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Posts (17)

4 days ago · Daughter with Newly Diagnosed Generalized Absence Seizures in Epilepsy & Seizures

I would have your neuro check for autoimmune encephalitis. They sent my spinal fluid to Mayo (highly recommended) to test for antibodies. I was diagnosed after having Facial brachial distonic seizures. My neuro never heard of AE until me. I video’d my seizures and he spent the night researching and the next day said “I think I know what you have”. Took spinal fluid, sent it to Mayo who confirmed. My body was producing antibodies that were attacking my brain thinking it was an “enemy” when it normally would attack a virus. AE is very often misdiagnosed as it is rare. Please have your Dr check for this. The sooner the diagnosis and treatment, better chances of full recovery with minimum brain damage. In the hospital they tried steroids, nothing worked.. so they tried IVIG and it stopped the seizures, though temporary. There’s an International Autoimmune Encephalitis Society group on facebook and they also have a website. Their website is loaded with information. Please please have your Dr check for this.

Mon, Mar 4 10:26am · Conversion disorder with pseudoseizures (PNES) in Epilepsy & Seizures

Have they drawn spinal fluid to have that tested for things like Encephalitis? I started with jerks on my left side that went into seizures. I have autoimmune Limbic encephalitis type LGI1 related to Voltage Gated Potassium Channel antibodies. My serum from the spinal draw was sent to Mayo and they confirmed the antibodies. These antibodies normally attack viruses, etc but went after my brain instead. A lot of people are misdiagnosed and go for years without proper treatment. The sooner the treatment the better the outcome (in majority of cases). Look up autoimmune encephalitis. There’s many different types with different syptoms.

Oct 1, 2018 · Keppra in Epilepsy & Seizures

@joedavid please forget my last post asking for a reference.. I’ve since found one. Thanks

Oct 1, 2018 · Keppra in Epilepsy & Seizures

Hi @joedavid could you please post or send me a reference that gives titanium dioxide as an ingredient in Keppra? I couldn’t find one, or aluminum
Thanks, Val

Sep 22, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hi @arunhari . I began with facial brachial dystonic seizures/epilepsy and had facial and arm jerks on my left side. 10 days in the hospital and they got the seizures to stop with IVIG therapy and Keppra at 500 mg twice a day and was weaned off of the Keppra in Feb/Mar. THen the jerking came back so I had another 5 day IVIG infusion. That lasted about 3 weeks. Then I had my first RItuxan infusion in March. In April I had grand mal seizure and was put back on Keppra. Then had more grand mal and absense seizures so up’d the Keppra to 1000mg twice a day. Almost 2 months seizure free and had 2 more grand mals one day after the other, so they upped my Keppra to 1500 mg twice a day. And then added in Vimpat. Just passed the 100 day mark with no seizures.
I have not had the type of seizure that only comes when you are sleeping.

Sep 9, 2018 · Keppra in Epilepsy & Seizures

Hi Jake. No they added the Vimpat to the Keppra so I take both.

Sep 3, 2018 · Keppra in Epilepsy & Seizures

I was put on Keppra and after about a month I had another petit mal seizure, so he upped my Keppra from 500 mg in the am/pm to 1000 mg am/pm. After 58 days I had 1 seizure on one day, then another the next, so he added Vimpat to it. So far so good. Over 80 days now seizure free. Keep in mind that Keppra can’t just be stopped. It takes a while to build up in your body to work and when changing, I was told I’d have to wean off of it for about 9 weeks while building up another med. I went through 2 pairs of glasses with changes in my vision, and it’s now stabilized… but I itch wherever there’s a crease in my body and where sweat can build up, sometimes to the point of wanting to scratch my skin off, but even that is better than having a seizure.

Aug 25, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

If you go to Rochester, MN, I’ve heard that they absolutely figure things out… where in your brain your seizure is starting, what meds would work, etc. I’ve also heard that they are better there than any of there other clinics..