Migraine

[marghay13]

My migraine has got worse lately and gp is referring me to the hospital headache unit. She says they will have a lot more to offer and will liasise with the rheumy dept. Also mentioned tbe effect of autoimmune system on blood in the head. Where can I find more info on this?

[Treetop33]

Do you have APS (Antiphospholipid syndrome)? What is your diagnosis?

[marghay13 in reply to Treetop33]

Never been told I have APS just SLE and Fibromyalgia

[Paul_Howard Partner LUPUS UK]

Hi marghay13 ,

We recently published an article about headaches and migraines in lupus which you may find interesting - lupusuk.org.uk/headaches-an...

Good luck with the headache unit. Let us know how you get on.

[marghay13 in reply to Paul_Howard]

Thanks Paul. I’ve read the February article. Very interesting. Had a hideous February with one migraine lasting a week.

[Sara_A]

Yes it could be aps which causes headaches or maybe just the lupus causing them.

I take propranalol (beta blocker) twice daily to keep mine at bay and I’m on an anti platelet as I have aps (sticky blood) I then take naratriptan when I do ocassionally still get a migraine.

I think there are lots of preventative meds they can try so don’t worry.

I would however make sure u have been tested for aps as this maybrequire different treatment ie anti platelet

Hope u get sorted soon!

[marghay13 in reply to Sara_A]

Interesting. I tried propranolol but as I already have low bp it made me even more light headed and got cramps. Have been on Topiramate a while but it’s not working. Take Rizatriptan and aspirin which works if I take it at the very first possible sign

[Wendy39]

Hello.

I have suffered with headaches / migraines etc since my early teens. In fact maybe 12? They have got worse and been described to me as headaches, migraines, cluster migraines, headaches with myalgia etc.

I currently just have sumatriptan from GP and use this with paracetamol and ibuprofen.

They have been one of my most debilitating symptoms.

But I don’t have APS/Hughes either.

So I am not much help to you.

I’d be very interested to hear what they offer you though. Will you keep us posted?

I hope you get the help you need.

Wendy

[Sara_A]

Yes so a beta blocker not ideal for u!

I think they can use amitriptyline for headaches too?? So I’m sure there are still options.

Though saying all this, today is the 2nd morning I’ve woken with a migraine! But I’ve got terrible tension in top of my back and neck so think it’s that. Drives me insane!

[marghay13]

Yes it’s never gonna be perfect but any improvement would be great. I can’t take amitryptilene it gives me weird nightmares!