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Seizure medications started 10 months post brain surgery

Sun, 11/27/2016 - 02:44
Hi everyone I was hoping to get some advice about medications related to seizures and how to feel more in control after being diagnosed with a seizure disorder...here's my back story. In January 2016 I was suddenly diagnosed with a large pineal region tumor at the age of 26. The tumor was resected 85%, was benign, and I returned to work two months after the surgery. Three month after surgery I had my first experience of what I believe is seizure activity. My right arm experienced "marching" numbness from the hand up into my jaw. This continued to occur, primarily at night while sleeping or in the early morning. It also occurred more often after I had a few alcoholic beverages. I called my neurosurgeon and he referred me to a neurologist specializing in seizures. The neurologist did an EEG and found no activity. He said based off my surgery sight I would have visual seizures, not sensory seizures and said I didn't have to take seizure medication and that it was probably from cerebral vasospasm from blood products left over from surgery and to take magnesium. So I take magnesium and continue to have numbness in my arm at night, one instance being preceded by a feeling/aura of panic. I also experienced two or three instances of flashing lights in my peripheral right vision. At my follow up in October I tell him all this and he completely changes his tune, telling me that I am experiencing seizures and need to take seizure medication. He still does not believe my sensory numbness is seizure activity which I find bizarre. So this leads me to medication... This neurologist put me on Lamictal. Two weeks in I notice I have a rash on my hand and then start to develop sores on my mouth. Patient advisory tells me to go to the ER as I may be having signs/symptoms of Stevens Johnson Syndrome. At the ER I test positive for strep and they tell me my rash does not look like SJS. I call the neurologist office the next day and they say to continue taking Lamictal. I am apprehensive but do, and my lips swell and literally fall off. My mouth and lips were covered in ulcers, I developed a pox like rash all over my body. I go off the Lamictal and see my Neuro's nurse practitioner. She tells me it looks like I could have Hand, Foot, and Mouth disease. Granted I work at an elementary school and one of my student's did have it so this is a possibility but my blood tests negative for Hand, Foot, and Mouth disease. Its been about 3 weeks and my body is finally about healed. The neuro's Nurse Practitioner told me she would be comfortable trying me on lamictal again in about three months...while lamictal was a very helpful drug for me I'm terrified I may have actually had a reaction to the medication. I also feel like neuro completely disregarded my legitimate concerns about my rash and reaction, as everything I've read online indicates the medication is stopped immediately when a rash starts. I'm currently taking Keppra and it makes me very sleepy and I believe it gives me bad headaches. The symptoms are getting better with time, but I'm not sure its as effective as a drug as Lamtictal was for me. My questions for the community are: Does anyone have experience retrialing Lamictal after a suspected bad reaction? Does anyone feel their seizure neurologist is not invested in their health/is a poor diagnostician? I am very very disappointed with the care I have received from this neurologist, he seems inept and it's frustrating because this is his specialty. I have made an appointment with a different neurologist, but will have to wait til March to see him. Being diagnosed with a seizure disorder is frightening and I feel like I don't have answers, just a twenty minute appointment saying "hey, well looks like you are having seizures, here take this medication for probably the rest of your life"...then out the door. I don't feel like my concerns were listened to and I have so many questions. I'm afraid of living my life because I fear my seizures spreading and having a generalized seizure. Are there people out there that were so frustrated with their care at first and then found good answers? I feel hopeless, and then I'm unsure how much of this hopeless feeling is the Keppra, I really dislike being on a medication that may alter your mood. My neurologist also told me I would probably need to take medication for the rest of my life because my seizures are related to scarring from the surgery from where the went in through my occipital lobe. This is from the same man who told me ten months earlier I wasn't having seizures...so is there hope to get off medication eventual? I know the answers to all these things may be unknown but I would appreciate any feedback, suggestions, or support from others who have been in the same situation. I feel like I don't have options. Thankyou!

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