New guidelines for headache diagnosis from NICE

[MaryF]

Found this when trawling through the papers today.

telegraph.co.uk/health/heal...

Mary F

[Charlotte_NMC Partner National Migraine Centre]

Great article thanks Mary, I have shared this on Facebook and Twitter.

[Hidden]

It is a great article and perfectly timed.

I have been very ill since September (my migaines took a turn for the worse) and had to really battle and then change GPs to get a referral. However after all that effort the first referral was not to the type of specialist I should have seen and only resulted in delaying my access to the right care for around an additional 3 months. I lost my job as a result of the delays in accessing pain relief and diagnostic tests and I've no idea when I will be well enough to work.

I'm currently following up the delays and access issues with my MP and PCT. The PCT have replied and are being unhelpful. They are in complete denial about some GPs behaviour towards migraineurs. Some of the problems are around GP commissioning and GPs not wanting to spend money on 'headaches',others about migraine awareness and of it's impact on sufferers, their work life and their families lives.

Thanks for flagging this up Mary!

[MaryF in reply to Hidden]

Oh dear, I understand. We had the most dreadful time with a child with horrendous headache, a continuous migraine for 15 months and 4 days. I consulted with The National Migraine Centre, who know far more than doctors. I did not need a referral and wasted no time in arranging it. It ruled out all the things it was not. Also it turns out I have hughes syndrome and lupus as does my young daughter, which in our cases is the cause of our rather rare headaches! x

[janjan78 in reply to MaryF]

MaryF....I have anitphospholipid syndrome (think Hughes is another name for it!) I have asked my GP & Neuro if the 2 are connected & was told no!!!! I was tested for Lupus yrs ago when they discovered my antiphospholipid but it came back clear....I asked is it possible for it to have "activated" in some way cause I have suddenly been floored by 2/3/4 migraines a week for 2yrs now & no-one knows why but I now have dermographic urticaria (skin writing), pins & needles that are unexplainable oh but except when am on topirimate cause that's a side effect!! There's a few other things that mde me think that but when my GP & neuro both said no (who have both been pretty good) I have taken their word for it =(

[MaryF in reply to janjan78]

Hello, are you being treated for APS, as if you are not, you need to be. The Hughes Syndrome Foundation is here on HealthUnlocked. Or I can give you the web address, and of course under the charity they have a forum. This disease is often misunderstood. St Thomas' have the expertise, you can ask to be referred there, they are very good with Lupus and APS.. my daughter is now on plaquenil to calm her symptoms and aspirin. Let me know if I can help further. M

[MaryF in reply to MaryF]

Also if you GP/consultants are stubborn to skilling up on this, you can arrange a private appointment at London Bridge with Professor Hughes, it costs a bit, but that will solve things, and give authority to your case as you wait for a referral to St Thomas' indeed, they may be swift to refer you, after you go to London Bridge, best of luck. Mary F

[janjan78 in reply to MaryF]

Yes I am being treated for it just "baby aspirin" every day though.....if I go for an operation or anything then I get whacked with heparin!!! =D lol The APS was found by fluke after I had pre-eclampsia,eclamptic fit/unconscious x3days/small for pre-term baby/DVT/PE =D lol they didn't want to see me ever again on the labour suite I gave them more work in one week than they had ever seen in a month/year!!!! =D lol I'm kind of stuck with the GP/Neuro I have cause logistically it's the only ones avavilable to me!!! I can't afford to go private as just now it's only my hubby working and i'm trying to get back to my own job before they medically sever me =(

[MaryF in reply to janjan78]

I understand I have very limited funds, I went for a one off appointment with tests, but you can of course carefully just happen to take your most recent tests. Now I see Professor H, just once a year, and do no tests! You can make your GP refer you to St Thomas, the drug they like to put those with LUPUS and HUGHES on is currently plaquenil. my daughter is on that with aspirin M x

[janjan78 in reply to MaryF]

Is all this in London though?? I'm NW highlands of Scotland it's 5hrs for me to get to glasgow!! =D lol do you know if there is there a branch/clinic for the NMC in Scotland that I could even try & get to?? I need to get to the bottom of what's triggered them all of a sudden but it's not the 1st time APS has "flagged" up in my research but like I say when I mentioned it & was dismissed then I ruled it out.....mmmmm back to the drawing board =)

[Hidden in reply to MaryF]

I have Sjogrens syndrome which was diagnosed by the wonderful Dr Hughes. Have been taking plaquenil for years but finally stopped it earlier this year having grown out of the symptoms. Just joined this site as docs think the strange vision problems I have been having are early symptoms of dementia or brain atrophy but the eye doc says they are just a change in my migraines (onset at menopause, visual aura only of exploding star, easily controlled at onset with mild painkiller).

Am now wondering if I should restart the plaquenil?

[Hidden]

Thanks Mary, I've been in a chronic migraine state since the end of September...and counting. I have been to the NMC in the past, some years ago. I had an added complication of vertigo so needed to see a neuro-otologist, but now I hope I can come back to NMC alongside this and with my vestibular migraine diagnosis. I'm now just hoping the chronic cycle will end...it has to at some point!

[MaryF in reply to Hidden]

I am sure they will get to the bottom of it for you. M x

[VictoriaS]

Thanks for flagging this article Mary! I might just have to blog about it, glad NICE are getting involved. However, don't GP's already have the BASH guidelines to use as diagnosis and management guidelines?

217.174.249.183/upload/NS_B...

But can't hurt to get more attention! Victoria

[MaryF in reply to VictoriaS]

Yes. Good stuff, Best wishes. Mary F x

[eiznil]

Thanks Mary, I shall share this oin facebook. It was a very interesting read x

[MaryF in reply to eiznil]

Great x

[Charlotte_NMC Partner National Migraine Centre]

In response to janjan, sadly we have no other clinics except the one in London. That is not to say that we wouldnt like more! We are so lacking in funding, a little help from the NHS could allow us to expand but its not forthcoming at the moment! We are working on it though.

[janjan78 in reply to Charlotte_NMC]

That's ok =) thank you anyway.....one day you may find me being dragged in through your doors & plonked on a chair by a 6'2" highlander (not in a kilt!) having battled his nerves of flying & braved the flight down south then demanding that I don't leave until I get fixed!!! =D lol

[MaryF in reply to janjan78]

Goodness me.... I want to be there to see this! Mary x

[Charlotte_NMC Partner National Migraine Centre]

I am sure we wont be able to miss him, or you for that matter. I hope you do get down to us.

[Frodo]

About time.

Still doesn't go anywhere near far enough in looking at potential causes, side effects from the meds they mention or other treatment options. But maybe it will help to prevent patients enduring years of misery while being told their debilitating progressive neurological disorder is "stress".

Neither does it really explain the full extent to which it "can be an extremely disabling condition".

Doctors need more training and there need to be far more specialists nationwide, ideally branches of NMC: it took me SEVEN YEARS to get one appointment with our ONE local specialist who is completely oversubscribed.

Long distance travel is almost impossible for me (because of migraine) so while I would like to visit NMC Charlotte_NMC it's a terrifying prospect - migraine and nausea/vomiting on a crowded train miles from home. Low income (because of migraine) makes the suggested fees extremely difficult as well, which is the problem with all chronic illness and paying privately.

I wonder if there is a way to contribute to the new guidelines as patients.