Does anyone else suffer from severe migraine, I h... - LUPUS UK

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Does anyone else suffer from severe migraine, I have had them for the last five years. :)

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suzyq100
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13 Replies
Sue2803 profile image
Sue2803

Yes, have severe migraine, but since been on warfarin for APS (Hughes), much better

pollyanna profile image
pollyanna

Yes, and its very rare painkillers work for me at the moment, although sometimes they do take the edge off it. I just try to stay out of bright light (my husband says I'm turning into a vampire!) Hope they ease soon, take care Mandy x

suzyq100 profile image
suzyq100

Thanks for replying guys! Glad the warfarin helps you Sue, migraines are exhausting, and no Mandy I havent found a painkiller that works yet but I am trying triptans, here's hoping! :)

lucy-may profile image
lucy-may

Hi I suffer awfull migraines, usual start at the begining of a Fflare up, and any bright lights or sun shine will trigger it as well, if l am in the car without sun glasses this causes it too. They are so painfull and no pain relief tablets seem to touch it, wish l could find some pain relief x x

Jude65 profile image
Jude65

I had migraines for years before being diagnosed with SLE. Once I had been diagnosed also with antiphospholipid syndrome (Hughes syndrome) and started on 75 mg aspirin a day and later on warfarin I never experienced a headache of any kind again.

45Jacks profile image
45Jacks

Yes I do and my test for Hughes was negative. They have reduced since I changed my diet recently so maybe if you don't have Hughes syndrome you could consider a food intolerance. I was having 4-5 a week but now only 1 a week.

I use prescription sumatripan as a pain killer. Only effective one I've found so far.

x take care

suzyq100 profile image
suzyq100

Thank you everyone for taking the time to answer, seems Migraine is a common problem with Lupus, I will definitely think about my diet and I have an appt with the Rheumatologist coming up so I will mention Hughes syndrome to him. :):)

russell profile image
russell

Yes I have SLE and APS and have suffered for years, am now taking gabapentin and they are brilliant.

charlie007 profile image
charlie007

I have lupus,APS,primary sjorgens,and raynauds.I get migraines lasting from a day to a week and have them twice a month approx,usually with vomiting ,visual disturbance,and my balance would not be great.I got allergy tests done as a last resort and am lactose intolerent,the change in my diet has improved the the amount of times I am getting migraines.

spencer profile image
spencer

My 19 year old daughter also suffers with migraines, another local gal here in the States with lupus uses Neurology Physician to obtain botox injection to relieve pain (+ insurance covers cost for injection, medically necessary)

suzyq100 profile image
suzyq100

Migraine is such a problem to control well, I am looking into my diet as we speak! I have heard of Botox and I think it works well in some cases, I hope your daughter can have some Spencer! :)

debsbry profile image
debsbry

Had hemiplegic ( one sided weakness ) migraines for years. Beta blockers help lots, get very few now.

mcclungt5 profile image
mcclungt5

Since going on Topamax approx 2 years ago for Lupus migraines I have never been bothered with them again and I tried 8 different NSAID's prior to Topamax it was great to find this drug on the Lupus USA website I take 150mg daily.

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