The ambulatory EEG testing has confirmed that it is autonomic seizures (simple partial seizures) that are causing my periodic sweating events, with up to 18 - 3 minute episodes occurring during an event which may last up to 30 hours, then occur again about 28 days later. Been going on for 2.5 years. Meet with the neurologist on Wednesday to discuss treatment options. Have not met this doctor before. What questions should I have prepared? What drugs might they suggest? What risks are involved with drug therapy? The doctor has indicated he may want to write this up for a medical journal.
Autonomic seizure diagnosis confirmed, what to expect
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There are quite a few meds used to treat simple partial seizures. Your neuro should be able provide info about which med he recommends and why. Ask what kind of track record the medication has with your particular symptoms. Ask what the recommended dosage range is, and what factors may be relevant for determining your dosage. Ask how long the ramp-up period will be, if there will be any contraindications or side effects (both short- and long-term), and when you might reasonably expect to it start working optimally. Ask if there is a target blood serum level for the med, or if the most effective dose is simply what does the trick for you. Ask if the med requires periodic follow up to monitor blood levels, and how often you should expect to see the neuro. Ask how to get in touch with the neuro if you experience anything unusual while on the med, or have additional questions.
You may also want to explore alternative/supplemental treatments (such as diet and neurofeedback), or what your options might be if one or another med doesn't work out.
You may also want to explore alternative/supplemental treatments (such as diet and neurofeedback), or what your options might be if one or another med doesn't work out.
They have put me a gradually increasing dose of lamictal (lamotrigine). No side effects after 5 days. 25 mg for 2 weeks, then 50 mg for two more weeks, then 100 for a week. Then I would go on to a maintenance dose. They expect I might have one more mild event, then the "simple partial seizures with an autonomic manifestation" as he described them would cease. Doctor feels once I am seizure free for 2 years he would like to gradually withdraw the medication and see if the brain may have rewired the circuits and the seizures might not return.
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Guess that theroy doesn't work for you then.
On Lamictal for 3 weeks. Episodes have actually increased
The doctor put me on Lamictal. I started 3 weeks ago on a 25 mg dose, then raised this past week to 50 mg. After another week at 50 mg the dose is to be raised to 100 mg. Yesterday I began my seizure "event", with the "normal" episodes of sweating. The highest number of episodes in an "event" had previously been 18. Yesterday I had 24 - a 33% increase. The doctor had indicated when discussing this medication with is that I might have another event, but it would probably be mild, and then they should stop completely. A 33% increase is not mild in my books. These "events" happen approximately every 28 days, and usually last only one day. So it will probably be another 4 weeks before I have another event. Guess we will just see what happens. I have been in touch with the doctor's office, but he is on holiday until next week. Anyone care to comment?
The doctor put me on Lamictal. I started 3 weeks ago on a 25 mg dose, then raised this past week to 50 mg. After another week at 50 mg the dose is to be raised to 100 mg. Yesterday I began my seizure "event", with the "normal" episodes of sweating. The highest number of episodes in an "event" had previously been 18. Yesterday I had 24 - a 33% increase. The doctor had indicated when discussing this medication with is that I might have another event, but it would probably be mild, and then they should stop completely. A 33% increase is not mild in my books. These "events" happen approximately every 28 days, and usually last only one day. So it will probably be another 4 weeks before I have another event. Guess we will just see what happens. I have been in touch with the doctor's office, but he is on holiday until next week. Anyone care to comment?
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Lamictal doesn't work for everybody, and for some folks it makes seizures worse. Keep track and let your neurologist know if that's what's happening for you. No fun, but you'll probably have to try something else if that's the case.