46th day of continuous migraine?

[Xiaoxiong]

Posting here in case anyone has ever heard of something like this, because even the paediatric consultant neurologists told us they have not seen it before.

DS14, never had a headache or migraine before and in good health (though with some mild hayfever and asthma in the past, mostly grown out of this). No one in the immediate family gets migraines either. No issues last term or over the Christmas holidays, went back to school ok for 4 days and then woke up at 3am on the 9th of January with what he described as the worst headache of his life and dry heaving. No auras or visual disturbances.

This has now continued for 46 nights, at 3am every night like an alarm clock and it just hasn't stopped. He has had only three nights "off", which were nights where he didn't sleep at all and kept himself awake as he was desperate to avoid the 3am headache. The last three nights he is now vomiting his dinner up as well. Increasingly he has pain while falling asleep. He has a headache and nausea all day plus discomfort reading or with light, but the big spike is every night around 3am.

He has had 2 MRIs which found a pineal gland cyst and a Rathke's cleft cyst near his pituitary, but the consultants seem to have concluded that these are incidental and not causing the issues. He's seen about 5 consultant paediatricians, 2 consultant neurologists (including privately), and they are all baffled. They keep asking about stress and lifestyle but he really isn't stressed generally (though he certainly is now, along with the rest of us) and has a generally healthy lifestyle with exercise, eats well, etc. Also this came on like a bolt from the blue, rather than ramping up slowly.

The only test he's had that's shown anything significant is a positive test for Epstein Barr virus (both the antibodies showing an old infection, plus the ones for an active infection so I guess that means a secondary/re-infection). That was many weeks ago now though. My hope was that this is all a weird manifestation of the virus and it will improve over time, but as the weeks wear on and he is getting slowly worse not better, that hope is dwindling.

He's had batteries of blood tests, all within normal ranges, neurological exams, ophthalmologist exam.

No painkillers or preventers have had any effect - ibuprofen, paracetamol, both together, ibuprofen lysine, sumatriptan, and we have done a week and a half on propranolol but that hasn't had any effect yet either.

He hasn't been able to go to school since before Christmas as every time he tries he has to run out of class to be sick or dry heave, or he is just in a daze. We are absolutely at our wits end - our next appointment with the consultant is on Friday but I fear their working diagnosis of "atypical acute chronic headache/migraine" is so vague - all the treatments take weeks and weeks to determine if there is any effect before we can try the next one. We have full private health insurance but as I am now discovering, it doesn't always help when the consultants both NHS and private have no idea what to do except try migraine prevention (while admitting they don't know if it's a migraine at all, or if it will work). I've asked for referrals to migraine clinics but the paediatric consultants want us to try front-line migraine prevention first.

Has anyone ever heard of something like this before? Any ideas gratefully received.

I will ask DS if he feels the pain matches the cluster headache description. One of our big issues with any of these headache or migraine types is that his headaches never switch off - he has a constant headache, but then on top of that he has huge spikes at 3am (every night) and sometimes other times but less regular or predictable.

I wish I had some of Granny Aching’s sheep liniment. That would probably sort all of this out!!

@Xiaoxiong how low was cortisol? We were told DDs was normal, but they were lower than they should be at 9am. NICE guidelines say anything under 300 should be investigated further

www.nice.org.uk/guidance/ng243/chapter/Recommendations#initial-identification-and-referral

Is there anything you can see on a CT scan but not MRI?

Also is there any Chiari malformation?

I was going to suggest National Migraine Centre but I see you're on it already. They were great when I saw them, really knowledgeable. I wonder whether the cysts have been dismissed too readily but I am not a doctor.

It might be worth trying riboflavin (400mg daily for adult not sure about kids) as it's fairly benign (although turns your pee bright yellow) but it can take weeks to work if it is going to work.

Also possibly a Cefaly device might give some relief - a bit expensive but you used to be able to get most of your money back if it didn't work after 30 days trial I think - it didn't work for me and they refunded me promptly without quibbling. I think kids above 8 can use it.

@handmademitlovehis cortisol was 235 so well below 300 - that is very interesting about the Nice guidelines, I will bring that up!!

@LapinR0sethey wouldn’t give him a CT scan because of the radiation risk. Good question though - another thing to ask.

There was no mention of Chiari malformation on either MRI so I’m assuming they didn’t see anything.

@faialthat is my worry - that they have rushed to migraine diagnosis and missing something going on with the cysts, or with the Epstein Barr, or something else like Lyme disease.

he’s taking a bassets adult multivitamin (as he’s 14 and weighs 64kg they told us to go for that one). It contains 1.4mg of riboflavin. Maybe that’s not high enough to make a difference?

But it also seems migraine-y and I know cysts are so common, if you scan most people you’ll find one. So migraine is also not a nonsensical conclusion. I just feel fobbed off and patronised right now and cross that they told me not to Google. I’ve got a kid vomiting and in pain who hasn’t been to school in weeks and psychological causes seem really unlikely.

A BMJ Paediatrics study used 200-400mg of riboflavin, so it won't be enough. But the National Migraine Clinic will give you a full list of recommendations.

As an adult, I suffer chronic migraine and have been through a lot of treatments. I now take 400mg riboflavin, 650mg magnesium glycinate, and CoQ10. I've been through Botox, Ajovy and rimegipant with no benefit, but I've just started taking atogepant on the 18th Feb. I had a bad migraine that I woke up with on the 18th, but haven't yet had a migraine since, which is remarkable because I get at least 15 migraine days plus headaches normally each month. It does make me feel sick though.

My soon has a diagnosis of New Daily Persistent Headache which is a type of migraine. Which is really more of a description rather than a diagnosis but it is what it is.

Some visual disturbance but not vomiting, his diagnosis was delayed as the eye tests showed up a problem (which needed surgery and nothing to do with the headaches).

Unfortunately, non of the traditional medicines touched the sides of the headache and he missed 2.5 years of school (he was in L6 when they started) and currently out of education and will restart in September. He is now on anti CGTP injections, which has finally made a difference and he has had some headache free days.

Part of the reason it is so slow is you have to give all the regular medicines time to work, so titrate the dose up, take for 3 months and then titrate down again. Rinse and repeat.

Migraine treatment can be very slow, I don’t mean to sound depressing and I hope your son makes quicker progress than mine did, but I also wanted to say that even though it took a long time and his education has had to take a swerve, he has found a treatment that works for him and everything is looking up.

Another night of big nosebleed, and now I am sitting by his bedside as he dry heaves and voms up water for more than 30 mins now. He took an anti-nausea tablet earlier which clearly hasn’t worked.

could this really be just migraines!? It just feels so, so wrong, the whole thing feels wrong. Like we are missing something big, I don’t know what, people keep telling me that migraines are weird and do strange things but this is beyond anything I ever imagined migraines could be.

it doesn’t help that DS2, whom we have been trying to shield from the worst of it, is intensely jealous of all the attention DS1 is getting and not going to school, and is saying it’s all made up and ohh so unfair. He made me cry in the car today as he was so unreasonable. I know he’s only a kid and acting out but god, what a time to pick. I am just at the end of my tether.

I would be concerned also, OP.

I have suffered migraines my whole life, as has my daughter and this is entirely different. Im aware migraines can present in odd ways but what your son is dealing with is extreme.

Have you heard of Martha's Rule? It may be worth mentioning this at your next appointment.

this sounds so worrying for you!

headache and nose bleed- could be worth measuring his blood pressure at 3am.

could they do a scan specifically looking at th blood vessels of the brain- which would be different to a normal mri

My friend ended up temporarily paralysed due to Epstein Barr. His started with a bad headache for a while. He too had long term symptoms such as instability when walking, he struggled to reach out and pick stuff up etc which sounds similar to your ds. Luckily he is fully recovered now. I don’t know where you are located but when this happened (and it was years ago now) it took a long time to be diagnosed properly. Obviously he was in hospital due to the paralysis so they continued tests. It was actually Drs from America who diagnosed him and he had to be transferred and spend time in another cities hospital where specialists were located. I don’t think most drs understand this condition well enough. Not trying to scare you more but just saying the symptoms can be varied and it can go on for months. Don’t let them fob you off just because they don’t know enough about it.

Another thing to consider, even if it seems ridiculous, is his pillows and sleeping position. I was using crap pillows for ages because I didn’t think anything of it, but I ended up getting nightly migraines that would wake me up. I had neck aches and dizziness during the day too. Changed my pillows and mattress and tried to sleep in a better position and they have stopped now.

Also, even if eyes are normal some people suffer badly with screens. Even if he’s not on it all day. A friend of mine has regular eye tests but still suffers badly with headaches and eye strain when using her phone and tablet and even with tv. Blue light glasses did help a bit but the only cure has been a massive reduction in screen time and only using it as necessary.

Another consideration is hormones? Not sure if these have been properly tested but hormonal migraines are a thing and hormonal changes or hormonal conditions can cause all sorts of symptoms.

And finally, has he been tested for celiac disease. My dd has celiac and despite having some symptoms since she was born, these were explained by other conditions or thought to be psychological. I knew that was not the case but struggled to get anyone to listen. It all came to ahead when out of the blue her symptoms escalated and new symptoms developed. For about 6 months her hair suddenly started falling out, she was nauseous and sick daily, had vertigo, felt depressed and irritable, was falling over lots, lips were bleeding, skin peeling and dry, nose bleeds, lost lots of weight and couldn’t gain weight, had cold and flu like symptoms, skin pale and huge bags, stomach pain and migraines. She was generally very poorly every day. It took ages to get a diagnosis because she has the type that doesn’t show up on the normal blood test. If she accidentally eats gluten now she gets headaches, dizziness and sickness. I was surprised at how varied the symptoms could be. Most drs dismissed it because they said symptoms are only stomach ache and diarrhoea. It’s the immune system going haywire so symptoms can be crazy. Once she was gluten free she was better pretty quickly. The symptoms escalated as she entered her teens so not sure if this had anything to do with it.

sorry you are going through this. I understand how worrying this can be. We rely on medical professionals and don’t have much choice but it’s awful when we know something is wrong and we feel stuck unable to do anything about it because the people we rely on are not helping.

Ah yes @sellthebigissueMartha's rule is a good suggestion, I’d forgotten about that.

Sorry my friend had Guillain-Barré syndrome, which I believe can be caused by Epstein Barr. I got mixed up. The other info still stands though so worth considering

@sellthebigissue thank you - I'm so sorry you and your DD have suffered these awful things. I have just looked up Martha's Rule - thank you for the suggestion but it only applies to inpatients apparently. We are fortunate enough to have comprehensive private health insurance so we are seeing a private neurologist as well as a call with the National Migraine Centre in 2 weeks but I don't know if a neurologist is the right person. If we go down the "migraine" route does that mean we are boxing off something else like the cysts or an illness causing these things. Would a neurologist be considering illnesses as well?

Our GP is very sympathetic and wants to help, but this is way outside his experience. He is happy to write any number of private referrals and prescribe things I ask to try, like triptans or anti-emetics when the hospital has refused, but he has been frank in saying that he doesn't know what is going on or how to advise us.

@geekygardener Interesting you mention pillows - one of the first things we did was tilt up the head of his mattress when we originally thought this could be sinus related. He's still sleeping that way most nights as he says it's slightly more comfortable, but we have moved his bedroom around to different rooms and no change when is isn't sleeping propped up. But the nosebleeds, vomiting etc feel like they're more than something positional. Do you think a physiotherapist would be helpful?

He's had all hormones tested when they found the cyst on his pituitary, nothing concerning in terms of levels though it's possible that hormones could have triggered migraines (but my worry is, this doesn't fit with migraines either...or does it...)

He's also had a full ophthalmologist exam in hospital, found nothing and he has 20/20 vision (amazing to me and DH who both wear specs).

Coeliac is an interesting one as my cousin had a very similar experience to your DD - having eaten gluten all her life with no particular issues she developed all those symptoms and more in her early 30s, and is now ok as long as she is utterly vigilant about gluten (she brings her own sealed food and cutlery if she eats anywhere but home, for instance). I asked about it at the hospital on Tuesday and not only was I told that it couldn't be that as DS has no GI symptoms or stomach ache and hasn't lost any weight, I was also told not to "start going down the road of cutting loads of things out of his diet". (And to be honest I don't have the bandwidth to do that right now anyway which I know is lazy but I am not getting much sleep.)

I feel like they're putting me in the "anxious tiger mum who googles too much" box who has pressured her son so much that it caused these headaches. Literally nothing could be further from the truth!

Check out “rebound headache”

@Kepler22B thank you for sharing - I have read up about the anti-CGRP medications that are becoming available and they sound very effective for some people. I'm so pleased your DS has found something that has brought relief and is back on track, but those years must have been agony. It's just accessing them or getting the right balance of medications and supplements as well,@Lougle I really hope the good effects of the new gepant last forever and you get relief from these awful things.

I do quail at the time it could all take. The two weeks until the private neurologist appointment and National Migraine Centre feels like an eternity, but we are on night #50 now with no break or relief.

So one one hand, it's forever, on the other hand, we've come this far.

The vomiting and nosebleeds are very hard as they are every night since Friday now and yesterday was not only at night but also at bedtime.

If he had any relief at all, any break in the last 50 days, or any painkillers worked to give him a break, I would be more confident it was migraine- or maybe not. I don't know.

Pizotofen works better for both me and Dd, I take it in combination with topamax and candesartan however Botox was a game changer for Dd. It worked for me for 9 months then stopped but it broke the cycle for her.

Withfamily histor definitely blood test for celiac. Rule it out.
Dd with migraine has coeliac but diagnosed before migraines onset at 12.

It's both worrying and exhausting because you feel you have to do loads of research when doctors don't appear to know what's wrong.

What do the doctors say about the nosebleeds? When he has a nosebleed does it relieve the head pain in any way even for a few minutes? Has his blood pressure been checked before and during the nosebleed? (I realise before is a bit difficult if you don't know when he's going to have one).

Have they tried combining a triptan with an NSAID such as naproxen (and also an anti emetic like metaclopramide)? And probably omeprazole to protect the stomach from the naproxen. Have they tried different triptans because response to each triptan is very individual? It was just your comment about having to wait weeks and weeks between treatments before trying a new one that made me ask but maybe you are talking about preventers rather than relievers.

Have they tried steroids - prednisolone I think is one that can be used to break a long spell of migraine but they won't give it if blood pressure is high?

I would have thought they would have already attempted to rule out other illness, especially with him getting and feeling progressively worse. I really feel for you both because they are hideous. Ive just never heard of them lasting such a long time and in the pattern which you describe.

They sound more thunderclap headaches but again, for such a long time seems a bit odd! Hopefully you get your answers soon and if you ever are an inpatient within the NHS, please try Martha's rule. Its worth the shot xx

I also recommend pizotifen x