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A person looks at confusing direction and road signs to decipher their diagnosis journey

Cluster Headaches – Journey to Diagnosis

Growing up, my grandpa had cluster headaches. I remember he would say, “It feels like a hot poker stabbing me in the eye.” I remember thinking, “How would you know what that feels like?” He passed away in 2003, only knowing that he suffered from cluster headaches.  

He had no idea how to stop his attacks. He would have an ice pack on his head and would pace the floors. Being a welder, he had access to oxygen tanks at home and at work. He never knew oxygen used according to a specific protocol is the best way to abort an attack!

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New headache symptoms emerge

When I was about 30 years old, I started having new headache symptoms. Since I had migraines for years, I knew this was something different. I would get intense head and eye pain at 2 pm every single day. It would last 2-3 hours and then it would go away. 

At my next appointment with a headache specialist who suffers from migraines himself, he simply told me, “Since you have migraines, it is just a migraine.” However, I only had triptans, no preventative medication. After talking options, in his frustration at the lack of medications left for me to try, he tossed me a prescription as a “Hail Mary”. It was a calcium channel blocker. It worked! 

Trying to understand this new headache

I was so excited, but also confused. When I reported to my headache specialist that this had worked, he simply shrugged and had no more insight. I remember feeling as if this medication should not have worked and it was my imagination. 

Something happened with my prescription refill and I decided to not fight his office for the refill and stop the medication. Within days the headaches returned. I was still confused about this headache and what it meant. However, I made sure I always refilled this prescription.

A strange pattern in one eye

November 2017, I woke up at 7 am to take my kids to school. I had an intense pain in my eye. It literally felt like I had something in my eye, but worse than I had felt before. I had some eye drops, so I tried to “wash out” whatever was in my eye. It didn’t work. My eye was red and tears were flowing. My eye hurt and watered so badly. I couldn’t keep my eye open. My nose was stuffy and running. Of course, it was only on one side. 

My other side was unaffected. I grabbed sunglasses and thankfully I only live a mile from the school. It was the longest mile of my life trying to drive. However, about 2 hours later, it was like it never happened. I convinced myself that maybe whatever was in my eye, had finally left! At 7 am the next morning, it all happened again. I was so confused. This continued for a few days, 7 am every single day, then it stopped. I was relieved. This recurred several days a month unpredictably.

Road to diagnosis (again)

However, that would not be the end, but only the beginning. In March of 2018, as spring began to surface, not only did my pattern continue, but it intensified. By the time I got to my family doctor, I was having about 4 attacks per day, every day for 2 weeks. I was terrified. They always came at the exact same time, every single day. A couple of days prior to my doctor’s appointment, I found myself pacing the floor because laying down or even sitting made the pain so intense I had to jump up. 

I flashed back to my grandpa. I realized his analogy of “a hot poker stabbing me in the eye”! So I grabbed ice packs and paced the floors every time an attack occurred. While it did not stop the attack, it did help me manage until it stopped. Also, making this connection somehow gave me a bit of relief. I finally had an answer to that question I’d had years before.

My doctor wanted me to have my eyes checked by an ophthalmologist, since I had eye pain, while I waited to get into a new neurologist that she recommended. This neurologist sat and listened as I poured through my many symptoms. I left the office with a new diagnosis that day, cluster headaches, in addition to my diagnosis of migraine with aura. While the words did not wipe away my pain, it gave me hope that I now knew my diagnosis and could begin searching for ways to manage.

Yes, you can have more than one headache diagnosis

I had a follow up with my neurologist recently. In going through my symptoms and diagnosis list, he updated my cluster headache diagnosis from episodic to chronic. The other day I had an attack and the image that came to me was a bee stuck in my eye socket stinging me over and over and over.

What I hope for others to know is, it is possible to have more than one headache diagnosis. It is so important to advocate for your health and make sure you share your symptoms with your doctor so that you can receive the best treatment possible for your condition.

Those who have cluster headaches, what imagery would you use to describe to someone who wonders what a cluster headache feels like?  What has your road to diagnosis been like?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • wobbly head
    1 week ago

    This is long so I’m sorry, I’m writing it in the hope it my help someone who identifies with these details. I’ve suffered with headaches since I was a young child, my earliest memories of head pains were as a toddler. These headaches continued throughout my childhood. As a teenager the headaches became more prevalent and I would suffer bouts of vision disturbance without pain as well. Also becoming a teenager I had more severe headaches, so severe at times that I must have passed out on occasions. Two such incidences, I’d woken up against the toilet with my head on the seat and body laid out on the floor, hours later. Then another time I woke up around four hours later on the floor in another room, which I didn’t remember going into. The pain is so severe, I’ll pace around, look to bang my head on things and occasionally I have banged my head on things in desperation. I’ll rock and practically scream with the pain, nothing compares to the pain of these headaches for me.

    Around 20 years ago my headaches became a very regular occurrence and I couldn’t work as a result. I sought help from the doctors and in 2006 I was referred to a headache clinic. I was diagnosed with chronic daily migraines with aura as the prevalent headache type. I do get an awful lot of aura, migraines for me are always one sided too, so I recognised those to be migraines. But I don’t get aura with the skull splitting headaches. So even with the migraine diagnosis, that didn’t explain the skull splitting headaches, the ones that make me pace with pain. I still get the really bad headaches that make me want to crack my head on a wall and pace around, but luckily not that often. Now in my late 40’s I’ve recently been referred back to a headache clinic as my symptoms have changed somewhat. I’ve got my migraines under a fair bit of control with candesartan (nothing else has made any difference, you name it, I’ve tried it, rounds of botox, GON blocks, various preventers etc. etc) Getting some control on the migraines is what has shown the (I’ll call it new headache type) which stands out as different to the migraines, although it could well have been confused along the way with my migraines as they happened occasionally. I started to suffer with a splitting pain in one temple, usually my right temple but occasionally my left temple. It’s very severe, it pounds with each heartbeat and is behind my eye on the same side as well. I find it hard to stay still with them, I’ll pace and wonder about and that’s what sets it apart from migraines which I need stillness for. Nothing will stop these headaches, a triptan will knock one back very slightly for an hour or two, after an hour or two and pain killers don’t have an impact at all. They frightened me, as they’d go on and on. Head splitting headaches, I need to press on my temple often for hours at a time to try to ease the pounding. I’ve just been diagnosed with Trigeminal autonomic cephalalgia (TAC) I had no idea what those type of headaches were, I’m still not totally sure what they are. But along with the splitting pain, I also get a watering eye, often a red bloodshot eye and my eyelid can puff up at that side of the pain only. The strangest bit, which happens often with these, a totally bunged up nose at the same side of the headache only, absolutely horrendous these are. I do think many of these headaches have been misdiagnosed as migraines along the way, I’ve even thought they were migraines myself. I was dumfounded when I was diagnosed, but upon checking for details of the headache on the internet, that diagnosis made a lot of sense to me. I’m still suffering the migraines but not as many have full breakthrough pain, only around five or six a month now. I’m hoping that I can find some treatments that will sort these new ones out, at least I know that there’s hope. Doctors thought at one point it could have been temporal arteritis but blood tests came back negative. I was actually relieved when I received the TAC diagnosis as at least it gave me an explanation for what this type and positioning of pain was. It’s early days, but I’m so hopeful I can get something to work for these, as migraines have taken years to gain any control over. Hope these details help someone find answers to their headaches.

  • Anna Williams moderator author
    1 week ago

    @wobbly head Thank you so much for sharing your story. I’m so sorry you are having migraine with aura as well as these terrible attacks. So Cluster Headaches are under the TAC umbrella in diagnostics. I can relate to so much of what you wrote. I’m glad you were finally able to get an accurate diagnosis – it is relieving to finally know it has a name. I hope your Dr. will be able to help you find some treatment options that will help you get better pain management with your migraine with aura as well as your TAC. Finding a support group really helped me – this article is an interview with a guy who started an organization that helps people with Cluster headaches get support – https://migraine.com/living-migraine/bob-wold-cluster-interview/. Pain free wishes to you! (Anna – Migraine.com Team)

  • Anna Williams moderator author
    1 week ago

    @wobbly head You are welcome. I have met many women online, even in many countries who have Cluster Headaches – we are not alone. However, it is certainly taking the medical community a bit of time to update their “textbooks” on this information. Pain free wishes to you! (Anna – Migraine.com Team)

  • wobbly head
    1 week ago

    Thanks for the link to Bob Wolds cluster interview. It’s been a massive eye opener to me and so helpful. I’m in the UK so don’t have access to many of the new treatments available sadly. I’m female, so I’m guessing that’s not helped with diagnosis, as it had been said to me previously that females don’t get cluster headaches. Thanks for your help, sending support hugs to everyone who reads

  • Holly H.
    1 week ago

    Anna, I also have 24/7 migraine with aura, ocular migraine, brain stem migraine… plus clusters. The migraine types have been around for many years; the clusters started March 2019. They wake me up every day of the world between 1:30-2:30 a.m., and go throughout the day, worse in the mornings. My neuro hesitated to give me the cluster diagnosis also because it is typically in men and also could have been a migraine variant; but as they consistently continued, he did officially diagnose them as clusters.
    A difference is that the migraine never ends, but does have a volume knob, as it were. And there’s the migraine aura, which goes on 24/7, and keeps me constantly “car sick.” My migraine epicenter is at the right of center down through my right eye, but the cluster pain can be anywhere or everywhere in my head plus eyes. Oxygen therapy for 8 or 9 minutes three times a day does ease the clusters back somewhat, but doesn’t really do anything for the migraine. Unlike migraine, the clusters do have a beginning and an end. And, wow, are they ever pain-filled! Before I was diagnosed, I called them brain cramps!

  • Anna Williams moderator author
    1 week ago

    @Holly H. Brain cramps! I love it! I’m so sorry you experience all of these diagnoses with Cluster attacks on top. I’m so glad you are able to get oxygen to help stop the attacks. Yes, stereotypically it was thought it was a “man’s diagnosis” but more women are being found to have it. I’m so glad your Dr has worked with you to get you the proper diagnosis and hope that will help you get better pain management at some point. Waking up to a cluster attack at 1:30am is brutal, I know. Thank you so much for sharing your story. Pain free wishes to you! (Anna – Migraine.com Team)

  • InesBrady
    1 week ago

    These cluster headaches are the ones where the pain is so bad that I envision my head being made of glass. Then, I dream of asking some one to take a baseball bat and hit me in the back of the head, with all of their might. Wishing to shatter the headache pain into a million shards of glass never to be put back together again…. That’s how badly it hurts.

  • Anna Williams moderator author
    1 week ago

    @InesBrady – your description is spot on! I hate that you have them as well. Thank you for sharing. Pain free wishes your way! (Anna – Migraine.com Team)

  • estes1
    1 week ago

    I’ve had occular migraine since I was 32, about 28 years. A couple of years ago I was at work and I thought something had fallen out of the rafters at the store and gotten into my eye, it just clouded up, hurt like hades and then my head started stabbing from the area just to the right of the nuchal ridge, extending around the base of the skull to the back of my ear. Then the icepick pain shot up over the back of my head, down my forehead and straight through my eyebrow, into my eyeball. Excruciating! I’ve never been able to see correctly out of my right eye since, and I’ve driven my opthomologist crazy because he says there’s absolutely nothing wrong with the eye itself, but my sight is diminishing rapidly (over the past year and a half, three prescription changes). These things alternated with my “regular” migraines for about a year and finally my PC said, “well, it sounds like Cluster Headaches, but only men get them…” She sent me to a neurologist, who didn’t even interview me, he based his diagnosis on what my PC sent him and within 3 minutes, sent me on my way with a new ‘script for some sort of epilipsy meds, made me go get an EKG, and when he got those results, he called me PC and she took my Imetrix away. I gave up, begged my PC to at least let me have my Imetrix back, had to quit my job (you can’t deal with money and the public if you can’t see, can’t count and can’t talk straight), got a job as a personal care aide, and I’ve just been living this way since. I can’t get the new meds because I am on Medicaide, can’t get a better job because of my condition (I could get insurance to cover the meds if I had them long enough to get a good job again, then Medicaide wouldn’t have to pay for them anymore anyway! It’s one of those catch-22). My PC still doesn’t acknowlege that it could be cluster, and I’ve recently begun having nerve pain from my neck through my shoulder, which they tell me is bone spurs in #5 & #6-now I’m wondering if the spurs are pinching nerves and causing the migraines and clusters?

  • Anna Williams moderator author
    1 week ago

    @estes1 That sounds terrifying! I am fortunate that it has not changed my overall vision, I just can’t open my eyes during an attack. Maybe a 2nd opinion from another neurologist might help? Depending on your financial situation, each of the drug companies has a foundation for those who cannot afford their medications set up. The Dr will need to do a bit of paperwork, but they have to do it for commercial patients, but often some on Medicaid are getting their prescriptions covered as well. It’s always worth a shot! Neurological conditions are so hard to figure out. Please don’t stop trying to get answers though, especially with your vision being affected in that way. When I am not having an attack my vision is normal (with the exception sometimes of photophobia). Sometimes it can be something unusual going on such as what is shared in this article https://migraine.com/living-migraine/giant-cell-arteritis/. Anytime there is a significant change with a headache, a neurologist should take it seriously and with eye sight being affected, figure out what could be happening. I hope you can get some answers very soon! (Anna-Migraine.com Team)

  • myhighroad
    1 week ago

    Hi Anna! I also get intense eye pain that causes massive left sided head pain as well as complex migraines, all since being diagnosed with MS. I started on Aimovig for the migraines and was relieved at how well it took care of the migraines. But in floundering around for something, ANYTHING, that would help with the eye pain so I could keep working I tried blue-light blocking glasses. I don’t need prescription for vision but thought it was worth a try. It instantly relieves the eye pain for me just as well as closing that eye does. I don’t know why, if it’s the actual blue light causing the issue? Or if it just help to have something to catch the glare before it hits my iris? Whatever the reason, if I don’t put them on as soon as I wake up pressure behind my eye just builds and builds until I eventually have pain in my head that will definitely remind me. I don’t know if you would find this worth knowing but thought I’d mention it JUST in case it’s of any use.

  • Anna Williams moderator author
    1 week ago

    @myhighroad Thank you for sharing! I do know MS can cause a lot of additional issues as well when it comes to headache attacks. I’m glad the blue light glasses help you. I do have photophobia with both of my headache attack types and the glasses do help that a bit in between attacks. Lights can trigger an attack and like in this article, it seems the longer I have had these attacks, the more sensitive I seem to be to light and sound in general. https://migraine.com/living-migraine/chronic-migraine-made-me-sensitive/. I hope the blue light glasses continue to help provide you more pain free days. (Anna – Migraine.com Team)

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