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  1. After his courageous 2 year battle, Clusterbusters is overjoyed to share that Bob Wold has beat cancer.
    11 points
  2. I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering.
    9 points
  3. I saw a comment by Flash on his Facebook homepage this morning about a new, soon to be published book about us by Dr Joanna Kempner!! How a group of regular citizens debilitated by excruciating pain developed their own medicine from home-grown psilocybin mushrooms—producing near-clinical grade protocols, and their fight for recognition in a broken medical system Joanna Kempner is the premier expert on the social impact of headache diseases. In Psychedelic Outlaws, she follows a group of people called “Clusterbusters,” a community bound by their experience with cluster headache—a neurological disease so excruciating, its pain is often likened to being shot in the head, repeatedly, multiple times per day. Obtaining a diagnosis can take years and treatments often leave patients worse off than they were before. There's a grim reality behind the disease's nickname, suicide headache. Kempner’s narrative traces this patient movement to its origins to the extraordinary experiments conducted by a man named “Flash” in Aberdeen, Scotland, and then follows it forward, as the idea of using psychedelics for pain begins to gather in the early days of the internet, and then eventually became a full-fledged effort to bring this knowledge to universities. Their story looks at the politics of pain, why some drugs make it to market when others don’t, and our culture’s complicated history with psychedelics.
    9 points
  4. Hey everyone wanted to drop by here and also wish everyone a wonderful Christmas ! Also wanted to sneak in a very heartfelt thank you to all the mods and everyone who contributes here. I'm the partner of an episodic CH-her who was in the depths of hell last year over the course of a 15 week cycle (normally 4-6 weeks) usually with cycles every 18 months or so.. I came here in sheer desperation and despair and you all welcomed me with so much encouragement and guidance... it's been over a year and he seems to be doing well so everything crossed it continues. Here's to 2024 being the year where a genuine cure and/or readily accessible treatment is available to everyone here with this condition - you are all some of the toughest most resilient people out there.
    8 points
  5. Hello everyone, i wanted to post something positive on the board. After 11 weeks of clusters, my longest cycle ever, I am finally pain free. It took weeks, a ton of oxygen and a ton of anxiety but I finally got my brain under control. I bought the rc seeds but never used them. I am still looking at using stuff in the future but still have a lot of questions and concerns. I hope that everyone is pain free out there and if you are in cycle continue to fight on.
    8 points
  6. I got an appointment with Dr. Marmura at the Jefferson Headache Center!!
    7 points
  7. Merry Christmas to all of you sufferers and all of our supporters! You all are appreciated beyond words. This site, the folks on here and those behind the scenes that support us are nothing less than a God send. The words, the compassion, the support, the empathy and the gift of companionship will always be a gift that thanks will never be addaquate enough for. Merry Christmas to you all!
    7 points
  8. Yes, that's long (which is fine), and I just scanned it and jumped at a few things. 1. You never want to be using that much Imitrex. It is virtually certain to make attacks worse and extend your cycle. Do this!!! https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. You must get oxygen!! It is the lifesaver, eliminating or significantly reducing the need for triptans. Insist with your doctor and if that doesn't work, use welding oxygen (all discussed extensively in that file I linked you to above, and the file about welding O2 in the CB Files section). 3. Your verapamil dosage is still quite low. It has to be ramped up slowly to watch out for effects on the heart. But the vitamin D3 regimen is much, much better for you than verapamil. You should just start it now, and you won't need any verapamil next time. Also linked to in my message above. If you take the D3 regimen year-round, it will be good for you and also might even prevent cycles from starting. (Also -- and I hope this is moot the next time it matters, you want immediate release verap, not extended release. I don't know why but it just works better.) (Some people get into the 900s and even over 1000 in terms of verapamil mgs/day. Nobody likes the side effects of that.) 4. it would be nice if Emgality really worked for you. Results are decidedly mixed. 5. You might read up more on busting, if it's something you would consider doing. Yes, it is astonishing how few neuros bother to do even this. You got lucky in the short run, but dosing yourself with Trex is not a workable long-term strategy. Your doc probably avoided oxygen because he has no patients who use high-flow O2, and he probably doesn't even know how to write a prescription for it. You can help him with those things from ther info here. The standard prescription reads something like "Oxygen therapy for cluster headache: 15-20 minutes at 12-15 liters per minute with non-rebreather mask." There's plenty of research on the effects of triptan overuse. A 6mg injector makes overuse almost a given. There are injectors with lower mgs (Zembrance, for example, has 3 mg), but the clinical trials for CH were done with 6, and so prescribing anything else is "off label."
    7 points
  9. Bob is the opening speaker. Joe is catching up on his beauty sleep.
    7 points
  10. I tend to keep my hand on the regulator as I am using my oxygen and adjust it up and down as needed. I try not to let the bag overfill to the point the oxygen is coming into the mask before I am ready for it. I change my breathing up almost hit to hit as needed. Sometimes long deep breathing works and others short faster breathing helps me better. It kind of depends on the situation and how fast I get to the 02 tank and get started. I will also chug down a 5hr drink to give the 02 a jump start, grab an ice pack and find a effective pressure point to apply that to it, Also changes per hit, and adjust my seating position. I am a sitter not a walker so stretching out my back or doing a crunch or both will change the effectiveness of my 02 sessions. By the end of the party I am breathing at a normal rate at maybe 4 or 5 lpm on the regulator.
    7 points
  11. Thank ya'll for your comments, kind words, support, and love!! Just wanted to provide ya'll with a miraculous update this morning! I'll never be able to express adequately my gratitude to my surgical team at the hospital and the entire staff at my rehab facility....I am so blessed to have had them in my corner!!! Neck surgery on June 7th, major back surgery on the 10th, and at 11am this morning, June 21st,.......2 freakin weeks later ya'll.....I'm going to walk to our car under my own power, albeit with the aid of a walker, and my Bride is taking me home to our cabin in the woods!! Did I mention that I'm blessed beyond belief?!?!??? My love to all DD
    7 points
  12. Dear friends, thanks a freakin lot for the overwhelming and cheerful days at the Glasgow conference: Ainslie & board, speakers, volunteers and everybody joining: it has been my very first one and i'm still riding the waves of cordiality, joy, information and togetherness that we have been sharing. Thank you so much for this extraordinary experience, for including me so heartily and for spontaneously making me the conference photographer Not naming anybody here - my love goes out to all of you as i share some of the images below. I was not prepared equipmentwise, tried to make the best out of it and i am now done with processing them. Don't worry about your memories: the lighting atmosphere of the pictures is quite a bit colder and lighter than it has been at VOCO conference rooms. But the original massively yellow hue and the poor colour rendition of the lighting finally led to rendering all a bit more neutral. Hope y'all can find and enjoy yourselves on the pictures. Here's a link for downloading and saving all the images in a better resolution (1920p, 300dpi). Also please let me know if you don't want to appear here. Love and some more big hugs from Berlin !
    7 points
  13. .....was exactly same.....in cycle only as an abort/O2 enhancer....between typical hit times was a trigger. but out of cycle no problems.. ....vasoactive substance that seems to turbo boost caffeine. some find supplements alone helpful... ...none of us do...its the dangdest thing but way common for clusterheads... ....me too...fast, portable, tsa compliant, more caffeine/taurine than many energy drinks w/o the ridiculous gross amount of sugar...
    6 points
  14. Happy New year to all us head bangers , hope we all have a great new year and lots of PFD'S
    6 points
  15. I've finally completed the update to the Anti-Inflammatory Regimen - Cluster and Migraine Headache Treatment Protocol. I've titled the update "Quick Start Guide" as it streamlines the process of starting this treatment protocol. Henry Lahore, founder of VitaminDWiki.com, was kind enough to publish the Quick Start Guide on VitaminDWiki. This VitaminDWiki web page is titled: Cluster and Migraine headache treatment protocol - Sept 2023 Short URL = https://is.gd/cluster2023 The download link for CHers and Migraineurs who want a pdf copy they can send to others = http://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=20148&page=Cluster and Migraine headache treatment protocol - Sept 2023&download=y You can also download a copy by going to the Attached Files section of this web page and click on the following link: Quick Start Guide - Sept 2023.pdf The goals of this update include an improved response rate among CHers, Migraineurs and a surprising number of CHers who also suffer from migraine headaches. To meet these goals, this update now includes provisions for two or more vitamin D3 loading schedules with higher vitamin D3 maintenance doses and higher 25(OH)D3 serum concentrations. (Note, multiple loading schedules should be done under a physician's supervision with assays for serum 25(OH)D3, calcium and PTH following each loading schedule to ensure calcium and PTH remain within their normal reference ranges). The following chart illustrates this can be accomplished safely without driving serum calcium or PTH out of their respective normal reference ranges. As you can see from this graphic, serum 25(OH)D3 concentrations are a very poor indication of vitamin D3 toxicity. This update also includes a collection of supplements I call the Antihistamine Full Monty as there are a lot of them and these supplements have antihistamine properties. Many of these supplements are also frequently found in migraine treatments. Once you've followed the Quick Start Guide for at least 30 days, please feel free to comment in this thread and do take the listed survey. Take care, V/R, Batch, a.k.a. XXX
    6 points
  16. So I did the treatment this week, Monday-Wednesday, Each day I was given 2 treatments that took about 6 hours each day. This is the concoction I was given: Day 1 of 3 IV Benadryl 25 mg IV Reglan 5 mg/5 mg IV DHE 0.25/0.5 IV Solumedrol 100 mg IV Mag 2 g Day 2 of 3 IV Benadryl 25 mg IV Reglan 10 mg/10 mg IV DHE 0.5/0.75 IV Solumedrol 100 mg IV Mag 2 g Day 3 of 3 IV Benadryl 25 mg IV Reglan 10 mg/10 mg IV DHE 0.75 mg/1 mg IV Solumedrol 100 mg IV Mag 2 g No clusters from the start of treatment, during treatment and relief lasted 36 hours after the last treatment. I was hit with a very small cluster that I aborted with oxygen in 5 minutes and than another about 2 hours after that. Hope they are just little slap back type and I can keep thigs calm over the weekend. not expecting a cure here just a little break from the head banging.
    6 points
  17. Hello everyone. I've been getting cluster headaches every 2-2.5 years for 4-6 weeks at a time since 2014. I am currently in the middle of a cycle and recently found this forum. I understand that there are mixed opinions about Sumatriptan here, but I thought I'd share this tip. My insurance only covers 6 autoinjectors per month and they cost a fortune after that. I found an online pharmacy called Springmeds that sells Sumatriptan vials outside of insurance for $55 for a 5 pack. I convinced my neurologist to send in a prescription for 10 vials and ordered two 5 packs for $110. I also picked up 6mm insulin syringes from CVS. I've been taking 0.2ml whenever I get a bad enough headache and it's been working great. The vial is labeled 0.5ml but I can still get 3 doses of 0.2ml so they apparently overfill them a little. I believe this equates to 2.4mg per dose, much less that the 6mg from the autoinjector, but still enough abort an attack and with less side effects. This gets me 30 doses for $110. Hope this helps someone. https://www.springmeds.com/productdetails/Imitrex-Vial-Sumatriptan-6mg-0-5ml-Vial-Box-of-5?uidtype=group&form=Vials&isGeneric=Y&strength=6mg%2F0.5ml
    6 points
  18. It is lonely at the top. That is why we have this place.
    6 points
  19. Hey everybody, let's celebrate! Hoping i had been attentive enough during the 1st Annual UK/European Patient Conference, i remeber that exactly today is the day of the 25th anniversary of Flash's first post on a clusterheadache messageboard. A moment in time that somehow was the foundation of all help, sharing and resesearch in this awesome community. Thank you Flash, Bob, PinkShark Mark - and everybody who was and is involved and engaged. You couldn't have done any better!
    6 points
  20. Hello. ...my mother was a Special Ed teacher, it is a subject dear to my heart...not the least of it being the times i saw her come home in tears...sometimes joy but usually frustration. no need to bore with details, but it is an underfunded, understaffed, underappreciated, under most everything but the front line folks who give their heart and life and mostly LOVE to the effort... ....i say this not in disagreement with this initiative at all, but to CAUTION to be VERY careful what is proposed/enacted. these kids absolutely need a type of care and instruction beyond what most "regular" classrooms can provide. i wonder if the experience of Covid has advised school districts on the needs of kids outside the "norm". i doubt it...but i don't know. what i do know is that regulating that these kids be classified as "special needs" w/o careful wording, will, in many cases, result in some districts dumping them into classes with developmentally disabled kids far below age normal. kids requiring one on one, sometimes very basic instruction, and frequently repeatedly. ...most anyone in the headache community realizes that it is not a cognitive issue we are dealing with, and placing these kids in the environment i describe will leave them with insufficient attention and instruction based on what is practical and possible. CAREFUL please...... best jon
    6 points
  21. Each of us could have been looking a lot better after that way overdone rager of a booze fueled 'Survey Complete Partayyyy'. The last thing I remember is repeatedly shouting "I'M A CLUSTER BUSTING MICK JAGGER, MOTHERF**KERS!!!" while vigorously strutting in the middle of the highway - that was probably around the time law enforcement got involved.
    6 points
  22. Just completed survey, so if @Bejeebercan strut his thing so can I!!!!!!!
    6 points
  23. I'm excited so I figured I would give a little update on my Abby girl. It's been a long half a year since her surgery with lots of highs and lows. She's an old gal so surgery was sketchy to begin with. Options were non existent seeing the tendon was severed, so surgery it was. She pulled through and got stronger with each day, started to stand and walk about quite well albeit with an orthopedic boot. She has adjusted to the boot very well which is a good thing as we recently learned that she will be in it permanently. They fixed the area that was severed but the rest of the tendon was stretched to badly to allow her to be without the boot for support. She is the goodest of good girls! Today she trusted herself to do her favorite thing of all with the boot on.. God is good!
    6 points
  24. I haven't followed this story from the beginning so forgive me. When I looked at the first picture, I thought "Abby doo"? Odd pet name for her S/O..... Then I saw the dog...... I'll just leave via the back door.....
    6 points
  25. It's good thing to try various techniques. What works for one doesn't work for all. I talk to people that have successful aborts in a short amount of time using methods that would just serve to piss me off while getting hit. It works for them and that's all that counts in my book. I would recommend a complete exhale in every breathing cycle as a starting point. Where someone goes from there will vary with the individual....and maybe from hit to hit.
    6 points
  26. The above answers and suggestions are wonderful! My only 'ad' is to hit the caffeine on your way to the O2. I keep strong coffee in the fridge for this or V8 Energy. I sit and rock when on O2. I start my breathing on my way to the tank. You can really help yourself conserve O2 this way: Exhale with force to ditch all the CO2 in your lungs and then do a deep inhale. Hold for 2-3 seconds and exhale with force, ending in a crunch. Likely you will get in 2 to 3 of these before you grab your mask. Continue with the deep inhale and forceful exhale for a bit. Then find the rhythm that works for 'that hit'. I find them to have their own variations that require different breathing techniques. The rocking rhythm will change too. I try NOT to worry that I am doing it differently than I did for the last hit! Just pay attention to which rhythm or speed is working for that hit. It may be different from the last 5 hits you had and that is fine. After the pain is gone, you really must do your 'post hit' breathing time. I have tried to eliminate that part and wind up doing a bat turn right back to the tank within 20 feet or less! Post matters. Do about 5-10 minutes with the regulator set for normal breathing. I count them to be sure that I do enough and don't have to 'clock watch'. I can set my regulator at 2-4 lpm for that part, so it is not burning a lot of O2 up on me. ATB!
    6 points
  27. I would say that a deep inhale/full exhale/inhale again every two seconds (26 times/minute, as you say) is not ideal. The reason for a high flow rate is if your regulator can't keep up with a preferable breathing strategy, but it feels here as though your regulator is dictating your strategy. While people develop strategies that are customized to what works for them, I would say (as it says above) that the most basic, or maybe "standard," approach is to start with a full exhale (with crunch), then a deep inhale, then hold for a couple of seconds, then a very full exhale, and repeat. This is going to take roughly ten seconds. If this technique works for you, you might be able to use a lower regulator setting for that pace and the bag will be full when you're ready. I think this video -- https://www.youtube.com/watch?v=PtFHRIQN17s&t=5s -- is quite good. You can start at around 7:30 in the video to see the breathing technique. I'm imagining that you have to "go lay down" after five minutes because you are practically hyperventilating, but taking a break while using oxygen doesn't seem like an effective strategy. Let us know how things go.
    6 points
  28. Congratulations on being pain free for 1 whole year . @BoscoPiko
    6 points
  29. Back home know. Just want to say a BIG thankyou to are vice president .Ainslie Course for a great weekend in Glasgow
    6 points
  30. 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
  31. 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
  32. Here I am roughly 9 hours later on the come down!! Had a fantastic experience honestly. Really eye opening and even now I feel very at peace. I am experiencing a minor shadow at the moment but nothing all too crazy!
    5 points
  33. @Bejeeber @BoscoPiko @xBoss @devonrex @CHfather Thank you all for your kind responses and all that you do for the CH community. I made this post about 2ish weeks into the D3 regimen, and fortunately things have gotten much much better since then. Still not completely PF (constant low-level shadows that are getting incrementally better each day) and am over 3 weeks removed from my last Kip 6+ attack. because of this, I didn’t find my way back here until just now. Something about when you’re finally not in agonizing pain, you almost want to forget it ever happened and avoid even the thought of it. I spent hours combing through the files and posts here regarding pristiq and L and have come to the conclusion to just go for it. There’s so much anecdotal evidence from both sides of the coin that I just really have to find out for myself if it dampens to effects. I have finally gotten ahold of some vitamins L and M and actually just dropped 1 tab about 20 minutes ago. Fingers crossed for some good ole D3 + L synergy to help me cross the final hurdle into PF bliss. Will dose again in 5 day intervals until this motherfucker gets the hint and leaves me be. Will update how the trip goes!! PF wishes to you all!! Also… O2 is in the works! Have an appt with my PCP next week for blood work and to discuss oxygen. I know he will write me a script for it, fortunately he’s a huge patient advocate and realizes that he doesn’t know everything there’s is to know about everything, and he was super receptive to the information and data I brought to my appointments showing the efficiency of O2 and even tryptamines
    5 points
  34. To connect with others who understand your experience with cluster headache, check out our virtual support groups and one-on-one support. https://clusterbusters.org/support-groups/ Please consider supporting this and other programs with a one time or recurring donation. https://conta.cc/43RhF1N
    5 points
  35. Merry Christmas ya'll!!
    5 points
  36. Hey CB, I was just thinking about how all my sites and apps are set to dark mode but you cannot do that here. Today is a light hurts day and I really wish you guys had that!
    5 points
  37. Spiny has done so much to break me personally out of cluster hell and get me PF again, I’ll never be able to thank her adequately, and with her 12 continuous volunteer years here, involving over four thousand forum posts of truly expert, helpful, encouraging guidance, I know there are countless legions of others who have benefited from the same. As we all know, bad (as in really bad) things can happen to good people though. Now her adult daughter is suffering from the worst sort of utterly debilitating afflictions. Of course Spiny is devastated by this, seeing her child disabled and screaming in pain every few minutes. Today, true to form, spiny is traveling across the country to be with her daughter, to help her through, and to eventually bring her home (which will need to be modified-for-wheelchair-access) for care. Some real funding will be needed to make this possible, and there’s a GoFundMe that members here are already starting to contribute to in an effort to bring an aspect of ‘good things can also happen to good people' to this heartbreaking situation. For me it is also at least one way of expressing gratitude for all spiny has done: https://www.gofundme.com/f/usn7ba-help-me-bring-my-daughter-home
    5 points
  38. To All, I'm in the loop with Daisy and there's nothing wrong with a vitamin D3 maintenance dose of 40,000 IU/day as long as you drink 2.5 liters of water/day, avoid calcium rich foods like al dairy products and see your PCP lab tests regularly to ensure serum calcium and PTH remain within their respective normal reference rang limits. Take care V/R, Batch or XXX.
    5 points
  39. Phil Battle speaks on his journey with CH.
    5 points
  40. Small Victory!! I got my mask!! Not from the doctors / insurance but from Clusterbusters.com <3 Came 100xs faster then then Apria delivered.
    5 points
  41. if you have the script from your doctor for the oxygen start calling around to all the vendors in your area and get the ball rolling. You will probably only need the tanks from them and get your own regulators and mask. I pay out of pocket for my oxygen as it is cheaper for me that way. Here is a few links to regulators and the oxygen mask you will want to get for your setup. You will want a regulator that goes up to 25 LPM with a barb fitting for the tubing to attach to it. Mask: http://www.clusterheadaches.com/ccp8/ 540 Regulator for larger size tanks (M, M60): https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 or https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=pd_lpo_sccl_1/135-6324550-2316945?pd_rd_w=zpYOS&content-id=amzn1.sym.116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_p=116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_r=K8YQYE2NB64K5QQ6HF88&pd_rd_wg=ocBIu&pd_rd_r=c4fe90c6-deed-4591-8360-0bc059358ef9&pd_rd_i=B07ZS9JK7P&psc=1 Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator or https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ/ref=asc_df_B00BLQKKQQ/?tag=hyprod-20&linkCode=df0&hvadid=167135816306&hvpos=&hvnetw=g&hvrand=18085319068956249510&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9007275&hvtargid=pla-500449369392&psc=1
    5 points
  42. Hey there CE, The pain can certainly be isolating which can lend a helping hand to allow loneliness to creep in. Having supportive family like you do is so important (as you realize). Lot's of us on here to talk with so no need to allow yourself to feel so lonely prior to popping on here. Sometime just reading on here and talking to others that understand what your going through can really help keep the spirts lifted. I see by this comment that you have a wonderful sense of humor Trust me laughing at this sh*t show can be a saving grace of sorts. I hope you get your o2 and find your way out of this cycle sooner than later.
    5 points
  43. We need your input. Clusterbusters is excited to share our new and comprehensive Cluster Headache Medication & Psychedelic Use Survey. The purpose of the survey is to better understand what medicines, alternative substances, devices, procedures and psychedelic substances people use to treat their cluster headache. The survey is open to people 18 years old and older who have been diagnosed with cluster headache. This research is a joint project with UTHealth Houston. The survey is expected to take 20-45 minutes to complete and no personally identifying information is collected. The results will be used for research and advocacy purposes. The data will advance scientific understanding of treatments for cluster headache and contribute to the development of new therapies. Please take the survey and share your experiences: https://survey.alchemer.com/s3/7134634/Cluster-Headache-Medication-Psychedelic-Use-Survey-2023
    5 points
  44. As a new member (but looooong time sufferer 23 years) I am so grateful for everyones responses. So amazing to feel seen and understood. I have been having better success with full CO2 exhalation, ending in a crunch, then long deep inhalation of O2. I have basically been shutting the tank off and on and finding a rhythm so that when I need that next hit the bag is full but I'm not wasting O2 into the room.
    5 points
  45. Took it last week. Agree that we all should take it. A nudge is a nudge
    5 points
  46. I took the survey and am now strutting around all proudly and junk as a result. Please everyone take this survey thang.
    5 points
  47. ...OXYGEN!!?....dump the amitriptyline, worthless
    5 points
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