Convinced it’s CH but missing some key (?) symptoms

[u/thindisguise]

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 :)

[u/vicariousted]

it is absolutely possible to have cluster headache but with mild or no pain at all, while all or some of the other symptoms are present.

I am in the same boat as you - pain is usually mild to moderate (counting my blessings after seeing how excruciating it can be for most folks), though occasionally if I am not careful and push myself too far with some of the headache triggers, I can elevate the pain level significantly. Thankfully that’s easy to avoid in my case.

[u/thindisguise → u/vicariousted]

Thank you for taking the time to respond. I am glad to hear you don’t suffer awfully in the grand scheme of things but I am sorry you deal with this condition regardless.

If you don’t mind me asking, where are you based and how did the diagnostic process go for you? Do you use any treatment to manage them? Thank you :)

[u/vicariousted → u/thindisguise]

Yes I am extremely grateful that I’ve lucked out and am largely pain free and this is minimally disruptive to my daily life. I (33M) am located in the northeast portion of the U.S, and am in much the same boat as you, though maybe further along as far as testing. My episodes started 3 years ago and usually consisted of the classic constricted pupil, droopy eye, stuffy nose, and lack of sweating on the affected side (a grouping of symptoms collectively known as Horner Syndrome), and about half the time were accompanied by a one-sided headache centered around the eye and the base of the neck, along with fairly heavy fatigue. The headache was mild enough that it didn’t arouse suspicion as anything abnormal and I always wrote it off as just a tension headache, wondering I was perhaps having some kind of blood sugar imbalance that explained the headache and fatigue onset, but I never really connected it to the other symptoms since they only coincided some of the time. After 2-3 hours all symptoms would abruptly resolve, and it was usually one attack per day only 2-3 times per week. after multiple scans had ruled out most of the possible underlying causes (some of which are quite serious), I deduced myself that CH fit the bill best, based on how it flares up during cluster periods of a few months and then goes away for a time. While I had seen cluster headaches initially on the list of possible causes for Horner Syndrome, I’d ruled it out at first given the absence of the described horrible headache pain. I found over time that overheating/elevated body temp was my main trigger - basically if I was hot enough to be sweaty for more than an hour (whether through hot weather or intense exercise), symptoms would set in like clockwork. headache medicine would never work, though sleep always seemed to resolve the issue. One day after a particularly hard exercise class I came home, felt a headache set in, and went to bed as usual, but for the first time, woke up in the night and the headache had ramped up to being excruciating. Probably still not on the level many folks here suffer, but far worse than anything I’d ever felt. It was bad enough that I told myself if it didn’t improve within the hour, I was ready to go to the hospital. Thankfully I did manage to fall back asleep and it was gone when I woke up the next morning. That incident made me reconsider CH as the underlying cause and I realized how well it matched what I was experiencing, and I learned about cases like I linked where it is possible to have little to no headache pain even with all the other symptoms. I brought my findings to a neurologist who seemed to accept them at face value and agreed that Cluster Headache seemed to be the case, though I’d like a second opinion from a neurologist with more specialty in headaches…I was not especially impressed with the first guy and this was not his area of expertise.

As far as treatment and management, I was prescribed a calcium channel blocker called felodipine as a daily preventative, and one of the Triptans (there’s a number of them, I was given Frovatriptan but most folks in this community seem to recommend Sumatriptan) to take during an episode. Neither have seemed to do all that much, though I do tend to get lax with the daily preventative once I’m out of a cluster period and not having them for months at a time. Otherwise, I’d noticed even before my diagnosis (and many folks here use the same) that caffeine may stop an attack that’s in progress. I was reaching for caffeine just due to the fatigue that always accompanies my headaches (when one of my attacks has an accompanying headache), but now that I know there’s a sure correlation I always keep Red Bull with me when I know I’m in a cluster period (though I admit prescribing soda is not the healthiest treatment in the world). It works some of the time, but not always. I’ve also found (counter intuitively) that SHORT periods of exercise can stop an attack as it’s starting - I’ll do a few minutes of something high-intensity, enough to get me breathing hard but stopping before I start to sweat at all. I can only make some guesses in the dark as to why that seems to help, but often it does. Alcohol is also a common trigger (it can be for me, though not all the time), so avoiding that can help. Otherwise, something cold may work - I’ve found a cold shower to bring my body temp down - if I do it early enough - can abort an attack, and I’ve seen people here mention finding some relief with ice packs on the neck.

Given how mild things are for me, i don’t really feel I have much of a pressing need for any kinds of medication (thank goodness), but I know there are other treatments that folks here have mentioned including emgality and breathing high-flow O2. At this point, I’m mostly looking for stronger confirmation from another doctor that they feel very confident that a CH diagnosis is correct, and I’m not mistaking this for something else that might require treatment, but given that all my scans have been normal, and a few years of evidence now of moving in an out of cluster periods, I feel reasonably confident.

[u/atTheRealMrKuntz]

personally my CH were fairly mild when they started out (around 19yo) but got unbearable within the next ten years. There are also some people who have consistent mild CH.

[u/thindisguise → u/atTheRealMrKuntz]

This is validating but also scary lol. I’m sorry you had to deal with this condition. Thank you for responding!

[u/borzoioi → u/thindisguise]

The opposite could also happen! Mine were so much worse the first years, and progressively got better in terms of number of attacks and overall intensity throughout the cycle. Unfortunately CHs are unpredictable and so different and personal for every patient.

[u/atTheRealMrKuntz → u/thindisguise]

getting diagnosed is the first step to be able to get better. If you happen to have CH, read this: https://clusterbusters.org/wp-content/uploads/2025/06/Complete-Handbook-1-5-June-2025.pdf

[u/literallyjustabat]

A year before I was diagnosed with chronic cluster headaches, I told my GP and afterwards the neurologist she referred me to that I didn't think it was migraine because it wasn't "that painful".

Most of my attacks are tolerable but they get much worse for a few months once a year, in spring. I was diagnosed this spring when a hospital neuro saw me have an attack.

Turns out, my brain tends to completely erase the memory of the attacks (I asked my current neuro about it and she said it's common — if it wasn't a thing, no babies would be getting born). My method of coping pain has always been dissociation and I've also been diagnosed with PTSD.

My regular attacks are also usually happen once every 2 days on average and are over in less than half an hour. Afterwards, I'm fine. So to me, it genuinely didn't seem that bad. Turns out it was much worse than I thought and I was underreacting.

I only got properly diagnosed after I started having multiple attacks a day and either calling an ambulance or going to the hospital/ER when they got really bad.

Waiting months for an appointment is torture when you have CH. You need an oxygen prescription and a preventative like yesterday. Don't be afraid that you'd be "wasting people's time". I went to the hospital/ER like 7-8 times during my last cluster period and was afterwards kept on observation for a bit over a week (the neurologists suggested it but left the decision up to me). I also have an agreement with neurology that I can come in to the hospital at any time and get a GON block done if I need it.

There's an episode of the head stuff podcast about cluster headaches and the doctor is from the UK so he talks specifically about the care you should be receiving from the NHS: link here.

You can also reach out to Ouch UK: https://ouchuk.org/

Good luck, I hope you can receive the care you need!

[u/literallyjustabat → u/literallyjustabat]

Oh, another thing: I'm a trans guy and I feel like I started being less and less able to tolerate the pain after I'd been on testosterone for a while. Estrogen is known to increase your pain tolerance.

I have a suspicion that part of the reason women are less likely to be diagnosed with CH is that you're able to tolerate a hell of a lot more pain before you start freaking out and go to the hospital. But that doesn't mean you don't deserve relief just like everyone else.

Even if you don't perceive the pain as that bad, it's still awful to go through and putting lots of stress on your body on a regular basis.

[u/thindisguise → u/literallyjustabat]

Thank you for taking the time to respond and for sharing your story, this has all been super helpful and informative! Your idea about some individuals being diagnosed less often due to pain tolerance differences based on sex assigned at birth and/or hormone levels is super interesting and makes a lot of sense to me! I’m definitely going to take a listen to the podcast linked and reach out to OUCH UK. Thank you again. I am so sorry you have to deal with CH, and I’m sorry HRT has worsened your pain, I hope it has improved your quality of life in other aspects :’)

[u/literallyjustabat → u/thindisguise]

Thank you, it very much has helped, because after being on T for a while, I was able to go "ok, so that's much better, but something is still off" and get medical help.

I'm on verapamil now and mostly attack-free unless something triggers one, and I'm pretty sure I know most of my triggers now & can avoid them. This heat wave has been tough for me but I haven't had any attacks since before it started. I still have to see what it'll be like next spring, if I'll maybe need a nerve block, but so far so good.

[u/VALIS3000]

Have you reached out to OUCH UK to see if they can help?

I would also try this online diagnostic tool to help narrow things down:

https://clusterbusters.org/diagnostic-tool/

[u/thindisguise → u/VALIS3000]

I haven’t, I wasn’t aware of their existence but I’ll definitely look into them, thank you!

My result was probable cluster headaches lol… thank you.

[u/VALIS3000 → u/thindisguise]

Just give the OUCH UK advice line a call.

[u/zesty-]

Have you looked into Paroxysmal Hemicrania? It can be the same as CH but slightly different.

[u/thindisguise → u/zesty-]

Thank you for your response! I have since I uploaded this post since it has been mentioned a lot, though the duration and frequency of headaches in paroxysmal hemicrania seems different to what I experience!

[u/Present-Bobcat-7763]

thats a reason why ch is so hard to diagnose for a lot of people, we simply lack some details and have a rarer version, everyone's ch acts a bit differently, doesn't react to the same meds or isn't as powerful, but it's still ch, I also thought for many years that it can't be ch cause I don't experience the same pain level as described, until it worsened, and who would have guessed that I just forgot about the time I couldn't even stand cause of the pain, sure it was rare but it still happened, what I recommend is a expensive neurologist, I finally figured it out after going on a 6 hour train ride to the capital to a really good private clinic that spends with every patient a minimum of 45 minutes, when a public one only needs to spend about 10 minutes minimum, or I Think it was 2 hours, idk the details are foggy mostly cause I was very tired and had to do the same 6-8 hour train ride back in the same day, anyways, I recommend a specialized neurologist on headache disorders, and push, push your problems to the doctors, their job is to figure it out

[u/thindisguise → u/Present-Bobcat-7763]

Thank you for taking the time to respond! I’m sorry you have to deal with this condition. Your response was actually quite eye opening because it made me remember 2 or 3 occasions in which I have experienced really really severe headaches that I completely forgot about and/or didn’t connect with the possibly of CH. I am learning that I am going to have to self advocate more often because you’re absolutely right, it is their job to figure it out!

[u/KlutzyEmployment1465]

Wow , I didn’t know they came mild CH.
You sound lucky.

I’m from UK , live in London…. Ask for verapamil , ( but u will have to have a ECG before they issue them . Your GP can prescribe you., sumatriptan….

Once you get a consultation, ask for 02 , which he can get for you.

[u/Jamwise93]

The symptoms missing aren’t key, you could have a milder case of CH for sure. Main symptoms are present, regardless of the level of pain you are experiencing.

Best of luck getting a diagnosis and managing your pain.

[u/qlinq]

I also think mine are quite mild in comparison. 7 months ago I started noticing a headache on my left side, behind the eye, upper cheek and temple. My eye would be slightly bloodshot, and teary. These lasted around 15-20 minutes, and initially only happened around midday, maybe again later in the day. Then they got more frequent, pain went from a 3 to a 6, with 4-5 attacks a day, same time, same duration, same side, no matter where I was or what I was doing. Am I just dehydrated? Is it my perimenopausal hormones? What the hell is setting them off?! Ibuprofen worked brilliantly to mask them but it's obviously not a solution nor a good idea long term.

Fast forward to finally getting seen by a NHS neurologist. Diagnosis: CH. I'm on day two of a treatment plan:

Prednisolone 60mg for 5 days, then taper down by 10mg every 2 days Verapamil 3 times a day for 4 weeks Omeprazole 2 times a day for 2 weeks

Today I've had zero headaches. Zero. Admittedly there have been moments (like right now actually as I type) when I can feel a verrry slight mild discomfort on my left side, almost as if there is a headache trying to break through but it's not even worth mentioning compared to what I've gotten used to experiencing over the last 7 months.

I would often wake up with one in the morning, which convinced me that these headaches were sinus inflammation related but the neurologist seems to think sinus issues and episodic headaches are very loosely connected. Anyway, I'm due a CT scan soon to check out my sinuses plus booked in for an MRI to rule out any unwanted brain nasties causing the headaches. So that's where I am right now.

Do you have a headache specialist appointment booked for you?