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Share your dilemmas and get honest opinions from other Mumsnetters.

Neurologist appt for migraines - was this a bit shit?

95 replies

EleanorDeCleaner · 09/03/2022 13:47

I had an appointment with a neurologist about my recurrent migraines, which I've had for 23 years. Everything was under control for a long time, but things have deteriorated again in the last 2 years, so my GP referred me.

I took in a diary I've been keeping for 6 months, and was expecting in-depth questioning about the mix of headaches, he range and location of pain, what helped and what didn't, any possible triggers or aura, and perhaps some tests around vision, balance, muscle strength etc. My only expectation was more specialist approach, a shake-up in the preventative drug therapy and maybe something better in my arsenal for acute attacks. I was really pleased to finally be speaking to a headache expert, I was full of hope as the relentless pain is getting me down and disrupting my work.

What I got was a man with terrifyingly pinpoint pupils, who barely looked me in the eye and asked me how old I was 3 times even though it was in the letter right in front of him. He asked me some fairly vague questions, and however I answered he'd respond rather aggressively with "And???" but then cut me off when I tried to elaborate.

He looked at my diary and said that he didn't need to see any more, his formal diagnosis was that I was a "recurrent migraine sufferer".

Err, yes indeed...Hmm

He told me I needed to change my lifestyle - without asking me any lifestyle questions - told me that I should learn to meditate as "monks don't get headaches", and rambled on at length about some book he couldn't recall the name of to do with resetting your hormones through diet. That I should regularly do exercise to get my heart rate into the 200s and keep it there. If he'd asked I would have told him that high impact or protracted exercise triggers a migraine.

He made about 3 notes. I asked if there was any other medication I could try. He wittered on about a couple of other drugs and something about "killing the beast", but I couldn't really understand what he was saying, he was speaking so quickly. He showed me out and started rapidly dictating a letter with my name in it (presumably to my GP??) before I'd even made my way along the corridor, with the door still open.

I was bitterly disappointed, but my DH said, what were you expecting?

I thought he'd be more thorough, more interested and assume that after 23 years, I may have already tried multiple lifestyle changes (and found they didn't change much). I appreciated his lecture on sleep hygiene but nothing I didn't already know from Dr Google. His physical neurological assessment consisted of touching my arms and legs and clicking his fingers by my ears. Confused

Was I expecting too much? My GP is going to get a letter saying I'm a fat menopausal woman with an endless headache, big deal chuck her some naproxen. I'm a bit insulted.

OP posts:
ChristopherTracy · 09/03/2022 16:51

I have had the opposite experience with the headache specialist in London (NHS) they suggested new preventatives, new acute drugs, put me on the physio list etc etc.

Ask your GP for another referral.

EleanorDeCleaner · 09/03/2022 20:49

I hadn't waited at all really, I'm fortunate enough to have insurance and the insurer simply booked me the nearest neurologist to my address with a specialism in headache disorders.

I'm in Lincoln.

Wow I'm so sorry @forlornlorna, your poor DD! How is she now, is it well controlled?

Yes I got the caffeine lecture too, but again had he asked rather than assumed he'd have learned that I have very little caffeine anyway.

I just feel so dismissed, he's a neurologist with a special interest in headache and migraine so why did he just write me off with barely a decent examination?

I think I'll call the insurer tomorrow now I'm feeling a bit less angry and emotional and see if they'll let me try someone else, and I'll be more assertive. I suppose I didn't know what to expect so I didn't push...I just thought it would be more constructive (investigative?) than that.

Have you started the topiramate @MissMaple82, how are you finding it? My GP had suggested it but I've heard mixed reviews, hence I thought a specialist might be useful. 🙄

I've just ordered one of those migraine tens machines - on offer at Lloyds Pharmacy, £80 down to £40 online. Worth a try...

OP posts:
Bromse · 09/03/2022 20:53

He sounds like a stereotypical neurologist unfortunately. I'm sorry you had to go through that. Migraine is more than a headache. There are specialist migraine clinics in some areas where you would be treated better.

I trust you are not taking either the contraceptive pill or on HRT, both of which are known to exacerbate migraine.

Hope you find some relief before too long.

EleanorDeCleaner · 09/03/2022 21:01

I am on HRT Bromse (transdermal gel), I mentioned it but he shrugged and said it was progesterone that causes migraine not oestrogen...I said my progesterone is in my mirena coil and he flapped a hand in my direction and carried on trying to Google the author of the diet book.

My favourite nugget of wisdom was that in menopause, chronic migraine can go one of three ways. It can stay the same, disappear completely or get worse.

That was it. Takes 4 degrees to tell me that.

OP posts:
PullingAtTeeth · 09/03/2022 21:07

If you’re in Lincoln and can travel a little i would highly recommend you try to get an appt with Dr Paling, consultant neurologist.
The only neurologist I’ve spoken to who has really listened with my chronic headaches and finally got them properly diagnosed and treated.
Hope you make some progress. Chronic migraines are debilitating.
finder.bupa.co.uk/Consultant/view/225948/dr_david_paling

DrinkFeckArseBrick · 09/03/2022 21:10

Think that's shit

I had
nuro tests (touching nose with eyes shut etc)
MRI
Follow up with food diary to see triggers
Advised to cut out caffeine
Loads of lifestyle questions to eliminate any factors I have control over
Concluded none of the above were to blame and may be hormonal
Gave me a prescription for nortriptylene instead of amitriptyline to treat
Discussed different types of painkillers
Gave me a load of info packs on hormonal headaches and different suggested treatments to read and discuss with gp and went through likelihood of symptoms and possible side effects

I did have an appointment a few years ago that might have been the same dr you saw at first, he basically said I didnt have a brain tumour so should be grateful as he sees them regularly and it could all be worse.

EleanorDeCleaner · 09/03/2022 21:12

Thanks @PullingAtTeeth, he looks amazing.

I would be pathetically delighted just to be listened to!

OP posts:
Findingneeemo · 09/03/2022 21:12

Not related to your experience but have you tried Chinese acupuncture? I went from having regular migraines (stress/sitting at a desk all day/ hormone levels are my guess as to why I got them so often), to rarely having them.

I had 2 sessions a week for a fortnight then weekly then monthly. Well worth the money.

EleanorDeCleaner · 09/03/2022 21:15

That's right @DrinkFeckArseBrick, they all think that as you're not dead after 20+ years it's nothing that exciting!

I had a more thorough neuro assessment from a GP in about 2006.

OP posts:
bellac11 · 09/03/2022 21:15

Those people advocating for researching neurologists and asking for referrals or referrals to different hospitals, how on earth do you do that. When Im referred to something or I have hospital appointments, they are simply at the hospital that is doing them or from where the clinics run?

Roominmyhouse · 09/03/2022 21:16

Your insurer should cover you for a second opinion. Just call and explain what happened. This time don’t let them book you an appointment, get a few names from them and do a little bit of research on them first. I’m sure you’ll be able to see someone who will be more helpful!

EleanorDeCleaner · 09/03/2022 21:17

Not Chinese acupuncture, no, but have had acupuncture. Saw an osteopath who did it, and also tried cranial osteopathy. Didn't help sadly.

OP posts:
bellac11 · 09/03/2022 21:21

@EleanorDeCleaner

I am on HRT Bromse (transdermal gel), I mentioned it but he shrugged and said it was progesterone that causes migraine not oestrogen...I said my progesterone is in my mirena coil and he flapped a hand in my direction and carried on trying to Google the author of the diet book.

My favourite nugget of wisdom was that in menopause, chronic migraine can go one of three ways. It can stay the same, disappear completely or get worse.

That was it. Takes 4 degrees to tell me that.

Ive got my own theory that its oestrogen that contributes to migraine because im in peri menopause and the one (only one) benefit of this seems to have been that my migraines have improved fantastically
stonebrambleboy · 09/03/2022 21:22

Acupuncture can be very effective.

stonebrambleboy · 09/03/2022 21:22

Sorry just saw your update on acupuncture.

HeyBlaby · 09/03/2022 21:23

He sounds batshit.

EleanorDeCleaner · 09/03/2022 21:26

He was quite eccentric @HeyBlaby. Wondered about his pinpoint pupils, they were really, really incredibly small... Shock

OP posts:
fenestrina · 09/03/2022 21:28

Google migraine specialists in your area and read as many reviews as you can. Ask on local Facebook groups and people you know locally for recommendations.

When I had a condition where I was a in a lot of pain and NHS being no use, I asked online, found a few names that came up again and again and then read every review, all about their specialisms. Chose one guy because all the reviews raved about how nice he was was and how much he listened.

Was a fabulous appointment - he answered every question, spent longer than my allotted time, treated me like I was the most valued patient. Incredibly helpful in deciding on my course of action and referred me back to the NHS for next steps.

I paid for that myself (no insurance) but worth every penny. And all the time taken to choose the right specialist was worth it.

If you're paying for it, you can absolutely choose who you see! That's kind of the point of private healthcare.

Akire · 09/03/2022 21:32

I’ve seen a neuro many times no one was interesting when I mentioned my migraines. Granted not main reason for visit but because wasn’t constant (thank goodness) not even been offered any preventives.

Luckily last 10y touch wood, peri has turned them all mostly visual and sickness but no pain. But still what 8 days month when your day is ruined by not being see or get up. I also have 6th nerve palsy and no one’s ever bothered about that either.

In my experience about third neuro think they are God like, us mere mortals are wasting their t

Valhalla17 · 09/03/2022 21:32

He sounds like he might be on something quite frankly....

Akire · 09/03/2022 21:32

*time and must’ve treated like dirt. Do ask to see someone else it’s such a rotten condition with little sympathy for what is chronic condition.

Mocara · 09/03/2022 21:32

@EleanorDeCleaner

I had an appointment with a neurologist about my recurrent migraines, which I've had for 23 years. Everything was under control for a long time, but things have deteriorated again in the last 2 years, so my GP referred me.

I took in a diary I've been keeping for 6 months, and was expecting in-depth questioning about the mix of headaches, he range and location of pain, what helped and what didn't, any possible triggers or aura, and perhaps some tests around vision, balance, muscle strength etc. My only expectation was more specialist approach, a shake-up in the preventative drug therapy and maybe something better in my arsenal for acute attacks. I was really pleased to finally be speaking to a headache expert, I was full of hope as the relentless pain is getting me down and disrupting my work.

What I got was a man with terrifyingly pinpoint pupils, who barely looked me in the eye and asked me how old I was 3 times even though it was in the letter right in front of him. He asked me some fairly vague questions, and however I answered he'd respond rather aggressively with "And???" but then cut me off when I tried to elaborate.

He looked at my diary and said that he didn't need to see any more, his formal diagnosis was that I was a "recurrent migraine sufferer".

Err, yes indeed...Hmm

He told me I needed to change my lifestyle - without asking me any lifestyle questions - told me that I should learn to meditate as "monks don't get headaches", and rambled on at length about some book he couldn't recall the name of to do with resetting your hormones through diet. That I should regularly do exercise to get my heart rate into the 200s and keep it there. If he'd asked I would have told him that high impact or protracted exercise triggers a migraine.

He made about 3 notes. I asked if there was any other medication I could try. He wittered on about a couple of other drugs and something about "killing the beast", but I couldn't really understand what he was saying, he was speaking so quickly. He showed me out and started rapidly dictating a letter with my name in it (presumably to my GP??) before I'd even made my way along the corridor, with the door still open.

I was bitterly disappointed, but my DH said, what were you expecting?

I thought he'd be more thorough, more interested and assume that after 23 years, I may have already tried multiple lifestyle changes (and found they didn't change much). I appreciated his lecture on sleep hygiene but nothing I didn't already know from Dr Google. His physical neurological assessment consisted of touching my arms and legs and clicking his fingers by my ears. Confused

Was I expecting too much? My GP is going to get a letter saying I'm a fat menopausal woman with an endless headache, big deal chuck her some naproxen. I'm a bit insulted.

My daughter, 3 years chronic intractable migraine with cyclicil vomiting.Found a Gp in our practice with a specialist interest we were refared to local hospital but not there specialism (fantastic support),refared to another hospital with a specialist migraine clinic (excellent support ) now under GOSH and the care has been transformative. Do your own research new drugs/ tratments /hospitals with specialisims etc,dont take no for an answer if the hospital dosent specialise asked to be refared to one that is . Dont wait for appointments keep calling till your on first name terms with secrataries. Link everyone . Every single document related to my daughters condition gets sent to each hospital by the hispital also to the gp and school involved so I dont have to keep repeating everything. Challange and be confident , if your the sufferer you will have more expertease than most of the none specialists you will meet. 2019 NICE new migraine specific drugs for adults available . Migraine trust website will keep you abrest of current info.
Philisophigal · 09/03/2022 21:34

This reply has been deleted

This has been withdrawn at the user's request.

TillyTopper · 09/03/2022 21:38

OP, I'm a fellow migraine sufferer. Cefaly (I don't work for them) has changed my life. It hasn't completely fixed the migraines but with that, regular habits, regular magnesium and a couple of other things (excluding tyramine from my diet for example) I do have my life back. Look at the Migraine Trust and Cefaly - it may help you. PM me if you like.

ChopinBoard · 09/03/2022 21:52

Awful but not surprising. You need a second opinion.

I went through a phase of having lots of migraines (well, lots for me); five in one week and even two on the same day. My GP prescribed beta blockers which I didn't take. I wanted to get to the bottom of it, and figured out it was fruit (strawberries and kiwis and maybe others). I'm now back to one every few months.

My mum's got worse at menopause and she now takes epilepsy medication which has made them much less frequent and less bad when they do occur.

I really feel for you op and hope you can get to the bottom of it. People who don't suffer simply don't understand how dreadful and completly debilitating they can be.