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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
    8 points
  4. I guess not permanently, but I have been in remission since 2011. Last cycle (2011) busted with RC seeds.
    6 points
  5. 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
  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 c
    6 points
  7. I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. Best wishes from me, BOF. Get well soon and rejoin us when you can.
    6 points
  8. 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
  9. .....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
  10. 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
  11. Hi all, Thanks to @xxx 's vitamin regime, I seem to be skating past my first cycle after taking an earlier version of the regime, and I thought I'd share my results so far. After my previous cycle about 6 months ago I started taking 10k/day D3 gel tabs plus the magnesium, Mature Multi, Super K, and fish oil supplements recommended (I see Batch has updated the regimen a bit recently, am currently looking into this) Due to Covid, I have yet to test my D levels, but I am planning to see my Dr for a followup soon. None the less, my usual cycles last 6-10 weeks of daily episodes
    5 points
  12. Hi all, First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend. My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the
    5 points
  13. Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every nigh
    5 points
  14. I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule.
    5 points
  15. This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur
    5 points
  16. 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
    4 points
  17. trjoas, Bless you a hundred times for your perseverance and your positive mindset.
    4 points
  18. 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
    4 points
  19. 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
  20. ......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
    4 points
  21. 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/
    4 points
  22. I dose all the time (about 15 times a year) and besides a dentist trip triggering I have skipped three solid years of cycles and counting.
    4 points
  23. I hope everyone is noticing that we are discussing two different companies- MindMed and MindMend. Looks like MindMend is just trying to be the next wave of dispensaries, not research.
    4 points
  24. Hi All, I, for the first time am currently following though with the D3 approach. It's been almost a week and a half of stagnently starting it as I did not have immediate access to all the vitamins mentioned. However I do now. I have my O2 ready on standby. Whilst I always hate to count my chickens before they hatch, there has been improment. ie. From 9 nocturnal attacks, I'm gone down to 2 per night. I have been stealing much more sleep in the last 3 nights, which feels great. I know It does take roughly 3 weeks to kick in correctly as I am still loading as per th
    4 points
  25. Hi all, now that I have found relief, I thought I would circle back and post about it here. I am not a doctor but this is my experience and obviously is not advice. I got a terrible 'flu' when I was 15 and got lots of persistent symptoms including daily brain splitting headaches that lasted for 45 years. That's the very abbreviated version. My headaches had a lot in common with cluster headaches but also had some differences. Busting was almost the only thing that helped me but I felt terrible when I was doing it so I didn't do it as often as I should to keep them at ba
    4 points
  26. Good day all Just an update. It's been well over 3 or 4 weeks into the D3 regimine. From 9 or 10 attacks to 0 per night. I feel great. Just having a full night sleep after so long is heavenly. I must say that this is a breath of new air into my life and I found purpose to live again. Too late for regrets now as this could have saved both my hips and needle through me face and other painful procedures I put myself through out of haste and frustration. However, I see only positive things coming my way and there are basically no words to express my gratitude to tho
    4 points
  27. 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+ atta
    4 points
  28. Spiny, J and Bejeeber no words left for your kindness in this difficult time,,,,,, at present i figured out that i should only continue Paxil (Paroxetine CR 12.5 mg) without mixing it with other tabs, it seems it is working. Sure, going to update you in coming days! Love, Respect and Happiness to you people!
    4 points
  29. 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
  30. ....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
    4 points
  31. 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
  32. 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&
    4 points
  33. https://www.biospace.com/article/releases/phase-2-clinical-trial-of-lsd-for-and-quot-suicide-headaches-and-quot-begins-treating-patients/?fbclid=IwAR2i4zGnc86d3Hijjzi4vxCBi87AlgJvc5Naeh0wlcXhQP-bgCKFc_h5YZM Phase 2 Clinical Trial of LSD for "Suicide Headaches" Begins Treating Patients Published: Jun 08, 2020 MindMed Is Collaborating on a Phase 2 Clinical Trial of LSD For Cluster Headaches with University Hospital Basel's Liechti Lab BASEL, Switzerland, June 8, 2020 /PRNewswire/ -- Mind Medicine (MindMed) Inc. (NEO: MMED OTCQB: MMEDF), is supporting and collaboratin
    4 points
  34. Welcome to the community Nick! Unfortunately, there aren't any answers to your questions that are set in stone! However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal. The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly! And,
    4 points
  35. WOW!...what spiny says!...feels like we been peeking at each others homework! ...the only thing I would add to try is a technique a respiratory therapist (thanks Judy-Bob) once advised that has served me well....called pursed lip breathing...you make your lips real small and forcibly "puff" out air causing back pressure...opens airways, improves oxygenation and CO2 expulsion....google it for a better explanation .... OXYGEN ROCKS!!!!
    4 points
  36. Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet
    4 points
  37. ...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O
    4 points
  38. I have a demand valve, several 25 lpm regs and a 40 lpm reg. My advice is always this...if you have a proper mask like the ones we all recommend here and you can't "outrun" a 25 lpm reg with your effective breathing technique, a demand valve won't help your abort times. Now....what do I mean by "outrun". If you are constantly having to wait for the bag to fill you are outrunning the flow. If there is very little or no wait then you have enough flow for your technique and more flow won't be of use to you. Now....for the sake of discussion you are outrunning your 25 lpm reg and would benefi
    4 points
  39. He's either lying or incompetent.
    4 points
  40. ...............advising 4-8 X typical dosage of ANY med is irresponsible.........
    4 points
  41. As far as I know all you need is the prescription. That could come from either of the 2 doctors, then you can call around to local O2 suppliers and work out the rest with them. I would not get to hung up on the flow rate of the regulators they give you because most likely you will want to buy your own, same goes for the mask. I found it much easier to make the calls to the oxygen providers myself, tell them what I wanted and what I need the doctor to send them and them call the doctor and tell them what to write on the script. It is a pain in the ass and yes you are doing someone else job but
    4 points
  42. Hi Doc J...glad ya found us.. ...read this site and others like your life depended on it...CH aint gonna kill you but that's the attitude ya gotta have.... because we are, in many cases, our own best perhaps only advocate... ...don't assume just any neuro 'knows" CH...many don't...best to find a headache specialist... ...if the Zomiltriptan is oral you're gonna be disappointed....too slow....an injectable or nasal form works much quicker with your goal to use the least amount possible since rebounds and side effects can be considerable. Imitrex comes in 4 or 6 mg statdoses....ma
    4 points
  43. Dr J, (hey, do you play basketball?) I ++ what others have said above. 100 percent high flow Oxygen is a life saver. You have to get on it before the attack ramps up. If you feel one coming, go ahead and hit the O2. The earlier you get on it, the better it works. Also, my go to are energy drinks. For us CH'ers, for some reason I think everyone I've spoken with can drink them anytime at night and still fall asleep. When I get a night attack, I hit the O2, and carry the tank to the fridge and get an energy drink. Slam half of it. Back to the O2 and sit down (Rocking for some reas
    4 points
  44. All, It's with a heavy heart I have to do something today that I've only had to do once before. Ban someone from the board. This action was not taken lightly. I'll leave details out, but nearly every personality conflict on the board for the last year or so all involve one poster. I've asked politely. The mods have asked politely. This poster has received warnings and yet continues to post inflammatory remarks. There seems to only be one action left so that members here can focus on helping one another, that's the reason we're here and the reason the board is here. To help, n
    4 points
  45. As is said here, Dr.J', welcome to the community and sorry you have to be here. I don't think anyone can really answer your question about what your future cycles might be like, except to say that you will learn to manage them so that they are far less awful than what you are experiencing right now, and it's not impossible that you will find a way to eliminate some or all of those cycles. I think this post and the links within it will provide you with a pretty good tour of treatment possibilities and options, and some things (like triggers) to be aware of: https://clusterbusters.org/forums/t
    4 points
  46. I like being oblivious about such things and do not envy such a duty. The moderators have earned my trust and I trust their judgement. Your work is appreciated.
    4 points
  47. Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though. We collaborate with each other a lot but as an EbE we do not speak out (=advice) about t
    4 points
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