r/ClusterHeadaches

Hello!

I've been going through a recent attack, first one in three years and it's lasted about a month, I'm still getting shadows but no full cluster headache in 5 days. Well I've been to doctors and they've ordered a head MRI but it's not for another month. Will it show anything if the attacks aren't ongoing at the time?

Just wondering other peoples experiences. I've had these for years but never formally diagnosed as tend to just hide from the world until they are gone and then forget about them until they turn up the next time. Finally made an appointment after a month and ironically not had one since.

I've been suffering from cluster headaches for nearly a year now, currently my fourth cycle just started recently, and I don't know if this is an adaptation to the pain or if my brain broke, but I keep thinking more and more to myself that this isn't that bad.

For some context even before this started I considered myself to have decent pain tolerance due to my background, always was able to keep a level head when in pain, but the first time I got hit by a cluster headache cycle, the first few episodes were extremely brutal. I vividly remember thinking of some, to put it mildly, extreme solutions to just escape the pain.

The next few cycles were better, I've learned what helps me and what doesn't, how to react, and most importantly, that it ends.

Now it's starting all over again, it's just as mentally taxing and the pain is still off the charts, but I can if really needed power through it, it no longer consumes every part of my mind during an attack and I actually have some clarity, and this clarity made me think that this can't be that bad. It's ranked as one of the most painful conditions known to man, but that fact blows my mind, especially how it's consistently ranked above giving childbirth (I am a guy so I don't have any experience in giving birth, but that still feels unbelievable).

Its just that I can imagine so many things that would hurt a lot more that I started thinking that cluster headaches aren't the worst thing you can go through in terms of pain, and I don't know if this is built up pain tolerance or just delusion on my part, has anyone had any similar thoughts on the subject? I'm still relatively new to this and I was just wondering if I'm the only one feeling this way, I'm not trying to invalidate anyones pain or suffering, especially since experiencing pain is such a subjective and personal thing.

Full disclosure, I'm not diagnosed but working on it, and I don't expect you guys to diagnose me.

So, 2-3 weeks ago I started getting these excruciating headaches in my right temple/behind my eye, every day at 1 am, lasting 1-2 hours each time, for over a week straight. Then they started occurring at 2 pm as well for a few days, and then just under a week ago they stopped. But every day since I've gotten these mild but annoying pains in the same area 1-3 times a day for minutes-hours. Caffeine seems to help them, but otherwise normal pain meds do nothing.

So I'm curious, you guys who are diagnosed with CH, do you ever get periods of just shadows? And if so, do those shadow periods tend to occur before, after, or in between headache clusters, or with no discernible pattern?

I've had chronic migraines for years but had my first cluster headache two years ago when I was pregnant. I assumed it was triggered by major hormonal shifts. However I've had a few since then that seemed like they were triggered while socializing one-on-one over an extended period. It is not abnormal for me to struggle with anxiety in these situations, but the headaches are so extreme that sometimes I don't feel it's worth it to meet up with a friend.

For context I was diagnosed with PTSD last year, so there are potentially some differences in my life now even in "normal" situations.

Just wondering if anyone else has found anxiety to be a trigger in this way?

I’ve been dealing with what doctors think is occipital neuralgia / cervicogenic headache / migraine overlap for about 6 months.

It started suddenly while driving when I turned my head left and felt a sharp pinch/electric sensation at the back left side of my head near the base of the skull. Since then, turning my head left/down and sudden movements trigger pain. Over time it spread more around the base of my skull and sides/top of my head.

What’s weird:
- cardio actually helps a lot
- shoulder/trap workouts flare it badly
- posture and sleep position matter
- acupuncture and neck brace helped some
- gabapentin + low dose amitriptyline help, but symptoms come back when meds wear off

Neurologist thinks migraine pathways may also be involved. I’m considering an occipital nerve block next.

For people who improved:
- how long did recovery take?
- what helped the most?
- did injections help?
- were you able to taper off meds eventually?

Would appreciate honest experiences/success stories.

I have a single tank that was filled to 2000 L but is down to 500 L after about a month. First time having oxygen. When do you usually ask for refills.

This has been the worst year for my headaches, been having 7-8 attacks a night. Or sometimes have an attack in the day that lasts 3-4 hours. I know some people have tried magic mushrooms and it’s helped, I’m a Muslim and according to Islam anything that intoxicates the mind is seen as forbidden. But was wondering if there are other Muslims on here that suffer from cluster headaches and what your views are on taking something illegal (religiously and according to the law) for a medical condition. I’m just desperate for a treatment, atm it’s making me depressed, work is a struggle and spending quality time with my kids is impossible. I’m thinking about the last attack through the day and constantly feeling on edge. Also from anyone that’s taken magic mushrooms, have you ever had bad trips. I’ve heard of some horror stories and I don’t want to see a clown in my living room 😬

I had my first cluster headaches a couple months ago. Before the headaches started, I had a strange pain in my mouth for about a week (in that meaty vertical part behind my back teeth--idk what it's called). The mouth pain went away, and the next day my cluster headaches started.

I didn't think much of it at the time, but that same pain has started again and now I'm afraid it's signaling another cluster. It could just be a coincidence, but the mouth pain was only on one side last time, and it was the same side as my cluster. The pain during the attacks radiated down into my teeth and jaw, which also makes me think they may be related.

Does anyone get some sort of pre-cluster pain or some other signal that a cluster is about to happen?

Note: My PCP prescribed me verapamil, as well as a triptan nasal spray in case of another attack. I have a neurologist appointment at the end of August (the soonest they could fit me in when I called back in March), so I'm just trying my best to manage until then.

"There is no cure for cluster hea-" nah f*ck this shit. There's no way that's the dead end answer we get. Do you guys have anything that worked for you? Anyone that has gone years without an episode? Any theories at all?

I refuse to give up

After 22 years of annual and biannual cycles I finally have a first line defense. I was able to pick up an oxygen concentrator (10lpm) for a very affordable price on marketplace. This on the same day I had multiple medications denied by insurance. After multiple rounds with the Dr and insurance the insurance company finally allowed me to fill the Emgality rx and gave myself 3 100mg/ml injections a couple days ago. I still have multiple attacks per day but they are 1/4 the pain level as normal and the oxygen shortens the attacks to 10-15 minutes. Not out of the woods yet and but light on the horizon.

Hello everyone, before I take this up with my GP I wanted to ask for some general advice here about my problems, if they qualify as cluster headaches and whether I'm the only one that feels like this.

I started developing these headaches at the end of 2024. Stabbing pain right above my left eyesocket. Makes me irritable, sensitive to light and nauseous. I told my doctor I'm suspecting a migraine because back then I didn't know what a cluster headache is. I was just told to take the usual painkillers, usually dexibuprofen and the way I get rid of it is usually just trying to sleep it off. I didn't find out that the pain pattern is actually more similar to cluster headaches.

But there's one issue: these headaches are way too far apart to qualify as either. They last for a few hours at a time like cluster headaches do, but they show up like once a month, once every few months, and at the maximum once a week. Which is way too infrequent for cluster headaches. Being sensitive to light and nauseous is also more akin to migraine symptoms.

Do I have some weird Hybrid? Do I have something else? Or am I just partly blessed with the fact that my clusters are not as frequent? Should I still ask my GP about injection based painkillers?

Hello!

I'm a chronic CH sufferer, but recently I got a job offer in Switzerland. It seems like a beautiful country and the money is great, but I'm worried to death about treatment options, as I treat my CH with Emgality, Verapamil and Sumatriptan, and the former seems wildly expensive. I know there's a sort of health insurance, but if anyone could clarify the issue for me it would be awesome.

I need to buy a number of new ice packs. at least 6.

Long story short: I had about a dozen Flexikold small rounds, they got tossed in the trash by someone who was “helping” me move. I now only have 2 left! & I’m using my big one

i looked on Amazon, they are very expensive & I could use amore affordable alternative. something that will stand up to getting a bit squeezed, used daily and washes up nice.

FYI I hate the masks. not my thing, lol

Can anyone send me a link to a decent brand.? the beast is making my life difficult and research is hard today.

im in NY, USA

thank you all in advance !

Hi everyone. I’ve been a silent follower of this sub for a while now. I think I have cluster headaches, but my PCP diagnosed me with migraines. I’d love to hear from people who have experienced cluster headaches.

Symptoms/Background:

I am 24 F and I have been experiencing headaches for as long as I can remember; however, they seem to be getting more severe as time goes on. I have been taking Topiramate every night and Sumatriptan as needed for years, but I don’t know if they’re helping.

The pain comes out of nowhere, pretty much every day usually right when I wake up or right before I go to bed. It is on the right side of my head, on my temple, behind my right eye, down the right side of my nose (almost feels like in my sinuses), and at the base of my neck on the right side. Sometimes it’s short lived, sometimes it lasts all day and I can’t get it to go away. Sitting still usually makes it worse, so I have to get up and try to do something to get my mind off the pain.

I won’t get any headaches for months and I’ll feel great, so I think I’m fine and just overreacting. Then one day, they’ll randomly come back, I’ll get them every day, and I find myself terrified of when the next attack might be. I’ve gotten in a car accident once because a headache came on while driving and I couldn’t concentrate. I’ve had to go to urgent care several times because the pain was so bad and I couldn’t get it to go away. Sometimes the pain is so bad I get nauseous and I can’t keep anything down until the headache goes away. I have a lingering headache now while typing this 😅

If anyone has any idea what kind of headaches these are or any advice for me, I’d really appreciate it. Thank you so much!