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  1. I got an appointment with Dr. Marmura at the Jefferson Headache Center!!
    7 points
  2. Firstly, I am glad you found any relief at all. The number one accomplishment I can't take for granted for any CH sufferer is relief. However, it's still to early to use the word cure. I have had an uncle who is currently in a 15-year remission, and even he doesn't know what happened. I believe if more stories such as yours are empirically followed and can stand the rigorous scientific scrutiny, then we shall have all the solutions we ever need. But first, we have to document it and follow it up. The past threads about this doctors methods indicated that the results were mixed. Some people got relief, and others didn't get relief. You mentioned that he is now using a new technique, which is good to know. Currently, we have you his patients, we have him and we have time. Let's continue to keep the records and see where it leads. Just know that even though I, for one, appear skeptical, I am cheering for your relief and hope it sticks. Now that you are going back to South Africa, please ask the good doctor to put up his work for international peer review. That would be a nice step in the right direction. I know this disease is not statistically significant enough to warrant a lot of attention from the sceintific community but I believe the solutions are out there and we should keep looking.
    5 points
  3. Wow, it's been quite a spell since Danny boy put up a post about Quack Shevel!! If you're new here please don't get your hopes up over this BULLSHIT!!! DD
    5 points
  4. Here's an especially pertinent quote from Bob Wold on the the topic: " We have had the medical records of a couple actual patients that went through this treatment, with the permission of the patients, reviewed by one of the top headache specialists in the USA. He reported that the procedures used are unnecessary, ineffective and dangerous. This includes both the surgeries often involved (numerous) and the types of medications often used in large doses." "There are many people that report either a trigger to start a cluster cycle or an unexpected end of a cycle following all sorts of surgeries. From giving birth to minor surgeries to major surgery. No one knows why surgery can have this effect but in my experience it appears to probably be related to the different types of anesthesia used. Local or general. This could be a connection to why some people get relief with Ketamine. I would never recommend someone in cycle to schedule open heart surgery as a treatment for cluster headaches, even though you might wake up from surgery out of cycle." To be clear, the treatments offered at this SA clinic do not include open heart surgery, but the number of stitches I've seen on patients is probably close to the same number." "This is just one theory of why some people may report even temporary relief from these treatments but most experts that have looked at these treatments deem them as dangerous." Bob Wold
    4 points
  5. There has been plenty of discussion of Dr. Shevel here, most of it quite harsh. For those who are new, here's a sample thread, with includes an extensive response from Dr. Shevel: https://clusterbusters.org/forums/topic/2898-dr-elliot-shevel/page/3/ Of course, Douglas Ward, you have no idea whether you have been "cured." We wish you well. Even considering the resistance of conventional medicine to new ideas, it does seem quite surprising, doesn't it, that only one person in the world is practicing this "cure"?
    4 points
  6. For the longest time, I used to get pain/tension right at the base of my skull on the right side and within minutes the beast smacked me upside the head. Been a few years since that has happened, but that kinda stopped when they went insane on me after stopping a drug the name I forgot but anecdotally has seemed to jack up a lot of people after stopping it. Likely it is because the low grade pain and ache from the shadows have overridden it for me, but you can use it as a signal to get your ass on the o2 and maybe hit before it even starts.
    3 points
  7. An abortive that works once or twice, then nuthin'? Unfortunately that is a familiar scenario to me. Example: Back in olden times I tried the newly reported-as-effective jamming of hot pepper capsaicin cream up the nose on the affected side and it aborted a hit! That one time. Following that it was just all nose pepper fire, no relief. I'm also the type who has found during the first days of a cycle, all kinds of stuff like lower flow O2, breathing freezing cold air, vigorous exercise can abort an attack, but as the cycle ramps up, forget it.
    3 points
  8. I am, by nature, a very 'supportive' individual. In this instance, I support someone that I have known for over 10 years, lives in S.A., and went to this man for treatment. She could not use her lower jaw for about 6 months after and ate everything through a straw. So, that is not a good promotion for his work or work ethics. With her experience added to yours we have a success rate of 50%. In addition, you still get them on one side, just not both. With that rate of success, I would not let anyone near me apply his method to my head! Please point me to the proper source for the statement above. I had no idea the 'cause' had been found!
    3 points
  9. I don't feel that Dallas Denny's frustration is misplaced. The claim in the above quote from Deborah Zale can immediately be identified as entirely false, but @Douglas Ward I don't think you'd necessarily realize that at this point in your membership here, since you appear to have jumped in with immediate single minded intent to spread your message. Seriously consider scaling back your frequency of posts (you've hit the ground running here with a lot of posts right off the bat), and be aware that posting of false claims including the one from Deborah "would love to slap all of us in the face" Zale that Bob Wold relentlessly attacked her (??!!) is offensive.
    3 points
  10. @Douglas Ward So now you think it's cool to post something from someone dissing our founder and all of us who have been here day in and day out for the last 15 years answering questions and supporting other clusterheads? Just shaking my fucking head at the audacity of some folks.....the rest of you can put up with this bullshit if you want but I'm out...
    3 points
  11. Alx, We would love to see you if you are able to make it. Hosting a conference in another location in Europe would require additional funding, as well as very dedicated volunteers. The Scotland location has a number of benefits, and one of those is that our Board Member Ainslie Course lives nearby and oversees the conference including negotiating local deals. Hosting another conference next year will also be dependent on funding. I hope this answered your question.
    3 points
  12. Just an update on this 3 months out. Still going good. Had a 15 day break from any clusters in December, Small hit on Dec 30th lasted maybe 10 minutes with 02. Jan24th was my next hit that lasted maybe 5 minutes on the 02. Not saying this is any type of cure at all but something you may want to look into or ask about. It is a huge improvement for me.
    3 points
  13. I switched insurance last November (got married and joined my wife's plan!) and have had an awful time getting scheduled to see any type of doctor. I have some expired sumatriptan but historically the sumatriptan has given me a very bad reaction so I'm avoiding it as much as possible. Hoping to get some non-medical oxygen this weekend! Fingers crossed! And I finally have a doctor's appointment scheduled for early April. Hoping I can bust the cycle by then though!
    2 points
  14. When my CH started it was only 20 minute attacks and just a couple few hits per week. It has progressed to more of a classic full blown CH since. With grandma being diagnosed it def smells like CH or combo migraine ch. I hope you can get it figured out! Great forum you are on. GL!
    2 points
  15. Wish I could give you a good answer to the "why" part, and I suppose it's possible that your caffeine use was somehow keeping them at bay, but I don't think anyone knows the practical "whys" of how CH begins. I also don't know what to say about the pattern of your attacks, which is indeed unusual. As you say, your symptoms sound CHy, for sure, although 10-20 minutes is on the short side for attacks (but again, not completely unheard of). Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period? Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)? Since you're new to all this, you might take a look at this "overview" file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    2 points
  16. Hi @Douglas Ward, So happy you are experiencing reprieve from these awful attacks! Please keep in mind that this site has rules with regard to posting content as "fact" without any peer reviewed studies so please be mindfull going forward. I hope you continue to experience pain free days and look forward to any reputable studies you may have to share. Take care!
    2 points
  17. Can you get her user name? I think that 'most' things that help should be applied here perhaps. I had a mysterious 10 year full remission two decades ago too, but those suckers happen on their own from what I can gather. I was chronic and they just stopped one night. But, I was not cured and when they returned they were all nocturnal and that was a first. So, yes, remission is possible, but don't count on a cure. You and Dr. Shevel have the same hairline, jawline and smile! Remarkable....... I am delighted for you being pain free currently! Enjoy it and may you never experience another cluster! And I definitely share your delight with your results. The word 'cure' is hard to swallow here and for good reason. ATB
    2 points
  18. @Douglas Wardwhat gets me with your posts , is you jump in with i have the cure , then you say you still get attacks, so when people question you , you say its just my experience, so it's NOT a cure!!!!!! It's just your experience!!!!!!!!!. Then you attack the group , if you are cured from CH buddy I would just leave this group , NO need for you to be here ,
    2 points
  19. I have her contact information and yes, she is still pain-free. I can contact her again and maybe get her to reply on this form as to the effectiveness of this treatment but yes, it worked for her still.
    2 points
  20. Redbeard, one thing you may want to look into is the D3 protocol. use the search bar in the upper right corner and you will find a lot of information on it. Developed by one of our members (xxx) AKA Batch. Just over the counter vitamins.
    2 points
  21. Unfortunately ever since my very first cycle back in 2020 I have had pretty bad shadows year round. Some days are much worse than others, especially if I forget to take the curcumin and turmeric. I mentioned the new users banner because there are many things you can try to not only deal with shadows but also possibly skip through a cycle. I can elaborate a bit more if you like but it will require your post to be moved to something like theory and implementation..
    2 points
  22. This lady's video has been on the internet for over 8 years now and she was a member of this forum. Can anyone please find her and find out how she is doing? Is she still pain-free?
    2 points
  23. Hey Readbeard, Yea I get really bad shadows pretty much all the time as well. At times I feel as if I have vertigo Some see them as a precursor to a full blown attack. For myself they are somewhat a part of my daily life. I do get a good deal of relief from taking a daily dose of curcumin mixed with turmeric and others have decent responses to ginger capsules. There are other methods of dealing with your CH that you may want to check out (some of them have helped me with my shadows as well) that can be found by clicking on the blue banner at the top of each forum page (new users please read here first).
    2 points
  24. I understand that , But the word cure shouldn't be used , it give false hope
    2 points
  25. Mate I'm not saying I don't believe you , I'm just saying from my experience their i s no cure , and yes I have CH have done for 44years , and yes I've had a rope around my neck on 3 occasions , my cycles last 6 months at a time 8 to 15 attacks every day and through the night , , I've banged my head on the floor the wall I've even had my partner knock me out with a frying pan , I also stab myself in the leg with a knife just to try to put the pain somewhere else , so yes I would say I have experienced CH ant it's worst !!!!!!!!!
    2 points
  26. I do not doubt your story one single bit because it is your story. I am hoping and praying you keep pain-free no matter what worked. However, I would like you to know there are remissions. I have an uncle who has been cluster headache-free for 15 years or more years! Even he doesn't remember what he did. He says my Dad had them worse too and that My grandfather had them until he passed in his 80s. I am increasingly finding people who find unexplained relief or remissions, but I will not be calling anything a cure for now. Please follow this post up with the great news of your relief every now and then. I am interested in your progress. In my first encounter with remission, I was as happy as myself. I would often think that I had discovered the winning formula only to go back to the drawing board during the next season.
    2 points
  27. Gosh dang it @CHfather nothin like knocking the thunder clean out of the sky!!!
    2 points
  28. Clusterbusters is excited to open registration for our 2nd U.K./European conference. This is a great opportunity to support, educate and advocate. Join us for a weekend with speakers including neurologists, patients, and caregivers. The agenda will include safe rooms, treatment workshops, demonstrations, and the opportunity to share experiences and learn from others, collaborate, and have fun in the vibrant city of Glasgow! We look forward to welcoming you! https://cbglasgow2024.planningpod.com/
    2 points
  29. I'm in NC and it was covered last year. Lincare is the provider here and several offices knew of it when I called just to see how far the 'word' had traveled last year.
    2 points
  30. I'm in Indiana (near Louisville, KY) and I have my O2 approved by my Medicare plan. My O2 company refused to run it at first, I told them to humor me and they called within 24 hours saying it was covered (they were shocked...I was not). Anyway different regions can be different, ALSO make sure the O2 company runs it- ask them to show the denial
    2 points
  31. @spinyhas been successful getting MC coverage for O2 I believe?? The original approval was at least a year ago so you'd think it would be common knowledge regionally by now???
    2 points
  32. Thanks Bejeeber.. Yippee so will test the vodka… with much trepidation i had a wine the other day, expecting the worst, but no attack :))
    2 points
  33. I have the same experience as you xboss.
    2 points
  34. Ok so one night I was in pain and didn’t know what to do with myself, so I threw myself in the shower and stood under the water hot or cold and let the water beat at the top of my spine and within 5 to 10 minutes the pain had completely disappeared, so I tried again next time and it worked and so on and so on and almost every time I feel a pain coming if I’m at home I’ll jump in the shower quickly and let the water beat at the top of my spine. it’s not a fix to get rid of them completely but it helps with the pain at that time, I get them everyday and night every few hours for an hour ish each time and has been going on for over 2 years so the relief from pain when I’m home is so good and I feel perfect afterwards. Please try this on your next attack and let me know if it works for you, I really hope it does, patiently waiting for someone to say it helps them too. xxx
    1 point
  35. https://clusterbusters.org/study/ut-houston-batchs-vitamin-d-regimen/?fbclid=IwAR26zK4jCbwyL2LIkcnVOkkj7__c_raUHVbrq08POiltlRiz148Kfsve5wU
    1 point
  36. Sean, it literally is that easy I am living proof of it. The flight from Newark to Johannesburg is 16 hours so on the way there you may have a headache that’s the terrifying part once you’re there I can show you the hotel that is 10 minutes away. They work with him all the time. it’s a wonderful place the people that run are amazing, there’s a shuttle service that takes you from the hotel to the clinic and back if needed the round-trip flight for me from Houston is about 2200. The hotel is about $40 a night. The rental cars about $30 a day. The weird thing is you have to drive on the wrong side of the road with a bunch of crazy South Africans, which is a whole other experience lol.
    1 point
  37. I’m sorry to hear that my friend I promise I understand. I hope you can find some relief. I’m in no way trying to argue. I’m just trying to share my experiences because this was the only thing that worked. They gave me more medicines than a lab rat none of it worked. All did was make me crazy And worse. I am going to go back hopefully in the next few weeks. If work allows to get my last two spots on my left side zapped like I said, I went from five screaming into a towel category 10 headaches a day for four years straight I had 10 months of pain-free living now my left side , maybe once a day I get a category two it was nice to send the oxygen bottles back that I lived next to for years as I’m sure you do. Thank you for your feedback. I hope you can find some peace and pain-free. I will pray for you.
    1 point
  38. I don't Know if am the pessimist or not but the remissions in Cluster Headaches make cure claims very very hard to believe.
    1 point
  39. This is surely a dumb question . . . Do you mean the very top of your spine, at the back of your head, or the place at your shoulders where your neck begins? I ask because as I was imagining what you describe, I was thinking top of shoulders, in part because I was picturing this as another way to deal with all the muscle tightness around that area that CH creates. Hot or cold just as good, eh? I won't be able to try it, either, but I'm hoping someone does. I'm sorry that I'm just coming to your threads (I was away for a while). It's an awful situation. I'm sorry. I'm not going to grill you about symptoms, but I do have to join with the others who have said it doesn't sound like CH, hardly at all (neither the symptoms you have mentioned nor the resistance to pharma nor even the diagnosis). Doesn't really sound like HC, either, but (again, you don't have to respond to this -- I'm sure you're tired of it) when you say in your other thread that you tried indomethacin, it is often true that indomethacin is not tried at high enough levels for long enough to really tell if it works. I would consider trying busting, as others have suggested, if only to see if it might help, and also the vitamin D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/), which seems to help with many "headche" conditions, including CH. The Basic Busting Process 1. Take a psychedelic substance every five days until attacks are stopped. This is sometimes called “dosing.” Typically, it will take roughly three doses five days apart to stop attacks, but it could take more or it could take less. 2. The typical substances used are mushrooms containing psilocybin, LSD, or seeds that contain the ingredient LSA. All of those substances are typically effective at treating CH, but people may experience different results with different substances. Mushrooms - https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/ LSA Seeds - https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ 3. The basic idea is to take enough of the substance to effectively treat CH but make any “trip” experience as tolerable as possible. Some substances have less, or different, “trip” effects than others (seeds typically have virtually no trip associated with taking them), and people have different “trip” tolerances. 4. The right frame of mind is important for dosing. The issues in this regard are often referred to as “set and setting.” 5. No medication or other substance that might block the effectiveness of busting should be used for at least five days before any dose of psychedelics. The most typical “blocker” in this regard is triptans, such as Imitrex or Zomig, but there are others. Blockers are discussed in this file [https://clusterbusters.org/forums/topic/687-6-playing-well-together/ 6. Dosing with psychedelics can cause what are called “slapbacks.” These are CH attacks that occur at different times than a person’s typical attacks, or are more severe, or both. Usually these occur on the first and second days after a dose. Not everyone gets them. 7. Many people bust to prevent future cycles (or a recurrence if they have chronic CH). That entails dosing at regular intervals when out of cycle. People use different dosing schedules for this, from once every couple of months to once every week or two; each person has to use trial and error to find the schedule that works best for them.
    1 point
  40. @Sbr, as far as I know, national Medicare has made O2 coverage optional for the regional Medicare offices. I don't know of a more recent policy statement (but maybe there is one). It has been my understanding that practically all of those regional offices are authorizing coverage. The legal language says, "[C]overage determinations will be made by the Medicare Administrative Contractors under section 1862(a)(1)(A) of the Social Security Act, as allowed and described in Chapter 1, Section 240.2 (Home Use of Oxygen), Subsection D, of Publication 100-03 of the NCD Manual." The Medicare Administrative Contractors [MACs] are listed here -- https://www.cms.gov/medicare/coding-billing/medicare-administrative-contractors-macs/who-are-macs -- and I suppose it might be feasible to call yours and ask.
    1 point
  41. I like ‘Nuclear level triggers’ / like a rocket to K10
    1 point
  42. Yes agreed Xboss. , a lot of the time I rely on that predictability with beer to bring it on.. face the music.. but always to have my go to’s nearby/codeine/suma nasal spray/paracetamol/ etc oxygen doesn’t work for me unfortunately. ‘between the Devil and the deep blue Sea’
    1 point
  43. I like beers and do fine outside of a cycle. When the cycle is near I will get kip 5 pain about an hour after drinking some for about a week then it's full blown attacks if I drink a beer in cycle.
    1 point
  44. Thought I'd watched them all but somehow I missed this clusterbusters YouTube video.....until just a few minutes ago!! I've had the pleasure of meeting and getting to know almost everyone featured several times over the past 13 years! Be forewarned, grab a hanky or some tissues before watching as this video may result in eye leakage...
    1 point
  45. I've been using a generic oxymetazoline nasal spray for quite a while now with good results. It's best to use it as soon as the headache starts.
    1 point
  46. I see that its been over 3 years since I posted this in 2018. My cluster headaches only happen in periods of 2 - 4 weeks in spring and fall. Since 2018 I have used nasal spray to combat them quite successfully. I found out that there is a certain nasal spray that works and some other dont. I have used Drixoral NO DRIP spray and find that its the only one that works. I believe the only reason why it does work is because the medicine sticks to your nasal passages and keeps working better than other cheaper sprays that just drip down your throat. Im in a middle of a really bad cluster period right now, and I have been using cheap nasal drops, guess what they did not work. I almost gave up until I went ro drug mart and got No Drip spray last night. So this morning i was awakened by the headache onset and I sprayed 3 good long prays in my left nostril, 5 minutes later the pain was gone. I still had the restless feeling you usually get, so I took my dog for a long walk, came back and started doing chores and fixing stuff around the house. This is a miracle medicine that works wonders, where yesterday my headache started at the same time at 7am and I was in a disabled state for half of the day. Today im feeling like being born again lol
    1 point
  47. For all you Amazon shoppers out there...and I know you are out there.... They have a program where you can designate s small percentage of your purchase to be sent to your favorite non-profit organization. Clusterbusters is registered and would appreciate it if you would take a percentage of Amazon's millions billions and have them donate to our cause. A direct link to start shopping and donating: http://smile.amazon.com/ch/43-2081926 Thanks very much, Bob Wold
    1 point
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