[facetube]

Do you actually have a diagnosis of cluster headache from an MD?

The reason I ask: the pain from cluster headaches is legendarily terrible. The pain has been described as "remarkably greater" than migraine, and probably _at least_ on par with a spinal headache.

I don't have cluster headaches, but I've had a (diagnosed) week-long spinal headache exactly once before. A spinal headache is where your CSF fluid leaks out your back and your brain physically begins to "hang" in your skull. It lasted for a week, I was shot full of so much hydromorphone I couldn't physically coordinate my legs, and I was still in tears from the pain, begging doctors to knock me out. I honestly think I would have died by my own hands had it gone on for another week. It was unbearable.

I would suggest that the odds of someone managing cluster headache without medication – i.e. the headache that's earned the nickname "suicide headache" and causes people to carry around emergency inhalers of hardcore pain killers like butorphanol – is very, very low.

[xab9]

I've read some of your comments about your symptoms and experiences with headaches: I don't envy you.

I had a couple of minor surgeries and some were in full anastesia, some with spinal injection only. Once the nurse said that I may experience headaches and I thought, heck, I know a thing or two about headaches, but noone ever told me how fucking painful it is going to be.

It lasted for two days and the only good thing was that I did not vomit and had no tunnel vision, but the pain reached an astonishing level.

[facetube]

Yeah, this was a case of being rushed out of an ER after a lumbar puncture (negative). You're apparently supposed to be held as an inpatient for at least a few hours while lying still; I was discharged in 15 minutes.

Mine ended up never self-resolving and they had to use a blood injection to produce a clot and "plug" the hole. Before that they tried IV caffeine – apparently that not only exists, but is actually indicated for spinal headaches. Trip report: meh, drinking coffee is much more fun.

[hvidgaard]

The symptoms are consistent with cluster headache, and my doctor has instructed me to get in touch if it reach a point where I'm unable to manage it. For all I care, it's equivalent to sticking a knife in my eye - so very painful. My eye also get severely red and is constantly running when it happens.

> I would suggest that the odds of someone managing cluster headache without medication

Do you find it hard to believe that I, as a person that has managed this particular condition my entire life, is able to tune out the pain as long as I'm completely still and have my eyes closed? I was 30 before it even occurred to me that it was not what other people calls a headache, and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.

[txcwpalpha]

>Do you find it hard to believe that I, as a person that has managed this particular condition my entire life, is able to tune out the pain as long as I'm completely still and have my eyes closed?

Quite frankly, yes. I don't mean to belittle your condition or be a gatekeeper, but cluster headaches and severe migraines can be so bad that you are physically incapable of doing anything but laying still. It's not a choice. It's not just "knife in my eye, I should lay down and try to tune it out", it's "firecrackers are constantly exploding inside my skull and it's affecting my cognitive functions so much that I cannot walk straight, I cannot speak clearly, I cannot see things two feet in front of me, I cannot chew, etc". And it is simply impossible to "tune out the pain".

I don't doubt that you've had some bad headaches and I'm sorry that they have negatively impacted your life, but again, if you've never considered heavy medication for them then no, you do not know the full extent of how bad they can be. You should be thankful for this, not belittling other people's experience with them by implying they can "just take a paracetamol and tune out the pain". The fact that you are able to take paracetamol and that's enough is testament to the fact that you experience less severe migraines/headaches than some others do. A single, severe cluster headache/migraine the likes of which some people get would have sent you to the ER immediately begging for any medication to ensure that such a headache never, ever, ever happened again in your entire life. These are the types of headaches that paracetamol has no chance of even touching. Only incredibly powerful opiods/barbiturates even have a chance of relieving them. And that's just talking about the acute pain. The other terrible part about migraines is their chronicity.

I realize that my entire comment is ridiculous because it's essentially saying "no, my headache is worse than yours!" But saying "well I have headaches too and I'm fine" (like you are doing) is just as stupid.

>and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.

This is essentially what your comment is doing right now, and that's why it's insulting.

[facetube]

A nonzero number of cluster headache sufferers have actually cracked their teeth from involuntarily clenching down in response to the pain.

It's possible OP has a more mild presentation or something, but what was described is pretty damned atypical – and also about a half-micron away from "I can, so why can't you?".

[hvidgaard]

> about a half-micron away from "I can, so why can't you?".

That was not at all the intention! I've developed a way to handle my issue, to the point where I can more or less shut my mind out of my body for hours. Kind of awake sleep. I have no notion of how many hours I'm out, but I'm aware the entire time.

What I've gone through to get to that point, I wouldn't wish for my worst enemy.

[hvidgaard]

> Quite frankly, yes. I don't mean to belittle your condition or be a gatekeeper, but cluster headaches and severe migraines can be so bad that you are physically incapable of doing anything but laying still. It's not a choice. It's not just "knife in my eye, I should lay down and try to tune it out", it's "firecrackers are constantly exploding inside my skull and it's affecting my cognitive functions so much that I cannot walk straight, I cannot speak clearly, I cannot see things two feet in front of me, I cannot chew, etc". And it is simply impossible to "tune out the pain".

You're mixing the two up I think. What you've described is severe migraines. During a "typical" cluster headache episode, you're restless, because movement doesn't make it worse. You are gatekeeping pretty bad. The MD I've seen have given me the diagnosis cluster headaches with symptoms of migraines. Last time I had an episode, I was laying new flooring, noticed it coming and do the only thing I could, take some painkillers and power on. Before long I was cutting boards wrong, trying to lay them the wrong way around, and at some point my wife directly asked me if I was okay because of the atypical behavior. I wasn't and I made my way into the bedroom and didn't emerge again for 3 hours. Any sound, light, or movement during an episode is pretty bad.

> not belittling other people's experience with them by implying they can "just take a paracetamol and tune out the pain".

I've never implied that. I've said that is what I can do. You seem to be incapable of accepting that cluster headaches can range from something manageable, to something that makes people commit suicide. As I've mentioned, one of the leading MD on headaches in Denmark have diagnosed me with cluster headaches.

> A single, severe cluster headache/migraine the likes of which some people get would have sent you to the ER immediately begging for any medication to ensure that such a headache never, ever, ever happened again in your entire life.

Except a 10yo can not just go to the ER for that, and when you grow up being told to get over it, you find other ways to manage it.

> These are the types of headaches that paracetamol has no chance of even touching. Only incredibly powerful opiods/barbiturates even have a chance of relieving them. And that's just talking about the acute pain. The other terrible part about migraines is their chronicity.

Paracetamol is not handling it, they often stop it, or rather, it stops the thing that is causing it to develop. Why it's working, I have no idea - but it's, according to the MD, normal that medication in the initial stages can significantly reduce severity or even stop an episode.

>> and I would feel guilty not doing anything with a headache, because people around me constantly said "I have a headache" but acted like nothing was wrong.

> This is essentially what your comment is doing right now, and that's why it's insulting

Let me get this straight. I'm saying I've been diagnoses with it. I can often successfully stop it, and when I cannot I'm "out of service" for hours. How on Earth is that making people with the same condition feel guilty?

[facetube]

> Paracetamol is not handling it, they often stop it, or rather, it stops the thing that is causing it to develop.

Actually, this is pretty interesting. I'd be really curious if NSAIDs like ibuprofen or naproxen have the same effect. APAP has a novel mechanism of action at the cannabinoid receptor type 1, because it's a prodrug for AM404. That's the only target that I've ever found that kills my migraines (N.B. prescribed synthetic, not so much smoking joints or anything).

[hvidgaard]

NSAIDs doesn't have the same effect that I remember, but truthfully, I haven't tried to use them for that purpose for a long time.

[facetube]

> The symptoms are consistent with cluster headache

Out of curiosity, is that a professional medical opinion, or is that yours?

[hvidgaard]

My GP send me to the "pain center" (I don't know what it's called in English), and the MD that I've seen a does nothing but headaches. His words are that by the clinical definition of a cluster headache, that is my diagnosis. The reason he call it a mix between migraine and cluster headache is because movements makes it worse and I get sensitivity to light and sounds during an episode.