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Left Temporal Lobe Seizure Treatment
I am new to the forum and I am looking for some ideas in regards to treatment for Left Temporal Lobe Seizures.
I am a 26 year old female who suffers from (as one of the neurologists I see said) "sharp spike waves in the left temporal lobe." I also suffer from dysautonomia (dysregulation of the autonomic nervous system). For the dysautonomia I see a neurologist in Boston. Recently, I began having symptoms that are unrelated to my blood pressure problems. I experience a severe lightheadedness feeling, severe nausea, and it almost feels like my legs are going to give out. Most often I wake up during the night with severe nausea and lightheadedness (feels like I am going up/down a really fast elevator). I did have a 48 hour EEG which showed sharp spikes in the left temporal lobe. One neurologist told me I was fine and it was probably my blood pressure dropping (even though the EEG said otherwise!). However, the director or neurology at a Boston hospital told me that it was most likely a seizure occuring...
The real problem comes with treating this seizure. My mother is an epileptic (she was prematurely born and that is why she has epilepsy) who had a severe drug reaction to an anticonvulsant (most likely Depakote). My primary care doctor is against me taking any anticonvulsant since there is a high chance that I'll get SJS/TEN from the anticonvusant. So, this leaves me pretty much stuck. I guess I am looking for some other treatment options that others have found work. Aside from waking up during the night from these events/seizures, I do suffer some memory loss when they occur during the day. I rarely drive anymore, and don't want to until I know that I will not have these events anymore.
I greatly appreciate your input!! Thank you!
Hi Jacquie84, welcome to CWE!
Is your PCP against you taking an anti-epileptic drug because you have a track record of drug sensitivity? Or is his(her?) reluctance based on your mother's experience? Have you been tested for HLA-B*1502 -- it's the gene variant that is highly correlated with the risk of developing SJS/TEN. (It's found almost exclusively in groups with Asian ancestry -- don't know if that applies to you).
If there isn't a genetic link, and you don't have a history of drug sensitivity, then it may be worth actually trying an anti-epileptic drug, under close supervision with a very slow ramp-up schedule -- and with instructions to immediately discontinue the med at any telltale sign of a hypersensitive reaction. SJS/TEN is actually very rare (6.1 cases per million people per year). The vast majority of people who experience allergic reactions to an anti-epileptic drug don't have SJS/TEN. You should talk to your neurologist (or more than one) about whether to take anti-epileptic drugs off the table altogether.
That said, I'm no fan of the meds, so I agree that it would be great to find another treatment path. There are some alternative approaches which you can read about here:
Neurofeedback is still new enough that it's not covered by most insurance plans; there is a lot of anecdotal success though, and some CWE members have had positive results with it.
BTW, which Boston neurology center have you been using? (Just curious -- my neurologist is at Beth Israel).
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