National Migraine Centre
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Consultant appointment cancelled

I am new to the forum, so I hope I am doing this right. I had an appointment booked with neurologist for Jan 17. Migraines worse lately so after speaking to GP she referred me. Didn’t expect much as have had them for over 30 years and nothing has really helped. Hospital called today to say appointment cancelled as consultant had rejected referral. They said I should contact GP as hospital had sent them a headache pack. Does anyone know what this is? Or had same experience?

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Hello,

I've never heard of that but my assumption would be that GP hadn't tried any of the logical next step treatments before referring you. The consultant would only usually be seen if the conventional treatments had not worked, which does seem quite likely as they referred to a headache pack?

The headache pack may also ask for more data on you as well like headache charts where you document your headache frequency and severity.

Obviously you call your GP though!

Good luck,

Cat

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Hi Cat, thank you for your reply.

My GP went through all the medications I had tried and said there was nothing else they could give me, which was why she referred me. It will be interesting to see what my GP says.

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I did get to see a neurologist but this was a few years ago. I have to say he wasn't any help whatsoever and it was an upsetting experience.

I saw an endocrinologist who was more helpful and ordered lots of tests including a brain scan.

Later after waiting seven years and paying for the appointment (fortunately not too much), I saw a headache specialist who happens to be based nearby, and that was a very helpful appointment resulting in another scan, an informed discussion about medication, and a trial of a neuro-stimulator. However I was refused any further appointments with him, even paid ones.

I think there are not enough specialists for the vast number of migraine/headache sufferers. There is a 'pathway' which means you jump through the hoops of taking all the different drugs, with all their different side effects, generally beginning with the cheapest. In my opinion this is the wrong approach and can be seen as quite punitive. Proper diagnosis of the type of migraine and exacerbating factors would be better.

The fact you've had the migraines for 30 years goes against getting a referral as I think they will be looking for 'red flags' eg a sudden onset severe headache in someone without a headache/migraine history, whereas chronic longstanding patients will tend to be a low priority.

Unfortunately most GPs have very little training in migraine/headache. Your GP did the right thing to refer you as changes to headache/worsening should be checked out, and they will probably not appreciate having the referral bounced back for them to deal with, but I think the ongoing cuts and changes to the NHS are really to blame. As well as a historic poor approach to migraine in general in medicine.

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Hi Frodo, thank you for your reply. I agree with everything you say. I have to be realistic that after all this time, which is why my expectations were low. I will see what my GP says.

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I agree with Fodo I've had similar experiences however after 30 years of chronic migraine haven't had a brain scan, but I have seen about 13 consultants over the years. It was the pain clinic that eventually got me an MRI on my neck two years ago.

I'd be surprised if the GP thinks every medication has been tried, I think last count I'd tried 23 different drugs and that's not including Botox, GON injections and other things like an obscure anaesthetic being injected into my spine! Then there acupuncture etc.

I find GP's don't keep up on current research ( I presume they don't have the time ) so they seem to know much less than I do about possible treatment pathways so you have to be your own researcher and try and het them to listen!

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I wanted a neck MRI as I think cervicogenic headache is a big part of my problem (history of neck problems and increased headache frequency after an injury) but was refused - with a sharp intake of breath - as if I was asking the earth.

This would have made a difference to medication choices of course. Cervicogenic headache is as bad as migraine, and can also trigger migraine, but works differently as far as I'm aware.

I now expect to go to my grave without any resolution or answers! Unless I win the lottery.

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The scan showed I had 'severe muscle spasm' down one side, they said it was probably caused by years of pain so all the muscles are shorter down one side of my neck/back. Unfortunately the treatment had a 50/50 chance of working and it didn't work so I'm back to square one on that one!

I presume cervicogenic headache would be a bone thing? Rather than a muscular thing.

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I can only say that there is no difference being treated by a Neurologist and a GP. Most neurologists are clueless treating headaches and to be honest they probably are less experienced than many GPs as GPs deal with migraine patients more than these generic neurologists. Hence a neurologist is less keen to treat migraine patients as their ignorance, inability and incompetence are often exposed as most outcomes of their treatment is fruitless. I have checked with right clinical people and there is hardly any detail curriculum on migraine and headaches when a doctor is studying (specialising in) neurology - probably only a couple of hour’s session and that can be read and understood by any doctor of any discipline including GPs (if they want).

Only a headache specialist (happens to be mostly a neurologist) or a GP who has interest in treating migraine/headache can perhaps help better, but there is no magic method or cure for this illness as we all know, so please do not hope too much if you are seeing a neurologist.

An MRI and MRA scan should always be performed on chronic migraine patients as routine, but unfortunately our NHS (and US insurance providers) do not want to invest and spend money on this area. Remember, even a competent neurologist will have no clue what MRI scan means without the report from a radiologist who is specialised in neurology and brain. This report can be read and used by any doctor, but neurologists (in the NHS) can ask for MRI easily where GPs can't - that's the problem.

If you are lucky you may be selected for clinical trials which can be useful but it is not easy to qualify and there are not much spaces to be honest.

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Thanks Troy04. No I don't expect much, I have had 30 years of experience with GP and hospital appointments with migraines with very little positive outcome. I live in hope that I will find something that helps though.

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If you can make it to London our headache specialists would be happy to see you. You can self-refer and our doctors will create a personalised treatment plan for you to help get your migraines under control. Just give us a call on 020 7251 3322 or you can fill in our online booking form: nationalmigrainecentre.org....

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