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.

You will find more reading here. www.fedup.com.au/factsheets/symptom-factsheets/headaches-and-migraines

Cutting alcohol, cheese and chocolate is reducing some amines but perhaps not far enough. www.fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/amines#reports

I suffer from chronic migraines and chronic tension headaches as diagnosed from a neurologist at a headache clinic after suffering from daily headaches/migraines for 2 years. I'm on amitriptyline at night, I also take magnesium and see a chiropractor. Not sure which one is working or of its a combination but the 3 of them have worked wonders and I'm down to 1/2 a month. Changed my life.

Thanks for the advice everyone - lots of good ideas to try. Sorry so many of you are suffers as well - it’s just miserable.

There are a lot of things that can be a trigger, including a whole host of different foods.

I'm currently on pizotifen which a pp mentioned. I find it helpful but it also has an antihistamine effect and I have mild allergy issues creeping on me so that all may be related?

Please get a referral to a neurologist - there's lot of different preventatives to try, triptans are just an abortive medication and don't work for a significant number of people (me included, sob). I've personally tried amytripiline (zero effect on me, not even side effects), topomax (horrible, not convinced it did anything good), gabapentine (turned me into an idiot, I think, or something, I remember telling the docs there was no way I was doing that again), pregababline (didn't help migraines but helped a lot of nerve pain so I stayed on it for a while anyway) was offered an occipital nerve block (apparently something different to Botox) but became pregnant and wasn't allowed it. There's lots I haven't been on as well, so fingers crossed you'll find what works for you but you need a headache specialist to know what's out there!

Good luck, it's fucking miserable.

I was put on propranolol which seemed to stop the cycle. I was supposed to be taking them longer term but weened myself off it and they haven't come back like they were.

Another chronic sufferer here. Sometimes I can get 3 in a week.

Triptans did originally work for me, but then stopped working. Dr suggested it could be that my digestion was stopping with the migraine so I just wasn't absorbing them properly. She switched me to a nasal spray triptan (Zomig) and that does stop them in their tracks. I think the trick is it gets absorbed very quickly.

Could it be that you're just not absorbing the medication enough for it to work?

Zomig does leave me feeling fairly wiped, but I can carry on and I tend to sleep well that night.

I hope you can find an answer, OP.

... just to add. Seeing an osteopath regularly has helped. My triggers seem to be stress/tiredness and hormones.
I hold the stress in my neck and shoulders, so having them regularly seen to seems to help. Sometimes I can go 2 weeks without but then frustratingly get 3 in a week... but I am definitely getting them less often than I used to.

Cervical spine for me too. I now have a routine of daily natural walking (no bag/backpack, arms swinging naturally) and nightly stretching for head / neck / shoulders, plus some acupressure points. Huge improvements.

Agree with pp a nasal spray triptan could be worth trying. My digestive system basically stops when I've got a migraine so tablets have no effect or I vomit them straight back up. Nasal spray zolmitriptan has been life changing.

Have you tried changing the Amitriptyline dose? It's the only thing that helps me but it took a while to get the dose right.

Other thing that helps if you don't get vomity with your migraines is 3 x 300mg dispersible aspirin in water at the first sign of symptoms. Doesn't stop mine in their tracks but can help to reduce the severity.

I've also got an eye mask with water beads in that I keep in the freezer. If I can't shift a migraine it makes the horrible bit where you lie in bed unable to move slightly less unbearable.

NICE guidelines here: cks.nice.org.uk/topics/migraine/management/adults/

Supplement guidelines here: migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/ (my neurologist helped write this guidance).

You may not qualify for a neurology referral if you've only been on one preventative medication. There are many options - amitryptiline is one, but it's not the best and surprised they went for it first.

Also: nortryptiline, propanalol, topiramate (if you're prescribed this, be very alert to the side effects, it's pretty awful stuff for some of us) etc.

Acupuncture can be given on the NHS - I've had two courses.

I'm now on monthly CGRP injections after umpteen preventatives failed including a couple of years of 42 Botox injections every 12wks under neurology.

If one triptan doesn't want work, there are 7 options. Ask your GP for an alternative.

Codeine shouldn't be used for migraine due to the exceptionally high risk of medication overuse headaches and your GP shouldn't be prescribing it for this without massive warnings and monitoring. I've had to do 3months with no meds at all and it was hell on earth coming off all the painkillers cold turkey. Never again. Also something neurology will make you do if there's the slightest hint of medication overuse, especially with opiates.

I have both daiths pierced - nothing changed. I use a Cefaly daily - it's nice to use in an attack for a distraction for a hour, but that's about all it does for me.

I've done every bloody diet, every exclusion regime, FODMAP, you name it - no triggers identified.

Alcohol, overheating, strong perfumes and bright light are my main issues. I wear green Migralens sunglasses outdoors most days and have had a colorimetry assessment so I also have pinky orange tinted glasses for shitty glarey office lighting.

I have ice packs, rollers and head ice caps filling a shelf in the freezer.

You name it, I do it. Unmedicated I'm up to 27 days a month of migraine even with all the other supplements, Cefaly etc.

On my CGRP injection, I'm down to a max of 5 attacks per month. 5!!! It's given me my life back.

I am so sorry to hear your problems - it is miserable I know.

I have vestibular migraine which impacts on my balance as well as head pain.

I take propranolol (beta blocker) - slightly problematical as I need a different beta blocker for a heart rhythm problem and can't take two different ones at the same time.

I also take 75mg of dosulepin (an anti-depressant) a night.

If I am zapped by a bad migraine I take half lorezepam and go to bed and sleep it off - when I wake up it has gone. But not many GPs will prescribe these - I confess that I am using some old ones of my OH's.

Prevention is important I think and I eat no hard cheese, no alcohol, no caffeine etc. etc.

Anther aspect of prevention is avoiding stress and this is in many ways harder to do than avoiding certain foods. You imply that your job is stressful and that this cannot be changed - but it might be worth revisiting this. If your job is implicated in your migraines and they are as bad as they are then I do not think that job tweaks or even change should be off the table. You cannot spend so much of your active life feeling so shit.

I switched from Amitriptyline to Noratrypline and that worked well for me, it has less side effects too although one of them is short term memory loss.

I will take that over no (well a lot less) migraines though.

I was having them very regularly recently. Mine are acute confusional migraines with psychotic symptoms. I do get visual auras but also ideas of reference as triggers.

Fingers crossed, been migraine-free since 1st Nov and that was emotional stress triggered & I could nip in bud.

Here’s what works for me:

Prevention:
Good diet, don’t miss lunch,
lots of water (dehydration a trigger),
Lots of rest, preferably good sleep
No alcohol or other drugs
Not too much driving

Cure:
I was on rizatriptan (Maxalt) which has mint oil & which you suck but my GP said this was too expensive & gave me Sumitriptan.
I bought mints in tin to have instead.
Caffeine & paracetamol & LOADS of water when they hit.
Lie down with pressure thing over eyes
I normally vomit so small snacks which don’t have “that thing” that triggers me

My food triggers:
Some cheeses, especially mozzarella on pizza
Crisps in particular roast chicken, prawn cocktail
Orange juice
Big lumps of protein: tuna steaks, pork
So I’m vegetarian & try to follow wholefoid diet.

Migralens are brilliant. If you work on technology a lot then try glasses with a blue light filter (goodlookers do them without prescription if you just need the filter). Things like the kool & soothe strips and 4head can help. As can full
fat coke + aspirin.

I was told that codeine causes rebound migraines by my neurologist so you end up trapped in a nasty cycle and then have to wean yourself off of the addictive bastards

Folate! I have the MTHFR mutation and cannot handle folic acid. Stopping that and taking folate instead has seriously cut my migraines down by 80%. Side bonus of fertility testing so not something I expected.

@AvDemeisen

I have chronic migraine. I'm on Ajovy now but over the years I've had: amitriptyline and nortriptyline (anti depressants), pizotifen (no idea what that is, was awful) propranolol and candesartan (blood pressure meds) topirimate and lamictal (epilepsy drugs).

Frovatriptan is the longest acting triptan, up to 24-26 hours, but takes 3-4 hours to start helping, so good for hormonal predictable migraines that last days.
Sumatriptan is the fastest acting, and shortest efficacy and strongest side effects.
Rizatriptan is fast acting, comes in a tablet melt wafer thing, less side effects.
There are other triptans but these are what I've tried!
My neurologist recommends at first sign of migraine to take a combination of triptan plus antisickness plus caffeine plus anti-inflammatory or paracetamol.
Naproxen is the best painkiller for me, or diclofenac, but I can't have them now as I have IBD.

Sorry, this is a huge post! Migraines are absolutely miserable, and GPs are not always aware of the different treatments. I would push for referral to neurology, and to a specialist headache neurologist.

This could be me. My migraines always come on at night while I'm asleep which means I cannot take triptans - plus I have terrible side effects from those I have tried. I have tried all the other meds mentioned here apart from lamictal and am still on topirimate but the side effects are not great and the migraines are horrendous. Have tried cranial osteopathy and had acupuncture on NHS. No botox but I do get nerve blocks injected into my head which help for a few weeks. Agree that you should push for a neurology referral through your GP. There are new treatments coming through all the time and I'm hoping to be on a forthcoming trial. Fingers crossed.

Meant to add I'm curious about Cefaly and also about daith piercings. I gather they take a long time to heal though and I'm also a total wuss. I spend too much of my life throwing up and in pain as it is to want any more!

I would also echo those who have said to consider hormones as a trigger. I am 45, I was prescribed the mini pill and beta blockers. I started with the pill and that worked well enough so didn't need the beta blockers. I still get occasional migraines but they respond to triptans thankfully. I also take magnesium supplements. Good luck!

I suffer badly with migraines. I recommend you contact the National Migraine Centre in London. They changed my life.

Firstly she said to take this. It’s got the magnesium, Vit B2 and CoQ10 in that you need altogether. I’ve given up caffeine completely unless I get a migraine when the first thing I try is 3 soluble aspirin and 2 soluble paracetamol in a glass of full sugar coke.

I have Botox, however my headache specialist refused to give it to me until I had stopped taking codeine for a while because it’s a known trigger for headaches and migraines. As a result of me stopping taking that we actually found out that all opiates cause my migraines. I have chronic pain, so I stopped my Tramadol too, and my migraines decreased a lot. If I take even the tiniest bit of codeine now I get a really severe migraine

I take Amitriptyline, Gabapentin, Topiramate, and Bisoprolol (that’s for my heart but it helps) which do help. The migraine centre changed my Triptan from Sumatriptan to Naratriptan which suits me much better because the side effects are less.

I, also, take a good Pro Biotic because there’s a link between gut health and migraines. Acupuncture has helped me a lot in the past, however the lady who used to do it has moved away so I’ve not been for a while.

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.

Have you tried cutting out caffeine? Too little or too much sleep can exacerbate migraines. Try making sure that you get 7-8 hours sleep every night and no lie ins longer than 9 hours.

The National Migraine Centre are amazing. You can self refer. Appointments are online at the moment so you don't need to be able to get to London. They are a charity and don't receive NHS funding so they ask for a donation of £240 for an in depth consultation and £160 for follow up appointments but the fee is waived if you can't afford it. Most private healthcare policies will cover the cost.

www.nationalmigrainecentre.org.uk/becoming-a-patient/

Try a low dose propanalol (i.e. half the tablet of the lowest dose possible - 5mg daily). It doesn't work for everyone, but for me it's been a game changer and has gone from daily, low to mid level constant headaches with occasional runs of hideous days to 99% headache free.

I have chronic migraine, usually over 25 days per month. Have failed on one anti-CGRP and are trying another. Isn't working yet though.
I've tried a lot, but not Cefaly - that'll be next.

I suffer from cluster headaches and read about this which is for migraine as well: www.gammacore.com/

Don’t know anyone who has tried it though and my GP hadn’t heard of it.

Hope you find something which helps and you feel better soon x