Neurologist appt for migraines - was this a bit shit?

[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...

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.

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.

That sounds absolutely shit.

As a fellow migraine sufferer, I'm appalled by that.

I experienced similar when I finally got to sit down with a neurologist. Total waste of time and left me feeling utterly alone with it.

YANBU, that’s terrible. I have complex migraines too and have seen neurology about them on and off. Each time I had a full history taken, neuro exam, medication check and if there were any changes I also had a new MRI taken and associated follow up. Incredibly long waits though, it’s a very oversubscribed dept.

I’m sorry you had such a shit experience. Can you afford a private consultation?

You weren't expecting too much, but sadly I am not surprised by your experience. Sadly too many doctors if there is not something they can see on an x-ray or a blood test they are not interested - as if it can't be that bad because they can't see an organic cause for it.

I should add I have the same problem with exercise and migraines and I tend to swim a lot as I don't get the problems (unless I put my goggles on too tight).

That's appalling and it's awful he doesn't know what treatments are out there. Can you afford to see someone privately just once?

If you get another appointment, assert yourself a little more this time and interject with "I have a few questions" and off you go.

I'm sorry he was such a dick op. I've been in a position like yours and just let the appointment happen and I left feeling confused and upset like you.

The next opportunity I had, I changed my approach , listened to all they had to say and then took out my list of questions and made them attempt to answer every one.
I challenged things they assumed about me/my lifestyle and even though it didn't really change my medical issue, I at least left feeling heard and not just barked at.

I hope you find something to relieve your symptoms op.

By the way, don't lose heart over one awful doctor. There's never been a better time to have migraines. Treatments are often overhyped but in the case of migraines it really does seem like great things are happening. Can you get a list of recommended practitioners from the migraine charity online (forgotten its name)?

That sounds pretty awful. As a bare minimum I would expect a neurologist to ask some questions about your lifestyle.

When I was trying to find out about where to go for my migraines which had changed in the last couple of years (much like yours) I had several people recommend the National Migraine Centre. Unfortunately I couldn't use them but I have heard universally good things about their approach.

Mine was awful too, didn’t give a shit and said I had to just live with it. Said there’s no point in trying the medication as it probably won’t work! And that I could try some exercises 🙄 Luckily I did persuade him to recommend some medication to my GP as I don’t know how I could have gone on suffering with it any longer.

I think that migraine is so difficult to diagnose and pinpoint the causes that they can’t be bothered with it and they would rather be dealing with more exciting things.

I'd contact PALS as the whole thing sounds like a total was of time & money.

So that was not acceptable. See your GP explain how dreadful he was - be very clear that you were horrified at the consultants attitude and ask how to make a complaint or get referred to someone else. Dont try to excuse him juts say none of what he did was acceptable. Or phone PALS and see if they can give you advice on how to see another consultant - that is possible. Migraines are awful and I'm sorry you had a dreadful experience.

Some have a special interest in migraine, the fact that it isn’t well understood (but represents a massive health burden) is an attractive challenge to some. Sadly there are also those who don’t feel like this

Some GP’s also have a special interest in it, (same as some have a special interest in dermatology, MH or women’s health), it’s worth asking your practice if any of yours do. Obviously there is a limit as to what they can do in terms of investigations or specialist prescribing but you may find them helpful.

That is so different to my experience. Had an MRI. They discovered an asymptomatic brain condition which may or may not have been relevant. Year later I found out I had hashimotos, gave up gluten and medicated - and now I only get migraines when I have my period (like today). I would push for a referral to someone else.

Fellow migraine sufferer here and not my experience of seeing a neurologist at all, I've been offered many different preventatives - Botox and now Ajovy which is a life saver. You need to push for a referral to a different neuroligist there are good ones and help out there!

I had an awful first experience with neurology, but I was there for a movement disorder and they were more interested in my headaches than it sounds like yours was! I explained why I had them (which should have been all over my records tbh) and they still did tests.

The next one was lovely if that helps.

You are entitled to a second opinion. Contact your GP and request a referral to a DIFFERENT hospital.

Thanks all, that's made me feel less like I'm some kind of attention-seeking malingerer!

Yeah I actually cried afterwards because I feel alone, nobody gives a toss. I'm so tired of it. I know there may be no reason, I know it isn't possible to eradicate them, but better management must be plausible surely? I do have a diagnosed eye condition linked with 6th (cranial) nerve palsy, I was keen to bring it up but he didn't talk about peripheral vision or eye movement (apart from waggling his fingers either side of my head and making me point to which fingers were moving).

90% of my pain occurs on waking in the night/morning and can sometimes be relieved by standing, which is linked with intercranial hypertension - rare and probably not that, but maybe worth ruling out? I had half expected an MRI scan at least.

That WAS a private consultation! I have insurance, the insurance company booked the appointment - I gave the address to my GP and they wrote the referral letter (and got one of my medications wrong, apparently I control my headaches with "loperamide" which is bloody Immodium FFS. He didn't even notice and when I corrected it he'd never heard of it).

There wasn't any reference to insurance on my file that I could see, it can only be on the electronic record - they confirmed at reception that I was a private patient but I'm wondering if he realised that. He might have thought I was NHS, wonder if that's why he ushered me out after 30 mins with a recommendation for meditation and a diet book...?

Maybe I could ask the insurer for another go with someone else, they're pretty helpful.

I sympathise. I have a persistent headache / migraine disorder. I was told by one Neurologist no caffeine for 12 months and when I stuck to that, without any improvement, was told I "must have cheated". He was so unpleasant. I would not have paid for his time. He still practices and presumably still tells all his patients they are lying and have caused their own headaches by not sticking to his no caffeine regime.

OP, may I ask where about (in very general terms) you are please? I am awaiting a neurologist for the same reason and am just hoping we are not in the same health authority.

That was a very disappointing consultation, especially if you've waited ages for it.

Oh god he sounds like the neurologist I saw when I had a month long migraine. Was rude about me wearing sunglasses indoors (I was light sensitive so it made leaving the house more bearable), and treated me like I was an idiot for going to get my eye sight tested when the pain started.

Thankfully he did give me a solution for the pain, but I came out of the appointment feeling utterly wretched.

You need to do your homework and find neurologists that specialise in migraine and push to go to one of them. A lot of consultants only care about their small niche and are not well versed in other conditions

Private is no better than NHS, you need to be absolutely assertive and knowledgable with consultants and tell them what’s what- I have learned from experience it’s the only way. Otherwise they either don’t listen and hustle you out, wax lyrical about inconsequential rubbish or see the ££ signs and you up for every test under the sun when they see you are going through insurance. I have often found that if the consultant is an older male that they treat you like an imbecile and don’t listen to a word you say, so I now take my husband with me to every appointment and know exactly what I want to get out of it when I go in and don’t leave until I am satisfied.
Only last month my gastroenterologist went off on a tangent wittering on about H Pylori having come from ancient Homosapian man in Africa and tracing its origins back centuries, he droned on for about 5 minutes on this until I brought him back to my actual stomach pain and what we were planning to do about it.

You probably should have requested an MRI scan at the very least as the way you describe the headaches does has some features that need to be checked out. I would complain to the private hospital that you feel you didn’t receive the consultation you (or your insurance) paid for.

I'd push this further. I have just been prescribed Topiramate for recurrent migraines. That and advice on lifestyle.

I feel so angry for you!

We had a similar experience with my dd. She was becoming bedridden for days at a time and it was just an awful time. Gp referred to neurologist and he just told her she was overweight (by literally 3pounds) and probably had too much screen time. Wouldn't listen to anything we said. Gave her a diet sheet and discharged her. Our gp was livid and referred her elsewhere.

In the meantime she had a seizure and a lot of fluid was coming from her nose. She had an emergency scan where she was diagnosed with inter-cranial hypertension (hope I spelt that right). This would of been picked up if original neuro had asked the right questions and examined her, looked for pressure in her eyes.

I'd go back to your gp and ask for a second opinion. Best of luck op

That WAS a private consultation!

On no. How did you find him