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  1. 3 points
    jon019

    Busting the Clusters

    Hi Daniel...welcome.. Looked it up.....Grandpa powder = caffeine+aspirin+paracetamol. Caffeine is our friend...the powder gets it there quicker....but careful re longterm use...the aspirin and paracetamol in there can have significant negative side effects... What is the availability of energy drinks in SA? Anything with at least 100 mg caffeine and 1000 mg taurine (caffeine booster among other things) taken quickly and in my case, super cold, will get ya the needed effect (blood vessel constriction) quickly as you crank open the OXYGEN tank. Speaking of OXYGEN....if your CH progresses (likely but let's hope not!) you're gonna want an effective, quick, cheap, safe, medically acknowledged, side effect free, front line BEST abortive. That would be O2! Dunno what your med system is.... but you might wanna start now looking into how to get the right script and the logistics of obtaining. High flow (15 LPM) or a demand valve type, proper non rebreather mask, and proper technique.... has saved the life and/or sanity of many a clusterhead.... In the meantime.... look into the vitamin D3 regimen...also quite effective for a high percentage of clusterheads... Best Jon
  2. 3 points
    Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG
  3. 2 points
    jon019

    Busting the Clusters

    Yo Daniel, ....no intent to rag on you for what works for you....but I believe in informed decisions and cost:benefit calculations....only you can do that for you... ...one of the soul crushing aspects of CH is that what works today may not work tomorrow...for no discernible reason.....so: …"to ensure peace one must prepare for war"....now...not after Pearl Harbor.... Best Jon PS: to be clear...caffeine is good...and a lot of it at the right time is better...for clusterheads anyway...
  4. 2 points
    Siegfried

    Busting the Clusters

    Hi Daniel, Really appreciated you tell us what is working for you ! It's great people do that ! Some methods proposed here are as eccentric as it can be but who cares. Even if a million try it and there is only one patient for who the method works, that is already a huge victory Best Regards ! siegfried
  5. 2 points
    Siegfried

    Sumatriptan Help

    Hello Nikki, I am not sure if triptans can use rebounds but they definitely can cause Medication Overuse Headache (MOH). This is a different headache and IHC has a proper classification for it: ------------------- 8.2.2 Triptan-overuse headache Description: Headache occurring on 15 or more days/month in a patient with a pre-existing primary headache and developing as a consequence of regular use of one or more triptans on 10 or more days/month for more than 3 months. It usually, but not invariably, resolves after the overuse is stopped. Diagnostic criteria: Headache fulfilling criteria for 8.2 Medication-overuse headache Regular intake of one or more triptans1, in any formulation, on ≥10 days/month for >3 months. ----------------------- Now its a bit a choice here between the pest and cholera. Or you take your cluster attacks as they come without MOH risk or the clusters are so painful that MOH is a small price to pay for getting rid of them. Sumatriptan injections are suggested here. This is indeed more effective against CH attacks and its presented as the standard treatment but also keep in mind that the injections put more pressure on the heart than the pills. When I have a CH flare-up, the attacks follow each other up in rapid succession with continuous background pain in between. So for me the pills are the safer option than injections. I do not use injections but a nasal spray in the worst case (Zolmitriptan for both the pills and nasal). I can also tell you that, if you decide to use the pills, there are much better triptans available than Sumatriptan. You have fast acting ones such as Eletriptan and Rizatriptan or slow acting ones like Frovatriptan or Naratriptan. Having said that, keep trying with the oxygen. There are several masks, breathing techiques possible you can try as Chris pointed out but if you can get it working, its a huge benefit ! For me oxygen works like magic. Rebreather, non-rebreather, high-flow, lower-flow, it all does not matter. Whenever I breath in that stuff, the pain goes away within 10 minutes in most of the cases. Even if I stop oxygen after 15 minutes with still 20 % of the pain remaining, that pain also goes away during the next minutes. With oxygen, I have managed to cut down my triptan usage with around 70 %. So it's worth further trying it but patience and creativity is key here. All the best ! siegfried
  6. 2 points
    CHChris

    Sumatriptan Help

    Nikki, Injectable sumatriptan is a lot better than pills, which take way too long to work. A lot of people say that sumatriptan can cause rebound headaches. My neurologist told me to be careful how much of it I took, and offered me steroids for periods when I was using too much sumatriptan. Steroids like prednisone can be effective and give you a small break from the pain, but they have a lot of side effects that can add up over time. Your best bet, however, is oxygen. First identified in the 1960's as an effective abortive, oxygen is still under prescribed and under utilized for treating clusters. Over the years, the evidence suggests that higher flow rates are better. There is a ton of oxygen information on this site, but the quick version for you preparing to talk to your doctors is : at least 15-25 LPM, high-flow, 100% oxygen from a tank (not a concentrator) through a non-rebreathing mask. The conventional wisdom I have picked up from this board is that oxygen is so effective that you owe it to yourself to try it again. It doesn't work as well at lower flow rates, and can cause rebound headaches if not enough oxygen is consumed. It is essential to have high enough flow rates (15-25 LPM or more if that doesn't work) to abort an attack, and also to stay on oxygen (sometimes at a lower flow rate) for 5-10 minutes after the pain subsides. Just as important is the type of mask. You NEED a non-rebreather mask (the one with a reservoir bag on it. A nasal canula will not cut it. Don't let them talk you into a canula. Because the flow rates required to abort cluster headaches are so high, an oxygen concentrator will not be effective. They make oxygen out of the air in whatever room they are in, but do not deliver pure oxygen at a high enough flow rate. You are going to need oxygen in a tank. I hope this information helps you. I had to fight with my doctors and my oxygen supplier to get things set up properly, so hopefully you can head all of that trouble off before it happens. I still sometimes need flow rates higher than my medical regulators allow. During especially bad periods, I replace the medical flow regulator with a pressure regulator for welding. This allows me to dial in any flow rate I want. During these periods, I need about 36LPM, and only my pressure regulator can deliver that flow rate. Good luck to you.
  7. 2 points
    Dandownunder

    Cluster after 30 Year Hiatus

    HI plhbn and welcome you have come to the right place. Ive had a decent amount of experience with oral forms of sumatriptan all forms actually apart from the injections as they are $160 i my country. Before I was first diagnosed with Clusters, I and the doctors thought I was having migraines and I was prescribed Sumatriptan tablets. In the early days of my headaches they were much less frequent. The tablets definitely worked better than otc and opioid painkillers I had tried and actually would kill the headache. The problem being they did take a long time to kick in, minimum 30 mins to an hour. That feels like a long when you are in agony. After being diagnosed with clusters I was prescribed the nasal spray version. I found that to be very hit and miss. My nose gets totally blocked sometimes so I felt it didnt even get into my system. At times it worked and It would start to kill the headache in about 20 to 40 minutes. I then tryed the wafer version, you put that in you mouth and it dissolves, I found that to work pretty well usually working in 20 to 40 minutes. The key I found with all oral Triptans is that If you take them as soon as you feel you might have a headache coming on the more success you have at aborting the Headache quickly. Also Drinking strong coffee or a energy drink seems to make it more effective also. This method was effective for me for a fair while. The problem I found was The worse my condition got the more I needed to take them. Not only did they start losing effectiveness but I started to feel very average, tight felling in the chest, high blood pressure, even more tired than usual, a walking zombie pretty much. At times a Headache would hit so fast and was so strong that I would take one and it wouldn't work so after an hour of agony I would take another one out of desperation then that still didnt work for another 40 minutes. Then I felt so crap for the rest of the day dizzy tired, and a few hours later it would happen again. Maybe because of a rebound effect or maybe not im not sure. Once I moved to Oxygen I felt much better. In closing oral Triptans were a saviour for me for a fair while when used at first signs of headache with caffeine and taken sparingly but were not the long term solution. Tread carefully and goodluck, There is a lot of information on this forum to help you improve you pain. Plenty of people to provide answers to your questions. Dan
  8. 2 points
    Batch

    Newbie

    Hey Headsufferer, Welcome to Clusterbusters. You need to join Clusterheadaches.com at the following link and talk with DJ, a.k.a., Dennis Johnson. He started CH.com and had Moya Moya. He also had surgery for his Moya Moya so will be a valuable resource for you. www.clusterheadaches.com Check your message InBox, I've sent you some additional info. Take care, V/R, Batch
  9. 2 points
    MoxieGirl

    Newbie

    Hi Headsufferer, Welcome to the forum, really sorry you have to be here. In 2006/2007 I transitioned from male to female, and the hormones I took altered my hypothalamus, which, among other things, impacts headaches. I've always had periodic migraines, they run in the family. But in Jan 2007, I was diagnosed with daily chronic headaches, chronic migraines and cluster headaches, which turned chronic. From 31 Dec 2006 - July 2007, I had one constant non-stop headache + migraines and clusters. In 2011, I had 257 cluster attacks, 276 daily headaches and 42 migraines (each lasting 3-7 days). Not sure we can solve all your problems, but there is hope. Trust me, there is hope. By Nov 2011, I was getting 2-5 severe cluster attacks every 2-3 days. It was then that I sat down to put a date in my calendar to exit planet Earth, and then I remembered this forum, and logged on. I had given myself one year to find a solution. And hey, I'm still here. You can be too. I weened myself off of topiramate and started busting on 14 Dec 2011. I still have chronic cluster headaches, maybe 2 or 3 a month. They last 30 seconds to a few minutes on average, and although they can be sharp, I wouldn't call them painful. In 2012, after I started busting, I only had 3 migraines. I was seeing a neurologist at Addenbrooke's at the time, btw. He too had thrown his hands in the air as to what to do next. That was one of the reasons I started treating myself. As for restless leg syndrome, I stopped having caffeine after 5pm as my restless leg usually happened at night. No coffee, no soft drinks. I also found having a hot bath or spraying hot water on my legs when they were being restless helped. And, get exercise if you can - although I appreciate that is difficult. As for clusters and migraines, start reading the Clusterbuster Files section. Go through it with a fine toothed comb, especially the bit about playing well well others. You may find some of the meds you're currently on will prevent the methods we talk about here from working. And yes, they do work. Oh, and busting will also help with the depression. As far as epilepsy goes, cannabis I think is good for that. For some people, it makes their clusters worse, so tread carefully. Your daughter sounds absolutely wonderful. I hope we can help so she doesn't have to worry. MG
  10. 2 points
    Batch

    Vitamine D3

    Hey Virrr, Thank you for the feedback. Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed. It happens to roughly 5% of CHers starting this regimen. What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal. When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day. Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule. VocTeacher is spot on... Vitamin K2 also helps. If this doesn't get you back CH pain free, add 500 mg/day Quercetin. It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH. If that doen't work, you may have picked up an allergy to something in your environment or diet. Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days. Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime. Regarding the placebo effect... it happens with all forms of cluster headache prophylaxis not just vitamin D3. As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks. (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.) Even if it was a placebo effect... you're still pain free so who cares... If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen... If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week. When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day. This will get you back CH pain free in a day... two days tops. I realize this sounds like a silly thing to do, but it will accomplish two things. (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH. When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link. We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis. http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks again, take care and please keep us posted. V/R, Batch
  11. 2 points
    Ricardo

    CBD

    Not that long ago Forbes posted an article about cannabis for migraine prevention. It got ignored by all the headache advocacy groups (for SOME reason that I will let you all figure out on your own) but I am posting it here because it did include some cluster sufferers. It was a small study but it found that half of the cluster sufferers had better luck using a THC/CBD combo than using verapamil. It was a whopper dose, from what I can tell it looks like 100 mg THC and 100 mg CBD combined. One interesting thing that was noted was that the cluster sufferers who got relief were the ones who had migraine as a child. The study was done by Dr. Maria Nicolodi, an Italian researcher that I have been following for a while. I have a lot of respect for her and have seen a number of valuable studies done by her. Here's the link- https://www.forbes.com/sites/daviddisalvo/2017/06/29/marijuana-treats-migraine-pain-better-than-prescription-medication-study-finds/#73190af53700 And here is some more info on the study- https://www.ean.org/amsterdam2017/fileadmin/user_upload/E-EAN_2017_-_Cannabinoids_in_migraine_-_FINAL.pdf In regards to anecdotal experiences, I know one person that has had multiple brain surgeries that were not very successful but he has now gotten relief by vaping CBD as a preventative. On the other side of the fence is me, if I take CBD it is one of the worst cluster triggers I have. High dose THC works pretty well for me at times but I stay the hell away from CBD at this point. I am pretty sure that in this regard I am just (once again) the oddball. I have not met anyone else that has ever said that CBD triggers their clusters. Hope this helps. -Ricardo
  12. 1 point
    CHfather

    Big study (Schor and others)

    These are the first published results that I have seen from the big questionnaire-based study that Larry Schor and others carried out, which many people here contributed to. Nothing particularly shocking to us, but very important that it's out in the medical community. Thank you, Larry and others!!!! https://www.docguide.com/effectiveness-oxygen-and-other-acute-treatments-cluster-headache-results-cluster-headache-questionna?tsid=5
  13. 1 point
    Brain on fire

    Busting the Clusters

    Well stated Seigfried! Each beating of the beast is a victory.
  14. 1 point
    Just keep dosing you won’t remember being sick in a few days. Lol jk. Feel better sweetie.
  15. 1 point
    Fingers crossed you get to sleep and sleep well all night! Makes you wonder about the meds though.
  16. 1 point
    spiny

    Newbie

    Welcome! O2 needs to be used in a specific way to work. Most doc's do not know this or do not mention it. CHFather has written a wonderful paper on O2 that is in the Clusterbuster Files section of the board. HOW you use it is the most important thing. The short and skinny version is to use a flow of 15lpm to 25lpm at first and hyperventilate - breath in deeply, hold for a few seconds and exhale with force. IE: Do a crunch at the end to remove all the CO2 that you can. When the pain subsides your breathing can be slowed down. Then, when you are pain free, stay on the O2 at a comfortable flow rate for about 5 minutes. If you don't that hit is going to come back quickly. And you will swear that O2 does not work or it is causing more hits! Please give your little daughter a hug for being a hero!!! ATB!
  17. 1 point
    jon019

    Cluster after 30 Year Hiatus

    Hiya plhbn...sorry the beast found your address....but welcome aboard sleep, stress, food, barometer, activity CHANGES (like vacations) were ALL triggers for me...I stopped trying to figure out which one(s) because it basically came down to ANY changes in routine. Makes for a restricted life...yet another present from the beast. Depressing way to live...which is why forums like this to help figure a path out of the darkness.... triptans in various forms have been reported to cause rebounds and/or lose effectiveness...the goal is to make them a last resort abortive. I had my best luck with Zoming nasal spray (5 mg)...oral tabs were worthless to me....too slow. injectables effective but felt like killing a flea with a hammer and SO DAMN expensive.... OXYGEN OXYGEN OXYGEN...saved my sanity...perhaps my life. best reported success with high flow (>15 LPM) or demand system, the proper non rebreather mask (one such priceless gem available at clusterheadaches.com), and proper technique (there are several.... including breath and hold, hyperventilation)….if no medical available welding O2 is the same stuff in a different labelled tank...quite safe and usually cheaper.... energy drinks at first sign of hit and while racing for the o2 proved quite effective for me....triple strength coffee early in career, then the energy drinks came out. all taste like ass soes yur looking for content first: at least 100 mg caffeine per serving and at least 1000 mg taurine (caffeine booster). Buy by content and price...I get mine at outlet stores for $1 per 16 oz can (good for 2 hits). Red Bull too expensive and lower in the ingredients you need.... I have not heard this from others... but my first thought was perhaps you've developed a tolerance for diphenhydramine or there is some kind of rebound effect going on like with triptans. I'd try weaning off for a while and/or trying melatonin for sleep. many a clusterhead finds it helps with nocturnal hits.... interesting comment re reasoning and memory....I had quite the opposite. used to do a lot of critical writing at work and would almost wish for a cycle when I had an important project...seemed to sharpen and clarify my thinking....out of cycle it got all muddy. similar to depression...in cycle no problem...too busy...out of cycle...DAMN! Best Jon
  18. 1 point
    FunTimes

    Newbie

    You do have a lot going on but you are in a good place here. I only have experience with the Clusters, I am chronic. The first thing I would say is get a prescription for Oxygen and get a cluster mask from here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit you will want high flow rate and pure oxygen. this will help abort your cluster without the need for other medication. I also drink a 5hr energy drink at the first feeling of the cluster coming on. I do not know if the 5hr drink would conflict with any of your other issues so I would look into that. We have a tun of other information on this site you can read up on and pick what route you want to go. Read and ask questions.
  19. 1 point
    Hey Pebbles! Ever find any blue drool on the pillowcase? A SPUT at bedtime has helped many. The joke is if you drool, it leaves blue streaks on your pillow case!
  20. 1 point
    MG's first rule of clusters: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Really glad you found a system that works for you. A lot of people report that physical exercise helps with clusters, and a good diet low in processed foods and sugars is always a good idea. I'm sure you'll find people who find this method works, and just as many that don't. As an example, for most cluster headaches, alcohol is a massive trigger. But not for me. In fact, I can use it to abort a migraine if I have to. We are all different. MG
  21. 1 point
    Quite interesting, thank you
  22. 1 point
    jon019

    CBD

  23. 1 point
    dmlonghorn

    2019 Patient Conference

    Hello Everyone, This could be a great opportunity to participate in the clinical trial conducted by the Will Erwin Headache Research Center at the Memorial Hermann Mischer Neuroscience Institute (MNI) in Houston, TX - only a 30 min flight from Dallas. It's a blood draw and a questionnaire, I've done it, it's very simple. If you're considering coming to Dallas for the conference, please consider flying through Houston. More info on the study / foundation can be found here: http://www.cureheadaches.org/our-story PFW!
  24. 1 point
    ClusterHeadSurvivor

    Fundraiser for CB

    This VLOG is dedicated to Melissa M. Dwyer.https://www.youtube.com/watch?v=qSHxDHYvfWERaising awareness and fund raiser for clusterbusters,Please watch, share, like, SUBSCRIBE and.....donate to get an autograph by a rock star ! All for Cluster Headache Awareness
  25. 1 point
    Bejeeber

    Cannabis - Sativa or Indica?

    Frankly if I thought I was going back into a cluster cycle (and busting wasn't working for prevention) I think I might be more likely to seek out the Harlequin! I say this just because although I can see the CBD oil is effective for nerve pain, it's been requiring around 6 hits for an effective dose, and I'm afraid that might be too long for me to wait for a CH abort. Although maybe it would be good enough for the initial, not so off the charts, easier to abort attacks that have characterized the very beginning of a cycle for me. Or maybe I'd research into a best quality, faster/easier vaporizer for the CBD... I guess I'm thinking of the time it takes for 6 or more hits of CBD oil to kick in as being like taking an imitrex pill, and 1 to 4 hits of Harlequin potentially being more like an imitrex injection, but hey that's just the noise and wild guesswork rattling around in me noggin at the moment, with admittedly little thought or research put into it. Glad you brought it up though - maybe I could start with seeing how the oil affects a shadow, as I expect to have those randomly pass through now and then.... I'm also trying not to get TOO excited yet about CBD and CH since some CH'ers generally find marijuana to be an actual trigger, and I wouldn't know whether for them that might also apply to the CBD hemp oil or Harlequin. Again, I'm pretty much just free associating with random thoughts here, and very well may change my stance when better informed.

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