seizures

[BarbK]

Does anyone else experience seizure?. My 25 yr. old daughter with Sjogren's, has  a history of psychogenic seizures. She was treated about 10 yrs. ago and they pretty much disappeared. They are back again and quite often. Her neuro. sent her for an Mri of the brain and she is waiting on an EEG.She started her on an anti-convulsant,but it is not helping. Could this be Sjogren related ?

[quietdynamics]

Hello BarbK...
Here is a link re: neurological / SJS

There may be some information your can share with daughters Drs.
Just 'cherry pick' the article for info that would apply to your daughters situation.
http://robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren%27s_syndrome-Diagnosis_and_Treatment.pdf

[irish]

Seizures can occur with sjogrens and other autoimmune diseases. Also, sometimes they have to try different anticonvulsants until they find the one that works. Also, there are many people who have to take 2-3 different drugs to help keep seizures under control. Every person is different and fine tuning the treatment is the name of the game.

I am sure this is a huge worry for you and I hope and pray that medications soon work. Good luck. Irish

[gardenlover]

No, but I was going through a bad bout of restless leg syndrome and the dr. said there is an "anti-seisure" medicine that is very good for treating RLS.  Interesting...

[lolo1979]

All I can say is that I am never reading that Robert fox article again! Yikes, I am officially freaked now reading all the things that can go wrong neurologically. Now im going to have to read the insomnia post we had recently!!! 

But to the original question about seizures, I am wondering if your daughter has ever been treated with immunosuppressive therapy? And if so, did it impact the seizures at all?

That might be worth trying, especially if normal seizure meds aren't helping.

[quietdynamics]

All I can say is that I am never reading that Robert fox article again! Yikes, I am officially freaked now reading all the things that can go wrong neurologically. Now im going to have to read the insomnia post we had recently!!! 

As my more debilitative symptoms were neuro prior to care with the Neuro I see, this has been the area I  research (baffled). Standard Neuro tests were negative for MS, and so far are unremarkable.
For the info on Fox I worked backward; noting the key speaker for the SJS Conference on Neuro (in addition to other research which gives the %'s mentioned below)

Regarding  SJS/ Neuro....population that "may" present is small. Plus, other medical issues can be independent of SJS.
Of the population that is Dx'd SJS; 20% may present with systemic issues and of that 20% perhaps 5% may present with Neruo/CNS symptoms.  Some research will refer to systemic as Sjogren Disease (SD) vs. Sjogrens Syndrome (SS).

*Neuro also added a sleep med which helps offset flares with restorative rest. My pattern is lack of restorative sleep adds to inflammation---> flare---> crash.  I have posted I take Topamax (anti-epilepsy med...I do not have epilepsy, has other uses) and other meds that alter neuro-receptors, etc.

Prior to SJS I had no neuro issues nor head trauma.
Not even headache. Glass 'half-full' and looking forward to more of life's adventures.....whew, guess this is one adventure I never would have imagined.

[Katybarstool]

Hi Barb

Good to met you.

Psychogenic seizures are not epileptic seizures, so I'm surprised your daughter has been prescribed anti-epileptic drugs.. Psychogenic seizures are also known as non-epileptic attack disorder (NEAD) and your daughter can get some support from the NEAD Trust:  http://www.neadtrust.co.uk

Whilst I'm not dismissing the neurological aspect of having Sjogren's, I'm concerned that your daughter may be taking drugs that she doesn't need.

Although I'm not a doctor, and as Scottie says, never will be, I am an experienced epilepsy adviser and know the dangers of trying anti-epileptic drugs when you don't need them.

Hugs
Kathyx

[BarbK]

Hi Kathyx ,
It is nice to meet you also.  Hr neuro. doesn't seem to think these are non-eleptic seizures. She is having the EEG done on Weds. I am also concerned about the effects of these drugs. I appreciate your input on this. Thank you for the info. on the NEAD trust. I never of that site before.
                                                                                                                      BarbK

[Katybarstool]

Hi Barb

Glad the EEG is going to happen so soon. Remember the limitations of the EEG though - it only shows what is happening at the time of the test, not what has gone before. Let me know how it goes.

Kathyx

[Friedbrain]

I'm not sure I understand what you mean about your daughter's type of seizures, but answering your question.......yes, I have a seizure disorder.  11ys ago, I had an entire spectrum of sudden-onset neurological problems that worsened and one night I ended up having status epilepticus, which is a series of seizures where I remained unconscious.  My dh woke up and called the ambulance.  In that situation, I had witnesses to my seizures, from my dh to the ambulance guys, to the ER docs.  I was given depakote at that time.  My bouts were, in hindsite, nocturnal and before my period: for two more months, I had seizures one night a month, two or three at a time (but dh was able to wake me up in between, and then I'd fall back asleep and have another one).  They then switched my med to keppra, and I stopped having outright seizures (tho would often have restless, very hyper brain activity at that time before my period instead).

The reason I went into so much detail is to then say that I DID undergo some testing like EEGs and even an inpatient VEEG, but nothing ever showed abnormal brain wave activity.  However, I was on medication and the testing wasn't done during what I consider the "vulnerable window" of the month so.....  Negative results do NOT mean I wasn't having seizures, and just because I don't know the cause....doesn't mean they weren't seizures.  I can't say I know personally because I was unconscious during all of them lol  but my dh is quick to confirm that! 

At the time, the neuros all thought it was MS, but nothing ever supported that diagnosis (negative MRIs and lumbar punctures).  New docs think that the big picture-in hindsite-suggests that it was an inflammatory/autoimmune cause.  I'm seeing an MS/autoimmune neuro specialist today, actually, first one in a long time, recommended by my young neuro because I'm having weird symptoms.  It'll be interesting to see what he has to say.

My feeling......seizures are nothing to mess with because they can cause "kindling" or a lowering of the threshold to more seizures.  I am glad I'm on medication for them.  When I moved here, a new neuro (not the young one I mentioned above) wanted me to go off the medication to see what happens and I was like "Are you kidding?!"  Also because a seizure means a driving restriction for sometimes a YEAR, significantly impairing quality of life just for an experiment...!  But that's just me.

[Katybarstool]

Friedbrain

HOw did you get on with the neuro?

Kathy

[Rachel F.]

I'm glad she is getting the MRI-- hopefully that will shed light on things...

[Myshkin]

I have both epilepsy (temporal lope epilepsy) and Sjogren's.

My epilepsy started when I was around 19 and my Sjogren's didn't start untill my 30's so they don't seem to be correlated here other that the fact that Sjogren's patient have a higher rate of epilepsy than other people. Please seek proper neurological treatment and get anticonvulsants that work - very few epilepsy patients are succesfull in getting meds that work the first time around. It takes a lot of trial and error.

According to my neuro, Sjogren's related seizures will be due to some sort of brain damage.

[Katybarstool]

Myshkin

Quite a lot of people find their first anti-epileptic drug works for them. The thing is, not all the drugs work for all the seizure types. In fact, taking the wrong drug for your particular epilepsy, or even the wrong dose of the right drug, can make your seizures worse. So it's vital that epilepsy is diagnosed and treated by an epilepsy specialist.

Kathyx