Anyone else under a neurologist for migraines/headaches?

[ElphabaTheGreen]

If so, how hardcore is s/he about omitting caffeine and pain relief?

My neurologist, who is a highly esteemed, widely-published headache specialist, is adamant that consumption of both must be absolutely nil, in any circumstance, if you get migraines. He even tells patients with arthritis and migraines not to take any pain relief, and rely on glucosamine instead (I know where my severely arthritic mother would have told him to stick it).

I'm finding this terribly hard to sustain and am wondering what others do to cope or if your neurologist says anything else. I haven't touched pain killers for over three months now, for anything, so should be well clear of any rebound analgesia headaches and ride migraines out on a dark room with a TENS machine (which, at best, is occasionally better than nothing). Previously, one sumatriptan and a couple of cocodamol a bit later to mop up the tail end of the headache could help me to function. On non-migraine days, the absence of caffeine is grinding when I have a full-time job, a five and almost-three year old and an endocrinal condition which causes bouts of fatigue - I haven't touched so much as chocolate for the better part of a year. The migraines are no better - I get one every one to two weeks, still.

I've been awake since 2:30am this morning with another migraine which is now subsiding but I'm still sick and headachy. I still have to make dinner, put bins out and put both DCs to bed (DH is working away and I have no family support). A cup of strong tea, a bit of chocolate and two cocodamol could make this so much more doable and I might even be able to catch up on Game of Thrones once the DCs are asleep. As it stands, I'm going to haul myself through my jobs, sobbing intermittently, shouting at the DCs and trying not to puke, then collapse back into bed in yet more darkness with that fucking useless TENS machine.

I'm on Candesartan as a trial preventative - propranolol, topiramate and amitriptyline all gave me dangerous side-effects. I'm on the pathway to cranial Botox, but not before he's tried a few other oral prophylactics first which will be months and months more. I've had a nerve block which was pretty horrible, and I became very ill afterwards with something unrelated so couldn't tell if it helped the migraines, but will try it again if he offers it at my next appointment.

All it feels like he's done is take away my coping mechanisms and I don't know how much more of this (or my long-suffering employer) can cope with.

I'd ask for a second opinion and go see someone else!

Oh that sounds fucking awful, OP. Massive sympathies, my DH suffers terribly. He's also fallen foul with employers sometimes, due to frequency of attacks and duration - the Bradford Factor where lots of short but regular absences are worse than weeks off at a time. I'm glad yours is understanding.

If the cure is killing you, and you'd prefer the analgesics to the prospect of months more of this, I think you need a second opinion sharpish.

The problem is, I can't be taking regular cocodamol with my endocrinal disorder (Addison's Disease/adrenal dysfunction), so I have to find an alternative to weekly/fortnightly opiates. Ideally, I'd like to not have migraines requiring pain relief every week or fortnight! I would have thought that pain relief in the short term while trying prophylaxis shouldn't do me any harm, but he's adamant that prophylaxis is far less effective/ineffective if you're taking any pain relief or caffeine.

Second opinion - he's the guru to whom all the other neurologists refer if they can't find a solution. It would be a step down to go to someone else. If I went to someone else they'd probably want to know why the hell I gave up my (very hard to get) spot with the expert.

Massive ice packs? I can't survive without mine. I bought lots on eBay (not from this particular seller) and they are amazing -
www.ebay.co.uk/itm/252824950854. Can also be filled with hot water if you prefer.

I'm seeing my GP on Monday to beg for a referral. I'm back on pizotifen which is helping, but as per last time I was on this it is massively disturbing my sleep and I wake up exhausted. Plus whilst the numbers of migraines are reduced, they are increasing in severity (stroke symptoms).

Also if I'm honest, I'd sneak a coffee and a painkiller on a day like yours and say nothing. But I'm naughty.

Are you allowed anything for the nausea? Does Buccastem do anything for you?

OP,

Just to say you have my absolute empathy.
Severe migraine pain at its excruciating worst is indescribable.

I'll try and post later a bit of detail about my varied trials through the treatment maze, if I get an opportunity.

Meantime (though you've probably explored all options via the Migraine Trust's specialists? Indeed, your current Neurologist may even be one of the following!), I'd try contacting the medical experts profiled on either list below:

(Just because your own Neurologist is extremely eminent doesn't necessarily mean he's the right fit for you as an individual...

After all, there are so many different approaches even within the field, And, assuming you're UK-based, equally highly regarded European (and further afield, obviously) experts who might just suggest what turns out to be your Holy Grail treatment].

Christ, you deserve relief, after suffering so long. .

www.migrainetrust.org/about-us/how-we-are-run/trustees/

www.nationalmigrainecentre.org.uk/patient-care-our-approach/about-the-specialists-and-the-centre/

(When desperate, Migraine Action's helpline is a comfort, simply to speak with someone sympathetic who 'gets' it: 08456 011033, 10am-4pm).

I think I know who you are talking about, if he is in NW England. The caffeine link is bollocks IMVHO. I have botox injections and they have been life changing. I would strongly recommend researching other headache specialists, then asking your GP for a referral elsewhere. I have seen 5 of the country's headache specialists and not all of them are obsessed with caffeine. Feel free to PM

Well it doesn't matter how good they say he is, he is not helping you.
Get a second opinion, can you go privately to someone else?

You have my sympathy. I'm also under the neurologist, have other conditions and terrible side effects to most of the drugs. I've done the no pain relief thing for the last few months and coped OK, but I seem to have quite a high pain tolerance. I get migraines two to three times a week and a headache probably eighty percent of the time. This has been a big improvement for me since stopping the meds.

Two things strike me. It sounds like he is doing things to you, rather than it being a partnership approach. You need to be explicit about the impact his approach is having on your day to day life. Ask him what other suggestions he has, this clearly isn't working for you.

Also, I would experiment. For example, try a month of caffeine but no pain relief and then a month of pain relief and no caffeine etc. Keep a migraine diary and then take them to your next appointment.

I'm increasingly interested in Botox as I hear good things, even if I have to pay for it privately.

I saw Dr Andrew Dowson (think I have his name right). He's a top Headache Specialist. He did not mention caffeine or chocolate reduction to me. My treatment focused on ibuprofen and sumatriptan at start of migraine and option of taking a selection of vitamins each day to help reduce likelihood of migraine occurring (only one I can remember right now is b12 but happy to find details if you want them).

For my migraines I've also found taking a long hot shower helps, suspect the steam opens my blood vessels and improves flow as my ache either lifts (if caught early) or becomes bearable after a shower

I don't rate the cold pack/cold water suggestion that I've seen others say work for them. Does nowt for me. Though I've not tried cold pack on back of neck which is another I've heard of. A warm pack on back of neck would probably be a good one for me to try.

Also have heard of the ear piercing...is it tragem? Meant to help some with migraines but doesn't work for everyone

Thanks Thalia. I'd be interested to hear about your treatment if you have time.

I suspect you've worked out who it is Curbside. Did you keep up with the caffeine and still qualify for the Botox injections? He implies that any intake of either caffeine or pain relief would disqualify me for the injections, but I am seriously considering just lying about it. DCs are asleep now but DS2 was tantrumming from the time he got home until the time he went to bed, and I've never come closer to hurting one of my children because I just felt so awful 😔

I'm so worried about trying any more oral medication as all the ones I've tried have affected my heart, plus the months (I'm guessing at least six more months of this hell) it will take to see if they work or not. I'm wary about being on the Candesartan, because it's basically like Propranolol and is meant to be used for hypertension. A complication of Addison's Disease is unstable BP so I think being on a medication that is actively trying to push it down is counterintuitive, but my endocrinologist doesn't seem concerned so I feel I have to trust them both. I've been on it for about three months now with no significant changes.

He does have a bit of a blanket approach Queen, you're right. But this is unbearable so I'm going to have to get him to bend on something (which I'm pretty confident he's not going to do as I've tried pointing out how unsustainable it is in my last appointment) or lie. Interesting that another headache specialist neurologist didn't even mention the caffeine 'link'. I think I might have had a slight reduction in frequency since dropping the caffeine and pain killers, but I can't be sure it's not the TENS machine which I use daily as prevention (Google 'Cephaly' if any other migraineurs on here are interested) or the Candesartan. To be honest I'd rather have slightly more frequent migraines I can manage, than slightly less frequent which leave me confined to a pitch black room hating my life, threatening my job and making me miss out on, or want to do horrible things to, my children.

Yes I am permitted Buccastem. I feel like I have the stuff permanently stuck between my top front teeth these days.

@ElphabaTheGreen please don't feel that he is the ultimate in headache specialists, he really is not. I gave up on him years ago and paid for private treatment until Botox became available on the nhs. The specialist at Preston does Botox and is pretty personable.

I have also seen the other specialist mentioned on the list. With him I had nerve block injections before swapping to Botox. He was great and I only changed due to moving house.

Before going private I went through the list of drugs that I had tried and decided that over 10 medications were enough. I have had Botox for over 6 years, 1 year on the nhs. I physically could not cope with anymore drugs and luckily Botox works for me.

Oh goodness. My relative is under this guy. Same treatment regime, same "20" page letter full of confusing cut and paste info with 1st line down to 50th line drugs to try.She still has headaches, nausea,neck pain,feels spaced out all day everyday. Not conventional migraine as we know it. None of the drugs you have mentioned have been successful due to awful side effects. Not sure if he will allow the Botox route as she was only on each for a week at most. Cefaly purchased at vast expense. Giving up chocolate did nothing."I will see you in a year" Sound familiar?

Sounds like it pizzicato. His clinics are every three months, but so full that they don't tend to run to time (it's been four months since my last appointment and I'm still waiting for a date, althoughI've been assured I'm on the list for a review). Three monthly reviews are pretty standard for consultants although can feel like an age when you're struggling.

I can't imagine treatment is ever quick for migraines and I understand him wanting to try all of the oral meds first. His clinic letters are essentially for the GP so I appreciate him listing all meds to try so that you can go back to your GP while you're waiting to see him and they can try you on the next thing he suggests. But being left for this long with absolutely no relief is pretty tortuous. It's interesting to hear from others who have had very different advice from their neurologists.

Watching with interest

I had a diagnosis of atypical complex migraine, was under neurology for over 10 years, tried propanolol, which did nothing, topiramate and sumatriptan which both caused dangerous side effects and in the end the neurologist basically gave up. I have multiple white matter lesions, which are believed to have been caused by the migraines as well.

Generally nothing will work on mine, but once they are starting to subside a shot of caffeine, plus anti inflammatories and an opitate like codeine will see them off. It was my neurologist that told me to try caffeine, but only after it was ruled out as a trigger via a migraine and food diary.

Have you had other possibilities for the cause of your pain fully investigated. Eg, things like cranial hypertension are often missed or not even considered.

For me, after years - well dacades - of no answers, we discovered by going private that I have autonomic dysfunction and POTs. Since being on a sinus node blocker to control my tachycardia (that I was oblivious to having until I was tested, as I never felt any palpitations) I rarely have any migraines, after spending mostbof my life having them constantly and lasting for up to 7 days at a time. I've had a killer for three days this week, but my autonomics are all over the place after recent surgery (unrelated) and I forgot a dose of my meds, so that explains it.

Essentially, the migraines were being triggered because of the POTs. Blood pooling in the lower half of my body means it doesn't makes it up to my brain, causing the tachycardia and adrenaline rush on being upright as my heart goes into overdrive trying to push the blood up there.

I'm only mentioning this as, essentially, it means mine aren't migraines at all, which is why traditional migraine treatments didn't work and also why the drugs like sumatriptan had a negative effect on my heart. Starting treatment for POTs has literally changed my life for the better.

If the consultant you are seeing is making you worse and and you are unhappy with him, my advice would be to look elsewhere. He may be very highly regarded, but that doesn't mean he's always right or that he is able to think outside of the box and consider less likely differential diagnoses.

Who do you see? I'm under Professor Goadsby who I'm repeatedly told is THE migraine/headache guy and he's never mentioned anything about eliminating caffeine and certainly not to avoid painkillers.

Hate to say it, but get a second opinion?

I have the nerve block injections now btw and they really help. Also take Topiramate twice a day.

I work in this area.
Just take the tablets and say nowt !

Because you're all a bad influence, I had a coffee and two paracetamol this morning to shake the last of the fug. 'Twas marvellous, and no, they're not getting entered into the 'other drugs' section headache diary

Back on the wagon tomorrow, though. For now. I'll call my GP and see if she can start me on the next preventative he suggests in the absence of a forthcoming appointment. I've had a re-read of his (comprehensive) clinic letters. Three failed preventatives and I qualify for cranial Botox as long as I am 'on a background of complete analgesic freedom'. According to him.

*'other drugs' section in the headache diary

under neurology. I have botox.

my neurologist has never asked about my caffeine intake - its actually very low....and I find in migrane a coke can help in an emergency (i dont drink coffee!)

i am advised against painkillers - to avoid tripping into migraine - and I can't take co-codamol at all as causes almost immediate migrane

i take sumitriptan and am prescribed 12 monthly but no more - and I try really hard not to use more than that

use topamax daily 200mg, tried reducing but within a month migranes doubled

In the last 10 years i've prob tried out 15+ anti migrane meds, which finally allowed me to trial botox once approved where I live. Its incredibly difficult to get on the NHS here....I waited over 2 years to be approved. I even jumped through the hoop of swimming 3 times per week for 12 weeks!

I sympathise.....take the pills and say nothing....get through the day!

@ElphabaTheGreen does he have you fill in the Migraine Disability Assessment Test? He never mentioned it to me, but that is what you complete at every botox appointment. Have a look on the Migraine Trust website, as they've got useful info about treatments.

Yes, I fill one in every month.

I want aware of that form, so have just totted up the approximates for the last 3 months and it's over 28. Glad I'm seeing the GP on Monday now.

How are you today OP?