how desperate do I need to be to get a referral?

suffered from migraines for 10+ years, tried pizotifen, amytriptyline and varying strengths of propanolol. rizatriptan sometimes sort of helps but side effects make me reluctant to take it when I'm at work.

No gp seems to want to refer me and I'm wondering if it'll take me breaking down in front of one to get through to them!

Oh and NHS symptom checker says I'm having a stroke and need to go to A&E, which is hilarious...

had to rant, so frustrated =/

10 Replies

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  • Hi there you can self refer to the National Migraine Centre, I did... and if you have stroke like symptoms.... perhaps you should look into APS, Hughes Sydrome, just a thought, often a history of awful migraines, dizziness, sometimes miscarriages, bad circulation and migraines which do not respond to medication! Also terrible reaction to contraceptive pill. Mary F x

  • Just been reading a BBC article on the genetic link between epilepsy and migraine, interesting as my mum is epileptic.

    I do sometimes have pretty bad circulation, haven't taken a combined contraceptive pill for many years (due to the migraines).

    Going to try and put more effort into identifying some kind of pattern/triggers but nothing has leapt out at me in the past.

  • If you're talking about a referral to National Migraine Centre, you don't need one. We now take self-referrals, so come along, make a donation (sadly we get no NHS funding) and be seen by one of the country's leading headache specialists.

    We promise to be more useful than the NHS symptom checker!

    Call 0207 251 3322 - we have short notice appointments at the moment due to the Christmas break.

  • sadly limited funds are restricting me to NHS options. acupuncture was suggested but too expensive for me atm. I had looked into the National Migraine Centre but seems a little out of my (travel/financial) reach at present.

    I'm just kind of resigned to the whole thing and feel like I shouldn't have to be.

  • As a charity we wouldnt exist without donations but if this is stopping you coming to us, please come anyway and help us in the future when you are in a better financial position. It sounds like you genuinely need some help managing your headaches. All the best.

  • definitely worth a try when I've got some time off work for a trip to london haha, thanks for your help =]

  • I've had the same NHS symptom checker results! Keep plodding on though - I went through a similar problem with getting a referral for chronic pain (which as it turns out was triggering migraines), and then began a very lengthy process to get some treatment that worked. It can feel like you're wading through treacle. What can I say, other than keep going.

  • You have done so well to get any GP to refer you for anything these days!

    There seems to be a 'pathway' to trudge down for most ailments.

    The National Migraine Centre sound lovely to me - and probably don't just ask if you are depressed when you sob with relief/embarrassment/shock at being asked how you feel.

  • The National Migraine Centre are amazing - they see people with migraine every day and really know their stuff. I've cried a lot there but that's fine! They understand - and can help give you practical advice based on your history rather than the general population. They also won't force you to take a route you don't want to - so if a certain type of medication isn't right for you they'll try and find one that is. They also focus on all of the other triggers/issues around migraine too. Georgiegone - it's definitely worth the trip - and perhaps worth factoring in even in the next few months. Alternatively - there are some really good books that have helped me understand my migraines better and give some fantastic advice:

    Coping with Headache and Migraine - Alison Frith (Amazon link - amazon.co.uk/Coping-Headach...

    Alison also used to work at the NMC and suffers with migraines. Amazing book - made a world of difference to me.

    Finally, support is so important for us migraine folk. My lovely friend Victoria writes a very heart warming blog all about migraines and definitely worth a read. She offers lots of helpful advice and tips but also just tells some darn witty stories and it's nice to feel like you aren't alone. Obviously that's what this community is all about too! :) migrainemonologues.com/

  • ohh the NMC is looking more and more appealing haha, my GP keeps trying to get me in topiramate which I don't want to take cos it'll mess with my contraception. ugh.

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