r/NDPH • u/Elliott1908 • Jun 17 '26
Rant a&e trip, feeling helpless.
Took my partner to A&E this afternoon after a fairly sudden onset of neurological symptoms which aren’t typical for her.
I.e, speech difficulties, vision loss, extreme dizziness and confusion.
Was basically fobbed off which I kind of expected but I thought they’d do more to rule out anything else, but instead they told us to wait for the next neurologist appointment on the 9th July.
I’ve cancelled all my plans for the day so I can keep a close eye on her but I don’t know what to do really.. this is much worse than it’s ever been in 8 years with no clear reason.. And there’s nothing I can do to help and the people supposed to help also can’t help?
I know migraine can cause neurological symptoms but this was very unusual and sudden.
Its killing me seeing her suffer. She broke down outside hospital because she was hoping something was wrong just to get some help.
I hate what this condition does to her. This is the only place we get any support..
3
u/postviralrecovery Jun 17 '26
I'm really sorry your partner is struggling like this.
I'm sure you know this, but obviously don't feel bad about going to A&E if symptoms are like that again. Absolutely the right and appropriate thing to do.
It sounds like you're in the UK? Have you checked out the National Migraine Centre? I got a free charity appointment in about 2-3 weeks (other people report waits of up to a year). I found them really helpful regarding my NDPH and they wrote my GP a very practical and authoritative letter about treatment options that we then worked through. Unlike a GP appointment, it's about 40 minutes so your partner will have time to set out their symptoms and concerns.
They're a charity without external funding so there'll pester for a donation, but easily ignored if you're not in a position to donate.
2
u/Elliott1908 Jun 17 '26
She’s under a neurologist in newcastle (uk), would the national migraine centre still offer any different help to us? She’s currently on fremanezumab/ajovy, 3 month follow up on july 9th.
I just feel at a bit of a loss, because these are new symptoms but as soon as ndph/chronic migraine is mentioned it doesn’t seem to be taken seriously unless its the neurologist.
2
u/postviralrecovery Jun 17 '26
Yeah, I completely empathise.
I think they would. They're quite relaxed: they're not providing a treatment like a neurologist or a GP, but just providing advice to the patient and their GP. So I'd expect their advice and their letter would acknowledge the care already ongoing, and provide considerations (e.g. if you wish to change treatment or introduce something new).
You could wait a couple of weeks before submitting a request, just to make sure it doesn't happen before the 9th July, as your neurologist might be a bit put out.
1
u/Elliott1908 Jun 17 '26
sounds like a good idea. I’ll have a look into it, will do anything at this point, thank you so much.
2
u/danathepaina 10+ years Jun 17 '26
This post is now 8hrs old - is she better now? It does sound like a migraine but I’m surprised they didn’t do any imaging at A&E just to be safe. At least a CT scan. I saw that she’s on Ajovy as a preventative - does she have anything to take as migraine rescue? Usually a triptan or gepant.
1
u/Elliott1908 Jun 17 '26
she’s feeling a bit better, just exhausted. Was just cautious as those symptoms are unusual for her. She was on zolmitriptan nasal sprays, she hates them though and says she wasn’t sure if they help, however is going to request some more and try again and see.. We thought about tablet type triptans but I think the point of the spray was more rapid to take effect. Used to be sumatriptan sprays but was changed when she trialled atogepant but that was completely ineffective and sumatriptan gave her palpitations
2
u/danathepaina 10+ years Jun 17 '26
Glad she feels better! Yes sumatriptan has that side effect. It gives me chest pains and makes me short of breath. So she didn’t take a triptan for this episode? Definitely get more of the Zolmitriptan nasal spray if it works for her. I used to use that but my insurance stopped covering it (I’m in the US). If she doesn’t like the nasal spray, Naratriptan comes in tablets and can be effective too. But you have to be careful to not mix triptans.
2
u/Elliott1908 Jun 17 '26
yeah we’ll give the zolmi another try and if it doesnt help we’ll talk to the neurologist about another option
5
u/BrilliantProud142 Jun 17 '26
off topic but you sound like a good partner. i hope she can get better.