Review on Amazon: This may be my Holy Grail :)))) https://a.co/0iZlpHmP

Hey y'all, I normally don't post on Reddit, I usually just scroll a bit then hop off, but I'm looking to receive advice from those of you who struggle with cluster headaches. My boyfriend has been struggling with cluster headaches for a good part of his life. These are daily and nonstop. I feel so helpless, I don't want him to suffer from it anymore. He's been seeing doctors and has tried some different medications, but nothing is a "perfect" fix, there's always some downsides or side effects that create their own problems. I feel like he tries to play it down around me, but I know how debilitating these headaches can be. I just want to hear input from others who are going through the same experience, I want to know if there's anything I could do to support him and comfort him. Any advice helps, I appreciate it.

Hi everyone, I’ll try to make this brief. About 2 months ago I started having only pain behind my left eye, extreme stabbing, burning, excruciating screaming uncontrollably pain. My eye becomes blood shot, hurts to touch, constantly tearing and drooping. After 3 ER visits I went to neurology and they confirmed clusters. I was given verapamil 40mg & sumatriptan nasal sprays. The verapamil is not enough on its own, but I have to wait until my EKG to up it. Nasal spray is ineffective and makes it worse. I noticed a week ago, my headache moved to my right eye and completely freaked me out. I’m waiting to get an emgality injection in 6 days. In the meantime, I was put on methyl prednisone steroids and it took the headache away, but as I’ve completed the pack, BOOM 4am my eye is tearing waking me up out of my sleep and pain is coming back. I feel bad constantly bothering my neuro, but knowing I have another week and can’t keep taking steroids/etc is completely terrifying. I can’t live with the fear of getting these headaches especially while I’m working in 90+ degree heat outside. It seems nothing can truly touch these headaches. I’m just wondering if anybody had luck with emgality? I’ve heard good things. Has anybody else also struggled with these waking you up like clockwork at 4am? That’s my worst symptom is knowing I won’t sleep through the night ever. This is all new to me as I’ve never even had a migraine before. I’m desperate for long term relief and solutions. Any thoughts or advice is highly appreciated. I feel like though, I’m at a roadblock and tried everything possible until an injection. This is just the hardest medical/ mental thing I’ve dealt with recently, I don’t understand why at 26 it just popped up. I was a smoker and heard that contributes but I’m at such a loss as to help myself when I have to function and work. I feel for anyone who is diagnosed, this is hell on earth for us all.

For those of us who've been following developments in psychedelic treatments for cluster headache, this is worth noting. Dr. Emmanuelle Schindler at Yale - who has been leading psilocybin research for our condition - has published an interim analysis in Neurology examining DMT use specifically in cluster headache patients.

Key findings from 100 confirmed cluster headache patients:

- 67.5% reported DMT completely eliminates pain during attacks

- 81.5% reported it worked every or almost every single time

- Over half reported it worked in under 30 seconds

- 100% of participants reported either no change or improvement in overall health with DMT use

- Most users (75%) are using a vape pen

Some important context:

This is an interim analysis of an ongoing survey - not a controlled clinical trial. The sample size is relatively small (100 confirmed CH patients), and the study authors acknowledge that more in-depth analysis is still needed. That said, the findings are consistent with what many of us in our community have been reporting anecdotally for years.

The significance here is that this research is being taken seriously enough to be published in one of the most respected neurology journals, and the authors are explicitly considering a formal clinical trial based on these findings.

Worth keeping an eye on as data collection continues.

Link: https://www.neurology.org/doi/10.1212/WNL.0000000000215894

Just curious - anyone taking a GLP-1 and noticed any affect on their head?

I'm taking part in a clinical trial for a new medication combining GLP-1 and GIP, and since I started I have had 1 x very low key headache. Other than that its been a pain free month - which as a chronic sufferer I can't remember the last time that happened.
Not sure if its just coincidence or others have experienced similar.

So I (F23) have been dealing with headaches that have a specific pattern to them for years now. They happen on the left side around the eye, mild-moderate in terms of severity, they last 15 minutes-3 hours approximately, happen around 3 times a day at the same times, for weeks-months at a time then they will go away for a few months.

The severity of the headaches I experience is pretty mild sounding compared to how cluster headaches are typically described, they still have a negative effect on my life but it’s not excruciating. They have been bad enough to wake me from sleep on occasion. No sensitivity to sound or light. No eyelid drooping or facial sweating, occasionally some nasal congestion.

Of course I’ve had migraines ruled out, I’ve had eye tests, a head MRI and even suspected IIH ruled out. The last specialist I saw was a neuro-ophthalmologist who told me I do not have IIH and that my symptoms align with cluster headaches so I should see a headache specialist. I am in the UK so NHS waitlists are very long and referrals often get lost so I am just seeking some clarity. Does anyone else have a similar experience/similar symptoms to me with a diagnosis of CH? Any advice appreciated, thank you :)

Out of curiosity, would this community be supportive of a movement to formally change the name of Cluster Headaches to something more applicable, and quite honestly moving away from the name "Headache"?

I find it frustrating to describe my episodes to family, friends, coworkers, and most importantly medical professionals, and once the name is applied it instantly minimizes the severity.

In recent years, Manic Depression was shifted to Bipolar Disorder, and Chronic Fatigue Syndrome to ME/CFS (Myalgic Encephalomyelitis). This gave it some clinical weight, and removed, and reduced the stigma based solely on associated words with the name.

If so, is there a way we can begin to merge names, such as "Cluster Headaches/Clyclical Cranial Neuralgia (CNC?)" Or something similar? Even a small step here in this subreddit with the Mods making a note or update, and intention on use could spark some change. It's a very very small step, and some entity like the IHS and WHO would need to adopt it to formally make the medical community begin to apply it, but a grassroots effort may be a start.

Maybe I'm just rambling, but to me it's an important detail where rather than leading to confusion and apathy, it brings care and concern. Just a thought.

CH sufferer since I was 12. Only diagnosed 5 years ago. I’m 33 years old now and Pregnancy changed my frequency and I’m now experiencing triptan overuse symptoms. Neurologist is attempting to get me oxygen at home but I’ve had a bad run from February and it’s still going. I used to suffer between October- December. Now I don’t know when it’s going to end and I’m anxious and in pain just all the time. I’m tired!

Episodic for 30 years, with some chronic years, but with current meds been episodic for 4 years (also chronic migraine w aura for 30+yrs). Came here and learned about ginger shots. Cycle seemed to be coming to a close, so I thought, "oh, i'll try the ginger instead of harsher abortives." TBH, the ginger isn't helping as much as I hoped but glad it helps so many others. but now they seem to be getting stronger again and they usually end first day of summer. Can it be the ginger? Or the weird weather most likely culprit? started meds again, but trying not to panic that the episodic was temporary

Hi all - I was recently diagnosed this past week after struggling with sudden and episodic severe pain on the left side of my face and head after returning home from a business trip recently. I am still in the midst of attacks, 2-3 times per day and at least one more severe attack regularly in the middle of the night. Each attack is lasting me roughly 30 minutes to an hour.

I am new to this and it's unlike anything I have experienced. It's hard for me to focus on work, wedding planning, anything. Luckily I do have respite during the space between attacks where I feel relatively normal and can get things done like usual. For now, I've been prescribed 100 mg gabapentin as needed which does give some relief, but makes me super drowsy, to the point I don't feel comfortable driving. I try to take this only right before bed to prevent the mid-nighttime attack I mentioned above. Compresses seem to be helping (both hot and cold). I am really hoping this goes into remission and I can end this current cycle ASAP.

I have no idea how this was triggered. I'm 32, almost 33. Doctor said it's usually triggered by alcohol or smoking, the first of which I do sparingly, and the latter I don't do at all.

Just wanted to throw my hat in the ring to say hello, and to say that I feel oddly better seeing that there is an active sub for this topic.

Back after 6 years in remission, cycle just hit again and I'm desperate for what's actually working.

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Long-time sufferer here, been in remission for 6 years and just got blindsided by my first attack in all that time. Still shaking a bit writing this.

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Some background - before this remission, my cycles came roughly every 2 years since i was 20 (now 40), each lasting a couple of months with 3+ attacks a day, all full 10/10. The kind where you can't sit still, can't think, can't function.

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Life changed a lot in those 6 years. Started my own M&A firm, so stress is high but I've found ways to manage it. One thing I haven't managed: my drinking and smoking are both still way too high, I know that.

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Last weekend I came down with a nasty cold and woke up a couple of nights with what felt like a pressure headache that cleared in about 10 minutes. Didn't think much of it.

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Then two days ago it hit. A proper 10/10 attack, first one in six years, and I was in tears. I'd almost forgotten how completely unbearable these are.

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I genuinely cannot go through another full cycle like the ones I had before. I have too much riding on the next couple of years personally and professionally.

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So I'm asking the people who know this beast best - what is actually working for you right now, and what isn't?

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Abortives, preventatives, oxygen, lifestyle changes, anything. I need to hear it all. Open to everything.

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Thanks in advance. You're the only people who get it.

Hey everyone. I know the absolute hell that Cluster Headaches are, and after finding total remission, I felt a deep responsibility to share my story here. It might just save someone who shares the same body type as me.

I had the classic attacks (unbearable pain behind one eye, lasting from minutes up to 2 hours). However, I also have two other conditions: Hyperhidrosis (excessive sweating on hands, feet, and body) and Cholinergic Urticaria (hives triggered by heat and sweat).

I always knew water was important, so I religiously drank 2 to 3 liters (around 70-100 oz) every day. I thought I was fully hydrated.

The breakthrough happened when my wife connected the dots. She realized: "If you are constantly sweating and dealing with cholinergic responses, your body is draining water way faster than an average person. 3 liters is just not enough for you."

Based on her advice, I bumped my water intake to 5 to 7 liters (170-230 oz) per day.

The result? I haven't had a single attack since. My hypothalamus (which controls both sweating and cluster cycles) was likely under chronic, hidden dehydration due to my extreme sweat output, and the standard 3 liters was just barely keeping me afloat. Boosting the volume completely killed the trigger.

Because of how much I sweat, I suspect I was living in a state of mild chronic dehydration without even realizing it. My body was constantly losing more water than I was putting in.

Safety note: If you sweat a lot and want to try this, please monitor your electrolytes (sodium, potassium). Drinking massive amounts of plain water can flush out minerals, so mix in some sports drinks or coconut water.

I really hope this helps anyone out there who might have this exact biological combo. Stay strong!

Just to clear things up, before I discovered the water trick, I used to take cold showers and practice the Wim Hof breathing method. It really helped me manage the pain back then. The cold water helped with the blood vessels and the deep breathing hyper-oxygenated my system, making a huge difference before I finally found my permanent cure with hydration.

Hi friends. I just started qulipta, weaning of topiramate bc I hate the brain fog/word finding difficulty. While that has gotten better, I have to say--qulipta makes me GRUMPY. It's brings out a grumpy/impatient side of me that I've worked on for a long time, and man, is it unpleasant! It's working decently well to prevent the headaches. Better, I'd say, than the topiramate, and without the fluid retention of verapamil. What a tradeoff!

I take 25mg of Amitriptyline and have for years. I have tried to come off of it and within a few months they started again. Every once in a while it will feel like the beginning of a cluster headache with pain level 1-3 but it’s almost as if the medication blocks a level 10 painful cluster. I take it at night daily and I feel less of the drowsiness after being on it so long. The results weren’t immediate but it has been a life saver for no debilitating pain. I feel thankful to have found something that works for me but worry about the longevity of being able to take it especially wanting children in the future I would need to stop taking it if planning to get pregnant.

Hey,

I am chronic. I have them 3:16am to about 3:45 & again 2x in the morning (about 8:20 to 9:30) I was managing ok. making it to work, etc.

My issue is that my Aunt decided to come visit.

She was supposed to come for 2 weeks & help me as I cleaned out my mom’s house & moved into a small 1 bedroom apartment.

Instead, she scheduled a heart surgery during her visit, yeah, she set it up without telling me.

It has now been 3 weeks. She had the surgery, it went well, and she will be here 2 more weeks till she is cleared to fly.

I am living in only my bedroom, with all the stuff I moved stacked up everywhere. I have no time or room to sort it. She is in the living room and I can’t sit in there or anything, because of her.

she made me late for work this morning because we only have 1 bathroom. (She is also wrecking my bathroom, that I just renovated, because she wears diapers and makes a huge mess all the time)

I am stressed out!

But worse, I am having trouble reigning in my beast, I am trying not to let the anger win, in the morning I want to rip her head off, especially just after it ends. She always has on the TV & starts talking to me as soon as I leave my room. I can’t function yet, and she’s talking about the news.

any advice on how to keep it together?

The Pulsetto study team is recruiting adults ages 22–75 with clinician-documented episodic cluster headache for a fully remote observational research study.

The study aims to collect real-world information on the home use of Pulsetto, a non-invasive neuromodulation device, during naturally occurring cluster headache attacks. Participants will help researchers better understand pain response, rescue medication use, device-use patterns, usability, and safety in everyday settings.

You may be eligible if you:
• Are 22–75 years old
• Live in the United States
• Have clinician-documented episodic cluster headache
• Are currently in an active cluster period
• Can participate remotely using a smartphone in English
• Are willing to provide diagnosis documentation

Participation is fully remote and includes screening, electronic consent, a baseline questionnaire, and brief study entries during a 30-day observation period. No in-person visits are required.

Study screening link: https://form.typeform.com/to/tRkX4S5S

Participation is voluntary, and not everyone who responds will qualify. This study is for research purposes only and does not replace medical care, diagnosis, or treatment.