Migrain blindness

[Honkyjayne]

Im taking naproxen for the pain and zomig had migrains since 16 now 58 still here still trying to reduce them since menopause been worse now go blind for days unbearable pain does anyone else have this

[Poppyclaire]

Hello how awful for you to have suffered for so many years.

I lose some of the vision in my left eye whenever I get a migraine. So far no drugs have worked for me. Sending you a hug.

[MaryF]

Hello, one condition often missed and unfortunately often by Neurologists, is Hughes Syndrome/APS Sticky Blood - Antiphospholipid Syndrome. Do you or close relatives have a history of migraines, miscarriages, other autoimmune diseases including Thyroid, or any relatives with early heart attacks or strokes, if any of this rings a bell come back to me. MaryF

[Honkyjayne in reply to MaryF]

Thankyou for you're reply quite a few of my relatives have migrains and my mom had thyroid problems was on medication for years had scans MRI seen neurologist several times now I'm on 5 different medications and got to go back in a couple months it gets you so down at times can't plan and go anywhere never know when you get a migrain thanks Jayne

[MaryF in reply to Honkyjayne]

I have Hughes Syndrome/APS, otherwise known as Sticky Blood or Antiphospholipid Syndrome. The Migraines I have from that respond to Aspirin twice a day, after a meal. The tests for this disease are

here: Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

They are cheap for your GP to do, but the samples taken are time sensitive so best done when the courier is about to collect from GP or do them at the hospital.

The typical low-grade symptoms of Hughes/antiphospholipid syndrome are:

headache and migraine

memory problems

dizziness and balance difficulties

visual disturbances

blotchy skin (livedo reticularis)

arthralgia

fatigue

The common acute conditions caused by Hughes/antiphospholipid syndrome are:

thrombosis – DVT

strokes and mini-strokes (Transient Ischaemic Attacks)

heart attacks

pulmonary embolism (blood clot on the lung)

As Hughes/antiphospholipid syndrome is a blood disorder and blood flows throughout the entire body, nearly any organ can be affected. Consequently, the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints can potentially all be affected to varying degrees.

The brain is particularly susceptible in Hughes/antiphospholipid syndrome patients, as the ‘sticky blood’ can impair circulation and limit oxygen which can result in a variety of low-grade neurological symptoms.

Remember - it is NOT necessary to have all the symptoms to be diagnosed with Hughes/antiphospholipid syndrome.

MaryF