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.

Just had a very similar experience with a neurologist. 8 years of investigation and finally got diagnosed with a Chiari Malformation where the brain pushes on the spine. I had a 3 min telephone call to be told this, given no other info and told to only go back to the gp if things change. I've never seen him - it's all been phone except for the MRI. Feel completely tossed aside so have complained to the GP in writing who then phoned and said yes that's not good, can you put it to me in writing. No wonder people give up. Sorry it was so crap for you too x

That’s sounds awful - and unfort I can also relate as similar happened to my teen daughter. We are finding a few things have helped her. Have you heard of Facia release? It’s a thin membrane over the muscles. Do you avoid dairy? Apparently being low in B2 can contribute to migraines. A nutritionist tested my daughters blood and she was low in this.
And the final thing is POTS - some people their heart rate is normal lying down but it rises by 30-50 beats per minute when they stand contributing to migraines. Our second neurologist put my daughter on beta blockers and that’s helping.

I don't know anything about migraines or neurologists, but I do know that if the choice is given to your insurance company, they will just pick the cheapest neurologist possible. You should try to control the consultant you see, aiming for someone who really specialises in your condition, possibly the lead on it at a teaching hospital.

That is awful - my ex was under Queen's Square in London for a number of complicated headache conditions and one of the first things he was told by an expert in the field was 'you could live like a monk and you would still get these headaches'. Obvs not migraines but I imagine the sentiment is the same...

He had botox at one point which did help (he wasn't private but was lucky enough to be on a trial they were running). It might be worth asking about that going forward?

@vixeyann

Just had a very similar experience with a neurologist. 8 years of investigation and finally got diagnosed with a Chiari Malformation where the brain pushes on the spine. I had a 3 min telephone call to be told this, given no other info and told to only go back to the gp if things change. I've never seen him - it's all been phone except for the MRI. Feel completely tossed aside so have complained to the GP in writing who then phoned and said yes that's not good, can you put it to me in writing. No wonder people give up. Sorry it was so crap for you too x

Yep - that's what my ex had too, it was the discovery of that that got him fast tracked to Queen's Square so I'm so sorry you didn't get the same. There's so much research being done into migraine and headaches - they are so debilitating but just get brushed off by so many medics. At one point he had cluster headaches too - horrendous to watch as a bystander let alone think of the pain he was in.

OP can I ask where the consultant works in the NHS? The large teaching hospitals have consultants who sub-specialise more - so where a small hospital might have a few neurologists who have to cover all areas of neurology between them, larger teaching hospitals within a reasonable distance of you like Addenbrookes, Leeds or Nottingham will have neurologists specialising in headache (assuming they've been able to recruit, that's been an issue in this specialty). Might be with trying one of these, preferably with a recommendation.

I'm so sorry you've had an awful experience. One of my family members had a CSF leak, causing low intra cranial pressure, and the treatment resulted in high ICP. It was so debilitating, and can be dangerous so it's important the possibility of that is excluded too.

Dr Alex Nesbitt at Guys & Tommy's is outstanding apparently, the NHS wait it horrendous, but if another private appt is doable, he might be an option if there's no-one you want to see at the other teaching hospitals listed about.

@EleanorDeCleaner

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

On something?

Seriously, complain and ask to be seen by someone else. The insurance should cover it. He sounds bonkers.

@UnconditionalSurrender

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.

This.

I saw a neurologist. She did a full history, asked loads of questions, completed a detailed physical exam, sent me for a plethora of blood tests and two MRIs.

That's the type of thing you should be getting (obviously adjusted for your condition and symptoms). But no what you experienced was completely unacceptable.

As the PP says. Go back to your GP and/or complain.

Sounds like a typical doctors appointment to me. They are not interested in your symptoms or possible cures just want to write a prescription and get you out of the door. It’s no wonder the nhs drugs bill has tripled in 10 years.
Went family have had random symptoms I have usually been able to diagnose what’s wrong with dr google quicker than an actual doctor.

He sounds really inadequate OP. I'd definitely give feedback about him, possibly complain of you feel strongly enough about it.

I've had hemiplegic migraines for nearly 20 years, & hormonal migraines for the last 10. I'm currently on topiramate, botox, magnesium, 400mg vitamin B2. Tried a number of other drugs but they either didn't work or had undesirable side effects. Candesartan made me faint daily. I've recently been trying out a low tyramine diet which has helped quite a bit - it's quite restrictive but TBH not as much as the migraines. I've also switched to all organic dairy, meat & eggs, & only eat wild caught fish. Apparently there is something in the feed and/or medicines that is routinely given to the animals that can be a trigger to some people, although IDK what. It's not something I'd ever heard of before a few months ago but there's quite a bit of information online, just google "low tyramine diet for migraines". Obviously everyone will have different tolerance for it. And it may be that some people won't be helped by altering their diet at all.

BTW, thanks for the mention of the TENS machine, I've just ordered one.

By way of an update, I went back to my insurance company (who made the appointment for me in the first place, they offered me a choice so I simply picked the closest without doing any research - how bad could it be right).

They were very sympathetic, faintly horrified at the minimalist approach of that particular neurologist and typed up feedback straight to the hospital as I was describing it.

They then came up with a selection of alternative specialists within an hour or so of me, and I even asked about Dr David Paling who was recommended up thread - they confirmed that I could have a consultation with him under the provisions of my policy.

I've done some reading this evening and one of the neuros listed is a Dr Fayyez Ahmed at Hull - who has not only spent his entire career specialising in headache disorder, but set up the Headache Clinic at Hull, and is a trustee of the Migraine Trust amongst various other things.

Sorry Dr Dave, I went for Dr Ahmed!

Fingers crossed. I've got a six month headache diary, a list of current and discontinued medication - what else should I prepare? Questions?

The guy yesterday asked what I wanted from the consultation - whilst I don't truly believe there is anything serious or sinister going on, and the diagnosis is simply chronic recurrent (vestibular) migraine, I'd really like a decent treatment plan which is a touch more considered than a blanket GP approach. Is that reasonable?

Does your headache diary include details of your menstrual cycle, food intake including whether things were fresh or leftovers/pre-prepared, what the weather was like, how much & specifically what you drink, how tired/well rested you feel each day? If not, I'd start including that.

Sorry op. I’m in a rush but my treatment went: local gp prescribed everything available nothing worked. Sent to hospital for an mri, all fine. Referral to neurologist and treated with Botox. There’s a new drug on the market fremanzu something.

Ideally I would expect the consultant to have the information ready for you when you go in, it's reasonable to expect that a neurologist would know enough about the condition that they would either be able to recommend things from memory, or have resources to hand - not be struggling to look them up while you're sitting there. And if they don't they they should presumably take the time to look these things up. It's not exactly an unusual question, to ask about further medication options, and if he wanted to recommend a specific book to you he should have made sure he could at least remember the name of the book, or the author.

Glad you've got another chance to see a specialist though, hope this one will be better. And well done for giving feedback on the previous guy. Sorry for fragmented message, I've been awake ages & my brain is refusing to co-operate!

I would highly recommend getting a private consult with a consultant at the national neurology hospital in London - they are outstanding there and it is possible to be moved onto their nhs list after a private consult

Omg. I saw an NHS neurologist for migraine and he was fantastic. Took the most through history, starting with my birth! Sent me for an MRI, prescribed topirimste as a preventive, was super sympathetic, gave lots of lifestyle advice (sleeping on one pillow has changed my life!) And left me with an open appointment because of the medication.

The topirimate worked wonders. It was hard going, getting through the side effects, but I did and I've been migraine free ever since. And off the topirimate for years.

There's better out there.

That's shit OP, I'm sorry you were treated so brusquely. It sounds as though things haven't improved any in the 40 years or so since I saw a neurologist about my migraines.

I was having 2-3 attacks a week at one time, accompanied by endless vomiting, and each one would wipe me out for 24 hours or more.

The thing that helped me most was acupuncture, so maybe give that a try. One session reduced the frequency to less than weekly, and after a couple more sessions, I was down to one a month. I used to see the acupuncturist every 6 weeks after that.

It took another 20 years for me to identify my main triggers, which were fluorescent light and some smells (inc paraffin, petrol and some paints). Avoiding those, and taking Topiramate, massively reduced the frequency of attacks and they stopped altogether after menopause.

Oddly, 16 years later, I've started getting visual migraines: no pain or vomitting, but just the aura, and a much stronger aura than I had before. I'm seeing the GP about that in a couple of weeks.

This reminds me of the time I was referred to a consultant urologist about my recurrent and persistent UTIs. I got absolutely nothing from the appointment other than a mansplained lecture on how I should position myself correctly on the toilet when I have a wee and that would magically solve all my problems. He didn’t want to know anything about how long I had suffered or how they almost never respond to antibiotics. I ended up just managing somehow until for some unknown reason they vanished.

I hope you have better success with Dr Ahmed at Hull. A friend of mine has had a couple of appointments with him for similar reasons and has found him very helpful. It’s incredibly frustrating though that patients are the ones who have to push so hard for proper treatment 🙈

@sunshine7981

I would highly recommend getting a private consult with a consultant at the national neurology hospital in London - they are outstanding there and it is possible to be moved onto their nhs list after a private consult

That's really interesting as when I went there in 2011 and had a really poor experience (the Consultant just wasn't interested in me).

I've taken everything over the past 18 years. All of the drugs possible. Then nerve block injections, then botox. The botox caused issues with my neck, which I didn't know could happen. A couple of years ago I found regular physio on my neck and acupuncture to be more beneficial. I'm recently pregnant and can't do anything at the moment, so just having to suffer.

My husband waited months to see a Neurologist to help with a worrying set of neurological symptoms. She listened, sound very encouraging and proactive and then wrote to his GP to say that he had migraines and would benefit from some 'health psychology' input.

He didn't have migraines, he has Myasthenia Gravis. She missed it entirely. We have little faith in Neurologists now.

I have hemiplegic migraines randomly for over 20 years now. I can go ages not having any then they pop up at times of tiredness and stress and I think cheese and chocolate can also trigger them. I have removed floral smells from my life completely and that helps. I am at home off work today because of multiple during the night and now face a meeting due to absences due to this and other health issues. I am quite looking forward to the discussion over how work can reduce my stress as due a mix of health issues I can't take the medicines recommended for hemiplegic migraine.

You are entitled to request a second opinion. See if you can get seen by a migraine specialist neurologist (not standard). Explain to them why you felt this approach to assessment was unhelpful.

Stress is massively linked to migraines though, which makes sense given the part two years have been some of the most stressful to most people. His communication of his clinical reasoning sounds poor, but sounds like he's hinting at non medical intervention being the most likely to make changes (most likely very accurate). However he has communicated this appallinglyz I'm sorry you didn't feel heard

That's crap.

I went to Occupational Health for my migraines. The building was being redone. I spent an hour in a room with insanely bright lights with constant drilling. Also, I tried to distinguish between the minor migraine that I get pre-period (which I can deal with no problem) and the sustained ones caused by stress. Got ignored.

(my GP took one look at me wince going into her room and got up to switch the lights off - love her)

One thing I can recommend is seeing if you can get a referral to the Liva programme OP. My usual nurse appointment got taken over by the locum nutritionist, who happened to be eager and willing to refer me to the programme for a few issues.

It's a programme that's run via app facetime appointments with health logging, and they give you a very holistic, unified approach to improving lifestyle factors,starting with sleep and carrying on through nutrition and toxin exposure.

I consider myself more than averagely informed, and I learned so much about how your body responds to different things, and how taking a whole body approach reduces the micro-triggers that can build up to a migraine.

@EleanorDeCleaner

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.

Have you ruled out sleep apnea? My relative had horrible migraines on waking and it was cause by sleep apnea.

My DD is 14 and is suffering with frequent migraines, (some weeks multiple migraines, other weeks none), she has been on various medications, some have worked others no effect, but those that have worked have had awful side effects. The GP has now taken her off the medication and referred her to paediatrics. She only has triptans to halt the migraine.

For those of you that have used toprimate, how long did it take for the side effects to wear off. This was the most effective treatment but the side effects were nausea, dizziness and loss of appetite.