Chronic cluster headache sufferer here. To sum up, I’ve been: Shot, stabbed, shot a second time, broke 7 bones in various appendages, hit with a baseball bat, hit by a car, multiple teeth issues, and migraine headaches, sprinkled for fun.
Basically, I took steve-o’s motto and ran with it (your body is a ride, ride it until the wheels fall off).
None of this comes close to the lightest cluster headache I’ve had. The sheer panic, the knowledge of what’s about to happen, the inescapable amount of pain I know is coming… Fuck CH.
Is there a connection between your lifestyle and the CH? Did one of these cause the other, in whichever sequence?
As far as lifestyle, no, there’s no connection. There are several common triggers of headaches, and trust me, I avoid any and all of them.
I’m an episodic CH sufferer. No other pain comes close in comparison. You’re not alone, brother (if I can make that gender assumption given your user name).
Stay strong, brother.
What do you do to get put through all that?
Made light of someone else’s cluster headaches in a past life
I just played a lot of sports, some of them extreme (downhill biking). Also, I was born and raised in a truly poor region. And I was just very dumb and tough. And tremendously irresponsible
It’s the best remedy I’ve tried insofar as it’s the only thing that has worked as any type of preventative, and the only thing that has disrupted a cycle for me. It doesn’t work as an abortive, in my experience, but it beats every pharmaceutical I’ve tried in every other way.
Sourcing it has been an issue, and it sucks to open yourself up to criminal offense for not wanting to live in pain, but we do what we have to do.
If you can jump through hoops with doctors and insurance, look into Ajovy. It’s the only preventative that helps with my headaches, and it helps really well. But it’s an expensive auto-injector and I had to run through several meds that don’t work before insurance would approve, and I still need a discount card to help with the copay, but I’ve had about a 95% reduction in headaches, and the ones I’ve had were mostly mild and easy to control with Tylenol or at most a triptan.
I have, and I tried one time, about 8 years ago. Efficacy wasn’t what I expected, it took me out of my cycle for about a week. But then I was back on the pain train. Not sure how well it would work for me to be in jail (if I get caught with shrooms) + trying to find a way to pace around in a holding cell. Being such a niche disease I kinda have to hope for pharmaceutical companies to develop proper legal treatment “some day”
Top 3:
- Shingles in my eye / face / scalp.
- Appendix ruptured while I was on the toilet.
- Kidney stones (multiple times)
I am picturing this all happening simultaneously
I haven’t had shingles, and my appendix lasted until I could get it out, but I am with you on the kidney stones.
I’ve had 5 or 6 kidney stones and “the big one” has been harmlessly hiding in my kidneys for a few years. Every time, I think I’m going to power through the pain because the ER only gives you like one or two doses of Toradol and sends you on your way with FlowMax and useless NSAIDs which I can just get off the shelf. I’ve never powered through the pain. Every time I wind up paying like $250 for 4-6 hours of relief.
To this, I’ll add I’ve had migraines that made me want to drill holes in my skull. They’ve been bad enough that if I’d had a gun, I’d have used it. I’m not saying they hurt more or less than kidney stones, but I can’t tolerate headache pain like that. It’s the difference between “my back is in agony” and “existing is agony.”
Man those migraines sure feel like a little extra space up there would sure fucking help though.
Doesn’t have to be deep just given enough room for the pressure to even out right?
I got 2 hits of morphine and when that didn’t do fuck all for my kidney stone, they gave me ketamine. Can’t believe you couldn’t get anything stronger, that sucks.
I guess I shouldn’t have said every time. The last two or three times (still used to try to power through just to not go to the ER). They used to give me Vicodin or Dilaudid, but they’ve gotten super stingy with opioids. Which I understand but for freaking kidney stones???
I get opioids are a big problem for some people but back in the days of over-prescription I’d have spares for years that could help when my back went out or something. I was a very responsible user, frequently not taking them as soon as I could bear the pain without them. They need to get back to a middle ground or find less addicting medicine that works as well.
Oh no, shingles in your eye?? How was that?
It was the most painful thing I’ve ever experienced.
Also, I had so many eye doctors appointments. They were worried I’d lose vision in that eye. Luckily I didn’t.
Damn. Glad there wasn’t any vision loss. Yeah I had shingles before too and got treated pretty quick, but it was definitely freaky reading how it could spread to your eyes and cause permanent damage.
The circumcision I had in my mid teens. Well, not the circumcision itself, but the erections I would get in the morning which would rip the stitches out of my cock, bleeding until I masturbated with anesthetic gel to orgasm just to stop the pain.
In which context does someone get a circumcision mid teens?
Phimosis
I have a family member who got one in his 30s.
Erections began to hurt so much due to phimosis, he and his wife weren’t having sex.
Circumcision is not exclusively for the religious, there are medical reasons it may be chosen.
Indeed. I hadn’t realised that the skin should be able to retract over the glans until a friend had mentioned an encounter with a lass. I thought… eh, over the head? He confirmed yes, over. So, I went home and tried it. Fuck me that hurt, I still have the scar despite the circumcision. Told my mum, went to the doctor, confirmed yes, need to chop chop.
Two kids in my neighborhood did.
Jesus a chastity cage would’ve actually probably helped you
Was bending a piece of sheet metal on a 10 ft. bending brake. Stupidly had both my hands in the jaws trying to adjust the workpiece when the jaws partially closed on my hands. Imagine having all your fingers sandwiched between two thick steel plates because that’s basically what happened. It wasn’t really pushing down but just the weight of the jaws alone was enough that I was stuck and couldn’t get my hands out.
It didn’t hurt initially. Just felt like very intense pressure. I started hollering for help. Eventually another guy in the shop saw me and came running over to open the jaws. As soon as he did, I got this sharp, shooting pain in all my fingers. I think I hopped all over the shop, screaming obscenities. Had to just hold ice packs all day to keep the swelling down.
Didn’t lose any of my fingers. Didn’t even break any bones, somehow. Just bruised them really severely. It hurt like a son of a bitch but I was incredibly lucky.
Fucking Crohn’s Disease sucks. All of my “adventures” with it have been painful, but the one that takes the cake:
A couple of years ago, my GI wanted me to do a pill endoscopy test, which is where they basically have you swallow a pill that has a camera embedded in it, and it takes pictures while it traverses your insides. You’re supposed to naturally “pass” it like anything else you eat, but in my case I did not, and it got stuck. My GI did not believe me, and it just kept getting worse and worse. To put a timeframe on things, this happened in early February of that year.
I had ER trip after ER trip throughout that year, they determined that it wasn’t going to pass on its own and needed to be surgically removed, but since it was not “life threatening” they couldn’t just wheel me into an OR immediately and have it done, it had to be scheduled. Took forever to find a surgeon to schedule me under. One of the times that I was in the hospital due to this, the doctor on my “care” team wanted me to do what she called a “supreme bowel cleanse” to see if that would dislodge it. I was hesitant to do it, but I was pretty much willing to do anything at that point to end this nightmare, and only because she promised me that if it didn’t work, they’d take me into surgery and do it the old fashioned way. That ordeal was terrible, I’ve had Crohn’s since before I was a teenager, I’m very used to doing colonoscopy prep - this was far worse than that, the pain was unbearable and the amount of bowel cleanse that they gave me must’ve been right at the border of their ethical limits (or at least, I imagine that has to be a thing, right?) and plot twist she did not hold up her end of the bargain when the pill still did not pass, instead she gave me a few days worth of pain meds and discharged me the next day.
My condition continued to get worse and worse, yet my operation wasn’t scheduled till early July. The hospital that the surgeon worked for agreed to pre-admit me into their care 2 months in advanced because it got to the point where I could barely even hold down regular water and I had to be put on IV nutrition with a PICC line and all.
Fast forward to the operation day, they ended up having to do two surgeries in one go, the first being to remove the pill, and the second was to try to fix the damage that had been revealed on the camera. The moment I woke up from the operation I was screaming in pain, and begging them to put me back under (which they could not do). They kept giving me pain meds and I’d end up passing out eventually from the pain, wake back up, and the whole ordeal would start again. Eventually they put me on one of those self-administered pain med pumps where I could click a button every so often and it would give me some pain medication through my IV.
I didn’t end up going home until the very beginning of September (first week I believe), and I had arrived there sometime in the middle of May. I will never do one of those pill endoscopy tests ever again. I also switched GIs since my current one at that time had refused to listen to me when I told her something was wrong at the beginning of the “experience”.
You win. Give this man the $10000.
I also choose this guy’s Crohns.
The most intense physical pain I ever felt was waking up after impacted wisdom tooth removal. One side of my face was appr. 3x the size of the other.
The second worse was last week; waking up from anaesthesia after having all 22 remaining teeth removed. It’s slightly better now and I’d put it at 8,5/10.
The worst pain I’ve ever felt was mental though. It started almost three decades ago when my father killed himself when I was a teen. To be honest, I never recovered. I’m a shell of a human being begging for release (death) daily while being too much of a coward to actually do it.
Oh, and after returning to work with 0 teeth, my coworkers now amuse themselves by making me say tongue breakers. I already knew they didn’t like or respect me before all this, but this really drove a dagger into my heart because it was someone I never would have expected it from. I’ve been at this company for 10 years and in this team for 5 and I’m fighting a daily urge to follow in my father’s footsteps.
He really had the right idea. I was pissed at him back then but I have more understanding and respect for his decision every single day.
That’s fucking awful. I genuinely hope you find yourself surrounded with people who love and respect you. I know life can be utter shit, but I’m glad you’re still here.
Perhaps you can get a gofundme for dentures or implants in the future? It’d improve your quality of life and is worth pursuing if you feel like it’s something you have energy for.
22 teeth removed? What in the world?
Check my post history, there’s a picture.
Ok so here’s the kinda crazy part. I’m a sideshow and fire performer. I’ve suffered large burns, I can drill into my sinus cavity, I had my tongue surgically split, I staple myself with an upholstery stapler all the time.
Nothing has beat dental pain.
Sorry, what? You drill into your sinus cavity? What does that mean?
It’s called blockhead
I do it with icepicks, nails, and even power drills. I can also mental floss, in which a tube goes in the nose and out the mouth, though I’m still new to that one. Power drills are very uncomfortable and have caused the most nosebleeds.
That’s super cool! I knew a guy that would eat small ropes and pull it out his nose but… Wow that is next level. Thanks for sharing.
Damn, that’s actually harder! Reverse mental floss
Wow. I’m super interested.
My wife said her dry socket was up there with birth of our large son.
Spinal Stenosis. Woke up one day feeling like my back was not only broken, but that I could feel the broken ends grinding against each other.
Losing people I loved.
Childbirth, my hand was killing me.
- Full bowel blockage
- Ruptured appendix
With number 1, by the time I got to the hospital my shirt was wringing wet with sweat, vomit, tears, and blood. I took it off and told the ambulance driver to just chuck it in the bin lol
- I walked around with a ruptured appendix for weeks without knowing it. In my case, the pain was very minimal (not normal)
- there was so much raw sewage in my abdomen, they decided to gut me from my pelvis to my sternum, take everything out, and powerwash me
- there was a problem with the hospital pharmacy. I woke up in the ICU with zero pain meds and my nurse screaming murder at the pharmacy tech over the phone. “For the love of god he’s up, I need that morphine RIGHT FUCKING NOW”
- don’t know how long it took, but that was pure hell.
- then I got full bowel blockage, multiple times, throwing up and all, with my stomach cut in two trying to heal. Surprisingly the blockage was almost as painful as the unmedicated seppoku I experienced.
Take my upvote for bowel pain being horrific.
Another data point. I also literally broke my back from a fall on the ice. If bowel pain was a 10, I’d put breaking my back at about a 6.
I’m sorry for what you went through, but the mental image of being emptied and power washed is so goddamn funny.
It’s that type of thing that reminds me, oh yeah, we’re basically just machines made of cells
Omg. Bowel pain is the most excruciating type of pain I’ve felt, it’s about as strong as breaking a bone. I’m sorry you been through that!
I’ve never had that, but I have IBS-C and can see exactly how the pain could get that bad. Please tell me they corrected whatever caused it.
Kidney stones. I’ve had the tips of two fingers on my left hand chopped off, and even that didn’t come close to the feeling of a kidney stone rattling down the pipework.
I have Medullary sponge kidney, which in short makes my kidneys a stone factory. It’s a love/hate relationship at this point. On the plus side, I’ve found drinking at least 2 liters of lemonade every day has done wonders to stop my kidneys from feeling like they’re trying to kill me all the time.
Reminds me of a person in Woodwork class who partially cut into their finger with the table saw
I also forgot one day to let the table saw get to full speed and was lucky I didn’t get wood launched at me because the teacher noticed and stopped me from using the saw
I absolutely hated myself for forgetting that basic step because I had used the table saw perfectly fine before
How did you get your fingers chopped off??
By sticking them where they didn’t belong… kind of hard to explain but I was working on a friend’s lawn mower and lost my balance, I tried to push against the mower to hold myself up but my hand slipped, kind of bounced off the ground and the mower blade managed to catch them.
It didn’t really hurt but I was more mad at myself for it happening. I brought the fingertips to the hospital but they were kinda smooshed, and they had to take a bit more bone out of my fingers so that they’d have enough skin to close it up.
Jeez dude I hope your hand is still functional ok
Oh ya, it’s fine… It took a while to get used to having slightly shorter fingers, and it feels weird as hell when you bump things with them without the normal fingertip padding (Now it’s just skin and bone hitting things) but I’m used to it.
Toe-to-heel second-degree burns on both feet.
I was 10, and stood up in sand that had been heated by a portable barbecue. The irony is, one of the adults had moved the grill so nobody would step in the coals. It had sunk its little wire legs and had been sitting directly on the sand for a couple of hours.
I stood up, screamed and ran for the ocean. About halfway there, the blisters puffed up and I had to crawl until someone figured out what was happening and hauled me into the water.
A spinal tap. It felt like a toothache in my entire body while a demon choir sang in a high pitched whine.
When I was 11 there was a chance that I had contracted meningitis.
Wanted to post the exact same thing. Experienced that a few months ago. Absolutely horrible. And i think the doctor’s instructions made it worse. They told me to slump together and not round out my back. But after several failed attempts I rounded out my back and it finally went in. But that’s only the beginning. The sucking sensation was so awful. It felt like they were trying to drain my brain.
I can still feel it.
Yeah they had me round my back, were pretty clear about it, but this was 30+ years ago so maybe some medical knowledge has come around, but I’ve not heard of it.
Sorry you had to go through it, sure wish they had a better way to get spinal fluid for tests.
I heard wild stories from paramedic about people with chronic pain.
It is not uncommon to get calls from relatives like: " Our grandma fell, broke leg, and didn’t want to bother you. She is on other side of city and we can’t get to her."
And it turns out that it is open fracture but because she is in pain all the time, she didn’t think it is big deal.
