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?
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).
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 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.”
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.
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.
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.
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.
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”.
