Severe migraine pain- in hospital

[HomeTutor]

Sat in hospital with my poor daughter (19) who is having the second horrific migraine in 48 hours.
Shes currently hooked up to IV painkillers and a saline drip because of the amount of vomiting.

Over the years we've tried anti sickness drugs, naproxen, codeine, rizatriptan, nasal sprays, daith piercing, cut out 100% of chocolate, artifical sweetness and scented candles.

She takes an antihistamine daily for allergies and is on the progesterone mini pill as we thought it might be hormone related (she also had bloody awful periods with sickness and severe pain).

Starting propranolol tomorrow.

What else can we do? I cannot stand seeing my kid in so much pain she wants to tap out of life. Her job is at risk as she is unreliable when the migraines hit she has about 20 mins warning before the vomiting starts.

Will try anything. I wish it was me 😔

Hi all,

Thanks for checking up. Pleased to report she hasnt had a single migraine since these ones in May.

But, she's just tried to get her repeat prescription for the propranolol and the pharmacy say that she needs a review with the Dr first. So now she has 3 days tablets left, and its bloody dangerous to just stop taking beta blockers 🙄 Of course, drs saying they have no appointments.

Also, she has mild asthma (3 x pneumonia as a child, resulting in scarred lungs and a stay in ICU), and Ive since read that propranolol and asthma is an absolute no-no. Wtf?!

Urgh.

Can you get a private GP's appointment for a prescription? You will have to pay for it but future ones should be on the NHS once you have seen your NHS GP.

I would check that the private GP will issue a prescription before you book the appointment.

@HomeTutorive never heard of Nerivio so just googled it. Can I ask how has it helped your DD. I have chronic daily migraine and that looks so expensive

I’m not one for taking supplements but I’ve found that taking the clinically evidenced ones as a preventative has helped a huge amount. It’s 400mg/day of riboflavin (vitamin b2), 400-600mg/day magnesium, and they also say 300mg/day coenzyme q10 but I can’t take that last as I’m allergic to it:

migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/

HI. So my son was having absolutely debilitating migraine most days, we’ve tried all the usual over the counter and prescribed medicines, including propanolol - did nothing, pitozofen - no help, melatonin to try and sleep - didn’t help, amitryptyline - no help, triptans - not massively successful, supplements - not sure… currently he’s also on topiramate - not fully effective either. He 17 so too young for the newer style injections etc. He was having weeks off college and this had impacted on his A levels and his social life and was making him feel very down as he was constantly in such awful pain and having the dizziness associated with vestibular migraine.

So in terms of the Nerivio he feels it definitely feels it helps, it reduces the intensity/severity of a migraine - he says it feels more like a headache than a migraine which is more manageable. The length of days of the migraine attack has lessoned from weeks to days. When he uses it correctly ( - i.e. daily x 2 during an attack and then every other day when migraine free as a preventative) it does seem to prevent or reduce migraine activity, and he's had a few runs of headache free weeks which is literally unheard of. I just have to add that he is a teenager who is not to most compliant so occasionally he may forget to do it (despite reminders), but it is easy for him to use with his phone, he take take it college and put it on as soon as a migraine starts, and it not addictive, not invasive and has no side effects. I spoke to a different neurologist recently about Nerivio (my daughter also has vestibular migraine but is much younger and so I was asking his opinion on it) and he said Nerivio in his opinion is absolutely wonderful and much more effective than a lot of medications and desperately wishes it was available on the NHS.

I agree the cost of approx £260 a month is a lot but for us we were desperate and just seeing him suffer on every level made it a sacrifice I was prepared (and fortunately in a position) to make.

Hope that helps.

I can second the recommendation for a cranial osteopath, I used to get horrendous migraines in my teens and early twenties. I tried all sorts of things, had scans, medication and nothing worked.

Was suggested to visit a cranial osteopath and she sorted it out. IIRC the appointments were fortnightly for the first few weeks and then moved to monthly and then to quarterly. It got them under control and I although I still get bad headaches on occasion, they are infrequent and nowhere near as bad as a migraine because they can be managed with paracetamol and ibruprofen together.

I think I was 24 when I first went to
see the cranial osteopath, I haven’t needed to see her for the past 10years and I’m now 41 and am still migraine free.
Cranial osteopathy is one of those funny things that doesn’t feel like it’s doing much but somehow it really does help.

Hope your poor daughter feels better soon.

@hellie75 it really does thank you one last question how much are the refills?

You have to replace the device each time, so each device comes with 18 treatments (I think) on it, at the end of that you just dispose of it and start a new one. It’s a shame there aren’t any clinical trials you could join - may be worth looking into, I know my son wouldn't qualify due to his age. There are 4 different makes of these nerve stimulation devices - we’ve only tried Nerivio (they are all listed on the migraine trust website) so it may be worth contacting all of them and asking about if they offer trials? Worth a go - it’s so hard when you are desperate for something to help and things that can help are prohibitively expensive. If you need further info please feel free to get in touch. Best wishes.

Hey OP how is your daughter now and what happened about the Propranolol situation with both running out but also the asthma concern? I hope your daughter is ok?

Cyclizine in between gum and mouth co codamol 30/500 x 2 ibruprofen 600 mg forehead roll on all in a pitch black room. I take the tablets with the tiniest amount of water as even one small glass makes me vomit. I’m not sure the daith piercing does much but too scared to take it out.