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  1. 3 points
    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
  2. 2 points
    Hey Freud, Fair comments about my post to JH. Too much bravado and not enough factual data... I've fixed that with an edit. Take a look and let me know if it passes muster. Regarding the online survey data, I've kept my reporting of that efficacy data as objective as humanly possible. I'll be happy to show you the survey database this coming September at the Clusterbuster Conference in Dallas, TX. Credibility is everything when talking about efficacy of a CH intervention like Vitamin D3, so I'm not about to risk that credibility by making false, misleading or exaggerated claims. I've too many neurologists, headache pain specialists, vitamin D3 experts, CHers and a growing number of migraineurs following my work. A few neurologists have even been kind enough to provide peer reviews and feedback... Two of these neurologists are CHers so are taking this vitamin D3 treatment protocol to prevent their CH. For reference and for those who don't know me, I'm a 74 year old retired Navy fighter pilot with over 3000 hours flying Navy fighters. I have a dated degree in Chemistry circa '67 from the University of Washington, I've been a CHer since 1994 and diagnosed as chronic by neurologists at NIH in 2005. I'm not a doctor so I don't diagnose, prescribe or treat CHers or migraineurs. What I do is provide information outreach on safe and effective non-pharmaceutical CH and MH interventions (O2 and Vitamin D3). That information is based on feedback data from thousands of CHers I've been collecting since September of 2006 on CH.com with my first posts on the benefits of oxygen therapy with hyperventilation as a CH abortive, on 10 December 2010 when I began posting about my experiences preventing CH with vitamin D3 and the cofactors as well as detailed data from the online survey of 293 CHers following the anti-inflammatory regimen CH preventative treatment protocol to prevent their CH. This survey went online over the Internet in January of 2012. When asked for suggestions or answers to CH related questions about this treatment protocol, I generally provide answers based on what many other CHers or I have found. I also suggest CHers and migraineurs see their PCP/GP or neurologist to discuss the anti-inflammatory regimen and to obtain the essential lab tests for serum 25(OH)D, calcium and PTH. I don't sell anything, nor have I taken one cent in renumeration for any of my posts about the benefits of vitamin D3 in controlling CH and MH here at Clusterbusters, over at CH.com or on Migraine.com... My wife will attest to that fact as she does our books. She frequently points out that I've spent an average of $2,500 a year (out of pocket) since 2006 providing information outreach to CHers and MHers on the benefits of oxygen therapy with hyperventilation as well as the benefits of vitamin D3 and the anti-inflammatory regimen in preventing CH, MH and in promoting improved health since December of 2010. I even spent two weeks in early 2018 posting in Facebook CHer and Migraineur groups. I got booted off Facebook after a couple posts on the effectiveness of the anti-inflammatory regimen in preventing migraines. It appears Facebook's Big Pharma sponsors didn't like what I posted so had me blocked. I've been paying $100/year to keep online survey running since 2012 and my annual dues as a member of the American Academy of Neurology (AAN) as a vitamin D3 and Cluster Headache researcher have cost me $260/year since 2013... My annual travel, lodging, meals and registration costs to attend conferences, meetings with neurologists and to make presentations on the effectiveness of oxygen therapy with hyperventilation and the anti-inflammatory regimen since 2009 have averaged $2,000/year. I've made two trips to Switzerland, two trips to Norway and one trip to Germany to attend meetings with fellow CHers at CH conferences and to meet with neurologist like Prof. Dr. med Ottar Sjaastad in Haugesund Norway, Prof. Dr. med. Arne May at his headache clinic at the University of Hamburg Eppendorf (UKE) Germany and Dr. Todd Rozen, MD, FAAN at his facilities in Wilkes-Barre PA. If you'll check the fine print in the ICHD-III beta website, you'll find Dr. May and Dr. Rozen are in the working group responsible for trigeminal autonomic cephalalgias. Dr. Rozen was kind enough to stop by my poster presentation on results from the online survey of CHers taking the anti-inflammatory regimen at the 2014 AAN Annual meeting in Philadelphia, PA. The reason for the Cowboy getup is simple... I grew up on a horse and during my poster presentation, I didn't want anyone thinking I was a neurologist. What most people don't know is I've been quietly going down the rabbit hole in search of answers that will help me define a more detailed pathogenesis of CH and MH as well as determine how and why vitamin D3 and its conutrients/cofactors are so effective in preventing CH and MH. I track all vitamin D3 RCTs as well as cluster headache and migraine RCTs on clinicaltrials.gov and weekly editions of the AAN journal Neurology. This research has taken me into the realm of molecular biology and gene mapping. There are quite a few neurologists doing this kind of research using anti-CGRP monoclonal antibodies as CH and MH prophylaxis, but none using vitamin D3 as a CH or MH prophylaxis. I'm a member of PLOS - a nonprofit publisher innovator and advocacy organization, the Cureous journal of medical research, and Researchgate where leading edge studies and scientific papers like this are published. That said, there are a growing number of physicians now trained in the Coimbra vitamin D3 protocol for preventing multiple sclerosis. Dr. Coimbra has treated over 2000 of his multiple sclerosis patients with his vitamin D3 protocol and his patients have a 95% complete remission rate. So why am I doing all this? It's clearly not for the money... It's also not an ego trip seeking credit for the many findings made public about the safety and efficacy of oxygen therapy with hyperventilation as a CH abortive or the anti-inflammatory regimen as a safe and effective CH prophylaxis... That credit goes to the thousands of CHers who took the leap of faith to try these two CH interventions then took the time to provide their feedback. That feedback is what motivates me to keep doing this as I know the terrible disabling pain of our disorder and that the good news is it doesn't need to be that way. By the way, I'm a strong supporter of CHers using psilocybin or seeds as a safe and effective CH prophylaxis. The data I've collected to date from CHers here at Clusterbusters indicate the vitamin D3 protocol and psilocybin treatments are not mutually exclusive. Although the data is largely anecdotal due to small numbers, It appears these two CH prophylactic treatments have a synergistic effect when taken together. Take care, V/R, Batch
  3. 2 points
    Pebblesthecorgi

    Hello - First timer

    You are on a crapload of meds. Establish if they work or not and if they don't wean them away. Familiarize yourself with O2 for aborting and if it works it will help confirm your diagnosis. Also I suspect most "alternative medication" success stories also respond to O2. So if the O2 works learn about busting and if you are comfortable and prepared consider trying it. Good luck.
  4. 1 point
    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.
  5. 1 point
    Zoejarvis, When my clusters started, a friend on another board told me about Clusterbusters, and what they used to 'bust' clusters with. Like you, I shied away from it. I did bookmark the site, and said to myself I'd use it as a last resort. About 4 years later, after trying EVERYTHING the doctors could give me, and after being on Topiramate for a year, I opened my calendar and was selecting a date to kill myself. I decided I'd give myself 1 year to find a solution, and if things weren't any better, then I'd had enough. I was getting 2-5 attacks a day every couple of days at that point. Just as I picked a date, I remembered about this forum, and signed up. That was 8 years ago. To say busting, and the people here saved my life, is no understatement. By all means, try everything you can. Try everything you feel safe trying. And one day, if you find it doesn't work for you, we'll be here and will help where we can. I was nervous at first too, but I went slowly, followed the advice given, and am doing well. Be safe my friend. Mox
  6. 1 point
    CHfather

    strange changes to my clusters

    mark, I wish I had something valuable to add, but just a few thoughts after having read this thread: 1. Your oxygen seems to be varying it its effectiveness. A weird thing that some people have found is that when the O2 in a tank gets low, using O2 is less effective. "Low" can mean a third of a tank left, or even more than that in some cases. If you have a full tank, I'd consider switching to that one. Also, are you downing some caffeine as you get on the O2 -- for example, an "energy shot" such as Five-Hour Energy, or you could even try straight strong coffee. You mentioned going up to 15 lpm -- at that flow rate, is the bag always full when you want to inhale, or are you having to wait, or to breathe more shallowly, and therefore less effectively, than you could/should be? If so, you want to get a higher-flow regulator. 2. Same variability of effectiveness seems to be true of your Imitrex injections. I'm a little confused because you talk in one recent post about Imitrex pills. You also mention that you ran out of trex. Most people with CH can split their trex injections and still have them be effective. Given your mixed success, I can't say if this would work for you, but the info is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 3. If O2 and trex are generally not fully effective and high-dose verapamil didn't work, it's possible that you might have a CH "lookalike" condition, such as paroxysmal hemicrania. That condition responds to a medicine called indomethacin but is generally not responsive to CH treatments. There are some other headaches for which people have reported some CH-like symptoms (cervicogenic headaches, for example), and I did read once that there are some traumatic-brain-injury related headaches the look like CH but are not. 4. Batch made some suggestions that you would want to consider: the ketogenic diet; Benadryl 25mg every four hours and at bedtime; and restarting the Vitamin B 100 complex. Those all seem worth trying. Batch is also big on drinking 2.5 liters of water every day. If Batch says it, I think it's worth trying.
  7. 1 point
    have not had a shadow or attack since Sept 2016. Don't drink , don't smoke, make sure I stay hydrated and I microdose shrooms 3 times a week. Just dry them up and grind them into .2g gelcaps and treat as normal preventative meds. They seem to have other benefits also for depression and productivity. Used to always get CHs around the change of the seasons or from overheating playing sports in summer but nothing since. I still get a clammy feeling around my temples at the seasons changing but just no more CHs or shadows. This site led me to using shrooms, thanks so much for that, would never have discovered that on my own.
  8. 1 point
    FunTimes

    Shadows

    I do get this at times. I can sometimes make that feeling go away with stong coffee, 5 hr energy drink, any type of energy drink like monster or redbull. I have also has success with strong ginger tea for days like that.
  9. 1 point
    johncluster

    Sumatripton help

    there is no money in O2 for these drug dealers , so they don't wanna offer it, But triptans are more expensive and will cause rebound headaches so you gonna see the doctor more often. Welding 02 rental gonna cost you $30 a bottle.
  10. 1 point
    bb1283

    Oxygen Mask question

    Mine is similar but does not have the knob or outlet or whatever that is above the T-value. Just smooth up there. Could that be where air can come out that I don't have?
  11. 1 point
    VocTeacher

    Any input

    Dallas Denny my Nero doc said the same thing I have CH for a few years when ever I get a cycle I have neck pain it would be my 1st indicator that a cycle was going to start but I didn't have any neck injury, Freud your so right I explain to my wife that it consumes me which in turn causes anxiety and depression I try and live a normal life but always fearful that an attack is going to happen Thanks
  12. 1 point
    johncluster

    Avoid attacks for a short time

    triptans made my cycle always last too long,,3m or so When I went without tripans the cycle was shorter and the frequency wasn't daily but 2x week I 'll suffer with oxygen before I took another triptan in my life. I would only take triptan on a plane at this point. Triptans help but are definitely a huge trigger and can turn you into a chronic from episodic , speaking just from my experience.
  13. 1 point
    Mine starts in the neck and then move to the jaw and teeth before attacking the right eye.
  14. 1 point
    Hi everybody, Lately I was thinking of why the busting helps so many of us (I think about this very often). I already have had a lot of success with meditation during a rising attack and thus it becomes more and more important for me. I am convinced of the fact that long term meditation can also have a large impact on the brain like the mm have after busting. Studies have shown an increase in grey/white matter in certain brain sectors, while other areas are decreased. I found out that certain meditation techniques affect different brain sectors. So my naïve approach was to compare the brain scans of longterm meditators with the CH scans from wikipedia. As many of you know, the hypothalamus is active during a CH attack and also the distribution of grey matter is higher in this region. The understanding of meditation seems to be still quite unexplored but I found some medical papers and also some talks and websites from scientists. Unfortunately, I found no match for Zen and Mindfulness meditations. However, at transcendental mediation (TM) I got lucky . So the right meditation technique seems to be an essential key! It was found that TM can decrease the activity and blood flow in brain areas close to (and also in) the hypothalamus. Furthermore, it seems to have a large impact on the amygdala - that part of the brain which controls anxiety thoughts. According to the PET scans from wikipedia, this region shows also high activity during an attack. I also have heard of improved anxiety feelings from e.g. cancer patients after the treatment with tm. Both, mm and TM can be used to treat PTSD. Proceedings of the Endocrine Society of Australia, 1976 even outline this: "The results suggest that TM produces a marked acute and chronic reduction in trophotropic anterior hypothalamic activity but little effect on ergotropic posterior hypothalamic function." (Yes, I know this was a long time ago but I just get started with that topic.) Furthermore, this technique also seems to change the serotonin behaviors, which is another connection to CH. Personally, I have the feeling that this TM is worth a try. I was googling around and found no connection between TM and CH yet. Maybe it is something that can bring us relief, even though it takes time to reach a high practice level. I think that the transcendence thing could possibly be connected to CH. So a lot of us find relief by trying out diets and unusual behaviors. If one, in turn, thinks about what really helped him and reaches a certain level of awareness, things can end up worse again! It happened a lot to me. From that, I deduce that placebo and awareness seem to play an important role. So developing a "I don't care whatever..." consciousness and getting rid of anxiety doesn't harm at all! At last a few sentences about TM. Transcendental Meditation was being invented in the late 50's by a yogi and it was very famous back then. Unfortunately, over the years it was commercialized by many people. Those are quite active in the web and you will find lots of advertisements. The price to learn this technique is not cheap according to them (around 1.200,- $). However, it is not necessary to join a course! The whole principle is based on mantras which you have to repeat very often in your minds. The only thing that matters is that you don't connect anything with the mantra. For example if you choose the word "apple", a thousand things would run through your mind! I took the mantra "So ham", which means "I am pure" (Don't ask me why, I just needed a Mantra). So what you are going to do is to repeat this as often as possible in your minds. If some thoughts come into your mind, you simply go back to the mantra. And that's it. You need to do this 20 min in the morning and in the evening, receptively. Additionally, you also can use music in the background if you want. The purpose of this is to bore your mind literately. For myself, this calms my entire body down. I just started a couple of days ago with that technique but I am planning to keep going at least 6 months. Maybe there is a chance to change anything in my brain! If you want me to keep you updated, I will do so! Cheers, M
  15. 1 point
    Milelli, Yes, keep us posted on your progress. There seems to be a lot of pieces in this puzzle. Keep posting anything you turn up. The music I listen to is very relaxing and seems to be producing miracles. It's pretty much like meditation, just trying to clear my mind and chill. Things have really improved since I started to do it 24/7.
  16. 1 point
    There are two problems. The first is like everyone mentioned, the remission period can be so very long (especially if it's extended with busting), that it's hard to know for sure. But also, a lot of people stop coming to the forum and posting when things are good. Which is only natural. When you're getting hammered by the beast, you want to come and talk about it and get help from others suffering too. But when the beast goes away, you want to get out and live life. So we often don't hear from people for years at a time when things are good. I've done it. I've drifted from the forum for long periods, then came back when the clusters or migraines got bad again. Life is what happens between headaches. MG
  17. 1 point
    I remember someone here on the forum who got a remission of 30 years I believe and then it came back when in his seventies. So, when it goes away, best to consider it as a remission and not think you are 'cured'... to avoid surprises later on
  18. 1 point
    Freud

    Sumatripton help

    You should insist on it, the script should be for 15-25LPM. My doc had a form from the Oxygen supply co. On the east coast Apria healthcare is very easy to deal with. The drivers all know at least one pt with cluster headaches. Ask for the Msize tanks and 3 tanks has been perfect for me I either call when I start using the third tank and they replace 2. Or I wait until I’m half way through the 3 rd tank and I get next day delivery.
  19. 1 point
    swiftlaw

    Cluster rules

    Love this - My #1 is; Reef early.
  20. 1 point
    FunTimes

    Hello - First timer

    Welcome to the party! Sorry you have to be here. A few things you will want to look into. Vitamin D3 posted on this site by Batch, this has helped alot of our members here and is just vitamines you can get from a local drug store like CVS Rite aid or Walmart Oxygen to abort your attacks with a high flow regulator and the cluster mask. This will help you get off some other abortive medications you may take. 5hr energy drinks can help hols a attack off until you make it to your oxygen and can also sometimes stop a cluster from developing into a full attack. Melatonin at bed time can help you sleep a little better and will help your overall mood from lack of sleep. and look on the members only boards, Theroy and busting stories, they will give you some ideas on how others use alternative methods to keep cycles from starting. Lots to read here and ask all the questions you have someone else probably already had that same issue and can tell you what helped them
  21. 1 point
    evannoots

    Cluster Headache Poem

    I wrote this poem early last week laying awake while dealing with shadows.. Theres a room inside my head with the devil locked inside I'm not convinced that he wants out but still every night he tries He bites and chews on every nerve and carves his name into the wall He plants his back and digs in his heels and tries to push out my eye ball
  22. 1 point
    mit12

    Cluster Headache Poem

    I can not begin to put into words what it is like to experience clusters. Your poem is amazing.
  23. 1 point
    MoxieGirl

    Cluster Headache Poem

    Thank you Batch. One day, I'd love to perform it (or get a good actor to perform it) on stage. I think it would be very powerful. I might have to approach the local amateur dramatics people and see if I can find someone interested. MG
  24. 1 point
    CHfather

    Oxygen Mask question

    I don't have this mask, but it has always looked to me like you have to take it off to breathe out, though I'm certain that Mit' knows what he's talking about. In any event, it won't do you any harm to take it off to breathe out, as long as you don't inhale any room air, and you might try using the tube and not the mask, which some people prefer. If you had flaps/gaskets on both of the holes in your previous mask, it was okay to use it as you were using it. Most of them have one gasket and a bunch of open holes on the other, and that's the problem with letting room air in. ClusterO2 Kit should be more comfortable, give you a tighter seal, and hold more O2 in the bag.
  25. 1 point
    Jazz

    Psilocybin grows new brain cells

    This just makes me wonder about my long time theory about why "we" get CH. We are the mutating part of society for where and what the future human race is preparing itself for. So it is only natural to resort to nature to ease us into the transformation. "As head researcher Dr. Briony Catlow explained to Real Clear Science: ”Memory, learning, and the ability to relearn that a once threatening stimuli is no longer a danger absolutely depends on the ability of the brain to alter its connections…We believe that neuroplasticity plays a critical role in psilocybin accelerating fear extinction.” And I believe that all mutations (evolution) throughout existence came with a selective group heralding these changes through some pain. What are we gaining and what are we losing? And why in the primitive part of our brains? Life full of questions and maybe possible explanations? Jazz

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