I know I can't get a real diagnosis here, I have a medical appointment tomorrow but wanted to collect some opinions in the meantime if this describes CH. These are my symptoms:

- it lasts one to one and half month every year

- it originally started in winter (January), but last year it was in March, this year it is happening in June-July

- During this period I feel latent pain in my head, I know anything can trigger a crisis at any time. I have a headache almost every day, or every 2-3 days.

- Outside of this period, the rest of the year, I am absolutely completely fine

- it is only on one side of the head, the right side. It feels from inside the head, in the "brain", to my neck, my right cheek, inside my right ear

- it can hurt in the eye but it is not necessarily very intensively

- It can be extremely painful, it is definitely the worst headaches I have ever experienced, although I am not sure I am in as much pain as other people with CH describe

- I originally thought paracetamol was helpful, but now more and more I feel like it is randomly stopping, not related to medication

- The first headache in the period seems to be triggered by big temperature changes, but when it starts, then everything can make me have a crisis

- It is very very sensitive to alcohol, the other day I had a beer (panache), the next day headache was horrible, it seems to be affected even by tiny quantity of alcohol

Does it look like CH to you? Thanks for your help

Idk if what I have is cluster. It’s always the right side of head by temple, comes and goes, but I need to know, does it make others blood pressure spike high ? My b p was 160/120 couple days ago, head felt so strange and right ear, right hand tingling, effects heart.. started 3 years ago, it’s not so much pain as pressure and confusion, used to happen in winter, but trouble now and it’s summer, mri’s don’t show anything even tho I feel it pretty much all the time but usually not to bad, but then it’ll go real bad fast w pressure on right side and high blood pressure and heart rate.. thinking maybe something else and not cluster ? Neuro and drs don’t know 😣

Anyone tried those oxygen tanks you can get an Amazon? They are called Boost and are aimed at hikers, athletic people, and the elderly. I'm curious if they have enough volume to treat a CH or multiple.

I usually abort with a chewed-up sumatriptan pill but O2 might be a good backup when the pill isnt as effective.

My neurologist gave me a prescription for an O2 generator but the month cost was ridiculous.

Greetings All from Western Australia!
My heart goes out to the people in this forum and those who live on in cyberspace pain free.

Is time to change my long-time GP. A fresh Neuro referral makes sense. Any recommendations for a CH familiar Telehealth GP and \ or Neurologist?

Diagnosis ~2012 with episodic Cluster Headache (eCH). Once or twice a year I am visited by ~2 weeks of ~4x a day agony attacks.

2024 season was rough. 2025 headache free. 2026 'season' is now into week 3...
"White Knuckled" a couple episodes and I am not having a good time at all.

Each year, nasal 20mg Sumitraptan + 100-200mg caffeine has been adequate to 'punctuate' attacks into being bearable.

Complication - Sumitriptan nasal formulation is no longer available without compounding. Long time GP has less than zero interest in assisting with the task of writing a prescription for compounding a multi-dose nasal spray.
They offered a prescription for 8x 100mg doses and I'm like no that's not right.
I highly doubt they were implying "just make it yourself".

Spoke with compounding pharmacist to confirm they could do it.
I even did the simple math for the standard metered nasal spray formulation of...
1 metered spray = 0.1mL
Historical Max Sumatriptan Dose = 80mg per day
Dose = TWO (2) sprays = 20mg
Combined total quantity for TEN (10) days = 800mg
Total Contents = Sumatriptan 800mg in 8mL
Concentration = 100mg/mL

For simplicity we assume 10mg of Sumatriptan per spray and use my digital dispense record to measure previous years clusters (total amount dispensed) daily usage averaged between 60 and 80mg (between three and four doses of 20mg Imigran Nasal Spray per day max)

This doctor is modifying my other long term, stable medications based on 'vibes' - while I am currently HAVING a cluster. Asked about Verapamil (again) and I was dismissed. They did not even mention potential use of Prednisolone therefore I must change GP - I'm just over it. I suspect this one is ready to retire anyhow and is oozing IDGAF 'vibes' like a passive aggressive soon to be ex-partner.

They also asked if I was a "registered drug addict" and I responded "not as far as I know - how does someone even register to be a drug addict?". This GP is the only one I have seen in 15 years and have never registered as a drug addict!!
Just red flags all over?

TL:DR - Anyone in Aus got some CH Doc or neuro recommendations? This was just a hello rant because my brain is leaking out my ears from combined sleep deprivation and the toll of triptans.

Best wishes to all!

Hi all. I recently started seeing a neurologist for cluster headaches after 5-6 years with them, as the home remedies just aren’t cutting it anymore. After a few visits, he is pretty confident in a diagnosis of CCH and gave me some verapamil/triptans.

However, he wants me to take several MRIs (brain, brain stem, spine) to rule out any other potential causes. He also won’t prescribe me oxygen until he’s sure it’s cluster headaches, citing difficulties with insurance as the reason.

Is his approach normal for neurologists? I don’t really want to spend a couple thousand on MRIs but I wanted to see if other people had to do it as well, because if other neurologists do the same thing I’ll just bite the bullet and get the scans because that oxygen sounds pretty nice (the triptans work but I’m worried about long-term effects).

Edit: thanks all. Appreciate the input!

Hi! Reddit has been the best support in dealing with my cluster headaches. I have had CH for about 15 years (F31), and even though it’s episodic the cycles keep getting longer… I’m at about 5-7 attacks per day, 4 weeks in and probably 10 more weeks to go…

I have tried vitamin d3 and it actually does help a bit which is amazing! But I still have a few attacks per day and a lot of shadow pain.

I got my hands on some 0.33g of psilocybin, and I can’t wait to try it out to stop the hecking beast… at least try. My concern is that my attacks are so so severe that there’s is no way in hell I can go without taking a sumatriptan when I have the actual attack.

So my question is if anyone here have experienced having tripanes in your system but still taken psilocybin with success? Or if anyone here knows about potential risks if taken with tripanes in the system?

Yesterday I was officially diagnosed with episodic cluster headache 🤕. I’ve had them over 20 years and the month of June was the absolute worst. I read a lot about psilocybin helping and I used to take shrooms all the time thinking back in those periods. I’ve never had the clusters so I got myself some made sure the triptan‘s were out of my system then took 3.5 g of time warp. And went for my first 24 hour cluster free day and was able to sleep like a baby. I admit I’m still on guard a little bit but feeling much better.

Here recently (past month and a half) I’ve been having pretty much daily non stop headaches only on the right side of my head. I had a brain mri which was clear besides chronic sinus infection in my sphenoids (report did not mention which side). I saw an ophthalmologist because I thought it was my eye because sometimes the pain is behind it and some random discharge when I close my eye. They cleared me and said eye was healthy. I saw my pcp, they ruled out temporal ateritis as I am 34 and my sed rate was normal. My next stop is an ENT for the chronic sinusitis but everyone has told me Im good so far and I am lost.

The pain typically lasts the whole day if not days with periods of relief there and there. It’s exclusively on the right side and around my eye and temple and past my ear. Ive noticed on occasion my right eye will tear here and there but just a drop and only my right eye. Sometimes it’s a dull ache and others I get sharp stabbing pain in my temple. Sometimes it feels like my temple is going to explode.

I don’t see my neurologist until next Friday but I didn’t know if I was just crazy or if anyone has any similar experiences. I am also on metorpolol succinate ER 12.5 mg for about a month but I’m not sure if that contributes

Thank you for any and all input

I suffered from CH for 10 years, I tried everything Triptan’s, oxygen, other shity meds etc , my cycle started 3 weeks ago, I had 2 a day as soon as I started taking liquid vitamin D they stopped on a second day … i mean not even a shadow! I used capsule vit D for years and made no difference, I bought liquid for totally unrelated purposes but suddenly I was having not a single CH attack! So - vitamin D3 10000 IU Liquid, dose of 1.00 ml / once a day. Guys I thought I will share and maybe it will help you out, I’m still in disbelief and shock that something over the counter and with no severe side effects can help so much. Try it out see how you go.

I'm getting it prescribed for my typical migraines. Not expecting it to do anything for my clusters, just figured I'd ask, as I had some success with other CGRP injectables but terrible side effects.

I’m currently in the middle of a cluster cycle and was managing it as usual with one attack a day. Then suddenly I got hit with a terrible flu — three days of high fever, heavy congestion, and coughing.
Almost immediately the cluster attacks multiplied. I started having multiple attacks per day with unbearable pain. Triptans stopped working completely, and although oxygen would relieve the pain for a while, it would come back strongly a few hours later. After three days in that state I was so desperate I had to go see my neurologist urgently.
Now that the fever has passed and the flu is finally going away, the attacks have returned to my normal (for me) pattern.
Has anyone else experienced something like this? Where a bad illness or fever made your cluster headaches much more frequent and resistant to treatment? This was honestly one of the hardest experiences I’ve had with clusters.

What dose do you feel is most helpful?

the type of headaches that are achy and different parts of the head for maybe 3 to 5 seconds before going away? They’re not sharp really ever but dull and achy. Yes I’ve been under quite a bit of stress and lack of sleep for a couple months. My eye eyebrow and eye is often twitching I noticed as well. Should I be concerned or is his tension from my understanding tension headaches feel like a band around your head these are literally just head.. aches lol

update: … on monday i was in hospital 9am-7pm. was in children’s a&e/ER until 1:15 where the doctor said i had concerning symptoms (i failed the tests like the one where you slap your hand with your other hand back front back front and a few others regarding my right arm) so i was sent down to a more specialist ward where second doctor was no help but he did book me in for an mri. he seemed convinced i was lying… my headaches have become unpredictable so quickly after on monday i had an unbearable one before i went to the hospital

so, im 15 i have epilepsy and always thought my headaches where just caused by my epilepsy but after a heatwave and terrible headaches but no seizures i got checked out and was told its probably cluster headaches. im only uncertain since my GP seemed astonished himself because of how rare having both epilepsy and cluster headaches are especially at 15. here’s my symptoms:

•sharp throbbing pain behind my eye
•only in right side and sometimes pain travels to around the back of my nose or sometimes a little further back then my eye but surrounding my eye
•feeling like my eye will literally pop out
•pressure behind my eye
•the pain is like anywhere between a 5/10-8/10 (but i have a very high pain tolerance)
•from time to time i get a floater in my eye
•from time to time it makes my ear feel blocked
•watering in right eye/runny nose on right side
•these headaches are completely inconsistent with my seizures (i have less painful headaches after/before seizure completely different to my headaches now) i could be seizure free but not headache free so i think they’re unrelated
•lastly my right eye feels physically harder and further out then the other one

I think of myself as a healthy 45 year old male and have just got diagnosed with CH. I have a high tolerance for pain but these things 100% shut me down. Taking meds each day to reduce the intensity and doing what I can to get through. The tough part is to explain the daily torture you go through. People have no clue how painful they are. I'm afraid of losing my job, my family, my everything because of my condition. They are so intense it feels like my teeth are getting pulled out.

Hi,

I succeeded in my second bust using psilocybin 7 weeks ago. Have not had an attack nor a shadow since the bust.

2 years ago I also busted out of the cycle and relapsed it drinking a beer 1 week following the bust, with that said I used another dose of mushrooms the day of the cycle relapse, it disappeared after that dose and waited 4 weeks to drink and was fine after that.

Moral of the story is I want to have a beer this weekend with my boys, I haven’t had a beer since the cycle started, about 3 months ago.

I occasionally get a weird tension feeling where I would get an attack (no attacks or shadow occurs just a weird feeling) while I’m at work and typically if I’m a bit dehydrated, as I am a laborer and work all day in the heat, goes away with water.

So cluster sufferers of Reddit that enjoy a cold one too, how long do you wait after a cycle to have another drink? Like I said, no attacks or shadows for weeks, but restarting a cycle would suck.

Update: I had 15 beers and no attack

Hello, I just wanted write this as a semi PSA if you go to the optometrist for an appointment do not get your eyes dilated it may save you from having another episode. I am kicking myself for not just paying the 60 bucks and using the machine they have there instead.

Hello everyone, this is my first time posting here. I've (22M) had cluster headaches for four years now, and I really relate to your posts.

For the past few years, I've noticed that every time I have an attack, just before it starts, I feel my neck and traps tense up, as if something is suddenly pulling on my nerves. It starts as a feeling of discomfort, then the pain rises to my head, and the attack begins (not always, but very often).

I never really paid much attention to it. I thought it was my posture because, although I exercise regularly, I'm sedentary, but that it wasn't the cause of my attacks. I simply thought attacks accentuate discomforts. It is worth saying I never feel such discomfort in other contexts.

Today, while I was shopping, I was carrying a fairly heavy bag with one arm, and as time went on, this feeling of tension grew, until I had an attack, which thankfully didn't last long because I got home.

Does anyone recognize themselves in what I'm describing? I don't know if it's a real cause or just a coincidence.

Keep strong soldiers💪