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  1. 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
    7 points
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. You may be right about this Pebbles, we simply do not have enough information yet. What I know is the following, the headaches started with the infection. While they have most of the defined symptoms of cluster headaches, there are some differences, so it is possible that they are not classic 'cluster headaches'. Though as to that, I wonder if it is really possible to clearly define cluster headaches in that way or if like many other syndromes involving the human body such as anxiety and OCD, etc, or autism and Aspergers, etc, there is really just a spectrum with a lot of overlap in a lot of
    5 points
  10. Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.
    5 points
  11. Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years. I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer. The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result
    5 points
  12. D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and
    5 points
  13. Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster he
    5 points
  14. 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
    4 points
  15. 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
  16. No Escape Today is like any other, Yesterday, today & tomorrow, all blur together. Day in and day out, everyday the same, I wish I could escape this game. The Beast visits most when least expected, My face drains of colour, and I feel quite infected. Into one eyeball, always just the one, the Beast comes, Blinding and piercing like I’ve been poked hard, with a thumb. My eye seems to freeze as if turned to ice, And the pressure builds as if placed in a vice. My nose starts to run and my eye begins to tear, As m
    4 points
  17. ....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
  18. 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
  19. 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
  20. Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in
    4 points
  21. 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
  22. 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
  23. 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
  24. 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
  25. ...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
  26. 4 points
  27. 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
  28. He's either lying or incompetent.
    4 points
  29. Yes, Ketamine is used for CH. We have members who have received this treatment from their physician. We would never encourage any member to take 2 bottles of cough syrup. There are many side effects, even at the recommended dosage, so why jump in for two bottles and risk a major problem because you are taking MAOI's or other necessary meds for other conditions? Robitussin in not without risk in the first place. And is not for those who take certain drugs on a daily basis. The 'proper' place for this post would be under Research &Scientific News. Members are always interested a
    4 points
  30. No. Just no. This is rather like saying 'Lets kill our liver with Tylenol today!' In many states Robitussin is kept behind the counter at any pharmacy, due to people taking it for the so called 'high'. We know that opioids do not help CH. The 'quote' from Clusterheadaches does not produce a return if clicked on and was from 2003. I am fairly sure that you could find many totally unsuitable ideas on many boards if you care to invest the time to hunt for such posts. If this was valid and valuable information, after 17 years, there would be current posts reflecting the success
    4 points
  31. ...............advising 4-8 X typical dosage of ANY med is irresponsible.........
    4 points
  32. Bust, the Energy Drinks make me sick and shaky. I keep coffee in the fridge made by the 'cold brew' method. Namely, you put grounds in the holder that goes in a jug and stick it in the fridge. In 24 hours, you have cold brewed coffee. Just convenient for me. I used to just make extra coffee and keep it cold for a hit. Caffeine alone works well for me and some others as well. If you can enjoy a cup of coffee with no issues, then I would try that. Cold is best for most CHers. Just the cold seems to help at times. Someone once said ' One for drinking and one for rubbing.' They were sa
    4 points
  33. 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
  34. You are getting the run around. Clearly your neurologist is either disinterested or not competent to take care of cluster headaches. Yes, your primary can prescribe oxygen as your neurologist can. If you are in the US any licensed physician can prescribe. It is possible the O2 home suppliers are difficult to work with and that is why the neurologists office is punting. Its more likely the neurologist office isn't familiar with the process. Depending where you live it might be worth a call to a pulmonoligist office and talk to the nurses (they do the orders anyway) and ask for advice rega
    4 points
  35. 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
  36. 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
  37. 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
  38. 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
  39. I am very happy Tom has some relief but caution is advised. Stem cell therapy comes in many variations. The source of the cells, method of delivery and the criteria for success. There are a couple of case reports describing some degree of relief and a very small study showing some reduction in headache score but no meaningful relief. The postulated mechanism of action when treating trigeminal type pain decreasing inflammation. This makes sense because many treatments are aimed at reducing inflammation. Caution should be stressed because, in general' the data surrounding stem cell therapy
    4 points
  40. 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
  41. I GOT THE OXYGEN!!!!! E tank. I already ordered the mask and will order the regulator. Thankfully, the vitamin d is keeping my clusters away. But it’s been some good days guys!!!
    4 points
  42. Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an
    4 points
  43. I wanted to take a second to send a HUGE thank you to this website and it’s moderators. Four weeks ago, after a 15 year absence, my CH returned. And with a pain level I don’t remember. I didn’t know what to do and couldn’t remember my drugs I used to take or if there were even any changes in prevention and treatment. I went to my own general practitioner and as I explained what was going on, he began thumbing through his drug catalog, gave me a referral and that was that. I called the doctor he referred me to and he couldn’t see me until the end of February, clearly (or hopefully) beyond my
    4 points
  44. @CHfather is absolutely right, listen to everything he says. I can't stress enough how important oxygen is for the treatment of CH. I can't say for sure you have CH, I am not a doctor. But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen. I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes. Imitrex makes me feel tired and terrible and can make
    4 points
  45. Why do I feel like I do after a Jehovah's Witness or Hari Krishna just knocked?
    4 points
  46. DK, I've been keeping up with the thread, wondering if it was going anywhere. As others have pointed out. Someone comes to the board every few weeks announcing a cure. There is no cure. Only remission. I myself have gone 2 years without an attack, then back to episodic then to chronic. Others 10 years or more and it comes back. I manage my beast with the natural medicines primarily discussed on this board. That said. I like to follow Bob's lead and let people speak freely without fear of repercussions. MM was once thought of as being a quack management technique. It is now
    4 points
  47. Forward this post to 10 of your friends or the "cure" will disappear forever.
    4 points
  48. hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapaci
    4 points
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