Living with migraines

I’m interested in your experiences…

My wife has regular migraines, to the point that we have had to cancel so many things over the years and has a significant impact with work.

They’re with auras and just completely knock her out for the day and she the recovers for 2 days after.

Tomorrow we have a posh restaurant booked in London for a boozy lunch that was a present to her for her 50th from our kids. She has spent the day really looking forward to it but worried. We went to the pub for our Friday night drink, got home then boom, out of nowhere she gets a migraine!

I’m gutted for her! Tell me she’s not alone, how do you manage?

Alcohol is a common trigger. I was particularly bad with some beers and discovered that there’s an enzyme produced in the malting process if barley that is linked to migraines. Switching to cider or whisky helped.

I rarely get one these days but they were a lot more common when I was stressed at work. Well, they were actually worse when I took time off work – as if the reduction in daily stress was a factor. Many’s the holiday I’d suffer from a migraine for three days

Mine followed the same pattern – no visual aura, but a sensitivity to sound. Then the headache, then I’d struggle to make coherent conversation, then the nausea. Timing was like clockwork and it would be 60 hours from onset to being completely clear.

Temporary relief was found in vigorous exercise, so out for a run, ride or even a walk up a steep hill.

Thankfully, I wasn’t affected by light and I’d mostly try to carry on life as normal as that was more distracting than shutting myself in a dark room.

I tried various medicines but Migraleve would usually knock it down to a liveable level.

Other than trying to reduce stress and keeping a good/drink diary to help identify triggers, I’ve no specific advice to offer.

I was similar for a while. I had a fairly stressful period of my life and would often get a migraine on Mondays which was my regular day off. I stopped getting migraines when I was single for a year. I found it was usually a combination of triggers that would give me a migraine. If I had alcohol when stressed or very tired that would do it. Also too much chocolate. I very rarely have them now, I’ve stopped drinking but that wasn’t a big deal, I find it harder to avoid chocolate but I’m ok with it in moderation and again I try not to have any if I’m really tired or stressed even though that’s when it’s most appealing. A friend who’s a GP and runs migraine clinics suggested coke or coffee and paracetamol if I feel one coming on. I’ve also learnt to try and get out and get some exercise and fresh air helps me. Sometimes the headache lingers but it’s manageable. I rarely do the lying down in a dark room as that makes them worse, I’ll only do it if I wake up with a really bad one and I’m incapable of getting up. Good luck trying to work it out. I’m lucky I don’t get them too bad and I’ve almost eradicated them.

thanks.
interesting thoughts on alcohol. She doesn’t drink much, maybe a bottle of wine a week.
she also gets the speech issues and is sometimes sick, so you never know what you’re going to get!

Exercise, she’s found the running seemed to trigger them, as did yoga, and outdoor circuits, basically anything! This is something she’s really gutted about as she enjoyed running especially!

we’ve not found a consistent trigger! But she does have an underlining neurological condition which doesn’t help.

I get them pretty often. Main triggers for me are stress and over-tiredness, too many carbs/sugar, excessive artificial sweeteners, poor hydration, and lack of sleep.

If I’m lucky, it’s just the aura and losing vision for an hour or so, worst case that followed by a pickaxe to the head and a headache for a few days.

I have Sumatriptan for treatment, but I rarely use it as it often makes me feel worse. General when the aura comes I take max dose paracetamol and an hour later ibuprofen and head for bed in a dark room to try to sleep through it, as I get really photosensitive.

Had them on and off for the last 20 years.
I tend to get them in batches, maybe 6 months without and then I’ll get several over a few weeks. Aura, reducing my vision to just periphery, then a feeling of dissociation followed by numbness on my left side then a headache that feels like an SDS breaker in my head for hours. Then the next day or so I feel wiped out.
If I can get some codeine and paracetamol down my neck in the first 25-20 min, along with a dose of caffeine (which I don’t normally have) it accelerates the progression through the symptoms which saves me a few hours of misery.
I’m rarely sick luckily.
Triggers for me seem to be low, flickering light (like the sort you get through trees or hedges in low angle sun conditions. Also the period after a stressful time, so just after a work deadline, or a day off when I’ve been really busy.

My mum suffered from migraines for years, turned out it was neck and back issues setting them off. She gets regular physio now, and they’ve subsided.

As most above really

Used to get regularly, now tends to be in batches, then nothing for a while.

Could never pin a definite trigger but likely hormones, tiredness, stress (tension in neck/shoulder/back)

Signals can be things you’d not imagine, but of fuzzy head, being unsteady, jibber jabbering and even yawning lots the day before. I’m sensitive to smell just before also – degreaser or GT85 I can smell about half a mile away 😏

Recognising warnings can mean catching them before they hit

After much going round in circles with GP, I find triptans although can make me feel sleepy and woozy, if caught right can stop a full on attack within 15 mins – if not a tablet and paracetamol and Ibuprofen as necessary

The after affects, a migraine hangover can last a couple of days but I can function and at this point I eat loads! Usually carbs and all the food!!

I’d suggest going to the docs and pushing to try some medications. Don’t just let them ignore it as ‘women trouble’ and don’t let them ‘try the pill’ as an answer…

NB yes, I am a woman

The trigger for me is the release of stress –  if I’ve been very stressed eg with big work deadline – then after I deliver I can get a migraine alongside the release of stress.  Also just being very tired from overwork or over training.

The impact for me isn’t as bad as for your wife, but I was prescribed sumatriptin which I take as soon as I get the aura starting.  It much reduces the symptoms and the neurologist said that it stops the symptoms becoming an ingrained response to the migraine triggers

I was prescribed sumatriptin which I take as soon as I get the aura starting

You’re not supposed to take it then. You have to wait till the headache comes.

https://www.nhs.uk/medicines/sumatriptan/how-and-when-to-take-or-use-sumatriptan/

How to take or use it
Take your first dose as soon as the pain starts. Do not take it at the warning stage, before your migraine starts. This is when some people get symptoms of aura. 

A bottle of wine a week is actually a fair chunk (abut 10 units). Not “problem drinking” but a long way from teetotal.

If migraines were impacting my life that much I’d certainly try cutting it out (and probably caffeine) completely for a while, see if that helps.

This is what is says in my packet of sumatriptan. And the Neurologist said to take it as soon as get the aura. I am not a doctor though. Interesting that it is different to the NHS advice, and Mayo clinic as well.  I’ll have to look into why this is different

I have no experience of migraine but I wanted to say that from my perspective a bottle of wine a week is considerable. I am not teetotal, but very low intake. Maybe a couple units a week absolutely max.

Edit as per the captain above

Ive also binned caffeine, made a massive improvement in stress levels and in particular anger. I’ve accidentally had a tea and it is very powerful, always amazes me how I used to drink so much

I get the aura, then nausea and headache. Have been sick a few times aswell if I don’t get migraleve into me. Migraleve takes the edge off but still worse than just a headache. Takes a day or two to recover, feels a bit like a hangover for a couple of days. For me it’s stress and dehydration which are probably the main triggers. Aspartame used to trigger them aswell so have cut all sweeteners out now

My sister has said the same about aspartame.

FWIW if I get the visual aura, it doesn’t lead to the headache/nausea phase and passes after a few minutes. I’ve tried to explain it as everything looking like one of those sliding puzzles where you have to move tiles around to make a pattern or words.

I have had them off and on. Went to a physio once when I was so sick I put my back out. She fixed my back then also did things to my neck that reduced them in frequency and severity for a few years.

Two years ago I moved away then started getting 1-3 dayers every month (and yes, I’m female and they were completely in line with my  hormone cycle). Then I had to start losing some weight because I broke my ankle and sat around putting weight on for three months. To my complete surprise and delight I’ve not had one since I started counting calories. I’m not sure whether it’s calorie restriction or eating less of something accidentally as part of the diet (I have just eaten less not cut anything out completely).  It’s weird but so welcome.  If anyone has any explanations pile in… anyone else I would say try it if you’re slightly over a ‘good for you’  weight.

Get her to visit her GP. If nothing else the recovery drugs may help. There are now several replacements for sumatriptan which don’t seem to have the same side affects. I only get them occasionally but can floor me – usual associated with tiredness/stress – but I find Rizatripian works for me a lot of the time and I generally can function again within an hour. Unlike many of the comments above, alcohol isn’t a trigger for me and caffeine often helps (this is well know and can be advised to take recovery drugs with a small coffee). For some people these can be triggers, but don’t assume it’s the same for everyone. My Mum has chronic migraine – more than 15 days a month. She does quite a lot with the migraine trust, and I’d really recommend looking at their website https://migrainetrust.org

Chronic migraine sufferer here, often 14-18 a month. It’s shit. I literally feel your pain (currently sitting here relishing the triptan side effects)

Finding triggers can be really hard. I’m currently excluding alcohol, chocolate, and caffeine. Which is all great. I know that three triggers of mine are riding bike, alcohol, and sex. What an absolute **** riot

Main bit of advice is don’t give up. I found I really, really needed to push to get anywhere on the NHS – keep a migraine diary of days, severity, and medications taken.

I had a lengthy battle to get anywhere, with GPS not taking it seriously, and at one point even a referral to IAPT for health anxiety as opposed to migraine treatment. There are lots of drugs available through your GP – reactive (triptans) and preventative. I’ve been tried on eta blockers, Candesartan, amitriptyline, and antihistamine (!)
I believe you need to try three preventative medications through your GP before you can get a referral to a Neurologist.
After that a lot more treatments become available.

More than happy to chat about my experience, drop me a message if you want. But I absolutely sympathise, it can be awful, and there’s only so much of being dismissed that you can take.

Oh, and regarding triptans -advice I received from multiple neurologists was to take them as soon as you can. You get to know your warnings, and find the sooner I take them the quicker they work, and the fewer the side effects.