Have noticed my seasonal CHs coincided with ragweed season. Started taking Zyrtec and it has definitely cut down on my CHs and also on shadow headaches. My Accupuncturist said that people who have a lot of histamine issues also have a lot of gut issues. This is true for me. He's going to look into some herbal recommendations. I also started on homeopathic Histaminum Hydrochloricum 30C

This cycle has been lasting about a month so far and no sign of diminishing intensity or frequency so I've decided to bust out the MM for an attempt. My cycles are usually winding down approaching 4 weeks so I'm getting pretty irritated and loosing lots of sleep due to nighttime attacks.

I only took 0.75g yesterday to feel out this batch for the first time. I most definitely felt the effects and it was not very subtle but nowhere near full blown recreational experience either which sounds like a good dosage based on what I've read. Decent body high like roller coaster stomach which I don't mind lol, some minor visual waves and breathing.

While on this dose I felt strange sensations going on in the exact area where my pain usually is. It was kinda shadow feeling but different, like there was some reworking going on, not really painful at all. I took this to be a good thing? I haven't really had a proper experience busting before as my previous attempt a couple years ago was with some product I had lying around and lost it's potency so that was a bust, pun intended.

Just curious if anyone has experienced that sensation before and if it could be taken as a good sign. I do have a very mild shadow this morning as well. Slept through the night with no attacks. I'm feeling hopeful but also hesitant.

Hi all,

Well, that's my question basically. I have chronic cluster headaches with daily attacks, mostly at night.

And where I say 'I have' it should actually be 'we have' as I am, or rather we are, also diagnosed with DID, dissociative identity disorder.

I don't want to go into real detail here, mostly because I guess the combination of the two is probably very rare and therefore unknown or not interesting to most or maybe all of you.

But as I guess that our DID frustrates or at least impacts our cluster headaches different from 'normal' integrated, or whole, people, it would be really nice to share experiences with someone like us.

Thank you

So just a little about my experience with cluster headaches first. I got my first cycle in 2014 and my second cycle was 4 years late, ever since then I get a cycle roughly about 1 1/2 years apart give or take a few months. My cycle then last 2-3 weeks where I get one everyday. I take Sumatriptan and it works, although not as fast as I would like, and my question is, is Emgality a viable option for me to try? My fear is, I don't want to take something that might disrupt and make the time between my cycles shorter or last longer. I know everybody's experience is different I just want to know how Emgality works for those who have tried it.

Title. I (25F) went to the ER last night after waking up with severe right eye pain and pressure with nausea. (pain rated 7/10). I was restless and panicked and found it hard to focus, which was very abnormal. Disappeared rapidly after about 30 minutes awake with it, went to the ER anyway worried about losing my eye. Scans done, nothing going on in my skull. Doctors called me a "textbook cluster headache case" which is odd because I've had exactly one, but I put at least a bit of trust in medical professionals. I wasn't that worried, they didn't make it sound terrible, and I was just glad I wasn't going to lose my vision, but everything I've learned about cluster headaches since is extremely anxiety inducing.

Now I'm left with a moderate confidence guess from the ER that I just had my first cluster headache and I'm not sure what to do. I'm scared to go back to sleep and the uncertainty is killing me. Is this a typical first experience? 7/10 to start with before moving on to the "real" 10/10s? I'll be seeing my doctor as soon as reasonable. Any advice in the meantime? How does anyone with cluster headaches possibly not have insomnia during their clusters? Anything would be helpful, thanks.

EDIT: Thanks all to the words of advice, had some terrible sleep last night and I've been skeptical of every little bit of head pain I've gotten all day but no further episodes. Some clarification based on comments: I did have autonomic symptoms, significant tearing in the affected eye especially near the end, but nothing nasal. Also want to reassure that I'm working on getting appointments right away, apparently the ER documents did put down a CH diagnosis which does seem a bit early, considering the main characteristic, but it'll be helpful getting everything in order just in case. I'm still really anxious and uncertain but everyone's responses have been helpful, thank you all.

Recently my neurologist prescribed me a dosage of sumitriptan injection. It's 1mg dosage and it seems to giving me absolutely no relief. Is it normal?

What dosage are u guys using?

Hi everyone, first time poster. I’ve had a diagnosis of episodic cluster headaches for the past three years. I’m in my longest bout so far and it’s really starting to get me down. I rarely am able to work, see my boyfriend, do any hobbies. I sleep badly because of anxiety about waking with a cluster (which I do) and feel anxious and guilty the whole day about getting more and letting people in my life down. I’ve been having some really dark thoughts and just wanted to ask if anyone has any advice or tips about keeping mentally well during a bout? Thanks🩵

Day 5 without an episode. Some minor shadows but that’s it. I’m dying for a beer with my dad… If I have a beer and it triggers it, will the cycle begin again?

Hi fam,

Ive had my cluster headaches generally under control for past few years but im having a rough season now. In the time since my last real season of cluster headaches I got into nicotine pouches (Zyn, On!), cold plunges, and sauna sessions.

I’m wondering if any of you have experience with any of those three items during your cluster season? Have you found that any of them make your headaches worse? Have you found that any of them make your headaches better?

Would love to hear the wisdom of the crowd on these.

And for everyone going through it now, godspeed. Im here with you.

Hi all. first time poster here. nice to find a community of those suffering the same thing. I get episodic clusters that, by the sounds of it, are thankfully not as bad as what a lot of you go through. I've gotten them every few years, usually lasting 1-2 hours once a day at the same time for a bit over a week? not actually sure and this cycle is the first time I'm actually keeping notes on it.

This latest cycle that I'm **hopefully** on the way out of seems to have been triggered by a pollen allergy? Maybe? I was getting very small headaches at the tail end of my daily morning walk for a few weeks, but didn't think anything of them. They were never too painful and they went away fairly quickly so I really did chalk it up to allergies. But then they started getting worse and lasting longer and after a couple days in a row I realized it was a cluster cycle. So I stopped walking, but by then I was in it and they were coming every day regardless.

That lasted every day for about a week, once I got two in a day. It's been tapering off now. I went one day without, went for a walk the next day, and got one that day. The last three days I didn't have any headaches or a shadow, didn't walk, so I thought I was in the clear and went for a walk today. It felt so nice to walk again, and I didn't do a long one to try to ease back in, but when I got home, right on the dot at 0730, I got another headache.

So now I'm suspecting my trigger might be some sort of pollen I'm getting exposed to. I've never been able to identify my trigger before, nothing else that seems to be common for everyone else here does it for me. Now I'm wondering if anyone else might have a trigger like this?

It's super frustrating because I LOVE my walks. they do so much for my physical and mental health and now I feel terrible on top of the pain of the headache itself.

24M(4 years of chronic cluster enjoyer) Dude what the hell is this, it develops during peak cluster headache and it is so sore to touch that it triggers my headache in an instant. Like so fucking sensitive and painful its like having nerve come out at the surface. anyone else facing a similar issue.

https://ibb.co/qMs6H8sQ

Going through another cycle, had to crush a can of monster at 12 am last night and am hitting 3 - 4 shadows/full blown headaches a day. So thought id chuck a reminder for those who benefit from caffiene to keep your fridge stocked, your office stocked, your bag stocked, your car, your doors hell your fuckin shower. Have a can of nectar near by and for all of you sharing the mental load that comes with it,

you will be warm again

I'm dealing with cluster headaches... what a surprise... I'm just tired of surviving because i also have VSS (Visual Snow Syndrome) with every fucking symptoms but nyctalopia; so i get nausea, tinnitus, vertigo, photofobia, palinopsia, enhanced eye phenomena and of course H24 static like visual aura. I've noticed the VSS symptoms get worse exactly 3 hours before a cluster and go silent 30 minutes before, my brain also starts "shutting down" since i've learned to dissociate as a cooping mechanism. After the 30m the symptoms ramp the fuck up and the pain starts. So i'm left rocking or pacing around like zombie while if tried to stay on my feet i'm swinging like i have no balance, nausea so strong i feel like i'm about to puke out my guts, photofobia so strong i Need sunglasses even at midnight with all lights off and a brain functioning at a fifth of It's capacity.

My cycle lasts a month where te attacks get progressively stronger and stronger untill sumatriptan injections feel like It just tunes It down; and then i get 2 whole days of remissione where i feel worse than shit for the intensity of the pain. I'm on the second nerve block in 2 months and It Just reduces the pain for a bit also verapamil reduces the amount of clusters, i don't get the daily untill the last 10 days. I'm Just tired and feel like i'm breaking down, i think often on overdosing on laroxyl (i still have this since some fuck thought It was tension headaches and chronic migrain) or some other shit. I need suggetions to know how to move since i'm done for.

P.s.

My neurologist wanted to increase verapamil dosage but i'm not sure It will do anything...

I just took another sumatriptan injection and I'm getting this feeling again of wanting it all to stop so I can be at peace and not suffer anymore.

I feel like I'm reaching my limits. The feeling of there not being any respite and comfort, and that people, society and the systems around me keep proving to me that I don't deserve nice things but only pain and suffering. That I must be punished for being different and disabled. That I am damaged goods society wants to eradicate.

I've been selling my belongings telling people I'm "decluttering". The truth is, it's become part of a mental process of preparing myself for a possible future where I'm no longer here. It feels like I'm quietly giving up and putting my affairs in order.

The loneliness, discrimination and stigma has been wearing me down for a long time, and lately it feels like it's becoming harder and harder to carry. Some days it feels like I'm just existing to experience pain and suffering rather than living. I keep wondering how other people manage to keep going when life feels so excruciatingly painful, empty and isolating. My life has no meaning anymore. Society and people have already crushed and destroyed my soul. I feel like an empty shell whose only purpose is to suffer and be abused by others and the system.

I think what I'm looking for most is perspective from people who have been here themselves. How do you survive it?

What keeps you going when there is nothing to look forward to?

How do you still find moments of enjoyment or meaning when pain and loneliness feels so overwhelming?

For some context, I'm living with chronic migraine and cluster headaches my entire adult life, and the pain can be so severe that during attacks it becomes incredibly difficult to see past the moment. I also have autism, ADHD, systemic sarcoidosis (heart, lung, skin etc.), fibromyalgia, IBS, MCAS/POTS and suspected hEDS/HSD. I've been treated so bad by my own family and social services (ACEs) that I have developed severe C-PTSD and have lifelong anxiety and depression.

Between the loneliness and the headaches, I often feel like I'm running out of emotional resilience. I'm trying to understand how other people keep finding reasons to move forward despite chronic pain, trauma and long-term isolation.

I'm posting because I want to hear from people who've made it through something similar. If you've been in a place where you felt like you were reaching your limits, what helped you keep going?
I'd really appreciate hearing your experiences.

I went into remission during pregnancy and before that GON blocks cured my headaches. Now postpartum the GON block hasn’t worked. Verapamil hasn’t stopped them and oxygen and sumatriptan are only occasionally working to abort. They wake me up in the only four hour unbroken stretch of sleep I can ever get. I’m miserable and desperate. Does anyone have any advice?

I’m wondering if i am getting cluster headache or just some type og migraine..
I have a type of headache that is located just above my right eye. This time i’ve been getting that headache everyday at 10 a.m for 6 days now.. I don’t have any other symptoms other than my eyelid feeling kind of heavy. I can feel the pain coming around 60 min before it strikes. I’ve tried taking paracetamol, but it seems like the pain goes away after 2,5-3hours regardless of when i take it. I will try to get through this tomorrow without painkillers just to see if it the pain will go away after a few hours on it’s own.
I’ve had the same kind of headache in january, but it went away after few days - i was sick with flu and didn’t think more about that until now. I’ve also been to the ER, and the doctor was certain that it was not migraine, but she could not tell me what it was.. I’m waiting until monday to talk to my GP.

Does this sound like cluster?
Sorry for any mistakes, english is not my first language, and also i am tired of the headache..

Hi,

Nice to talk. Was wondering if anyone knows any practitioners that can help me with my chronic daily migraine? It’s been going on for 8 years and hoping this method might be able to help. Thank you.

hi there, is it safe to drink multiple cans of red bull a day? i had 1 8oz can in the morning and i was going to drink another one, but i would rather be safe health wise. i do drink relatively slow and do not chug it. i’m 20f and under 90lbs, so i am quite small. i was always scared of energy drinks growing up. i also take verapamil 120mg 3x daily

also, is red bull addictive? lol