Anyone else living with migraine misery?

[turquoise88]

I've been living with migraine for about 10 years now, since my late teens.

I feel I've tried most things. Keeping a diary, cutting out foods, over the counter meds, triptans, some preventatives and acupuncture.

I'm at my wits end with being bed-ridden and unable to care for my two beautiful DDs because of these awful migraines.

DH is so supportive but ultimately has to be at work and so do I.

I'm going to call the GP tomorrow and request topramate, which is one of the few things I haven't tried. It's often used to treat epilepsy. Anyone else ever used it? I've also not tried anti-depressant meds, because of the notorious weight gain which will make me even more miserable than I already am.

Any success stories with medication?

The mini pill really helped mine. I've recently had DC2 and am dreading the return of my hormones and the migraines. I will be going back in the mini pill ASAP, it meant I would probably only have 6 a year that meant I was bed ridden.

@managedmis my diet is okay I think. I eat common triggers like cheese and chocolate but I'd already tried to cut them out with no impact. My BMI is about 19.5.

Have already tried mini pill with no effect on them. GP won't give me combined pill due to increased risk of stroke. Also tried implant and again no impact. Well, other than when I had it out again and had a migraine for 10 days straight . It's all led by my raging hormones.

For the PP who said about HRT, I'm not sure how willing a GP would be to put me on that at age 30? Is that a common thing? My mum is on it during the menopause but I'm a bit about it as a migraine preventative (maybe naively so).

Amitriptyline success here, too. I've gone from losing a week a month to what my GP narrowed down to hormonally-driven silent migraine/cluster headaches, to only having 2 so far this year, the second was this week.

When I'm acutely suffering, it feels like my left eye is trying to force itself out of my face and my teeth are working themselves loose, I can't concentrate on anything and all the muscles on the left side of my neck and shoulders tense up, but it usually goes away overnight once I take the amitriptyline. So I don't take them to prevent, only to actively treat, which I think keeps the potential side effects to a minimum.

Anyway, they are absolutely horrendous without treatment, or when it takes a few days to shift them, so I hope you are able to get some relief soon.

I've seen people recommend having a one off private appointment with the National Migraine Centre in London.

I also know of someone who has monthly Botox injections in London (not sure if it's through national migraine centre or somewhere else)

I had referral from GP to the local headache clinic which was run by the very knowledgeable Dr Andrew Dowson...is this something you have requested or could request?

My friend manages her migraines very successfully with high dose of magnesium mixed into water. Have you tried this? It was a neurologist who suggested it.

Thanks for the replies everyone.

I've taken magnesium before with no effect.

My GP practice seems reluctant to refer unless we have exhausted all options, ie they probably wouldn't unless I had tried anti-depressants.

I think I'll speak to them again tomorrow and see what they say. I know that I can't go on like this.

I take pizotifen as a preventative and rizatriptan (melt in the mouth coz I always threw up everything else before it had a chance to work). Not stopped but much improved

I've had migraines since my early 20s, they can rage on for weeks on end. Rizatriptan can work if caught early. Supplements didn't help. Couldn't identify a trigger.

I'm in counselling for something else. I've noticed since a few sessions in that I've stopped oversweating (I used to get Botox on the NHS) and I've not had a migraine in months.

i went onto topiramate after years of migrane. It reduced from 20+ days a month to 10+.
i then became eligable for BOTOX and now have injections every 12 weeks - (31 to face and head). Migranes have reduced to 2-3 days per month. BOTOX gave me my life back....ask for a referral to your NHS neurologist or headache specialist.

I have botox injections on the NHS. Life changing. I'm suffering today as we flew home from holiday yesterday and travelling always gives me a bad head. We're TTC now, so I likely won't be able to have the injections. I'm not sure what I'll do in the meantime.

I really feel for you. Have you ever been referred to neurology and a headache specialist? My experience of GPs and migraine / headache was always very poor, but they aren't specialists.

Just realised where you've said they're hormonal, there's a hormone supplement you can be prescribed and you take it at specific point(s) in your cycle. Google menstrual migraine for the info

**not saying they're all linked to cycle but it might stave a few off

What helped me was going low carb. I know some people will say it's a fad etc but cutting out bread, pasta, rice, white flour basically, means I haven't had a migraine since.

If I do get a bad headache now whichiis rare, I take cold and flu pills and have a can of full sugar Coke.

Have you tried cold and flu pills, with sinus medication? (I'm sure you have, but just in case!)

Find a good chiropractor. My migraines have all but disappeared now. Please don't read and dismiss this as there are many success stories like mine using chiropractics. Good luck!

Urgh my husband had awful migraines. They made him stay in bed for hours. Triggered seemingly by so many things: too much sun, not eating enough, driving, too much coffee, not enough coffee, stress...

Once I even called 999 as the pain was so bad, he cried and I was certain he was having a brain aneurysm!

He’s driven hours for work, gotten a migraine then needed to sleep hours in car before it goes away.

He takes propranolol daily and if one comes which it rarely does, he has a series of pills he takes. We keep them stashed in bags and in the car just in case one comes. They really are very very rare now.