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.

You asked about topiramate, OP. It gave me back my life the second time I tried it. The first time I quit owing to the side effects. The second time I slowly worked my way up to a pretty hefty split daily dose and I cannot express the difference it has made.

I went through the tertiary NHS Neurology Unit at Salford Royal after ineffective care closer to home. My intake exam was incredibly thorough. Follow ups were routine and quick but I have no complaints. Discharged to my GP recently with plans to stay on the topiramate indefinitely and an open invitation to return to Salford if necessary. Migraines over 90% reduced so very pleased.

No I haven't actually @Hankunamatata, and it is a good fit - I have a hefty BMI of 38, and DH says I scare the shit out of him at night sometimes because I stop breathing for what seems like ages apparently.

I ignored that because he's a bit deaf and I thought I was probably breathing quietly.

But I rarely sleep for more than 5 hours in total and I wake all the time. I thought that was DHs snoring, I sleep better when he's not there!

But - the headaches and migraines started in 1995, and my BMI has ranged between 24 and 38 during that time. It's definitely increased - weight and headache frequency - with menopause though.

Sorry OP, I meant to say good luck with the 2nd opinion. The first one sounds awful.

I am intrigued by Topiramate but nervous about side effects, I already have dizziness and nausea with the migraines so that would be no fun. Wouldn't complain about weight loss obviously...

So building up from a low dose could be the right approach?

Thanks @Queenie8, next appt is 7th April - booked it today! Will try not to get too hopeful this time.

Sorry to hear about your daughter, an old friend of mine had the same with her teenage daughter. Last I heard they were trying botox for her.

Totally shit, but not surprised as I had a similar experience with a female migraine specialist. I expected more understanding & knowing what tests I should have to rule out an underlying cause. Nope, I got sent away with 3 different chronic headaches diagnosis & toted she'd be prescribing me a drug that I'd just said & was in my notes that I'd reacted badly too

Go see your GP, ask for thorough testing for pernicious anaemia
Ask fir a scan of your neck to check if nerve damage could be causing your headaches. See a dentist to see if that's a cause too. Maybe research to see if there's anything else

Years down the line mine is caused by pernicious anaemia, disc damage in my neck linked to PA & a dental problem causing the trigeminal neuralgia bit. I'm worse too this last few years, turns out I'm grinding my teeth due to stress... stressful times we live in Osteopath, b12 injections, magnesium. Complete B vits & a blow up neck brace for times I've aggravated my neck.

Daily Feverfew helped my & DDs migraines for years. DD now has a Daith piercing & hasn't had a full blown migraine since

This is EXACTLY like my neuro appointment about 6 years ago. I went it with my migraine diary under my arm, excited to finally be seen by a specialist and left feeling shit. I had the lecture on sleep hygiene and was told to cut out dairy which I did, for a year. Didn't help a bit.
He told me a diary is a waste of time too. He said triggers can cause a migraine much later than we think. I still keep one. I find it helpful.

I felt like yet another woman with headaches.

Since then, I have seen a great GP at my practice and have changed to topiramate. I started on 25mg and felt awful but after a few weeks was able to function again. I'm on 200mg a day now and down to maybe 7 migraines a month. I was having 4/5 a week.

I also take CBD.

Keep on at your GP. Something will work. Good luck.

I had a really bad experience with a neurologist who diagnosed me with something I didn't have the symptoms for, when I said "even though I don't have the symptoms?" he mentioned something else instead, but even the letter came it was the original (wrong) diagnosis. He also said there was something on my scan that might be life threatening, but that he needed to write to a colleague for advice and he'd write to me. I still feel damaged by the experience and I wish I'd complained. Turned out he'd missed something else on the scan too when I changed hospitals because of my experience. It's shit. There don't seem to be many female neurologists either.

Hi, OP and @Queenie8 -

Because I had not tolerated topiramate the first time, I started on 25 mg once a day which I think is half the usual starting dose. I increased the dose by 25 mg at a time and sometimes stayed on a dose for a double period, if I was having side effects. Now the only side effect I have on 300 mg/day (split) is occasional tingling in my fingers and toes and a bit of dry mouth. I can even drink a moderate amount of wine, which I could not the first time.

I’m sorry, I don’t remember how long it took for the side effects to go away the first time.

My neuro also mentioned that Botox is very effective. If topiramate fails me I will likely look into that

@poetryandwine I started that way too. Really really gradually. I take 100mg twice a day now.
I remember carbonated drinks tasted awful and I started mine one Christmas. I was convinced the bubbly I was drinking was off.
The weight loss was a welcome side effect but unfortunately I seem to have got used to that one.
I also had a touch of vertigo but that passed after a few weeks.

PS Best wishes for your appt, @EleanorDeCleaner and for your DD, @Queenie8

Wonder if you have the same neurologist as I saw (privately and on NHS) when I had a seizure.... mine had a pinpoint stare and was really dismissive, unhelpful and patronising.

I know topiramate is controversial because if the side effects, @Idratherhaveacuppa, but it is incredible when it works isn’t it? I am so glad I went back to it .

OP, I think you are right and for me at least it was all about going very slowly. I took many months to reach my full dose and probably spent a double period on an interim dose more often than not. But I started to get some relief early on, more as the dose increased.

Hi OP I had a similar terrible experience recently with the National Migraine Centre who charged me £300 to tell me to eat more vegetables. I have had debilitating migraine for over 60 years. Tried everything. At the end of the 'consultation' the woman asked me for more money!

BUT she did tell me about Prof Ahmed at Hull. So I had a chat with him a month ago and he immediately prescribed the new cgrp inhibitor so waiting for this to arrive (well he forgot about me but hopefully it will arrive soon). There are a few facebook groups about this new treatment so may be worthwhile joining one or two?

Interesting @SugarMiceInTheRain! He was all of those things although he wasn't at all rude, he was quite pleasant while he was repeating things I've heard and read and tried many times. I braced myself for him to be blunt about my weight but he wasn't (even if he was biting his tongue). But he just seemed so bored and impatient like he's sick of his job and I wasn't very interesting. This was in Lincolnshire. The pinpoint stare was fascinating, he didn't seem quite focused on me.

My GP has suggested Topiramate before, but at the time I was on the waiting list for a call from The Migraine Centre - GP advised me to start a diary and we agreed that we'd see what The Migraine Centre came up with as I'd need to keep a diary for 3 months anyway.

When I did get a call from them I hadn't realised it was going to be £300 so I declined @Saturatedfattyacid! Sounds like I dodged a bullet.

Things improved a bit in December so I stopped keeping the diary - but deteriorated again at the end of Jan so I started the diary again and went back to the GP to just get referred to a specialist once and for all and get it sorted under my insurance.

Glad to hear good things about Prof Ahmed. I had no idea about those new drugs! I'm busy trying to remember if I would qualify as having three failed preventatives, I'm not sure I would. I've been on propranolol for years, amitriptyline was discontinued, and sumatriptan/rizatriptan were of minimal help. They're not really preventatives though are they...

Sorry to hear he was so utterly useless. The LIFE diet might help you. www.google.com/amp/s/www.news.com.au/lifestyle/food/eat/plantbased-diet-eliminated-mans-migraines-research-claims/news-story/89c9c66323937c31d00c6176f3f7e7bb%3famp

Interesting, @Grapesandapples. My migraines did improve a bit when i went vegan for a while, but it also became apparent that it's not just soy that triggers my episodes, but pretty much all beans & lentils. I wasn't having any processed food after the first couple of weeks (I bought a couple of boxes of falafel type things to start off), but no quorn, textured pea/vegetable/whatever protein, no seitan. I also discovered that avocados are a problem sob. Likewise miso, sauerkraut & kimchi. Also nutritional yeast. The link between all of them is the tyramine content. I can tolerate a splash of soy sauce occasionally in a stir fry, & can use about a quarter the recommended amount of a stock cube, but I found veganism wasn't for me as there are no viable protein options.

I buy organic meat etc now & my migraines have improved (a bit) compared to when I was vegan. It's a pain though as I have to travel 20 miles if I want anything more interesting than chicken, eggs or milk.

But, looking at that link, ot doesn't seem just to be about eliminating animal products, but also about eating lots of antioxidant containing foods - dark green leafy veg for example. I will definitely try to do more of that, I like my vegetables but sometimes I get lazy & just eat whatever is quickest. Especially if I'm feeling rubbish. Meal prep is not possible on a low tyramine diet unless you have a big freezer.

With the topirimate, you start of on a small dose and have to build up over weeks to the max dose. Then you stay on the max dose until you are symptom free for a period of time (6 months I think) and then you come off them slowly, the same way you built them up. The side effects were hard, but they didn't last. Once I'd worked through the side effects period, I was fine.

Like I say, sorted me right out. I was diagnosed with vestibular migraine, clerical migraine and some weird arm migraines! All gone. Touch wood.

I’ve only seen two specialists in the last 10 years and they were polar opposites.

The first was some kind of general surgeon to remove a small lump from my leg. His office was like going back in a time machine. All wood paneling and I swear I didn’t even see a computer anywhere! The doctor was an strange, elderly guy who examined me in a room with old equipment and said he didn’t know what the lump was but it needed to be removed. He might have been perfectly competent but th whole setup gave me the creeps and I ended up getting my GP to remove it.

The second specialist was a dermatologist for some hair and skin issues. I was having some hair loss and was embarrassed about it she couldn’t have been lovelier. She gave put me straight onto two medications and told me my prognosis was excellent. (My hair has grown back now by the way).

If it doesn’t feel right go with your gut.

Just to update the thread - it's my 2nd opinion appt tomorrow, and I actually feel kind of nervous.

Maybe I'm just wasting everyone's time? It's been 23 years of endless headaches but I'm not as bad as some. I average about 10 headaches of varying severity every month, but some people have it far worse.

I just want a definitive diagnosis so I know I'm getting the right treatment. And I'd like to be listened to, not fobbed off.