Thanks for comments.

[Willa]

Well, I had another series of episodes this morning. Each lasting about 1-2 minutes - for a total of about 20 minutes all together. Yes, I have had several MRIs and an MRA. All were normal. For a long time it was thought by many doctors that I had MS. I am on Plaquenil as well as Warfarin. I am seeing a rheumatologist who specializes in APS - she lectures and writes papers on the disorder. I am also seeing a neurologist. My next EEG is scheduled for mid-December. It will more thank likely be normal as all my others were. Will see what she thinks. I am seeing my hematologist tomorrow and will talk to him about whether the Plaquenil (supposed to help w/blood clots as well as inflammation) and the Warfarin are a good combination. I will also ask him if maybe I should be on a combination of Heparin and Warfarin, but I don't want to have to give myself shots. I already feel like a slave to this condition.

[MaryF Administrator]

My daughter 15 has similar episodes, she has passed tests for SLE Lupus and APS, she was having up to 12 a day, with a clear scan... they have reduced to around around 10 a week or less on plaquenil and aspirin.. She has been on plaquenil a few months now at full dose and it is kicking in. Have they tested you for Lupus as well. Mary F x

[Willa in reply to MaryF]

Yes. I've been tested for just about everything and have been told that all blood tests were normal. I would like the seizure-like episodes to be less than 1 a day. Maybe that is just not going to happen. I hope your daughter is doing ok. I was tested a few times before being diagnosed w/APS, and the tests came up negative. Then I had the PEs and my hematologist tested me the requisite 3X. Each came up positive. I will be on a blood thinner for the rest of my life. I wish your daughter luck and good health.

[MaryF Administrator in reply to Willa]

Thanks, it may die down the longer you are on the plaquenil and your inr on an even keel, best wishes. Mary F x

[jjandsj]

I really feel for you, my Granddaughter had problems with warfarin and they had to stop it I am seeing her today so will ask what the new one is called, she is allergic to so many of the drugs they put her on but again I think it is that the GP's and hospital here just dont know how to treat her.

[Manofmendip]

Hello Willa

Could you describe your 'episodes' please.

Best wishes.

Dave

[Willa in reply to Manofmendip]

Hi Dave. I typically get some kind of aura before (could be anything) - a feeling like something is going to happen, a headache, my arm would feel weak, my cheek would feel tingly or mildly numb. Sunday, I felt very nauseas. The episodes typically start w/my right eye drooping and then my eyes would start blinking rhythmically, slow, fast. Sometimes my head would jerk to the left and my arms and legs would jerk. Or my head would shake up and down uncontrollably. Sometimes I would have waves of my whole body jerking. Mainly it is just in my eyes or head. Sunday, I had several that came in waves each lasting about 1-2 minutes with a minute or so in between.

Are you having episodes?

[Gorgeous]

I was having stereo-typitcal seizure like symptoms this time last year. I was already DX with APS and lupus. I wAs having up to 15 episodes a day. I was scared not knowing what was happening. Turns out after being referred to a brilliant neurologist at St Thomas' they were complex Parial seizure - epilepsy. And the best news is they can control then. But I did loose my driving licience!!!! I am hoping to get it back in feburary 2013 a it's been a hard time !!!! Still sentence nearly done I hope!!!

I am on the same cocktail of drugs as you warfarin and planquenil are on my list too!

[Willa in reply to Gorgeous]

Wow. That's what was happening to me starting in June 2011. I was out of work for 3 months because I was having too many a day that I couldn't work. I also couldn't drive per dr.'s instructions. I was diagnosed w/APS in Nov 2011 after having the PEs in Oct. I went back to work in Nov but was only there for about 2-3 weeks and the episodes started again - one really bad one at work. My dr told me I went back to work too soon, so I was out of work again for another 3 months - that's when I started having all kinds of EEGs and all were normal.

May I ask how your seizures were diagnosed?

[Gorgeous]

Haematologist at St Thomas' referred me to Dr Paul Holmes neurologist at St Thomas' as my INR was 4.5 and I should not be having clots!! On discussion with the neurologist my seizures start with the same feeling difficult to describe like a 'rushing' sensation then eye flickering head nodding lip smacking being unable to respond to others feeling detached from my body and unable to move. Mine were lasting from a few minutes to 15 minutes at a time! I offend had a sequence of them one after another. After I would feel completely exhausted and sleep for a number of hours.

These seizures are caused from the White Matter Lesions APS has caused in my brain. I have too many to count!

The medication for epilepsy has them under control but I have to make sure I look after myself stress and tiredness can quickly bring on a seizure.

My full EEG testing all can back clear!!!

On the up side you get a freebus pass!! Lol

[Willa in reply to Gorgeous]

Wow. I am going to print this for my neuro. Maybe she'll decide to do another MRI and really review it. Last one I had was in August 2011 before I was diagnosed with APS. That one was clear.

[Gorgeous]

Print away, So pleased to have helped some one the medication that works for me is Toprimate 50mg morning and night.

I hope you find an answer, maybe lookup some stuff on APS and epilepsy I think there is a book you can get from the Hughes Foundation.

Xxx

[Gorgeous]

Print away, So pleased to have helped some one the medication that works for me is Toprimate 50mg morning and night.

I hope you find an answer, maybe lookup some stuff on APS and epilepsy I think there is a book you can get from the Hughes Foundation.

Xxx