AIBU to ask how you cope with severe migraines?

[G0ldenLeaves]

I know this isn't the correct place to post this but I'm posting for traffic as I'm really anxious and hearing from others helps calm me down.
I'm a long term migraine sufferer. Been on 50mg Amytriptyline for a year and take Rizatriptan when I have an attack that I can't wait out.
Occasionally I have those killer migraines where the pain is so bad that in the moment I'd rather die than feel it any more and have been in hospital 3 times in the past because they were so bad I was convinced I was having an aneurysm.
I now get really bad anxiety over migraines. As in fear of getting one and fear when one starts as I'm terrified they'll get really bad again. I have a 4 year old son who has Autism who is with me every day so if i get an attack, lying quietly in the dark isn't really an option as his care needs are so high.
Rizatriptan usually gets rid of the migraine within an hour but I've now had one since yesterday afternoon and nothing is touching it. I've taken paracetamol, ibruprofen and one rizatriptan but the pain is just getting worse and worse. At the moment it feels like the left side of my brain is going to explode. I can't stop being sick and the pain is going down the back of my neck so any way I try to lie is uncomfortable. I'm trying really hard not to panic and to just try to stay calm and wait it out but the pain is so bad I just want it to stop.
Can anyone tell me about how they manage their migraines or how they cope with an attack? I know its silly but I just get so anxious when I have an attack and I can really work myself up into a panic but hearing from others with the same helps to calm me down a bit. Thanks.

I'm so sorry you feel so unwell. They are unbearable. I take sumatriptan as soon as I get symptoms and then cocodamol half an hour later. If I can, I lie down quietly but I will always stay away from screens and/or reading, they make it so much worse.

In terms of lifestyle, I can track when I'm more likely to get them as it's normally the week after my period. During that time I avoid triggers like alcohol and as a diabetic, try to keep my blood glucose steady.

I hope lots of people are along to suggest other things to try soon.

Sorry to hear you are going through this, I know exactly how you feel.
Have you tried Migraleve? These tablets have literally saved my life.
As soon as I feel one coming on I take two pink Migraleve tablets and 9 times out of 10 it stops it.
One the rare occasion it doesn't work I take 2 co-codamols and have a 3 hour nap with the fan on me, the cold air really helps I've found (or a really cold bath)

Seconding elle087, I do find it helps to be in a coldish room.

I take sumatriptan and cocodamol if necessary. "Cool and sooth" gel strips help too across my forehead. I look like an idiot but I don't care. Agree with a coldish room too if possible. Hope you feel better soon

A monthly shot of Botox. Its a life changer

I have tried migraleve but found it didn't help but that could have been because I took it too late so nothing would touch the migraine.
Before I started amitryptaline as a preventative medication, I usually found my migraines would be triggered if I cut down my refined sugar (starting a diet for instance) or if I missed a meal, I'd normally get one starting around midday and be in full force around 2pm. This was before I had my son so I would just go and lie down and sleep until the mirgaine went away. Obviously I don't have that luxury now so I contacted the GP about starting a preventative to manage them but I've noticed it has changed my migrines so now I quite often wake up with one in the morning and trying to sleep it off won't work so they can go on for ages.
I have a gel pack that I put in the freezer and then strap around my head which helps a little but really this is one of those really bad ones that just won't budge.

I’m in a similar situation as you regarding the anxiety surrounding the attacks. I don’t have the pain terribly bad, but I do get aura, so the blind spots/missing vision, slurred speech and confusion. I too worry about being with my two children (especially out and about) and suddenly not being able to look after them properly. I take Propanolol twice daily as a preventative method and sumatriptan when I get the first signs. The propanolol seems to help as it’s also used for anxiety. Some days I get so anxious about the possibility of getting a migraine that I probably bring it on myself from all of the stress and worry. Kills two birds with one stone.

Aaaargh you poor thing. They are the worst pain ever. I have to keep away from screens completely once I get the slightest tingle, and I've found that the biggest trigger is crying.
I am not at all woo but was willing to try anything, and I had my daith pierced a few months ago. The result is really odd- I get all the weirder symptoms of a migraine- visual disturbances, numbness down one side etc- but very little pain and no sickness. This is probably just a placebo effect but placebos are very very effective.

I took a course of topirimate as a preventative after seeing a neurologist. It was amazing.

The side effe ts were horrible to begin with, but eventually they subsided. I had to take them for 6 months with no symptoms. Then I was symptom free for 2 years. I know this doesn't help you now, but ask your GP for a referral to a neurologist.

In the mean time, have you tried coke? Red coke. Something to do with contracting the blood vessels that lessens the pain.

Hope it goes soon.

Food diary. www.fedup.com.au/factsheets/symptom-factsheets/headaches-and-migraines

Also, DM would track the weather forecast as she found changing air pressure would be a trigger, too.

Thank you for the responses everyone. I've requested a call back from my GP to see if I can get a referral to a neurologist as this is something I wanted previously but had to try a preventative medication first. I don't know if you can take two triptans within 24 hours so will ask about that as its beginning to get impossible to take care of DS.

Just last night I had a medical revelation... 35+ years sufferer here. Didn't want to take usual nasal spray - which does work but feel a bit airy fairy the next day and a busy week on... Dh had invested in some new first aid kits this year. And inside was an injury freeze pack. Bash the package to activate it type. Set it off and put in inside my pillowcase. Moulded all around the side of my head where the pain was. Worst side for me - usually harder to shift.. Pack lasted 2 hours. Am able to function today albeit a bit tired. Am amazed!! Will be ordering a few more ASAP. Worked out about £2 a pack. Well worth it.

I feel your pain OP I eventually got referred to neuro after trying lots of things with my GP and trying food diaries and elimination etc and not finding any triggers. Things that have had me migraine free for 2 years:
*venlafaxine and propranolol for prevention
*2.5-3 litres of fluid per day (hydration is so important )
*HIT (high intensity exercise) a couple of times a week and some fresh air every day
*magnesium and b2 (riboflavin) supplements
It was neuro who recommended all these things after several trials of preventers did nothing from the GP I also got a coil as my cycle was horrendous and regulating it also helped massively. I recently had an MRI and I am awaiting further follow up from neuro following that so will let you know if any other advice comes my way!

I take Asda's own migraine tablets. Sumatriptan and migraleve don't touch them. The last migraine I had I thought I was dying, it was awful so I sympathise. Sadly the only thing that truly helps me is lying down in a silent, dark room for a few hours

Have you tried propranolol? It’s a beta blocker which has really helps prevent mine and also manages my anxiety. I also went to the optician and got glasses that are tinted and filter through all blue light. The prescription level is very low but they have really helped me function when I feel one coming on.

There’s an old wives tale of putting your feet in hot water and putting an ice pack on your head and neck that can help release prevalent migraines. I’ve tried it a few times and it has worked well to ease some of the pain.

The only thing that has helped me is Botox treatment every 3 months! But aspirin is your friend, I swear my anadin extra!! (Suggested by my neurologist).

I completely sympathise my migraines make loose the use of my legs and speech so I understand how debilitating they are! Xx

Keep going back for different medication, there are plenty to try.
I also find a double espresso helps.
I have the same issue with missing meals, so if planning to eat less I have to gradually reduce portions/ shift meals later by a little per day rather than making a drastic change.

Oh also to echo PP a can of full sugar fizzy drink and aspirin!

I get them now and then not always a lot more around this time of year. For me it's the flashy Christmas lights that do it!

Yes you can take 2 triptans in 24 hours. Make sure you’re on the max dose too. (I’m on Imigran nasal spray - which comes in 10mg and 20mg, so I always ensure I get the 20mg one).
I’ve had migraines so bad I’ve ended up in A&E on morphine. My specialist prescribed my ‘synthetic‘ morphine (Tapentadol) for when, like you, I have those killer migraines and the triptans don’t work.
Good luck, and hope you feel better soon.

I’ve suffered with hemiplegic migraines since age 8. I think dm thought I was going to die the first time I had one it was that bad.
I’ve been through all the various treatments and not had much luck.
Pizotifen to prevent was most successful but I still had breakthrough migraines
It’s horrible you have my sympathy sorry I can’t offer any advice x

I used to get horrible migraines in my 20's I'd throw up and the pain was horrific...

I went to an osteopath and also had acupuncture on and off for a few years as they were both based at my workplace.... also discovered oranges and chocolate set it off to

What an absolute wonder!!! I've never had one since... I get headaches from alcohol usual stuff but nothing else!!

I'd highly recommend you find a good cranial osteopath to start with.

Ugh they are so horrible!!! Mine are nearly always triggered by lights, either strong or flickering. I get the awful aura and unless I neck all my stash of painkillers (2 ibuprofen, 2 paracetamol, aspirin and an emergency 60 of codeine) I feel like I’m going to die.

I used to have horrible anxiety about them but what helps me is remembering it WILL pass. Slow, deep breaths and some fresh air can help the panic.

I think what makes them even more evil is that one persons miracle cure won’t touch someone else’s pain!! It’s frustrating to hear how Botox or a daith piercing made a huge difference to some people when feet in cold water etc didn’t. I hope you find what works for you OP

I had a phone consultation with the National Migraine Centre about a month ago and it’s been life changing for me. You can refer yourself, it’s a charity so you give a donation of how much you can afford.

Since I spoke to them I’ve added Magnesium, it has to be over 600mg, Riboflavin 400mg and Co- Enzyme Q 10. She, also, suggested a probiotic called Migraea but I’ve not started that yet because I take probiotics any way and have a big pot to get through.

She suggested that at the start of an attack to take 900mg of soluble aspirin and 1g of soluble paracetamol in a fizzy drink, alongside a Triptan.

I’ve suffered with migraines for years, have had loads of Botox, preventative medication and acupuncture but these changes have been the most effective. If I do get a migraine (I had one this morning) they’re not as severe and don’t last as long.

I've had a migraine every couple of weeks for the past year and nothing helped. I've tried triptans, codeine, oxycodone and while the painkillers might help the pain, they don't help the sickness or general awful feeling.

Then I tried CBD oil and my migraine didn't last very long at all. A couple of hours as opposed to 2 days. So then I started taking CBD oil every day in capsule form and I haven't had a migraine since! It's been about 6 weeks now without one and I can't believe it. I told my friend who also has chronic migraines, though hers were multiple times per week, and CBD stopped hers too! Shame it's so expensive though