r/ClusterHeadaches

I’ve never been one to get headaches often but around 2 weeks ago I started experiencing a sharp headache pain in my right eyebrow that would sometimes only last 15 minutes and others 3 hours. They sometime come back during the day. Can cluster headaches start randomly at 29? Or was this caused by something? Tylenol doesn’t help it

My cluster headache journey — almost 40 years of trying to understand this disease

I’ve been dealing with cluster headaches for a very long time, and I thought I’d share how this all started for me.

My first one was back in the 1980s. I was driving from Washington State to Arizona in the summer and we were going through miles of blooming Scotch broom along the highway.

Out of nowhere I got a headache unlike anything I had ever experienced.

It was unbelievably painful, but it didn’t last very long. Then it happened again. And again. I think I had 3 or 4 attacks over the next few days.

I had no idea what a cluster headache was. I was convinced it had something to do with the pollen from all that Scotch broom.

Then nothing For about 5 years.

Fast forward to the fall, about 5 years later. I remember we had just turned the clocks back. I got another headache that felt very similar to those headaches I had experienced years earlier. Except this time it didn’t go away.

This was my first real cycle.

At first, the attacks were spread out. Maybe one every other day. Then they started increasing. One a day. Then two. Then three. Then five.

Eventually I was getting as many as eight attacks a day.

It took weeks for the cycle to build to that point. The pain and frequency seemed to keep getting worse and worse. Then, eventually, the attacks started tapering off. The whole thing lasted around 4 months. I had absolutely no idea what was happening to me. At one point I honestly wondered if I had a brain tumor. When the cycle finally stopped, I thought whatever strange thing had happened to me was over.

Then the next fall, almost on the exact same date, it started again.

This time the progression happened much faster. One headache a day quickly became two, then five a day. And they just kept coming.
A lot of them hit while I was sleeping or during the night. Others came in the early morning or late afternoon.

I started seeing doctors, trying to figure out what was wrong. Unfortunately, my experience was that they were often treated as if they were just ordinary headaches. They weren’t.

I don’t think there are many ways to explain cluster headache pain to someone who hasn’t experienced it. It’s not just the intensity of the pain. It’s knowing another attack is coming. It’s being afraid to go to sleep. It’s having your life revolve around when the next attack might happen.

This went on for years. Eventually I found information about oxygen therapy.
Oxygen became my best friend. At first I was using a nasal cannula and only 5 LPM. It would abort maybe half of my attacks. The key for me was getting on the oxygen almost immediately, within the first minute or so of recognizing what was happening. If I caught it early, sometimes I could stop it. If I didn’t, I was usually in for an hour or two of hell.

Over the years I kept going to doctors and trying different things, but eventually I realized I was going to have to become my own advocate. I started researching everything I could find about cluster headaches.

After about a decade of this, I eventually became willing to look at treatments outside of what I had already tried, including psilocybin.

I was honestly amazed by my experience with it. I used it as a preventive and ended up having a remission of almost two years.For someone who had spent years having his life dictated by cluster cycles, that was an incredible amount of freedom.

My cycles have generally seemed to come in the fall, and sometimes in the spring. Even after all these years, I still find myself trying to understand why they happen when they do.

Accessing alternative treatments wasn’t easy either. I didn’t exactly have a social circle where this was readily available, so that became another challenge.

I’m not posting this because I think I have all the answers. I definitely don’t.

I’m posting it because I know there are people here who are somewhere earlier in their journey than I am, and maybe someone will recognize part of their own story in mine.

It’s taken me decades to understand what was happening to me. I still have a lot of questions.
But I also have a lot more hope than I did when I was lying awake at night wondering if I had a brain tumor.

Thanks for letting me share my story. THANK YOU for having this forum available as an added resource to the Cluster Attack Survivors.

MRI scan is fine, bloods are fine, optometrist fine, tried chiro, Physio, massage, acupuncture. What next ? Don’t want to run with anti depressants.

I've had clusters every 2 years for roughly 2 weeks in autumn for the last 18 years. I am 39 now. Severe pain all the usual symptoms. Doctors (UK) got it wrong for years prescribing aspirin and naproxen . One especially severe episode i went into hospital and a nurse gave me zomig nasal spray. Got a diagnosis not long after this. The zomig worked but didn't stop them completely. Also felt like a zombie during the period. That was 2018

2021

I started fluoxetine (Prozac) 10mg and raised up to 60mg after 3 months for depression. This was now over 4 years ago. I have not had a cluster since. Its maybe due to my age or maybe the anti depressants.

Hope this helps someone!

Indian/Bangalore patient; suspected cluster headache, looking for others in Bangalore/India

I'm currently having recurrent severe one-sided headaches, lasting around 3 hours. I'm trying to get properly diagnosed and find a neurologist in Bangalore who actually treats cluster headache.

Are there any Bangalore/Indian clusterheads here who can share their doctor, treatment experience, and how they got access to oxygen/sumatriptan?

Currently going through my worst season and I want to try mushrooms (I haven't ever tried them before). I know the guidance is to wait 5 days after the last dose of sumtriptan but I can barely go one day without it. How bad is it to just take the mushrooms without waiting the 5 days?

I’ve had cluster headaches since around age 14 but doctors had put them down to being regular migraines. It wasn’t until about 2016 (age 20) when I first discovered what CH were. At the time my cycle started in July and would last around a month by the 3rd year of the same pattern I bought this up to my GP as I was now 100% sure.

Because my cycles were on the shorter end even with a rushed referral they had stopped by the time I saw a specialist. They agreed it was likely cluster headaches and approved sumatriptan nasal spray for future attacks. This was in 2019 and I have been lucky not to have any attacks until now again started in July but are mostly shorter this time and not happening everyday or at a set time (probably due to my lack of sleep for other reasons).

This time after having some kind of diagnosis I’ve tried to proactively get help during one of my first few attacks I contacted 111 who advised going to a&e for oxygen but as they were so short I wouldn’t get there in time.

I did eventually get the prescription but the spray hasn’t always helped. During a much longer much more painful attack the other day I took the advice offered by the 111 doctor and other doctors I’d seen about going to a&e the problem was it was a 5+ hour with to see anyone and the attack had ended.

I was told my gp can write a letter for oxygen therapy that I can get at a clinic attached to this a&e much quicker but my gp refused and is making me wait to see a neurologist. He asked for them to see me as soon as possible but I face running into the same problem of no longer being in a cycle when this appointment does happen.

My question I guess is what has been the experience/outcomes when seeing a neurologist either during a cycle or when it’s ended?

Does anyone have any experience with CH treatment. I’m trying to figure out which mushroom strains are better or if it even matters. I hear Golden Teacher or PE are good. I have tried PE but no relief. What about B+.

I would welcome your feedback. Thank you everyone.

Episodic survivor for 25 years.

Hi! My husband has diagnosed cluster headaches as well as ocular migraines. Clusters on the left, migraines on the right.

When I met him he'd have a cluster once every few weeks. I did some research about them as I have chronic migraines but have never had clusters. I helped him w his sleep schedule, he started taking melatonin as well. When he moved in with me he went down to about one every few months and then even six months without one.

We got out of the habit of melatonin earlier this year, working on getting it back in routine. We both have ADHD, when something's forgotten one time it's a whole ordeal to get it worked back in. He went back to one every few months, then suddenly starting on the 31st they have come nearly every day. The way they were presenting was different from the clusters I'd witnessed him have before.

He has said that when these come on it is immediately 10 out of 10 pain, not within a few minutes but suddenly. I got worried about thunderclap headaches naturally. He has also said it felt like his neck was genuinely breaking when it starts. When he's having an attack he has all his other cluster symptoms, with the added intensity of the neck pain into his shoulder. He told me during two different attacks he was afraid it was a heart attack or something.

We went to the ER Monday, we were there for 4 or 5 hours. He mentioned to them that he is diagnosed with both migraine and cluster. How it's changed, his pain levels everything, was actively describing what by definition is considered a thunderclap headache. They did a CT that didn't show bleeding, told him it was migraines and sent him home. Nothing to break the cycle, nothing for the pain, also didn't do any labs. Not even oxygen or anything.

His primary care the next day, tells him he things it's a herniated disk and it's triggering his clusters. Called in a MRI, that cannot be done until the 28th. I'm very close to scheduling at an imaging center and paying out of pocket. He was prescribed a muscle relaxer that he can't take, we're working on getting an alternative. His doctor recommended toning down on BC powders (aspirin, he can't swallow pills) so he didn't also get stuck in rebound.

We were already suspecting it not being just clusters, maybe referred pain causing attacks/flare or something like that. I've been worried about blood vessels and blood pressure.

Idk if I'm asking for advice or similar stories. Im chronically ill myself and this man has seen me go through some rough shit. It breaks my heart watching this get him the way it is, he apologized last night for being needy.

Also I'm sure I've accidentally left out some details, this week started with hospital, then doctor, then being told yay we can move and doing a bunch of planning on my part, and then the waiting game with insurance and then the MRI being scheduled so far away. So I apologize for anything missing. I'm just scared. Dudes my best friend, ya know.

I also apologize for length, I'm a terrible rambler.

I've been moving a lot which has made it hard to get consistent care but not a single doctor has had a good answer for me. Any help with what could help would be deeply appreciated. Context: I'm a 20s female, work out a few times a week, work a desk job, eat decent, and have no other major health problems other than this. I have bad eyesight and dry eyes but no vision problems with contacts/glasses, and I grind my teeth occasionally but don't have any jaw issues.

Constant Symptoms (Daily):

• Cannot breath fully ever, any deep breath feels blocked
• Ear fullness, can sometimes pop but fullness returns fast
• Sinus fullness + pressure + tenderness (temple, browbone, cheeks, etc)
• Post nasal drip with thick mucus
• No runny nose but can blow some out sometimes
• Cannot lean down with getting dizzy (especially past 180 degrees)
• Cannot move head fast in any direction
• Feels like someone is slightly squeezing my head most of the time

Worse Symptoms (Weekly at some point):

• Sinus pain
• Temple pain
• Head pain along middle strip / headache
• Dizziness
• These are all "dull" pains but usually Advil resolves

Worst Symptoms (Monthly/Rare):

• Worsened pain throughout head and sinus regions
• Nausea
• Vertigo
• To the point where I cannot drive or work or even think because I feel disoriented, head cloudy and full.

Triggers:

• Yoga (especially downward dog)
• Air travel / train tunnels (any other big pressure changes)
• Alcohol / Caffeine / anything leading to Dehydration
• Dancing, running, any activity moving the head fast
• Sitting sideways on the bus (not facing street)
• Honestly, sometimes random as far as I can tell

Do daily:

• Steam nose
• Saline rinse
• Azelastine + fluconase nasal spray
• Drink water
• Massaging face to attempt drainage

Tried:

• Septoplasty + turbinate reduction surgery
• Less flights (but take Sudafed when flying or when symptoms are unbearable)
• Pin-prick allergy tested (no allergies)
• MRI (2 years ago) clear
• Recent audio check, ears look normal
• Most recent CT scan came back fairly normal but has not in the past (have had sinus infections before)

I've mainly gone to ENTs but they have nothing new for me. I've lived in many cities with different climates so it doesn't have to do with location either. Some people have suggested migraines but these are constant symptoms that never come in waves/auras, it's a baseline level of livable and ignorable and at its worst, I can't do anything but lay in bed and maybe scroll. Any ideas on what this could be?

something i’ve noticed are the days I hit snooze, i tend to have a lot more attacks and pain during my clusters. i know it has to already do with bad sleeping habits but if there’s one that i noticed not only brings my clusters back but makes them even more painful that day when im in cycle is snoozing.. anybody else notice this?

I wanted to share my successes with eliminating attacks by inciting brain freezes as I think it is very compelling and has drastically improved my quality of life while in a cycle.

Around two years ago I was in a very long and intense cycle. I was having an attack and was looking for any sense of relief as many of us do. I have a home made cold plunge so I decided to get in while having an attack. To get some relief, I submerged my entire body and head under water for as long as I could hold it under water. It gave me an intense brain freeze. Within minutes the attack was completely gone.

I wasn’t sure if that was a coincidence, so I began doing that for every attack I had at home and over the past two years, I have been able to eliminate almost every attack I have had at home with a nearly 100% success rate. This works for both shadows and full onset attacks.

I was researching the science behind this a couple days ago and came across a testimonial of someone who has had similar success with inciting a brain freeze by getting a large glass of ice water and drinking it as fast as he could to get a brain freeze. I tested that with an attack and it also eliminated it IMMEDIATELY.

This is the only thing in almost 8 years of dealing with cluster headaches that has given me confidence with being in control and having something to combat an attack.

Please try this for yourselves and share this with as many people as possible. If you try it and it works, leave a comment in here and let me know.

This could help so many of us!

P.s. if anyone is interested in the cold plunge build I have, I would be happy to share links to all the components. It was very inexpensive compared to prebuilt options and has been a heaven sent for me dealing with clusters.

Good luck everyone!

F36, 167 cm, 68 kg

Since having COVID-19 in 2021, I have been experiencing recurring flu-like episodes from time to time. My symptoms include: elevated temperature (38°C), severe headaches, pain behind/in the eyes, especially when looking left or right

Sometimes it comes with general weakness, feeling of heaviness in my head and difficulty concentrating. I'm experiencing this every two-three months, the symptoms last for 2-4 days and then go away.

At the same time, I do not have a sore throat, cough, or sneezing. My sense of smell is not affected, including during episodes of headache.

I have no history of migraines or other known medical conditions.

What tests would you recommend to investigate these symptoms, and what type of doctor should I see to determine whether there is an underlying problem?

GP was not helpful, told me to have more rest and drink more water.

Does anyone have advice on the feeling of fogginess you get after a cluster attack? Like I can deal with the pain and I have plenty of coping mechanisms for that but I just have been finding it difficult to get back to work after the pain subsides. It feels like my motor skills and short term memory just deteriorate for a few hours afterwards.

Curious as to what careers you all have and how you manage them during cycles. I run several restaurants for a living and do hospitality consulting & am currently going through a pretty vicious cycle. Any nights where I have to work on the line are dreadful - whether I’m waiting on an attack or dealing with one the suspense and pain kills me. I’m episodic so hoping to wrap this cycle up within next week or so. Curious how everyone else manages.

Hi, got diagnosed with cluster headaches in emergency ward (after a couple of dreadful visits).

Sumatriptan helped, and pain timing - three hours of pain four times per day clues towards them.

However. Some symptoms do not match with classic definition of cluster headaches.

What other symptoms of clusters do you have?

I have a really strong vertigo together with pain + my corner of the mouth on affected side periodically gets numb even without pain, and general body sensations on affected side are off.

Plus, my main cluster episodes seems gone, but I still have a weird residual throbbing pain above my ear - it was better after episodes, but came back recently and doesn't go away.

My ENT suspects SCDS, but not all symptoms match it either. I also have a history of neck issues, and wonder if this pain can be cervicogenic.

I am currently waiting for results of CT scans and MRI, and for my next doc appointment, but because of holidays season everything is much slower where I live, but the pain and fear is real and now.

EW checked me, so I doubt my condition is life-threatening and gladly my motor functions seem unaffected, but sensations surrounding my pain episodes are so weird.

How do you guys doing in-between pain episodes?

Is it normal for you, or do you have all sorts of residual pains and also barely keep it together?

Or is it normal for you?

Thanks in advance to whoever sees that. We share the same challenges.

Cluster headaches triggered again after a recent sinus sickness seems like. I recently moved to nyc and don’t have a neurologist to go to. Any recs?

My neurologist in Atlanta diagnosed me with the Clusters and prescribed me sumatriptan pills, injections and verapmil yearsss ago. Unfortunately I don’t have anything for relief right now so I been raw dogging it.

Couple years ago, I discovered chugging a Red Bull for relief. Tried that today, unfortunately didn’t work.

Feels like I tried everything. They usually last up to 3 hours. I tried melatonin, oxygen in can, vitamin d3, nettipots, nothing worked.

Any thoughts or just words of support are appreciated 🥹