Cluster headaches or migraines?

[Getmeahobnobstat]

Sometimes starts with aura (pins and needles in hands and jaw/tongue; vision disturbance and waves of nausea).

Then sudden headache in and around right or left eye. Pain is stabbing. Excruciating. (Not throbbing or aching).

Happening daily. Will last a few weeks and then I won’t get again for a half a year or more.

Feel irritable, but not restless. Need to stay still due to pain and nausea. Cannot lie down though.

Yawns a lot before and during. Sensitive to light.

Headache lasts for around 3 hours and will wear off then. Might return later or next day.

Some of my symptoms lean towards cluster headaches such as the type of pain and frequency, but some of my symptoms lean towards migraine such as the need to stay still and the aura.

Im struggling to get a diagnosis that is accurate. It doesn’t help that when they pass, I forget what they are like.

Thanks in advance.

Sounds like a migraine if it is affecting one eye but you can get different types of migraines

I have cluster headaches and that's what it sounds like. Cluster headaches can have a prodrome that is a lot like an aura.

Thanks both. It’s worrying me now. I’m sure there’s no need to, but it’s helpful hearing other peoples experiences.

I didn’t realise you could get the aura type symptoms with cluster headaches.

Obviously everyone is different but DH has cluster headaches and you sound half half to be honest.

no aura, he is restless (I’ve seen him punch himself in the eye to try and stop it).

but the cycle sounds similar as does the stabbing pain.

he takes injections of sumoutripian (and I believe these work for migraine in some cases) so ask you dr for those.

I’ve been on sumatriptan for a while, but now it seems to trigger bounce back headaches and doesn’t help the pain like it used to.

The doctor thought they might be cluster headaches, but said I’d be banging my head against the wall if they were.

Im not. I’m very still. I can’t lie down or do anything. I just sit up straight and try and crunch my neck. I try not to move around. I do get the irritability though.

And when they are over, they never really feel over for days/weeks. It’s like my brain/eye feels tender and bruised. As if it’s been physically injured.

I had another last night. So this is day four and it’s unbearable.

Again, thanks for your help. I don’t fit neatly into the symptom box, so it’s helpful to hear about other peoples experiences.

Are you taking tablets though or injections? The tablets do zilch for my husband, but the injections do work - so if you’ve not tried them it may be worth asking.

I Think people would present in different ways (even DH has been different at different times - and yes has been known to be still rather than pacing - although that’s rarer) so don’t write it off.

I have both chronic migraine and chronic cluster headaches. sadly I know it’s possible to have two primary headache disorders for the price of one. this means I can get clusters that add in some migraine features and migraine that can throw out some cluster ones and increased pain. have a look at both the Migraine Trust and OUCH UKs websites for information on the variations of both. Keep a truly in-depth headache diary and push hard to be seen by a neurologist who runs a headache clinic. I recommend one known to OUCH as not all hospital migraine clinics have experience in CH or handling two for the price of one mixes.

I have Sumatriptain for CH but have to handle it with care. With just Ch you do not normally get rebound headaches. You can and will if you have migraine mixed with CH. I try to restrict to at most two doses a week to reduce that risk. I used ultra high flow oxygen instead as it does not aggravate the migraine side.

I tend to lie down with a very bad migraine, pace like crazy with just CH but sit still and twitch a lot with extreme irritability when they join up and strike together. I can also be sick with hellish aura and the pain goes through the roof when the Ch kicks in only to settle down to baseline migraine between. Not something I recommend or would wish on anyone.

If you might fall into both I cannot emphasise the need for you to be under a headache clinic for both support and medical help. Most GPS struggle with more complex migraines. add in Ch on top and they often miss what is lurking as it’s assumed to be just migraine….especially if your female.

I mix and match ice packs and heat packs at the base of my skull to try and get through with CH attacks. If it gets beyond endurance head to A&E with a headache diary, let them know you have suspected CH and ask for access to ultra high flow oxygen.

True, but without a confirmed diagnosis of CH it’s far harder to access the autoinjector version. (Kicks in fast but feels like a bee sting) They cost far more than the tablets and even more than the nasal sprays and even I have to repeatedly plead for prescriptions of them. The nasal spray kicks in quicker (15 mins) than tablets (40 mins or so) but it always reminds me of inhaling the liquid found in a sixth form chemical lab sink.

Thank you. I’ve had both, but I found the injections less convenient because my headaches go into remission for up to two years. I am weary about using them after such a long gap. I was also a bit of a baby about using them even though mine were just like an epipen.

At the time the tablets worked fine, so I decided to stick with them. I don’t know if I’ve overused or become tolerant. But they don’t seem to help. Perhaps I need to face the injections again. I’ll go back and ask. Thank you.

I recognise so much of what you have written. I almost feel relieved to see that what I’m being told is impossible, is possible. I’ve been made to feel like I read up on headaches and accidentally mix the symptoms when looking for ‘attention’ 🙄
When I have an attack it’s truly unbearable and it feels like they are getting worse. Maybe due to peri menopause?

I’ll go back. Thank you.

Keep a detailed migraine diary. I’ve been doing so for about four years. It’s really helped me identify changes and improvements in my migraines.

Thank you. I will start today and go over the last few days.

I've been diagnosed with cluster headaches.

I get woken up in the night with what feels like a stabbing pain under my eyelid.

My eye almost tries to spasm shut but when it shuts the stabbing pain is unbearable. My eyes both go really bloodshot and the one eye (always my right) waters and I have clear fluid pouring out of my right nostril.

My eye feels bruised for a few days afterwards.

I now take amatriptyline before bed and it's once a week rather than every night.

However the optician has also said my right eye has a dry patch and it looks like I have glaucoma (plus I needed reading glasses as well as my ones I have to see generally!) so I'm waiting to see an ophthalmologist in a few weeks.

The pressure in my eyes was fine but I'm interested to know if it's glaucoma causing it or cluster headaches. I'm not stopping the drugs until I know as it's awful.

Do you feel wiped out afterwards? I do and was diagnosed with migraines.
I was told to take 400mg of B2 every day - you could try this?
I would ask to see a specialist and make sure there isn’t anything else going on

Not wiped out, but like I’ve had a sore brain and eye. Like an injury recovery.

TBH that sounds very like the lingering shadows from a bad cluster attack.

A migraine diary on its own will not give enough detail to id if CH is in the mix. It took me four headache clinics and two neuro professors over 25 years to realise what I thought of as headaches were chronic migraines and my sudden shooting pain, as in felt like I had been shot in the eye, migraines were headaches. OUCH UK have a downloadable PDF Diary you could use to record possible CH alongside using a migraine diary. Migraine Buddy is rated as an app but ones not help to identify clusters.
ouchuk.org/sites/default/files/downloads/cluster_headache_diary_2016.pdf

Thank you for all the help and advice. I’m going to go back next week and I’ve started looking at all the info you’ve provided. It’s been so helpful. Thank you 🙏

Also keep in mind if you get referred to a neurologist they are not all migraine specialists. Some of them have little experience in dealing with migraine. It’s a complex neurological disorder that is very difficult to treat.

After I’ve had a migraine I can tell where I’ve had it - like it leaves an imprint. Sounds similar