Cluster headaches in teen

[Clusters29]

I've NC because all my posts together would be outing.

13yo DD was diagnosed with cluster headaches in December. The pain was so extreme we were in A&E three times getting IV pain meds (sadly I can't remember what it was). At the follow up she was told to take higher dose ibuprofen if it happened again.

It happened again last night, thankfully only two hours rather than three days. Ibuprofen and paracetamol didn't touch it. It's like watching someone give birth with a migraine and passing a gallstone at the same time.

I'm going to ring the doctor about painkillers, but am struggling to google what the best pain med is--most of the info is about prevention. I just want to know what options there are during an attack so I can be prepared for talking to the doctor.

DD is 5'6 and probably 8.5 stone, so essentially adult sized.

So if you have cluster headaches, what do you take for the pain? And does it work?

Bump

Currently on the second headache in the cluster and waiting for call back from doctor. I hate seeing her in so much agony.

Hi, it was a long road but the only thing that has worked for my friends DS has been oxygen.
It was very hard to sort out! They managed to see the only paediatric cluster headache specialist who is at (guys?) I believe in London.

I know it's horrible but videoing him when he has one may help. Not many people understand them.

Apologies, her! Not him. Sorry.

Thank you Humour. We got sumatriptan nasal spray from the after hours doctor but it hasn’t helped. I will definitely look into oxygen.

Dehydration has been linked to cluster headaches. I would be making sure she's taking in plenty of water. Your poor girl. How awful for her.

With the IV meds last time they gave her a litre of fluids too. We’ve been trying to get the water in her today but she just can’t when the pain is bad. I have migraines and thought they were bad enough, but this is a whole new level of hell. She did get a little chuckle when her baby brother took her a bowl of crisps to mend her cluster-graine. I’m just waiting for the night-time agony to begin again.

Poor DD, cluster headaches are hell.

Can I ask who diagnosed her? Im guessing it wasn’t a specialist because they recommended ibuprofen - OTC pain meds will usually not touch cluster headaches. The most effective acute treatments are oxygen (which is difficult to get due to COVID) or triptans. Subcutaneous sumatriptan is probably the most effective, so I would look into that if you are able.

If you haven’t already, I would push for a referral to see a paed headache doctor. You mention you have migraines, and you also mentioned that your Daughter’s headaches have previously lasted for days rather than hours. By definition, cluster headaches last less than 3 hours, so it sounds like there may be some overlap with migraine too. Either way, it warrants further investigation by a specialist. Good luck, and I hope she’s better soon.

Thank you Sithee. She was diagnosed by the emergency doctors over the course of the three visits and a follow up with a paediatrician that we know from other ongoing issues, poor sausage. I wasn’t convinced at first because of the length but this episode has been very textbook cluster headaches, so it it interesting to think of overlap with migraine. I can’t understand why the nasal triptan didn’t help her but will definitely be calling on Monday to try and get her sorted with more specialist care.

She has OCD too and from the questions they ask, I think “anxiety” is written in capitals at the top of her notes and that doesn’t necessarily help in getting taken seriously unless she’s actually rocking in pain in front of them. I do have a video as recommended above and will be using it.

By the way, does the oxygen treatment have to happen in a clinical setting?

@Clusters29

By the way, does the oxygen treatment have to happen in a clinical setting?

No but you will have a mighty battle on your hands trying to get it for home use. I think you need to join specific support groups to help guide you through. Its a tough one and needs a specialist on your side.

I hope your Daughter’s attack has subsided for now.

Oxygen can be used at home, but access to it can vary. Take a look at the Migraine Trust website - they have some information there about accessing oxygen.

Please push hard for a referral to a specialist. Cluster Headache is a rare condition, particularly so in children or women, so needs someone experienced in managing children with cluster headache to see her. I don’t know where you are located, but Great Ormond Street has a really great headache clinic.

In the meantime, I recommend keeping a headache diary if you are not found so already - date, time, duration and severity of attack, which side of the head, symptoms (headache, autonomic, and other eg nausea etc), treatments tried and their effectiveness. And yes, take videos too.

Good luck OP

Thanks everyone. We’re abroad at the moment but hoping to move back to London for the next school year.

So we ended up back in A&E in the early hours after one headache got to six hours, or maybe it was two back to back as I think she might have got a few minutes of sleep at one point.

I got the feeling the doctor had read her notes and then googled cluster headaches. He came in and said oxygen was supposed to be good for them, so she tried that and it was like magic! So then he came back and said “you need this at home.” He was totally on board (maybe because he was new to the idea and didn’t know he was supposed to gatekeep it?!) but we are having a bit of a struggle getting hold of it because nobody has ever heard of this use, and they seem baffled by it, especially given her age! So we don’t have the right info for their forms and they don’t have the training to know that it’s ok in this situation. I think we probably can make it happen but might have to pay for it. It definitely doesn’t hurt that the dr was a friend of a friend of DH (and they’ve met before), so I never felt we had to prove her pain in any way.

Fingers crossed anyway. But I’m very glad to know about the potential battles with getting home oxygen in the U.K. I will try to get as far as we can with a specialist here so that we have proof and paperwork for when we come, but I have no idea how long the wait will be. She’s been told a year for a referral to the children’s hospital for another condition, so that’s not ideal if we move before her appointment. On the other hand the move is this summer or wait another two years because she’s year 9. So many elements to mesh together!

I really appreciate everyone’s answers on this thread. She wants to go into medicine herself and I think she might just have decided her specialization.

Oh, and a diary is a good idea. I’ve been recording each episode but only for the purposes of talking to the doctor at the time so I will definitely formalize this.

Sounds like you have a lot to sort through OP, but I’m glad she managed to get some relief last night. Hopefully you manage to find something that works for her until you can get a specialist sorted.
Have a look on line for headache diaries - there are PDFs you can print and even headache apps. Some may not be suitable for cluster headache, so you may need to dig a little. The diary will be vital for when you do eventually see a specialist so they can see the pattern of her attacks. It will help to expedite things.

I’m not a medical doctor, but l’ve worked with cluster headache patients in a professional capacity over the years and understand how awful they are. All the best to you and your DD.

Thanks Sithee, I will definitely look up headache diaries and apps. You’re right, they are absolutely brutal!

Google OUCH UK, they will help, fantastic charity. Oxygen must be very high flow or pointless.

When you are back in London ask for a referral to Professor Goadsby at the National. He is the expert. Google him too.

Yes, Dr. Goadsby is the worlds leader on this if you can get to see him. Good luck

Brilliant, thank you both.

By the way, we did get oxygen to the house (still waiting to hear about cost!) and she used it twice before the end of the episode. I really think we got lucky with the doctor—I firmly believe he had just googled cluster headaches and then googled it again when we had to ring the hospital back because the oxygen man needed flow rate and other info. And luckily he found solid and recent information. Poor old DD has multiple issues (and my research is showing at least anecdotal overlap/comorbidity with these and CH) so it’s actually quite amazing to have one problem that now has a definite diagnosis AND effective treatment.

Hi my son almost 16 suffers with these after many various treatments he now takes a tablet called pizotifen, prescribed by pediatrician, it has been incredible he now has one to two month if that, before he was having 4 ish a week and was in agony, I suffer with migraines and take amitriptyline and sumatriptan which help so much, hope this helps.

I have a diagnosis of chronic migraine PLUS cluster headaches.
I DO recommend contacting OUCH UK. They will be able to signpost you to the very few paediatric hospital clinics capable of managing this horrible condition. Please be aware not all hospital headache clinics can as most specialise in complex forms of migraine only.

Its not just oxygen you need but Ultra High Flow with a demand valve. My home oxygen set up can deliver upto 160 lpm which is a much faster way of aborting an attack than standard high flow. Check you have a none rebreather mask if your only using 15 lpm. A none rebreather and low flow set ups are not effective and not recommended as treatment by NICE or BASH guidelines.

CH’s are NOT made worse by dehydration - that is migraine. They are a cirdaric form of headache disorder often happening at the same time each day. Attacks often wake you. Current research thinks it is tied to the hypothalamus deep in the brain. Hence the use of ultra high flow oxygen over normal high flow as an abortive treatment.

Sumatriptan is the only triptain that makes a significant difference as an abortive drug. Imigrans Nasal spray is, to the best of my knowledge, the only drug for under 16’s that is safe to use as it is the only one available at an age appropriate dose for over 12’s. Adults use a mix of nasal sprays [its like inhaling a 6th form chemical sink!] or auto-injector [sub-cute and feels like a bee sting]. Nasal sprays tend to be given out first as they are cheaper per dose. I have both sprays as they give longer lasting cover for subsequent attacks during the day. I save the injections for when its really, really bad to avoid A&E. A good hospital clinic will recommend your drug needs to a GP so you have what you need at home rather than having to head to A&E.

Many will also have Horners as part of their symptoms. In my case it makes me look like I am having a stroke. I wear and carry a medic alert and OUCH UK card after well meaning people have assumed its a stroke and called an ambulance. The pain is so great you really are beyond words and the power of speech.

Dr Goadsby may be the known lead but the waiting list is for adults is way too long. He is no longer the only expert in this field and is not the pead’ lead - ask OUCH UK for the names as I assure you other Drs are now available and he is not the only Prof in the field. I saw another Prof in another hospital trust who managed to diagnose pretty fast and who worked to sort out possible preventative treatments that suited me and sees me every six months or by self referral if anything changes or gets worse. My GP will not do so as the hospital rated by mix of chronic migraine and cluster headaches as complex and hard to treat. It can take more than months to put together a treatment plan as everyone responds to the few drugs available in different ways.

Keep as full a headache diary as you possibly can. You need to record as much detail as possible as there are other similar rare headaches that present in a similar way to CH [like SUNCHT] but are ,managed with a very different set of drugs. note time headaches start and end - level of pain, location of pain, any other symptoms during an attack, anything that helps ease, what your son needs to do ie sit still, pace or rock. List as much as you can as this will help the hospital headache clinic to help him by giving a pattern to his headaches that can give them clues as to what drugs and treatment options might be the best ones to try for him.

Hope that helps and yes- you are welcome to contact me with any questions. This is a horrible condition nicknamed suicide headache for a good reason. Its a nasty one for an adult to have let alone a kid. Mot sufferers experience their first headaches from 16 onwards. My first one was an unexpected 18 bday surprise! They have continued ever since.

BirdyBee your poor son, four a day sounds just horrific. Glad the meds are helping him.

triballeader I have been reading about these different masks. This weekend we just covered up the holes but it's on the (very long!) to-do list. Thanks so much for your huge and informative post. I'm going to get my DD a medicalert bracelet too. I'm so sorry you have migraines and cluster headaches. Migraines are bad enough, mine are utterly debilitating for about 48 hours (not all in pain), but CH are truly evil.