Leaderboard

FWIW, that recent big study of people with CH (more than 2500 respondents) asked people to rate the pain of conditions they had experienced. I can only paste in the data here. Column 1 is the "minimum" rating on a 1-10 scale (not sure what that really means here), 2 is the maximum, 3 is the average. I think one reason I can relate a little to the CH experience is that I had pancreatitis (second-highest average rating after CH; ahead of childbirth) of unknown origin for several years (one long bout and then frequent shorter ones). It was agonizing, and no doctor could figure out what was causing it or what to do about it. Finally I correctly self-diagnosed the cause: MSG! So, some similarities as I say to the CH experience, but still nothing like the pain level. (This self-diagnosis (which was accurate) is one reason why I'm adamant about asking people whether MSG might be some kind of trigger for their CH attacks, and why I compiled the "triggers" doc in the CB Files.) Cluster Headache attacks 0.00 10.00 9.58 Child birth 0.00 10.00 7.21 Migraine 0.00 10.00 5.61 Shingles 0.00 9.40 4.59 Broken Bones 0.00 10.00 5.23 Heart Attack 0.90 10.00 5.07 Herniated Disk (i.e. slipped disk) 0.00 10.00 6.16 Arthritis 0.00 10.00 4.04 Sciatica 0.00 10.00 5.10 Kidney Stones 0.00 10.00 6.87 Gall Stones 0.00 10.00 6.30 Pancreatitis 4.00 10.00 7.45 Fibromyalgia 0.00 10.00 5.64 Spinal Tap 0.00 10.00 4.61 Gunshot wound 1.00 9.00 5.89 Stab wound 0.00 9.00 4.59 Biopsy (Kidney, Spleen, Liver, Bone Marrow or other major organ) 0.10 10.00 4.67

Thanks again as always CHF. I wish it would come up in a search for just cluster headaches. If you don’t know about “busting” and alternative options and specifically search for mushrooms and CH it can be hard to find. That’s what I meant...

FWIW, some years ago I put together these docs for CB for the purpose of sharing with family, co-workers, etc. A lot of tears while creating the first one. Living with CH - 8.5x11 - 9-15-14.docx 20 Facts brochure 8-24-13.docx

This isn't completely responsive to the previous posts -- just thoughts on the general topics. The rationale for not discussing busting at the general board has been to protect the posters, since search engines find things on the (open) General Board but don't find things on the closed boards. From some quick searching I did this morning, that still seems to be true, though maybe less so than it was at one time. (Incidentally, for those who want general anonymity, I'd recommend not using a username here that you use elsewhere.) Also, in a quick search using [mushrooms cluster headache], CB shows up on the first page -- it's a link to a subtab under "Cluster Headache" at the CB home page. When I use [seeds cluster headache] and [lsd cluster headache], the results are similar -- a page from that same subtab is among the first things that come up. I don't know enough about SEO to know whether more could be done to attract people with CH looking for general treatment options. The core files about busting -- the numbered files created by the great tommyd quite a few years ago -- still have good information, but they're outdated enough in some regards (dosage and blockers, for example) that you wouldn't really want people acting on it without checking in first. Until we have something up to date, I don't know what people would be referred to. The basic busting rules are extremely simple, but the nuance is a little tricky. (Interestingly to me, there's no discussion in tommyd's materials about slapbacks: I wonder if that hadn't been recognized then.) Growing is a different question, and I don't really follow posts about that subject very carefully, but it seems like the most important help in that regard is also in the nuance, not the basics. As Miz' suggests, when I first came here, in 2009, I was in a complete panic. There was a lot less to wade through then, but it still felt like too much! At the same time, TBH, there were a lot more people willing to do a lot of hand-holding (first-generation pioneers whose own lives/sanity had been saved and who were not just willing but anxious to pay it forward). I definitely think, as I have said elsewhere, that we need a "Read This First" section, but I'm not sure, as I have also said, how much difference it would make.

You couldn’t be further from the truth. I’ve suffered many medical problems. From having 22% of my body badly burned spending 6 months in the hospital having your skin and flesh peeled off every day down to bloody healthy tissue ( and I begged god to take me in my sleep every night) to having my hand and arm mauled by a dog and getting infected requiring multiple surgeries. All in all I’ve had over 25 surgeries from the age of 14-40 and the last 2 years with chronic CH doesn’t even compare. I’d rather have my skin and flesh picked off for hours a day then suffer with the 4-8 attacks I’m currently getting. But I agree with others here no one can compare their pain to yours and visa versa. It is well established that CH is the worst pain in medicine. May be you’re lucky and the CH you may or may not have ( its unclear to me from the sum total of your two user names and comments that you have the same thing as many of us). But I don’t judge, you shouldn’t either.

The molar pain struggle is real.

Doctors, like people, are mere individuals. And, like people, range from brilliant to dumber than a rock.

J, Thanks for the real world descriptions of this pesky little thing called pain. There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. But it is what I think makes Clusters uniquely extreme. Mox

Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was sticking out like a skeleton you see at Halloween. Of course both fingernails were peeled off as well. We were docking a large boat and my fingers got caught in a cleat. I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up. I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere. I finished securing the stern and port of the boat before showing my friend what happened. He drove me to the emergency room where they reassembled my fingers. Oh and without any anesthetic. I'm immune to the anesthetic they use for nerve blocks. My peak pain through the entire event was maybe a 4. My pain tolerance is VERY high due to my years with CH I can only assume. I've had 3 kidney stones. Passed one of them. Kipp 5 to 6. Other two had surgery to remove and were maybe Kipp 3 tops. To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer. My K10's are much worse. Everyone is different, but pain is pain. Support for our CH family here is what's its all about. J

During my net trips and so on, there have been accounts of people who have ch and have had traumatic amputations, they would choose the amputation again, same for childbirth, gunshot, pretty much any physical trauma you can imagine, hell I would pass kidney stones 5 times a day over this. Shock and pain closest is neurogenic shock, which can be caused by a sudden extreme onset of pain, causing blood pressure to drop, great thing about most of us, pain goes up on a curve, not sudden onset, so we can hit top of the line pain and not suffer the neurological shock effects. And yes, I have screamed nonstop, tried knocking myself out on a wall, there is a reason they are called "Suicide headaches" I speak from a former (Due to ch) first responder and remote field medic training. Shock is huge in that case, funny thing about things like traumatic amputation or severe injury, once the incident has finished, the body tones or mutes the pain signals down. Beside the initial massive outset, the pain does not stay at that peak. Except when a brain and a nerve decide to say, hey lets crank this up and stay there. Many neurologists and primary physicians are also seeing in CH sufferers ptsd, anxiety and depression. I have had really bad heatstroke, the nausea, dizziness, disorientation, dehydration, and that to me is nothing like a cluster attack, have had a half broken tooth abscessed and that is nothing like a ch attack. It is bar none the worst pain I have ever experienced in my life to the point walking into traffic is something I have considered, hell I have literally begged my wife to take me out with a baseball bat. Maybe you have been 'lucky' I do not know or a huge pain tolerance but even the Kip scale, pretty much the accepted pain scale for ch lists a 10 as screaming, head banging, er, suicidal.

I appreciate what you are trying to do and have often thought how to communicate the exquisite pain cluster headaches produce. In reality, like a mystic psychedelic experience, it is ineffable, there are no words to describe the experience. There is no empathy except from another fellow clusterhead. The whole thing sucks beyond measure and to me it doesn't matter if anyone understands so I don't bother. Words always fall short. For the persistent soul who presses the issue I direct them to YouTube and Dan's national geographic appearance. The video does more than words could ever convey.

I tend to agree with Johncluster here. But anyway, my take on this is that it's normal that someone who don't have CH do not understand what it is and how painful it can be. I am also not expecting that from them as they don't have the condition. There are also many clusterheads saying: "Oh migraine is nothing, or CH is migraine x 1000" or similar nonsense, while most of these people even never got migraine so how do they know the difference so well ? In my experience I prefer the severe pain of a 1 hour CH attack EVERY TIME above the miserably sick and almost near-death feeling of the most serious migraine attacks I experienced that last 72 hours. I am quite open to talk about the condition I have and that is also how I explain it: "I have CH. It's a rare neurological condition existing of relatively short headaches that can be very painful. Pain is mainly in the eye and it goes away while breathing oxygen. but I have to deal with this nearly every day". That's it, nothing more or less. What I then see is that most of these people are looking it up on Internet for themselves to get some more information or stumble on a video that shows what such an attack really is. Of course if you try to convince them at all cost how painful CH is and comparing it to the most grueling tortures, they will look at you like you are an idiot. Best Regards ! siegfried

That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened, many people did , who had to endure this kind of torture as prisoners of war.... The pain is bad but compering it to gruesome horror amputations is just insane, way over the top. You would basically fall into a shock from the pain,,,probably lose consciousness, many times during the CH attack and after 2-3 events like this, you would probably die from shock or a heart attack .... Suicide rate in CH sufferer would be 100% Don't take in personally but , this would not help to in explain to people what CH pain is. My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion