Seizure

[Rack]

Hi everyone I'm 47 and was diagnosed with Antiphospholipid at the age of 27 then Lupus at the age of 30..im on warfarin and Hydroxychloroquine...and in July I had a seizure in my sleep then again 6 weeks after,i had a brain scan last week just waiting results! And had a electrodes test yesterday to monitor brain activity...sorry to go on but would be interested in anybody that has gone through the same experiences as myself..... And it's horrible not being able to drive....Thankyou...

[johare]

Hi, My experiences aren't quite the same but similar. I have Lupus and Sjorgrens mainly. I then have associated conditions. One of the areas the Lupus has affected appears to be my brain. I have always had migraines. Then when the Lupus became more active and brain fog set in, I also began to faint. It was more like I would drop to the floor. No warning. At first they were described as vaso vagal. My low blood pressure and arrhythmias were blamed but a year with monitors and tilt tables etc proved otherwise.

I have had EEGs, sleep deprived EEGs. These showed temporal lobe changes. MRI normal. I started on a low dose of a cross over drug between migraine and epilepsy and have gone from there.

I too hated not driving, but it soon passes once you are stable for some time. There is a history of epilepsy in my family.

[Rack in reply to johare]

Oh dear you have been through it it is scarey.. they have said I will most likely have the sleep deprived test... And how are you now have the tablets helped? And are you back to driving? ... Thankyou..

[johare in reply to Rack]

Yep, the tablets took a while to settle with some side effects as always. But on the whole I now realise just how sluggish my brain had become. I am sharper with them. It took around six months to get it right and I'm driving again now. I have to make sure that I don't allow myself to get too fatigued with the Lupus which I think really affects how my brain is reacting. It seems like the more fatigued I am the more likely the faints. So I make sure I pace well now.

[Rack in reply to johare]

Thankyou for sharing that with me it does help to hear other people's stories...im glad you have improved and feeling better.

I just hope I get some answers...

[johare]

Im sure you will. It takes some while to settle but be patient. All the best.