Migraines... and everything else to go with it

[ljbrad]

I've suffered from chronic migraine for nearly two years now. It came on suddenly after a holiday. I have been refused ESA which is very stressful, but after countless medications found a combination that lessens the number of severe attacks each week and helps a little with the depression I am suffering, but it still leaves a constant pounding headache and 2-3 serious attacks weekly.

Neurology have reffered to an MRI I had taken a month before symptoms started but haven't done any other tests.

Mostly just here to vent but if anyone has any advice id very much appreciate

have you tried acupunctue. it is the only thing that cleared mine. Need a few session in a row and then have top ups.

I haven't Booop - 2 reasons
The cost is somewhat prohibitive - trying to live on £60 a week isn't easy, plus im needle phobic

both good reasons! I hate needles but don't mind acupuncture. so much thinner than injection needles. Look for a multibed clinic they are sometimes really cheap (but probably not if in £60). Offer to do some help at the clinic in exchange for treatment. I did babysitting in exchange for treatment for a while.

Thanks, it is something I will look into, there is a local skill share I could check, i believe there were some therapists on that network, but yeah would require a lot of bravery!

You should be able to get acupuncture on the NHS. I did, several courses, via physiotherapy.

What medication have they had you on? What lifestyle changes have you made so far? What's helped? What hasn't?

Thanks Silver

As for meds its been a long list, some of the ones i can bring to mind: epilim(sodium valproate), sumatriptan, asprin, amitriptyline, duloxetine, venlafaxine, propranolol, topiramate... all with very little success - it is feeling a bit like im a guinea pig.

I'm currently on mirtazapine and candesartan although I've read I shouldn't be taking my rizatriptan melts with these... so need to check that with docs.

Is any of it related to hormones, I only get migraines with PMT

Have you considered a Darth piercing? My sister in law had it done and worked on her migraines. She was similar to you. X

Sour - it seems unlikely, I've been on the same minipill for 5 years now and never had any problems, so there were no changes or anything that seem likely to have triggered it.

Standing, this is something I have had mentioned - however pinching that spot makes no difference - in people I've spoken to this always helped them before they had the piercing done, but thanks for the suggestion

I think you can self-refer to a migraine research clinic in London, if you have intractable migraines.

I found acupuncture triggered mine, for some reason, so do bear that in mind!

NICE actually recommends Vitamin B2 (riboflavin) at 400mg/day, you'd need to take for 3 months at least before seeing much effect. Also Co-Enzyme Q10 has some evidence for its efficacy, though less than for the B2. Magnesium in some people too.

There's some weird magnet tech, TMS, being trialled too, which is supposed to be effective. Think the London clinic is testing. www.nhs.uk/news/neurology/nice-approves-migraine-magnet-therapy/ Don't get tricked by all the magnet wrist bands etc though, I don't think there's any evidence for them!

Daith piercing is a load of crap. There are lots of threads about it on here. That's said, it can't hurt to have it done and just enjoy a nice piercing! Wait until after your MRI though as you'll have to remove it for that.

Definitely consider changing your pill. Again, anything is worth a go, especially where migraine is concerned.

Triptans are contraindicated with about everything, I wouldn't panic, the doctors never seem to worry!

Have you seen any physios for occipital release methods? Helped me through some of my worst periods of pain, but didn't cure anything long term. Worth a go for some relief. Again, NHS.

I have had chronic migraine for many years. Like you I have tried lots of tablets and they didn't work.
I just have Botox by the neurologist now and use a vagal nerve stimulator. It doesn't get rid of them but makes things more manageable. I'm pinning my hopes on the monoclonal antibodies coming out to be honest.
In terms of other things you can do. I assume you're already following the neurologist guidelines of taking absolutely no painkillers (not even paracetamol) as they can cause rebound headaches. No caffeine (not even chocolate), lots of water.
How is your sleep? My neurologist advises that if you're having broken sleep that this can worsen migraines. Do you have restless leg syndrome?

Whilst some of mine are hormonal, or related to flashing lights or missing meals, a large number seem to be triggered by stress and my back injury (had migraines before the injury, just more now). Keeping the muscles in my neck, traps and sub-occipital relaxed is key - most days as I feel the muscle tension building I use a hot wheat pack on my neck, and that seems to help avoid or postpone the migraines.

I'm also fortunate in that I have an excellent private physio who unblocks my neck every time it gets stuck.

I also regularly take 5 minute work breaks to do some gentle neck yoga and upper back stretches at my desk, again to keep the muscle tension at bay, as that triggers the migraines. Youtube have some good short videos if you google desk yoga+neck etc.

Pollaidh I live in scotland so I don't think I'd be eligable for this clinic.
Am at docs next week and will ask about B vitamins :)

Silver they seem reluctant to do any testing so I don't think I'll get another MRI. It is a pretty cool piercing though :D

I have considered changing pill, but every other one I have tried has left me with horrendously heavy and painful periods so I'm not sure if that's a good idea - will keep in mind though.

I saw a physio - 4 or 5 appointments but they said there was nothing they could do.

I'm not taking any painkillers (apart from a week after oral surgery) so it's not that, have tried cutting out caffeine, wine, dairy - none of which seem to help unfortunately.

Sleep isn't great - often made worse by the headaches. I do what I can to practice good sleep hygeine - no restless legs, just struggle to drift off with the pain.

I do get neck and shoulder tension and stretch often - sadly I can't afford private physio. Will try to use a heat bag more often

Have you looked into other non-drug approaches?
Here is a nice review article: link.springer.com/article/10.1007/s13311-018-0623-6
Of course, check with your doctor before starting any new protocols.

ckc45d10 have you any idea who I would approach for something like this?

@boux, I'd like to know more about the vagal nerve simulator please?

I find sitting with my feet in a hot bath and ice on my head relieves the pain. This was a tip on MN - OP, you could try searching the archives here if you've got time. I also eat a couple of leaves of feverfew every day: I bought a plant from Wisley Gardens and it now self-seeds in the garden.

My main problem is that my migraines come with stormy weather.

I have hormonal migraines. They are like clockwork starting about 2 days into my period and last 72 hours to the dot.
I'm not on the pill or any form of hormonal contraception. I'm going to try taking riboflavin as recommended above.
I'm convinced that mine have something to do with a chronic neck pain as well and I'm going to try some Pilates to see if this helps in any way.
Chronic migraines were discussed on Woman's hour this week, you could download the podcast, they talked about a new treatment that is going to be available in the next few weeks.

Niska, I'm slowly reading through

Thanks Ella, I will have a look at this and download :)

@ljbrad
Check out the info in the research article link I sent. You may check out looking for a provider who practices functional medicine: www.ifm.org/find-a-practitioner/
Hope that helps!

I offer you a hug as I have chronic stroke like migraines which have been constant in my life for over 7 years, however sometimes like this moment I have the stroke-like symptoms without the head pain.

As you mentioned you are on a budget - www.severe-headache-expert.com/manage-migraine-on-a-budget/

www.severe-headache-expert.com/ is the full website and I highly recommend this Dr, its who I see by good luck on the NHS and he has specialised alongside his neurology practice in this and speaks at neurology conferences on migraine.

If you sign up to the website you get a free pdf copy of "is my headache dangerous?" and you are signing up for free messages on helping you manage your headaches better. You will receive a series of emails designed to help you. No purchase necessary. -

just copied and pasted that from the site. When the course of messages is finished you won't get any more messages and I promise you there is no spam from that site.

I still have migraine but it hasn't been for not trying to treat mine, I have sporadic hemiplegic migraine which crosses over another condition so I am pretty complex as in general population 0.01% are affected and women are 3 times more likely to be affected than men so with the crossover I am a tricky case but that Dr does everything possible to help so highly recommend him and the site is all free and you don't need to buy the book

He tries to do himself out of a job actually