Endless sodding migraines

[Gosports]

I’m about at the end of my tether with bastard migraines that don’t end. The only thing that gets rid of them is codeine, and I don’t want to be taking that as often as I do.

So far my doctor has tried supplements (magnesium and vit d), triptans (didnt work) and I’m currently trying amitriptyline (so far not working). I’ve had a scan at the hospital so I know it’s not a tumour.

I’m going to call my GP again next week to see what else I can try, but I thought it might be useful to know what other options are out there. Has anyone found anything else that worked for them? I’m so tired of living like this.

I have never been able to identify a trigger but the frequency has definitely and steadily increased as LED lighting has become more common.

Get referral to a regional headache clinic
Keep a headache diary for four weeks before
Contact migraine Trust
Look into cgrp errenumab ajovy etc
Other preventive can be tried but get headache neuro referral

Those of you who have tried amitriptyline, what dose have you found is effective? My GP told me to take 10mg to start with and then each week go up by another 10, and 30mg should be enough. Maybe more would help?

I’ll definitely be giving the National migraine centre a call - my GP is really understanding but maybe isn’t offering the best treatments.

[quote AvDemeisen]@friskybivalves
Have they offered anti- CGRP injections? It's been life changing for me, I have Ajovy. I'm down to 8 days of migraine a month from 24.

It's given me back so much time. It's horrifying to think of all the days we lose to migraine.[/quote]
I have PM'd you...

@LegoCaltrops

I've had progressively worsening migraines for the last 19 years, I've tried various prescription & OTC medications, for the last 4 years I've been on botox, topiramate, magnesium & a high dose or vitamin B2, which help but not enough. I don't (can't) take any pain relief. Recently I decided to go (mostly wholefood) vegan. It's helped massively, I've gone from 15-20 days to less than 4 full days of migraines per month. And they're much less severe. I still need to avoid eating too much soy, as it's one of my triggers, but I can actually eat more soy now than I could when I was eating meat & dairy etc, as the migraines are so much improved. I didn't go vegan for migraine control but it's been an enormous benefit I wasn't expecting.

It's very interesting to read all the posters who have tried changing diets and so on. How long does it all take to show a result, and what did you drop first? And also, how do you have the patience to tell what is actuallly having a beneficial effect? because, tbh, 'm in such a muddle and fog with my migraines and the various treatments that I can no longer see the wood for the trees. I don't know what's helping or hindering. I don't know if I'd be feeling even worse if I wasn't on my meds, or if i'd actually feel better if I just shelved the topirimate.

I can't work out if i'm also getting those headaches you get from taking too many painkillers – but if I try to do without pain meds, life is impossible anyway. I know that I get migraines when I'm tired. But then some of the preventative medication I'm on has broken sleep as a side-effect. I'm depressed because of the migraines, but topirimate also makes you feel low, as did - in my experience - propanalol. So I suppose what I'm saying is that I have long ago lost sight of what 'normal me' looks like.

Sorry - all garbled as I'm also trying to work (and stave off the terrible twanging above my right eye that tells me that, yes, hello migraine my old friend. you've come to talk with me again.)

[quote AvDemeisen]@friskybivalves
Have they offered anti- CGRP injections? It's been life changing for me, I have Ajovy. I'm down to 8 days of migraine a month from 24.

It's given me back so much time. It's horrifying to think of all the days we lose to migraine.[/quote]
Dd has similar results on ajovy but has some facial pain

Mine are infrequent now and tend to be less severe but I sympathise with all the sufferers.
Stress for me was a major trigger, and food. You could try keeping a food diary to see if there are any food triggers other than those you already avoid.

I take candesartan daily not sure it actually helps. But have Sumartriptan to take as I feel one beginning. It works, but I still go through 10 or 12 Sumatriptan each month.
I also get the visual migraines in between, but once my eyes clear I have no pain.
I'm tempted to try the Botox or Daith piercing. We''ll see. I can bring on a migraine with chocolate, so I avoid. Very mature cheese too.

I rarely get them but only thing that works is Relpax, cant get in uk...only a quarter of a tablet and its gone...amazing stuff...i buy when i visit turkey as cheap and in the chemists.

@friskybivalves I identified quite a few food triggers back when I didn't have so many migraines, I used to get 3-7 days a month at the most. Until a few months ago I thought my main triggers were caffeine, artificial sweeteners, MSG, soy, blue cheese, nitrites/nitrates, & something in certain sweets such as Haribo (I don't know what it was though, I just avoided them like the plague as that last couple of times I had Haribo it was so bad I genuinely thought I was having a stroke). Most of them were pretty obvious, I'd have some of the food & get a migraine within a couple of hours. If I wasn't sure I'd stick to completely safe foods - rice/potatoes, a few vegetables I was confident of, & just try one suspect food.
However I'd never gone completely vegan. It was obvious within a couple of weeks of turning vegan that it was making a difference. It's been a couple of months & I'm seriously thinking if I carry on improving I'll be able to look for work. I lost my job several years ago & have been on PIP since then.

I do eat some vegan convenience foods - I had sausages tonight made of pea protein - but I don't eat them regularly. I mostly eat the sort of things you might expect a vegan from 30 years ago to have eaten.

Daily candesartan reduced the severity and frequency of mine. Keep trying different things OP, I nearly gave up so many times but it’s worth persevering!

I meant to add also, I have previously tried Candesartan. Unfortunately I have naturally low blood pressure & although it helped with the migraines, it lowered my blood pressure so much I was fainting most days, intolerable.

@friskybivalves
It's very interesting to read all the posters who have tried changing diets and so on. How long does it all take to show a result, and what did you drop first? And also, how do you have the patience to tell what is actuallly having a beneficial effect?

I don’t know how I discovered that changing my diet helped, but I ended a relationship in August and went vegetarian around the same time. I kept a rough food diary, too.

I noticed I was having them if I forgot to have lunch, and if I have excessive caffeine. I don’t eat chocolate much but it’s def a trigger, especially the “good” stuff. God my stomach goes just thinking about that.

My migraines are def linked to my gut. I have a lot of food intolerances which I tend to ignore (greedy!) but I stopped ignoring so much.

My routine is wake up, hot drinks or water until midday, lunch is pasta with courgettes in summer, or plain eggs with toast, spinach, avocado, or a green salad made from spinach, raw broccoli, peppers (sometimes these trigger me though), spring onions, home grown herbs & walnuts with some cottage cheese.
Dinner is something like sweet potato curry or aubergine tagine (I’m sometimes mildly allergic to aubergines though, salicylates I think), risotto, or gnocchi with homemade pesto.

If I need pudding, it’s chopped banana or cooked down berries with plain yoghurt & honey, maybe a few nuts & cinnamon.

Might sound a bit boring but it really works well for me. I saw a massive difference.

Someone said upthread their triggers for food, mine are same:
definitely Haribo
also Pringles bloody knocked me - sour cream & onion ones bleurfg,

some crisp flavourings.
I reckon it’s the MSG.
Soy sauce
Protein-rich foods.
Tofu sometimes.
Some flavoured yoghurts
Rich chocolate things
Milk - I don’t drink much but in lattes & chai is def trigger.

I think I just need a fairly plain diet. Not boring, just not too processed.

low dairy helps a lot!

Really interesting about diet. I'm going to try avoiding meat to see if that helps me. Definitely being dehydrated triggers one so consciously trying to up my water intake. I've been on HRT for some years now and know if I talk to my GP about migraines he will say come off the HRT. Which is not going to happen.

I have suffered since I was a child with migraine, and they are generally hormone related but can be triggered by a late night, strong smells, alcohol, cheese, chocolate too. What is working for me is candesartan daily and then sumatriptan when I have a migraine. This combination has definitely reduced the frequency and severity of them. I tried Botox many years ago and it didn’t work for me.

@earsup Relpax is just eletriptan. It can be prescribed by your GP. It's available in the UK, but it's prescription only.

I used to suffer terrible migraines in my 20s and 30s (now in my 60s) but there wasn't the same medication options then as there is now. But the thing that helped me most was going to a kinesthesiologist (hope I spelt that right) who identified all the food types that I was negatively sensitive to. Also she identified positive sensitivity foods too.

Sensitivity is not the same as allergies but they still do weaken the body and affect it in many ways.

I cut out caffeine and tannins also all crisps as those 3 things were instant migraine triggers for me. I also cut out all oat products that were also a trigger, but slightly less so than the first 3 things.

Within 6 months I was down to an average of 1 migraine per month whereas before it had been almost weekly, and then after a few more tweaks as a result of follow up visits with her, I cut out a couple of other things and within another year I was having less than 1 bad attack every 3 months or so.

I am not saying it works for everyone but kinesthesiology really helped me. Might be worth giving it a go OP?

Good luck, I know just how debilitating and miserable chronic migraines can be and hope you improve soon.

Thank you so much to the posters who came back with details of their food triggers and apologies for not responding before. Such bad migraines I haven't been doing much on screens.

I'm intrigued by the Haribo (something to do with good colouring?) and also MSG. I always thought garlic is a trigger for me but now wonder whether its actually that restaurants where I go which use garlic also are heavy with MSG...

I rarely eat red meat and left to myself would stick to vegetarian food mostly through laziness.

Interesting about sweet stuff. Apparently the body can crave chocolate etc when a migraine is coming on so people think it's a trigger but actually it's the other way round. I used to find myself hoovering a whole bar of Cadbury's Caramel until I felt totally sick (not usually a weakness of mine) or cramming down a packet of wine gums (again, can't stand them usually) and then a migraine would come on half an hour later. I'd castigate myself for being such a bloody fool when in fact my brain had already been in the grip of the migraine force (according to my neurologist). I found that fascinating. Almost like a pregnancy craving. I've now learned to walk away from those particular surge cravings.

That’s interesting - I also crave sugar and crunchy carbs when a migraine is starting. Is it not better to give into the cravings? If that’s what the body needs to feel better?

I remember my mother having migraines when I was a child. There was always a can of Guinness in the fridge for when she felt one coming. Never ever knew her to touch alcohol apart from when she had a migraine

@Gosports

That’s interesting - I also crave sugar and crunchy carbs when a migraine is starting. Is it not better to give into the cravings? If that’s what the body needs to feel better?

Well so often it doesn't make mine better...so my brain is sending out the wrong signal, if you like. But for others, caffeine and a Coke does do the trick. I guess the message is that those who think sugar is the trigger might need to check it isn't the brain saying desperately - I can feel the migraine already on its way and this is my way of sending out a distress signal.

My ex used to eat chocolate when migraines were coming on. Until he'd been prescribed Amytriptiline for depression then it also killed off his migraines as well.

Do you drink diet soda ie diet coke or diet Pepsi??? Aspartame, the artificial sweetener, can be a big trigger for some migraineurs (me included) I used to drink lots of diet Pepsi and the migraines were soooooo bad. I cut the fizzy drinks out completely and the migraines reduced considerably. I now also use migraine patches (from To Better Days) in conjunction with triptans and the migraines are over more quickly and I don't get the post migraine run over by a truck feeling doesn't occur now. Hope you find your answer soon! Xxx

How old are you, Op? I started getting horrendous migraines pretty, much every few days, when I went into perimenopause. Declining oestrogen can cause blinding migraines. Tried behind the counter meds and then triptans from GP with no success whatsoever.

Have been on HRT six months and have only had two migraines in that time - both times 24 hours before my period. It's made a huge difference....