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  1. https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html Great, in-depth piece yesterday that brings visibility to Clusters, our battle, and the struggle for acceptance of psychedelics as a treatment. Thanks to Bob Wold, Dr. Emmanuelle Schindler, Dr. Larry Schor and others for their continued support and pushing the message for the benefit of us all
    9 points
  2. Thanks MaxHead for posting the article. Yeah it turned out pretty good. It was great that the author interviewed and quoted a lot of good qualified people like Dr. Schindler that gave the treatments and clusters in general, the respect they deserve. The author is a Pulitzer Prize winning author so she carries quite a bit of weight and the article is getting a lot of attention for clusters. Thanks for everyone here that has helped keep these fires burning all these years. Its been a team effort. Way to go team ;-) Bob
    8 points
  3. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches": https://www.preventsuffering.org/wp-content/uploads/2020/11/Legalising-Access-to-Psilocybin-for-Cluster-Headaches-Policy-Paper.pdf
    8 points
  4. Politics. I would like to suggest a return to CH specific discussion here, while enjoying the political discourse elsewhere. I can see that so far there are some folks on similar political wavelengths offering views, but can assure that political views of members here - all very good people - are all over the map. The more political it gets, the more divisive it will be, while we CH'ers need to be sticking together during these ultra hot button political issues times.
    7 points
  5. G'mornin ya'll! A few years back I had the pleasure of meeting and mentoring a fellow clusterhead from New Zealand on Facebook. Along with embracing busting as a treatment for his headaches, Craig became interested in Batch's D3 regimen....really interested!! So, he has teamed up with Pete and began working on an animated production explaining the regimen....this morning he posted this video on his YouTube channel along with our beloved Batch!!
    7 points
  6. To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
    7 points
  7. WOW. I never thought I'd see this in my lifetime. It's one step closer for those of us with CH being able to get medicines from a doctor that actually help stop our CH.. It looks like there's a lot of bureaucracy wrapped around how they'll manage it, but I'm sure it'll get easier once the magic spreads (ha ha, just made that one up). https://www.kgw.com/article/news/politics/elections/oregon-becomes-1st-state-to-legalize-psilocybin-for-mental-health-therapy/283-4103d1ba-9d9a-4dc0-9970-6f8cc1288323 Love all, J
    6 points
  8. Last night again--- pain free! I think (hope) I am done for a couple years. I consider myself incredibly lucky in a lot of ways. One is knowing/hoping my shadows will be gone for a couple years. If I disappear for a couple years, just know you all have helped a ton, even just by knowing there are people that understand this thing, and there are people helping people and doing incredible thngs making traction toward a brighter future. And isn't Batch an incredible man! Holy! It's like he was put on this earth to help all of us. Just incredible. Wishing all of you peace and serenity and all the joy and happiness possible. Goodness knows you've all earned it!
    6 points
  9. Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....
    6 points
  10. Hi all, A pretty unusual post this! In the last six months, I've had some testing periods with CH. These experiences lead me to write a couple of songs inspired by what I've gone through. I figured it would be cathartic to share the recordings (only rough demo tracks!) with the community here. It got me wondering whether anyone knows of any professional/famous artists who have ever released songs inspired by CH?! Anyway, here are links to the two songs. I hope there's something there you can associate with - if not, that will say a lot about my song writing skills Until The Next Time - https://soundcloud.app.goo.gl/fqGAE Two Sides - https://bit.ly/3hupDYB Best wishes to you all, Drewbie
    6 points
  11. Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it. Yes I am a hot mess atm, but that's the life of a cluster head. lol So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. Ok, let's get down to brass tacks. Xboss, I feel for you brother, 100 days is a rough stretch. My first introduction to trex shots turned me into a chronic going from a lifetime of about a two month cycle to two years. Then I forced myself to back off of using them every time, tapered down to nothing and the cycle broke a week later. Now I use them sparingly, especially to avoid rebounds. Now, I had requested and old script of 02 with my new doctor, only to be told that he couldnt do it (stricter rules these days, I guess) and referred me to a neuro, who I was kinda rude to back in 2014 because I refused her suggestions of carbamazapine and some anti seizure meds, I guess I was expecting a better answer than the one I got. However, I will discuss nerve blocks, emgality, 02, and botox with her when i see her next week; aaaand possibly an apology I guess. Although, Im sure shes used to cranky CH patients, by now. lol. Ok, all of this is going on right as I am finally starting the career that I have been working towards for almost a decade, and I LITERALLY started my first day today, as a medical lab assistant here at our local hospital. Its my foot in the door, while I finish my radiography and imaging degree within the next year and a half. THIS lifelong torture demon we live with is my driving force to get into healthcare in the first place....and I finally made it! NOW, I DONT WANT TO RUIN IT BECAUSE OF MY DISEASE! Like many other jobs in the past. My manager really likes me and has the low-down on my condition, and I promised to manage it the best I can until the cycle is gone. I had restarted the D3 regimen minus a few ingredients, and It seems to raise my BP (Oh yeah, Ive become hypertensive in the last year) which then triggers one every time. So I backed off. I detoxed 5 and 5 for mm, and will again in a few days, BUT, I think I may have found something of interest. I stumbled upon some studies conducted on B1 (thiamin) deficiency and CHs, and head tremendous pain relieving results, with high doses tapered up to 750mg a day to break the cycle, and back it down to 600mg a day for maintenance. (with NO DETOX! I took 100 mg last night and 200 this morning (with food). Going for 300mg tomorrow, and have only had one little shadow. I will keep you all posted on my results. Thank you Vajenna, you are right, D3 really does work under the right conditions, because it has always done wonders for me in the past, until recently. But I plan to get back on a lighter regimen when this cycle is gone, along with properly spaced dosing of mm. Jon, I appreciate you! That, was a comforting response, and I thank you. And je3wook, OMG I felt this!!! Hang in there. I have weak points quite often in every cycle actually, but something else has always seemed to keep me going, even before I had kids. I wish you a painfree break soon no worries, we have some incredible and compassionate minds on the case. We will find a cure soon!! Love you ALL!!!
    6 points
  12. I guess not permanently, but I have been in remission since 2011. Last cycle (2011) busted with RC seeds.
    6 points
  13. Just wanted to say Thank You for everyone here. Last February 6th I started the roughest cycle I had ever been through in 17 years of dealing with Clusters and everyone here was nice enough to help me get through it. My mind did wander to some bad places during that cycle and it no longer does as the wisdom of this group brought me to the right place. Thank You for all you do.
    6 points
  14. If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    5 points
  15. Welcome to the cool kid club Spida. I'm against pharma so my advice is to seek non pharma solutions like D3 and psychedelic busting. Oxygen for aborts etc. Red bulls and hot soaks also work for me when it comes to aborts. I'm sure pharma works great for some people but the side affects can suck. Try to learn as much as possible from here and inform yourself with some weapons to fight this terrible condition. It can be managed fairly well most of the time for most of us. Oh, and keep a log book of your hits and possible triggers. Just knowing your triggers can be very useful and there are many like alcohol, flying, foods, smells, even sitting positions! GL warrior! -Scott
    5 points
  16. I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.
    5 points
  17. 'I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.' Agreed, we all need at least one of these!!!! Bosco, we learn to laugh about it over time I think. Sort of laugh or cry? I'll take laugh any day. Let the anger about it out, scream to the heavens and then get on with life. I suspect it teaches us to value good times a lot more than many do and that is a gift to be savored. Fun Times made a great suggestion regarding RC seeds too!!!
    5 points
  18. Look into RC seeds (Rivera Corymbosa seeds). They can do the trick and no tripping for most. You can order them online and have them in a few days, Grind them up in a pepper mill, soak them in some spring water for about an hour then drink them down. They can work just as well as MM sometimes with less mind altering effects. You can read all about them on this site by putting RC seeds in the search bar at the top of the page. I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.
    5 points
  19. Happens to most of us if not all. I feel mean, sad angry and I lash out at people all the time. My wife will sometimes remind me that im being an ass and kind of bring it to my attention but she understands why I am this way. As far as staying happy? I just kind of think about the ones I love and I am thankful that this is all happening to me and not them. I can deal with this my own way but if someone else had clusters then I would be one of the ones who just didn't get it. I know it will pass in a few days or weeks and I will feel better again. I am chronic so I have forgotten what it is like to be pain free for more than a day but I do have days that are better then others and I try to enjoy them. Depending no your location you may be picking up some sort of allergy from being out with your horses. you might want to look into the vitamin D3 by our member here know as XXX. I am sorry if you posted about this already and I missed it but how else are you dealing with your clusters? Coming on this site and venting about how your feeling is huge! people here understand and will help you figure it out.
    5 points
  20. agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you.
    5 points
  21. Hi all, it’s been a minute, pleased to say I have been attack free since 2019. It’s been wonderful living life without this pain. But I know it’s unfair to not stay active in this community seeing how this was the place that pulled me out of my abysmal predicament with clusters. I hope you’re all doing well, and that more new users are getting more hope as this community grows
    5 points
  22. Heading back up for another round with this study. https://clinicaltrials.gov/ct2/show/NCT02981173 Might not help me much but it will make things a little better for the future.
    5 points
  23. .....clusterheads who have not developed a healthy dose of skepticism are doomed to spend years (decades?) sitting in a dark room with blue cheese lined tin foil on their head, a shot of cider vinegar by their side, with a nostril full of cayenne pepper, a hand searching for the carotid to press, regrets over the perfectly good teeth pulled, in a Topomax daze and unable to THINK away the pain, while dialing the chiropractor whose office is next door to the acupuncturist...... both with promises of immediate relief........................
    5 points
  24. Thank you all for your kind support and advice. Anxiety is a rocky ride with good days and dreadful days. Yesterday was not a good day for me. Just got to keep fighting. We're all fighting something.
    5 points
  25. Count me as someone who also finds @jon019's detailed response above to be an epic masterpiece of helpfulness. Now on the subject of episodic turning to chronic, dude don't worry about it! Easy for me to say as someone who couldn't bear such a going chronic thought during episodic bouts, and considered it to be the ultimate nightmare of nightmares concept, but has now made it through 40 (!) years of remaining episodic, with some seriously long remissions. When I've asked chronics how they could possibly think even for a second that it was preferable to when they were episodic, one of the reasons I've heard is the hits haven't been as strong while they're chronic. No guarantee that'd be the case for everyone of course, but it was something. Thing is, you appear to be on the verge of taming this MF with the various ultra effective non-pharma approaches that have been mentioned, so I think you should now be leaning much more towards a solid vision of life restored than horror unleashed!
    4 points
  26. ....not to mention the f'n horse it rode in on.....
    4 points
  27. At the onset of covid I was having issues with size and amounts of tanks that were being delivered to me. I would ask for an M or M60 and I would get E tanks. I have from the start of using oxygen ordered an extra tanks, order 4 tanks and only give back 3 empties, this has gotten me a nice stash of extras that I can keep all over the place. It may not be the right thing to do but with the amount of issues I had just to get oxygen to begin with I don't really care. You gotta get on the good side of the delivery person and start building a stash of extras for when this sort of thing happens. I am scared that one day I will be told that my oxygen company just does not want to deal with me anymore and cuts me off so I have enough extra tanks to last me at least a month. This will get me some time to find another company.
    4 points
  28. We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig. I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything.
    4 points
  29. Try out busting. Sorry it's been a mess for you. It's been a mess lately for many of us. GL!
    4 points
  30. Yes. It's possible for your cycle to change. Mine has changed greatly over the many years I've had CH. How CH responds to medications can and often will change. When I first started out verapamil would work very well. Over the years it's effectiveness decreased .... I second Bejeeber's suggestion on O2 usage. How you use O2 can and often does have a great deal to do with how you respond.
    4 points
  31. Hi @Hoodoo, sorry to hear of the cycle gone rogue, but yep, it appears common for CH to establish what seems like an inviolable pattern of timings for cycles and/or hits, even for ultra consistent decades on end, then suddenly out of nowhere when you least expect it, pull the old switcheroo on you. This can even go for which side you get hit on. Glad to hear it is starting to respond to the O2 and triptans again though - I too would definitely consider that a very hopeful sign. For future reference, I wouldn't be surprised if adopting the full power user O2 approach (if you haven't already) could help you still be able to abort stronger hits.
    4 points
  32. Overall, I'd say you are not incurring any overuse risk, particularly if it's sumatriptan that you're using. Sumatriptan has a very short half-life, so your daily 25mg is fully out of your system before your next dose. I don't know whether you're messing with anything significant by breaking them up, but I would think not. (They do come in 25mg doses.) You are very fortunate! We rarely -- if ever; I don't remember it happening at all -- see anyone here who stops a CH attack straight off (or at all) with any dose of a triptan tablet, let alone a dose that small. Even with migraine, where the tablets are sometimes effective, it usually takes a while for a pill to have an effect.
    4 points
  33. BoscoPiko, Odd as it sounds, we get you. I try to be soft, yet I know my natural state is pretty gruff. I figure if I practice nice long enough that it'll become my natural state. I don't know if it's CH or other things in life (or the combination). I don't recall if you're busting or not? I've found (as most others I think), that busting comes with it other positive affects on our personalities. I haven't really felt happy in a long time. That seems odd to say. Get through this cycle and I promise you'll feel better. Your horse is ready for a long run when you've kicked your CH beast to the corner. Cheers, J
    4 points
  34. Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have. Busting is another option you will end up running into here and you will have a lot of information to read up on for that also. Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions!
    4 points
  35. Hi Tony, sorry to hear of this. To clarify- he is getting a good (but sometimes temp) response to O2? The attacks come on quickly to severe like CH? Night attacks mostly? Does alcohol trigger an attack? He has had verapamil? Tried high dose melatonin? Does he have sleep apnea? One could review the imaging as newer onset side locked headache in an older person should always mean reviewing imaging in detail- for instance masses outside the brain may compress the trigeminal nerve.
    4 points
  36. "Soy sauce. Soy sauce also contains tyramine (migraine, sometimes CH trigger) and sometimes monosodium glutamate (MSG). MSG, which is used as an additive in many other foods, has been found to cause cramps, diarrhea and headaches. Additionally, soy has large amounts of salt, which can lead to dehydration – and, therefore, to headaches." (it aint the Na, its the dehy). Foods That Can Trigger Headaches - Penn Medicine
    4 points
  37. Hello Mr Watts, So good that you have found this forum, too bad that you’re now part of the family. I live in the Netherlands too and there are a couple of things you can consider already. Get a prescription for verapamil as a preventive as long as you do not have O2. O2 is the safest and quickest abortive, but also get some Sumatriptan as an abortive if O2 is not working anymore or the attack is just too severe. If I were you I would change to another neurologist. Mine is Dr. Couturier of the Boerhaave Clinic in Amsterdam who is an expert in this field of CH in the Netherlands. He has helped me tremendously and will prescribe O2 immediately as well as the meds you are going to need. All the best!
    4 points
  38. Many people get good relief from the nasal spray. If you get the injectable, you can divide it into two or three doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    4 points
  39. P.S. I also wrote this in response to @Dipper, in case it helps your friend: Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses. Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and can repair damaged mucosal tissue like the gut wall - I purchased a kind not made with Greater Plantain seeds, since its seeds can be a laxative which is not my intent), and Artmeisia (wormwood) which is said to prevent ulcers induced by indomethacin and has gastroprotective properties. I know the idea of herbs might seem kind of weak compared to formidable indo side effects, but I haven't found ginger to be so, and I had to detox off pharmaceuticals in order to bust (which I had just started doing when HC was suggested), and after the trouble of the detox from those, I didn't want to get back on another Rx to combat indo's side effects. Also, boswellia serrata (see my above post) is an herb, and it doesn't seem weak at all. Another person with HC on these forums was able to become pain free by busting, so that's another option, though he/she said it takes a pretty aggressive busting regimen to do it, as with CH. I hope your friend gets better! I so relate to the part about not know how much longer she can survive. SO much.
    4 points
  40. Rest assured many of us, definitely myself included, really feel for you in your near impossible situation @trjonas. In the spirit of throwing more ideas out there, even if you may have considered them long ago, wondering if your insurance or whatever would allow for a telemedicine appointment with a headache specialist. I don't have a referral, I only spent all of 20 seconds Googling about it, but it seemed some stuff was turning up, like this telemedicine headache specialist Honestly, I'm not sure how or why I hadn't considered this option for myself yet!
    4 points
  41. ......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off..... ...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)
    4 points
  42. Skepticism...... I have been skeptical of almost everything known to treat CH because I have tried them. But we can't give up. To me, the most difficult part of determining efficacy for any treatment is the fact that it just stops working after a while. Verapamil worked for me for about 2 years, I had to keep upping the dosage to get results, and then it just stopped working period. I used MM for 4 to 5 years successfully and then it just stopped working. I started the d3 regimen and have been 'loading' for 15 days now. I am also using Quercetin @ 3,000mg a day because I have allergies. I have gone from 5 to 6 attacks a night down to 2 a night with reduced intensity. I am currently waiting on blood test results to see where I am at. I am still hopeful that the attacks will stop. My point is simply this, the medical community as a whole knows very little about CH or how to treat it. The folks here at Clusterbusters held my hand and walked me out of very dark time when my CH was at it's worst, and words cannot express my appreciation for that. If it wasn't for people like batch, CHfather, and many others we would all be experiencing a lot more pain than we already are. These folks have worked constantly to provide the CH community with alternatives or new things to try when many of the known methods just stop working. The only thing we know for sure is that, not everything works for everybody, but in many cases we see results......at least for a while. My experience has been that a lot more help or 'next steps' can be found here than can be had from the medical community and can be tried or attempted in a lot shorter time. Trying to find fault with someone's attempt to help, helps no one.
    4 points
  43. Struggling with your humanity and existence with the burden of cluster headaches challenges even the most stable of souls. Add the element of a panic attack, which can feel like the arrival of death itself, and life's burden can be overwhelming. Every human is defined by their underlying physiology, spirituality, history and aspirations, Its what makes us unique and why treatment is rarely a one size fits all problem. Certainly on a basic level cause and effect can be directly related but because we inherit slightly different metabolisms, slightly different anatomy, vastly different toxin/nutritional exposure and upbringings the manifestations of disease and response to treatment can be predictable or paradoxical. I believe that is why some folks can use alcohol and drugs without much long term consequence and others ruin lives from the onset. I also suspicion its partially why we hear about some things working for some clusterheads and the same treatment gets no traction with others. If possible get a support network into place so you can vent and express yourself. I believe you must work hard not to be dramatic and emotional. Express your experience in as calm a manner as possible. People turn off fast if they sense a drama king/queen. Not fair but true. It helps if you write it down and codify it before verbalizing to others. This is true if you are talking to a support person or a medical professional. It helps you align the facts and reduce the embellishments and makes the communication as succinct as possible. Writing it down also helps putting things into perspective and understanding your personal journey and what a strong warrior you really are. Thats thought and opinion take it for what its worth. Panic attacks are very challenging and can be disabling. THC ingestion can often fuel because some folks get paranoid, feel guilty or are not comfortable being relaxed. Most of us who know potheads marvel at how they use it to alter perception, mellow out and frequently use. This behavior is unique to a subset of individuals as there are many more who get no joy from pot. It is possible to have a panic attack proximate to THC use but very unlikely its physiologic 24-48 hours later unless the person is a chronic. THC is stored in the fat and the brain is a big gob of fat. Triptans like Imitrex and Zomig can induce anxiety mostly through reaction to decreased stomach activity and non cardiac chest wall tightness. The uncomfortable feeling can precipitate anxiety. Diclofenac is a non steroidal like ibuprofen and usually doesn't cause or mitigate anxiety. Paroxetine is a serotonin reuptake inhibitor (SSRI) and the model drug this antidepressant class was popularized. Since we suspicion clusterheads have a serotonin regulation problem you can get all sorts of atypical responses. It is worthy to note in a depression paradigm many believe it is a spectrum and to become depressed one must pass through anxiety first. Conversely to defeat depression you must pass back through anxiety. Since anxiety is such a horrible debilitating state most folks get stuck in depression. If the Paroxetine is helping you get out of a depression you may be approaching the anxiety as a path to wellness. Thats where support and counsel helps to get you across the threshold. Meds alone rarely are an effective intervention expect for be pharma. Don't know much about Quetiapine but from what I read it looks like a supplement to help with brain function and healing. Some promising results but the jury is still out. Unlikely to be harmful. Verapamil is a calcium channel blocker used historically for hypertension. You were on a very low dose. Its possible it could drop your pressure a bit and cause anxiety or in very rare cases cause your heart to beat abnormally which can also provoke anxiety. It has other anxiety provoking side effects but its rare. Its not use too much anymore because it wasn't a very good antihypertensive and heart rhythm disturbances had to monitored. Steroids and steroid weans can cause anxiety. Lorazapam is a benzo as you mentioned. The prototypical benzo is valium. Long term benzo use can lead to physical and psychological dependence but usually you are talking about moths to years of use. Lorazapam is a very short acting medication and 0.5 mg is a very low dose. While its possible lorazapam contributed to the anxiety its more likely you were under treated and got in that horrible zone between panic attack and relaxed. Judicious use of benzos can be very helpful in managing anxiety but are best used in conjunction with coordinated counselling. They also can also help while busting during that anxious period. Vitamin supplementation is being vigorously studied and reported. While the data is promising and impressive definitive studies are ongoing. Hopefully these studies will further our understanding of cluster headaches and their management. Until then I would suggest the risk benefit calculus favors trying vitamin supplementation following the guidelines put forward. As with most cluster heads you search for explanation and cause/effect in a desperate attempt to manage. Imaginary thinking predominates especially during a cycle. We look for triggers, blockers and treatments to end the horror of an attack. Our uncommon disorder doesn't get much attention from medical science so we are left to ourselves and citizen science to explore options and support each other. At the end of the day it helps to know panic attacks are real, debilitating and manageable. Acknowledging them and exploring management options are important to quality of life.
    4 points
  44. To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them. I am a refractory chronic ch sufferer with 5+ attacks daily, from all the other reading here I have seen many many variation in efficacy to treatments, to suggest if one thing does not work then you do not have this hellish thing, is a bit of a slap to those who do have this and are getting fucked because shit is never 100% with ch. Other than it 100% sucks.
    4 points
  45. Happy New Years y’all! I hope you guys are having pain free days. I am happy to report that for the second time in my life, I’ve managed to keep the beast somewhat controlled. may this year come with tons and tons of pain free days for everybody. Also, may this year be the year that I get to go to the conference!! love all of you beast fighters out there.
    4 points
  46. It does suck.. Welcome to the club! Like yourself we have all gone through this same type thing. You will find people that have had teeth pulled, nerves cut, tried all sorts of different medications and a few operations done to try to solve this. You will want to read up as much as you can here starting with the link that CHfater sent you, get oxygen as soon as you can to abort your attacks try a 5hr energy drink at the first feeling of an attack coming on can help buy some time and sometimes abort the attack on its own. read up on busting and the Vitamin D3. Oxygen is the best treatment for aborting if it is done correctly. We can help you get the needed supplies for that even if insurance will not cover it. I pay for it out of pocked because my insurance stinks and it would cost more if they paid for it. The D3 you can do all year round and can either eliminate them all together or lessen the frequency and intensity of the pain. Some will add benadryl to the list of vitamins during season changes to help with any underlying allergies that they might not even know they have.
    4 points
  47. ....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to deal with...making yourself nuts with worry about how he changes the "rules' is kinda pointless....attitude, a plan, and the right tools are the key.. best jonathan
    4 points
  48. As a way to cope with this crazy disease, I thought it would help to imagine my Cluster Headaches as characters in a cartoon strip. I wonder how my imaginary "Cluster Boss" demon must feel when he's working on my cycle. Maybe he's as frustrated as I am! Just my perverse way to find some humor in this horrible disease.
    4 points
  49. Here is the info to help you with the regulator and mask This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit As far as getting it covered by insurance, I have the issue of it costing way to much with insurance so I called around and told the oxygen companies that I will be paying out of pocket. It seems as if the insurance company actually sets the pricing and when I pay out of pocket the price is about half. I lucked out and have a company that will deliver the tanks to my house. I call in what I need and they come the next day. I am also chronic so I get this done all year round so I am not sure how that would work if I did not call in a order for 6 months of so. I recommend calling as many companies as you can and tell them your paying out of pocket. Your other option is the welding route. You can read up on this on the site as well and get all the help you will need for that setup.
    4 points
  50. This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Foundation, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
    4 points
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