Seizure

[Carolina]

Dearest cccourt:

Of course we talk about conditions not usually related to Sjogren's.  Ignore anyone who tells you otherwise.

So many of our conditions are related to our disordered Immune System, and it takes TALKING and WRITING about everything to get it all sorted out.

Fortunately I just ignore the naysayers and know-it-alls.   I rather suspect the know-it-alll who told you to 'stick to Sjogren's' has no idea what he/she is talking about on any subject.

Regards,  Elaine

[lorigacc]

Just an update. I finally saw a neurologist / epilepsy specialist at UPenn.  He said I have epilepsy caused by autoimmune issues.  He felt it was vascular, and said it was more than likely due to inflammation in the blood vessels in my hippocampus area of my brain.  I have also been having memory problems which is part of it, because the part of the brain that is affected.  Have to keep taking the keppra for the seizures, the Plaquenil for the inflammation, and the Ecotrin for the anticardiolipid business.  If I have another seizure, I will need to have a spinal tap. And of course....I still can't drive.  Please keep me in your prayers, cause I am still very scared and stressed about the whole thing. Glad I finally got a doctor that is figuring things out, but still a lot for me to deal with.  Thanks for listening.

[cccourt1942]

Great to hear.  What is anticardiolipid?  Also...why a spinal tap?  Also, how does he KNOW which part of the brain is affected without the EEG?  Or MRI? 

Just curious. 

Who told you not to drive?  I am asking because I still can't believe no one has told me not to drive.  I am terrified I 'll have an accident and be taken to an ER..and have to divulge my seizure disorder> then ordered not to drive.  The first year after dx I drove a very narrow area.  Truth be told, the first year I was overdosed on the seizure med.  Eventually I stood my ground to revisit dosage.  Once resolved, I almost feel normal. 

I am so happy for you.  If you can't drive, get out and walk. 

Have a great day.  ccc

[lorigacc]

Hi CCC,
   The antiphospholipid syndrome has to do with the clotting factor in your blood, my hematologist refers to it as "sticky blood".  I can get a blood clot quicker than most folks. I get the levels of my anticardiolipins checked every 6 months and am on Ecotrin (for a blood thinner).  This also puts me a risk for vascular incidents.  The inflammation just adds to the problem. Yes, I had many EEG's and MRI's. Having memory problems too, so it seems to point to the hippocampus.  At least that's what he feels.   When I had the grand mal seizure in August, my neurologist told me I could not drive for 6 months.  Every doctor I saw after that, said the same. The neurologist/epilepsy specialized confirmed the same.  The 6 months are over the end of Feb.2018.
If I have another seizure, the count starts all over again    The not driving has been difficult, because ironically my husband has a seizure disorder and cannot drive either.  In the big picture, I will take my meds, and make the most of each day. Thanks for your input, take care

[cccourt1942]

Grand mal is answer to my driving query.  Bless you heart w' hubby too.  You must be one organized woman!   And..info relieves my fears for me too.  Have a great holiday season.  And not too long before 6  months is up.  ?? ccc

[lorigacc]

ccc - thanks for the kind words, hope you have a peaceful holiday also.

[lorigacc]

Well....made it thru the 6 months of not driving (actually 7 months by the time I saw the doctor). Seizure free and my driving privileges are reinstated.  I am a bit nervous about being in the car by myself, so my husband has been supportive and going with me.  Hoping the fear eventually goes away. For now, just happy to be driving again....

Lorigacc

[cccourt1942]

Now...let me ask you:  are you seizure free, or are you seizure controlled?  My neuro emphasizes I am fine, I have "controlled" seizures, but I maintain a diagnosis of epilepsy. 

And yeah...even tho I didn't cease driving...very far...my first time back on a highway was scary as could be.  If I drove slowly, I'd be honked at for the entire journey, and if I kept up with traffic, scared me to death...so meandered in the right lane as best I could at about 60/65.  You are right though.  Harrowing.

Glad to hear your news.

ccc

[irish]

You passes the first hurdle. You kept your stress in check and found a neurologist, got a diagnosis (sjogrens no less) and got medications. You are driving again. You should be proud of the progress that you made. It takes moxy to deal with these autoimmune issues and to persevere through all the hoops to treatment.

I am wondering if you have seen a hematologist for your clotting disorder. There are several drugs available to prevent clots and an assessment may be indicated. Inflammation can affect the blood vessels in many ways and sometimes we need to dig deeper into things to make sure all the angles are covered. So many things that can affect the clotting issues.

Will say some prayers and keep the faith cause you have kept on going through all this. Irish

[Kristina09]

I believe it?s highly possible that seizures could be related to Sj?gren?s. If Sj?gren?s is systemic  inflammation and can affect any part of the body not just mucous glands then i think it can affect the vessels and cells in the brain.

[lorigacc]

Thank you for all your kind replies
Yes, I am seizure free. Taking Keppra, so maybe that is why, but I'll take it.  I do see a hematologist every 6 months to have my anticardiolipin levels done (other blood work too).  Chances are the levels could go up in-between those 6 months visits...but can't spend my life getting constant blood work.  They do think that could be one of the possibilities of the seizure (tiny clots).  They also believe that inflammation plays a part in it all.  The neurologist wants me to up my dose of Plaquenil.  Might be a good idea anyway, cause I have been having an RA flare.  Also, experiencing some kind of psoriasis on my back, so maybe that will help that too. Still nervous that I could have another seizure...and nervous about driving, but gotta keep living life, and not let the disease get the best of me. Having this forum is a great support.