Vitamin D3 blood test for the first time and my doctor found that my level is very low. Today I started the D3 regimen and that's all thanks to sites like this.
  17. 5 points
    zanycheff

    Please help me

    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
  18. 5 points
    ThatHurtsMyHead

    Please help me

    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 get some trip out of it. Most of us find that the stronger the trip the better the medicine works on our CH. 3) You'll likely get what's called "slap backs" after your first dose. Don't worry, the attacks will go down after the 2nd and 3rd doses. Take each dose 5 days apart (not 4, not 6). For some reason 5 days is the sweet spot for something in our brain to reset. After the 2nd dose you should notice the attacks being milder and slightly further apart. After the 3rd dose most people are pain free, but a lot of people also need another dose. It all just depends on your body chemistry, and the strength of the mm. post questions. (but please read the busting files section). :) J
  19. 5 points
    harry65

    new from south london

    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 and allso was on anti depressents citalipan i was told that these head aches was maybe caused by long term methodone use and maybe its a good idea to get off the methodone,i was perscribed verpmil 80 mg twice a day and sumartripan in jections,the verpmil seemed to clear them for about 2 weeks then i was back to having 3 a day again so i started using sumartipan injections what used to work but the pain used get worse,i would take the injection and have 15 mins of screaming pain and the pain would suddenly stop,but i would have a horrible migran after a hr of having the injection and because you can only have 2 injections in 24 hrs i was having to ride 1 of my clusters allso the injections gave me horrible side affects after a year of having these attacks and using the sumartripan injections and having these clusters everyday and allso trying to detox on the methodone,i was in despair and became very depressed i ended up using drugs again relasping but the herion didnt seem to help after a while,so i got back on methodne and the clusters got worse i was having 6 attacks a day,i wanted to end my days on this planet i was on the floor with these attacks started in my right eye and then it was like someone was hitting with a hammer on my head i was in tears with these,this went on for a 18 months i had 3 five day breaks in 18 months they had got worse and worse.anyway a friend of mine was looking on the internet and sent me a link about using majic mushrooms for clusterhead aches,thats where i found clusterbusters and found the info on the majic mushrooms,i have used lsd and majic mushrooms before when i was younger so new a bit about them and where to find them,so in october i found a feild full of them and picked a load i was still on a low dose of methodone and was still using ssi antidepressants and new that these drugs didnt play well together so i kept the mushrooms untill i detoxed,this took me up to april 2016 i had come off the ssi and was on a very low dose of methdone but i was still gettin attacks everyday and went back to the neurology team where they put me on steriods and gave me oxygen the oxygen used to work a bit but not well,but the steriods seemed to work for 3 weeks the head became less and not as painfull,so in this time i decided to come off the methodone and stop using the sumartripan,so i could use the mm and try the busting,after 3 weeks of total detox i noticed the head aches where not as bad and the oxygen seemed to work better the headaches seemed to ease,so i decided to take the first dose of mushrooms which was six weeks ago i took 1.5 grams for which i did trip i think the mushrooms in england are stronger than in the states because i was off me head,but i noticed a tingling feeling where my clusters were while on mm,the next few days after they head aches had eased and were not as painfull,so 5 days later i took another dose of half a gram which i didnt trip and after that dose they eased even more,then in five days again i took another dose and they are much much better i havent had to use the oxygen as i just every now and then i get a slight pain in the right eye but it go,s,some times i get a slight head ache but it is handleble allso ive noticed my depression has eased from when i took mushrooms,i am now totally clean from all drugs for the first time in 20 yrs and cluster free.all those migrane drugs they had me on i think made them worse.i just want to say thank you to this site you have saved my life.thanks bob.it wasnt the docs that helped me it was clusterbusters.
  20. 4 points
    Hello gang: I need to report in. I'm Checkin' in like Gunga Din. As I posted over a year ago: "However those of you who have let me whine here for the last decade or more know that I keep the [ triptan] 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. " By chance, this year in April which is the inevitable early part of my annual cycle, my mother-in-law brought me a bottle of CBD oil made from Hemp - no cannabis no THC . Having tried all of the crazy stuff above I am open to anything. The beast came knocking one evening in April it was the first of the season that was more than a shadow. I assumed the position on the floor and got my ice bag. Then I took a full ml. of the CBD sublingual. The attack aborted in minutes. I used that small hemp oil vial in a bout 15 days. My research led me to understand the "Entourage Effect " of cannabanoids. (I don't like to drop links in this board so Google it) I got my medical card and bought a CBD compound which is "Whole Plant Medicine". Not enough THC to even contemplate the tiniest buzz, but medially, enough to keep the CBD in concert with the other the other therapeutic compounds in cannabis. I have not had another attack since April. This is the first year in 10 or more years that that has happened. I know CH Father has commented that the results and reports on CBD are all over the place and this I see as I have looked on the boards. However - having been here since the early days of the "old board" I just had to let you know of this amazing outcome. Now - I have felt the beast trying to break in on a few occasions, which to me only adds credence to the results I am having being attributed to the CBD. A PF summer -- who ever heard of such a thing ? I hope to keep reporting these positive results. Wishing you all well. TomSwift
  21. 4 points
    CHfather

    O2 prescription

    Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive. This is all oh so true. In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient. Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH. This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so. Maybe you want to call your insurance co in advance to get an idea. If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to. Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air. I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones. There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit And you might want to get higher-flow regulators. We can discuss that when the time comes. Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.
  22. 4 points
    Dylan the potato

    Having pain downplayed

    So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now. Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now
  23. 4 points
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    No ch hit yesterday, no shadows, no ch pressure on right side or presents of a ch, an awesome day for me, slept all night the last two nights, I'm having positive results, yesterday took 100mg x4 through out the day, still researching how B1 is acting on ch, found this last night " B1 helps the production of cellular energy and has a calming effect on histamine related headaches ". I had a dexalog shot in okc and it had a B complex with it, not sure of dosing.
  24. 4 points
    mit12

    Welding Oxygen

    I woke up at 2:00 this morning with an CH attack, I used my oxygen setup and a aborted the headache! started at 25lpm and reduced it to 8lpm after the headache went away for the post headache time. When my doctor tried oxygen on my headache it did not work, high flow did the trick. Thanks CHfather for pushing me into trying oxygen again with the proper setup.
  25. 4 points
    MoxieGirl

    My literary contribution

    I had posted this back in April and it didn't get a lot of comment. Not that I'm craving your adoration or anything like that. But am curious what people think. Should I not give up my day job? MG Longing to 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 Demon 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 my body is gripped with fear Red hot nails, they pierce and twist in my eye The burning is such that I wish to die Knives cut and rip through my skull As I pace the room and bang my head on the wall I can feel my cranium crack As all my world turns to black For one hour or maybe two How long it really lasts, I dare not tell you For all that time, I pace and I walk Sat on my bed, back and forth I rock I suck on oxygen and drink caffeine I can be quite snappy and downright mean But eventually the nails are removed, as are the blades And the terror within, all but fades I am drained, I am spent My energy is at zero percent I need water, I need food But instead, I lay here unable to move I take one deep breath, and maybe two Before the next sensations ensue This is when the true crying begins As my body shakes from my bones to my skin I am racked with hot convulsions in wave upon wave To this terror I am now but a slave Eventually, even this fades to a whimper As my body begins to shiver Wrapped in a blanket I raise myself up Finally sloshing some water into a cup Today was like any other Yesterday, today & tomorrow, they all blur together Day in and day out, everyday the same Oh, how I wish I could escape this pain.
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