Cluster headaches

[ButLittle]

Pregnancy with DC1 went smoothly. But with DC2 I got cluster headaches. Visibly lopsided face by 4 months and near daily agonising pain by 6 months. Never had them before and went away with the birth.

I know pregnancies can make headache sufferers worse, but I don't get headaches normally. Everything I've found online suggests that the two are totally unrelated, although they clearly are in my case.

I'd like another DC and think I could put up with the pain for 9 months. But if it's the kind of thing that might go on past the birth or be in some way worse, I don't know that I'm prepared to take the risk. It's honestly the worse pain I've ever felt.

I guess I'm just wondering if anyone else has suffered from cluster headaches but only during pregnancy? And if so how did it turn out?

Hi,

Potentially an odd response, but did they do an MRI scan of your brain to rule out anything else after you'd given birth? I have a brain tumour and the lob sided face, headaches etc can be signs of that (or a mini stroke) and when I was pregnant they said to me that I might get more "symptoms" than usual due to the changing hormone levels. I didn't, but it's still worth looking into if they didn't do anything previously. I'd apparently had the tumour for 5+ years before anything came to light and even now (5 years on) I've only had a handful of seizures all before they operated to remove the majority of the tumour.

I'd be wary of correlating the two as you've had two pregnancies: one which went ok and one where you had these headaches. Therefore statistically speaking the next one could go either way which is why I think you need to ensure there's nothing more to it if you haven't already.

My friend also had migraines pre pregnancy which she said were a lot worse during her pregnancy, but you've said that wasn't the case for you.

Good luck.

@ButLittle I don’t know if this is at all helpful
to you but it’s the only experience I have. My mum suffers from cluster headaches, there is no other pain like it and my heart goes out to you. She started at puberty, didn’t have any during pregnancy and now has gone through give menopause don’t suffer anymore (touch wood). It seemed to be hormonal with her - the pregnancy hormones stopped them, so it’s possibly similar with you just the other way round. It’s worth asking about this. Also, you should be able to have an oxygen canister in your home, also about this too. It should help.

Sorry for the typos but hopefully you get what I was saying. Don’t suffer in silence with this type of pain make sure you get some pain relief.

Thanks both, it's actually reassuring to get responses and know it's not just me.

@brainstories568 Midwives wouldn't look into it when I raised it (and suggested paracetamol and an eyetest!). As far as I can tell they wouldn't be able to refer me for scans whilst pregnant anyway and I had no symptoms after so didn't think a GP would see me. Which means it's self diagnosed which I get isn't great but no idea how to get a diagnosis or how to push for further investigations at this point. Obviously if there's a chance it's a tumour I definitely would want it looked at first and I didn't know hormones would impact that - did they say it 'just' might make the symptoms worse or might it have made the the actual tumour worse? I think the symptoms wouldn't stop suddenly if it was a mini stroke, but might be wrong on that.

@Prettylittlelady I'm glad it's finally over for your mum. Seems positive for me and I will look into asking for oxygen if it comes back. Out of interest was she allowed to drive?

@ButLittle they can give you an MRI but without the contrast dye (as this is what they said they'd do with me when I was pregnant) which wouldn't really be much help when diagnosing a tumour, as far as I'm aware. I think it'd be worth getting your maternity notes from both pregnancies and speaking to either a midwife or GP and taking it from there. They might suggest a CT scan instead (as it's cheaper) which shows if there's anything "wrong" then a full MRI if there are signs. I had a seizure in the street on my way home from work, which was the first sign of my tumour. I didn't have headaches, which is apparently the first sign for most people. I ended up in a&e and they did a CT scan and told me I'd had a stroke. I hadn't but I think it looks quite similar initially. I don't know enough about mini strokes, sorry.

There's not enough evidence to say that pregnancy does/doesn't cause a change in a brain tumour as it'd be quite a niche study! I have epilepsy (as do most people who have brain tumours) which is very well managed, I haven't had any form of seizure since 2015 and they said the hormonal changes meant they couldn't rule out the epilepsy or the tumour getting worse either short term whilst I was pregnant, or long term if it were the tumour. For me it didn't, but anecdotally they knew of women where pregnancy made one or both worse.

I don't mean to scare you though, I just don't think you should rule it out as simply "pregnancy related" particularly given it only happened in one of your pregnancies.

Oh please don't think you're scaring me, I'd rather know, although also appreciate that It's annecdotal. So did the tumour cause the epilepsy?

DF had uncontrolled epilepsy (definitely no tumour though) and a sibling has migranes. So this is starting to sound a bit too coincidental.

I think once you can get appointments again I might ask for a birth debreif, almost definitely not who I need to speak to but it's probably the easiest 'in' iyswim and go from there.

@ButLittle I think starting out with a birth debrief is the best idea even though it's definitely not who you need to see longer term!!

Yeah, epilepsy is caused by the tumour as essentially the brain "wires" get confused by the mass (aka tumour) that isn't supposed to be there. I guess the main issue with brain tumours is that most people are very late to get diagnosed which is why it's so fatal (as it were) because it's mainly just a mix of "unconnected" things like headaches (apparently!) that doctors dismiss. I was "lucky" because I was in the street so ended up in a&e which kick started it.

If you do take this forward and want to talk, then I'm happy to be PMed.

Thankyou brainstories, it would be nice to talk if it goes anywhere (although hopefully not and all is fine). Might be a while - CV and all.

@ButLittle hii! Im currently going through the same thing with headaches!!!
Had an mri at 13 weeks in December of my brain was clear. But the last 2 months have been like a sharp pain and in the eye :( did anything help yours? Did they go after birth? Xx

Hi OP I have the exact same situation as you o c that o get agonising cluster headaches when I’m pregnant. I got through it with DS but I’m pregnant again and they’re back and worse than first time round. I’m 16 weeks. This time around it’s impossible to deal th the pain (which usually involves just lying down in a dark room until it goes) GPs dont know how to help and waiting for neurology referral. Did you figure out how to manage it? I have heard about oxygen therapy and occipital nerve blockers as reluctant to take sumatriptan but maybe I will have to this time around …. Thanks you.

Hi I just wanted to follow up on this old post in case it’s helpful to anyone that I too suffer with cluster headaches but only during pregnancy and I’ve had a diagnosis from a neurologist which I had to see privately because I couldn’t cope with the pain any longer of Trigeminal Autonomic Cephalalgia with cluster headache. I have had relief from the treatment he gave me and if anyone wants to chat for advice on my personal experience I would be happy to as I wouldn’t wish this experience on anyone