Daughter suffering from migraines and breathlessness

[mrrossix]

Hi all, just looking for some help and advice please. My 15 year old daughter has suffered with migraines for at least 6 years now. Every time she's been to the doctors (different ones over the years) it's been the same "she will grow out of it" response. Her mum has insisted on blood tests and she's had plenty over the years and all been within normal parameters.

A few years back she also had some shortness of breath. It didn't seem to come on with any consistency; i.e. it wasn't after exertion or eating something. Similar responses from the doctors; it'll pass, and told it wasn't asthma. It did get better for a while and about a year later it was worse again and doctors said the same and that it definitely wasn't asthma.

This weekend, my daughter was absolutely fine on Saturday, full of energy and happy, despite having a ton of GSCE revision - she just put on her headphones and cracked on with it. Sunday, I couldn't get her out of bed - she had a bad migraine. Eventually she came down (after taking a Migralieve, the only thing that seems to help) - very slowly - and we managed one board game but she was struggling, and we decided to "flop" on the sofa with TV. She was able to watch for a couple of hours but then the light was too much for her and she had to put a blanket over her head.

When it was time to take her back to her mums she could hardly get up. I helped her but after a few steps she pretty much collapsed and burst into tears; seems she was having the breathlessness this again! She couldn't breathe. It passed after a few mins but it's quite scary when it happens like that.

Previously, people have suggested the breathlessness is related to anxiety. She does get a little anxious sometimes, but she wasn't in this case and it has happened before when we've just been happily walking somewhere (not with exertion).

She generally struggles with noise & light too - that can trigger a migraine.

Is there anything I can do to help? Is this really just "something that will pass" or could there be something else?

I queried with her mum again and whether it was worth getting some private blood tests and she suggested trying a grain free diet again. She's tried various grain / gluten / dairy free diets over the years and they never make a difference - as it is, I avoid gluten anyway and we did have a grain free (except oats) weekend anyway, and a very small amount of dairy (milk in one cup of tea and a little cheese in some food) - I don't think it's diet related.

Any suggestions or advice would be much welcomed please. Thanks!!

First thing would be to get better migraine treatment.

My DD is 15 and has been having migraines since she was 10, we have only just stumbled upon a GP who knew what to prescribe.
M she now has a choice of longer lasting triptans, one is a quick acting nasal spray and she also has a long lasting tablet to try next time. Plus a shock and awe procedure as soon as it starts whichigh dose of ibuprofen

Which is a high dose of ibuprofen, paracetamol and an anti sickness drug alongside the triptans.

It has helped shorten the attacks and now we are trying to find the triggers.

Make a migraine diary...time of month, foods, tiredness or late night, over hungry, mood beforehand.
Take the diary to the GP and insist on better treatment
Migraleve tends to stop working I find I have to take a sumatriptain at first sign plus an anti emetic buccal tablet and paracetamol with caffeine alongside ibuprofen. If I don't get meds in time I use tens machine and ice pack on forehead feet in warm water...all help. Some people sware a dithe piercing helps.
My migraines are hormonal and stress related (when stress comes off though) so stress relieving strategies like neck massage help prevent.

if you look at the patient information leaflet for Migraleve

https://www.medicines.org.uk/emc/files/pil.1062.pdf

You will see breathing difficulties are a side effect, incidence unknown.

This occurred to me, because I get breathing difficulties with non-steroidal anti-inflammatory drugs, such as ibuprofen and naproxen. These drugs cause breathing problems for people with asthma. I don’t have asthma, but I feel like I can’t breathe after taking them.

Maybe DD is suffering breathing difficulties, as an uncommon side effect of Migraleve?

I looked up the side effects of codeine, one of the constituents of Migraleve. Apparently breathing difficulties are a side effect. See this:

https://www.nhs.uk/medicines/codeine/side-effects-of-codeine/

If it were me, I’d see the doctor and discuss the side effects of codeine in case it’s a serious reaction, before taking any more?

Hi I have been through this with my 15 year old dd for about 5 years. We have been lucky to see a paediatrics consultant this year who after trial and error with the GP, has started propranolol and her migraines have reduced dramatically. Having said that, she had an awful one yesterday I think due to GCSE stress too.

Before this, I contacted the national migraine center and had a zoom consultation with them. It is a voluntary contribution (which enables them to continue) the consultation was brilliant, my dd now has a rescue plan and we were told what to ask the GP for, this really helped a proper diagnosis and review, although they say they do not advice migraleve at all for migraines, and since my dd stopped taking this for migraine relief she has actually recovered quicker.

My dd now takes 40mg propranolol twice a day, she has a triptan if needed but doesn't get on well with these, she also takes a prescribed anti sickness and paracetamol. My dd has now been able to identify her triggers and other things that help relieve migraines.
Also speak to the school as I am sure like me you are concerned about the risk of migraine during GCSE exams.

Thanks all! I don't believe my daughter was taking migraleve when she previously had breathing issues; that's something she's more recently started taking. She's also avoided ibuprofen for a while but there's a possible link there... will try and clarify that detail / timings and will talk to her mum about the doctor / migraine centre / school etc.

Thanks again, much appreciated :)

I'd think again about if it could be anxiety/stress, studying and shuffling houses could be low level stressful for a teenager even if they/you don't realise. Could try a physio that specialises in headaches to see if there's any muscle tension?

GPs are a bit rubbish with migraine, I speak as a sufferer. I use sumatriptan, push for better medication, either a preventer or something that actually works, pain relief rarely works.

This might sound odd but has she been tested for Coeliac disease? Migraines can be a feature and very often sufferers are anaemic causing fatigue and breathlessness. You don’t always get bowel symptoms (it’s a whole body disorder).

I'm in my 40's and had migraines since I was very young, no real medical explanation or care... but then last year I found out I had an atrial septal defect (heart defect) and that about a third of people with this get migraines. I also had breathlessness from poor circulation. I was diagnosed after a GP heard a heart murmur & finally put two and two together & sent me to a cardiologist. It's all fixed now and my migraines have 95% gone. I hope that whatever is causing this for your daughter that she gets some relief.

Thanks again all! It could be anxiety related but at the same time, this has gone on for years and years - although admittedly on and off. She's been to physios about shoulder and back tension (unrelated issue) but not thought about a physio specialising in headaches, that's worse a try... Migraleve does seem to work for her, and she doesn't take it often, and I don't think the breathlessness is related to that from previous timings, but may be worth checking sumatriptan or another alternative anyway. She's been on gluten free diets loads of time before and that's not made a difference so don't think it's Coeliac disease. Not sure how we'd check for heart murmurs other than, what, simply asking a doctor to check her heart/pulse? Wondering if it's worth going for a private appointment somewhere - especially as it's hard for me to take her to a NHS doctor in the week in time with work and the distance she lives away - and getting a dedicated "analysis" to try & get to the bottom of this?!

As I understand it, there aren’t enough consultant neurologists in the NHS, so going privately would be much quicker!

This is why I recommend the national migraine center. They organise the zoom or phone call for when it is convenient. They run through all of the symptoms and will flag any concerns they feel are not related to migraines. I genuinely believe this helped us get an NHS appointment so quickly (GP would not initially refer for the preceding 4 years of symptoms). The GP was happy to prescribe what the migraine center Dr suggested (they send a copy to your GP) whilst we waited for the NHS appointment.
My dd ended up having an MRI as some of her symptoms could have been something else.

Are you able to identify any triggers at all? Can you get her to keep a diary and include all symptoms, anxiety/headache/palpitations, including how she slept, what she has eaten. Migraines can be hormonal so worth her keeping an eye on that.

My dd is convinced dairy makes her migraines worse so avoids this, she knows lack of sleep and stress also trigger.
Good luck it can be debilitating but, she needs a diagnosis.

Thanks again - will definitely try the migraine centre and talk to her about keeping a diary!