Migraine Advice

[margaretta]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

The hospital requires me to keep a migraine diary and I have done for years.
Keeping a simple migraine diary is the fastest way to the right treatment.
For me all I keep now is a daily pain score (1-10) and if I have taken any meds and if it was my period.
What it will show is if there is a pattern to your migraine: how often you get them, how intense they are, what meds you take, and if you get them at the same times of the month etc.

If you go and see a migraine specialist the first thing they will ask is if you keep a migraine diary. By keeping one already it will speed up your access to the best mediation.

 

[SamKe]

what did the eye test flag up? X

raised intercranial pressure Would have been fine if my gp had taken my worries seriously

 

[da1sycha1n]

I have suffered 2 types of migraines for many years one kind deffo linked to menstrual cycle sure as fate i d get the most horrendous headache I would be chalk white along with waves of nausea followed by my period starting about 12 hours later they would last for about 2 days, if I’m honest I did feel ruled by them for many years I could although now I’m in the menopause thankfully they have dissipated and now when I do get the odd one deffo not as severe there taking 2 paracetamols along with 2 ibuprofen did help ( and lying down with a hot water bottle clamped to my head also I used a fore head stick it didn’t take it away but did offer a little respite
I also from time to time suffer from auras Iall of a sudden get a flashing oval shaped halo in front of my eyes i find it’s triggered by direct sunlight or bright lights as soon as the flashing starts I take painkillers and have to lie down because I know as soon as the flashing stops the pain starts

 

[oogling]

I suffered terribly, triptans were the only thing that helped I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain

Wheat is my trigger for migraines! I had brain scans you name it, a friend suggested food allergy/intolerance test, I thought it was rubbish but was so desperate…wheat and dairy off the charts…wheat gives me massive debilitating migraines, dairy buggers my stomach and makes me vomit!

 

[knivesnflowers]

when i went to see a neurologist for the first time since being discharged from paediatrics and had paaaages of notes i printed from migraine buddy for the six months previous, he couldn't care less. i was there for chronic pain but migraines were on my record and both meds controlled by that dr but he was genuinley surprised that i'd even bothered. always advocate for yourself though, i will never regret playing an active role in appointments.

 

[Dancing_in_the_dark]

The migraine trust has a template of what most neurologists want for a migraine diary that can be downloaded. I have to keep one as I’m currently in treatment for chronic migraine along with another neurological disorder. You get used to filling it in but it will help getting the right treatment if you are all ready to go when you speak with a dr

 

[Chickenandgravy]

I suffered terribly, triptans were the only thing that helped I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain

 

[TwooTwooTwitTwitTwoo]

I’ve been so snappy with my OH this week and when I told him I was getting a migraine earlier he was like “Ahh! So that’s why you’ve been a bitch lately”. He’s probably picked up on the pattern before I did

He sounds like a keeper!

I find the depression bit the hardest these days because I'm not depressed day to day (anymore) so it feels very sudden. I have to fight to tell myself in the moment that I don't really feel this way and it won't last forever.

In a weird way, I'm glad the mood change issue appears to be an actual thing because sometimes you feel like you're going mad. Whilst I don't want others to suffer, it is nice to know I'm not alone.

 

[bcfc999]

I started propranolol almost 4 weeks ago and I've only had one migraine since then which was about 4 days after starting them. I was having one a week before then so I'm quite chuffed with that

I love my propranolol! Started it a couple of years ago and have only had three or four since, whereas I was having at least one a month before.

 

[Justreading]

So I don't think what I had was migraines as such, from things I've heard mine definitely weren't as severe. But I would struggle with severe headaches weekly, usually on a Friday/Saturday after a full week of work. I'd get to 6pm on a Friday and I would have a headache behind my eyes making me exhausted, couldn't stay awake and nauseous thankfully never dizzy and I could carry on with life albeit struggling.
I did get the daith piercing, I had it on a Saturday while suffering and the relief was almost instant! I do still get these headaches but no where near as often, maybe every 6 months or so and usually after a tough few days of work rather than just a normal week.
I didn't see a GP prior to this as it was nearly always manageable with paracetamol, now they're far less often and always manageable with painkillers so I'd say a massive help!

 

[Starfish13]

I would recommend magnesium supplements alongside the prescribed preventative meds. Since I started the supplements last Oct I’ve had far fewer migraines. It might be a placebo but it’s working for me!

 

[bcfc999]

Was fine going to work yesterday, but once I got there I had aura without migraine which I didn't know was even a thing? That lasted about an hour as I took sumatriptan straight away. I then had an awful headache all day, felt achey all over and really nauseous. Still haven't recovered I'm now out of sumatriptan but apparently I picked some up from the pharmacy last month as my prescription was collected... God knows where they are but I could do with having them to hand.

 

[bcfc999]

My migraines have got more frequent over the last few months and I'm not sure why. I started a new job a few months ago but it's the same amount of screen time and less stress than the previous one so don't think it's that. I take sumitriptan to prevent them and it does seem to work if I have advance warning but it makes my body feel like lead and makes me so tired. Sometimes I don't get any warning and sumitriptan doesn't seem to have any effect then. I've started using Migraine Buddy as someone suggested but I can't see any triggers or trends.

 

[Cameforalook]

Omg this! I once had my old boss say to me now try not be sick with a migraine Monday ? I was like sorry I can’t pick and choose what days it will come on . She repeatedly kept coming back well don’t do anything over the weekend what normally brings them on so insensitive as if I would bring one on intentionally people really don’t get it . Sorry for my rant lol but I’ve suffered around 15 years now and recently started taking Imigran (sumatriptan) and it’s worked for me straight away x

I find the lack of understanding around migraines both from the professionals and from family/friends/colleagues who don’t suffer from them so disheartening. Even after al these years some people really close to me think they are headaches.
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[oogling]

I suffered terribly, triptans were the only thing that helped I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain

My migraines are directly related to wheat!!! When I was younger I thought it was just period related, but as the years went by it got progressively worse…the drs couldn’t figure it out, eventually a friend pursuaded me to have an allergy test! Wheat give me instant migraines, cow dairy (lactose) makes me vomit! At the time I was told I may eventually be able to reintroduce these things later in life, 25years later having a take away and getting glutened AND dairied, I can categorically state I cannot reintroduce them!!

 

[LifeOfMog]

Sorry to hear you are suffering. How often are you taking Naproxen?
Doesn’t Naproxen fall under the NSAIDs category? Which means if you take it too often it will make your migraine worse and trigger cluster headaches and rebound headaches.

I appreciate it’s really difficult but cut your use of all Nsaids (paracetamol, ibuprofen, naproxen etc), go cold turkey and keep a migraine diary. It will speed up your treatment when you see the neurologist because the first thing the neurologist is likely to do is tell you to stop taking the naproxen and everything else, keep a migraine diary and they will see you in 3 months time when they can see it isn’t a medication overuse headache.

This is probably not what you want to hear right now and i’m not a doctor, but it is the best option, especially as you said yourself you’re starting to get cluster headaches. Good luck.

Thank you so much for this!

So I've been recommended naproxen twice a day, which doesn't seem to be doing anything I can't lie, and I have only been taking them for the past 4/5 months so before that I was cold turkey.

Funny you say that the naproxen might be triggering them as since I have been taking them, the headaches/ migraines have been lasting longer and also so much more painful! I have a call this afternoon with a triage doctor / pharmacist so discuss what changes I can make while I'm waiting for my appointment from neurology xx

 

[CatCafe234]

I used to have them years ago but thankfully haven't had one in a while (touch wood!).

Up until last year, I'd get a massive headache (not a migraine) every Saturday morning; I put that down to it being my body releasing all the stress of the working week. Since I got my daith pierced (which I did in the hope that my hearing would improve [it has helped]), I've found that I only get slight headaches when I'm under pressure or haven't had my daily coffee.

The only drug I found that would help when I used to get migraines, was Mersyndol (https://www.medsafe.govt.nz/consumers/cmi/m/Mersyndol.pdf), but they'd leave me feeling really hungover for days afterwards (no headache, just drowsy and nauseous).

We have those in the UK, sold as Syndol. I find them brilliant for migraines but they seem to go in and out of stock all the time, which is irritating (also you have to be careful as the have codeine in so you can only take them for a few days at a time, max.)

 

[uncleted]

After my migraines have increased in frequency and severity and I've needed my sumatriptan dosage doubled to even begin to get rid of one, I'm starting propranolol as a migraine prophylaxis this week. Anyone found it useful?

The pharmacist said it is a much nicer option than topiramate as a preventative drug, and reading this thread, I can see why!

Yes propranolol helped me a lot. I’m going back on it because I’m overdue my Botox. Yes so much nicer than topiramate. I would actually recommend against it almost and I hate to do that because it could work for someone else, the side effects were horrific. Propranolol did make me a bit more tired but also helped with my anxiety. Hope it works out for you
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I've suffered with migraines for years and years, it's hormonal as its always when I'm due on. I was prescribed Sumatriptan in January, it does get rid of the Migraine but it makes me feel drunk, unsteady on my feet, I feel spaced out and they make me violently sick so I can only take them before I go to bed to try and lessen the effects slightly. I work full time and have 2 children so I have to pick between the Migraine and it's effects or the tablets and their effects. I need to call the doctor and ask for something else, can anyone help with what else they may prescribe and what their effects are please?

There’s a few other triptans that you can try, rizatriptan and eletriptan I believe. I’m hearing a lot of people have negative reactions to sumatriptan for some reason. I get chest pains, a sore throat, and dizziness. Rizatriptan worked better for me. I now take Ubrelvy (I’m living in the states atm) and it’s better than any triptan in terms of side effects.

 

[zetta buttons]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

I did at the start. It made me realise that drinking/weather/certain types of exercise/time of day and year were all implicated. I know it’s a pain but it gives you some control back.

 

[SamKe]

I’ve had migraines for a long time,tried lots of medication and was on Botox for a few years which worked.I’m currently injecting myself monthly with ajovy which worked but I feel it’s stopped working as well so I’m going to try and get back on Botox,