Concerns with coming off Medication

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eMatt

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Hello All, Im very new here so just a quick backstory to start

  • History of both partial and grant mal temporal seizures resulting from Autoimmune Limbic Encephalitis
  • Placed on Tegretol in 2009 to stop all seizures. Was successful
  • 4 weeks off tegretol in 2011 due to unforseen overseas travel issues. Did not have any seizures in this time

Now in 2013 my neurologist has given me permission to come off my Tegretol (400 mg/ day) by weaning off slowly. I have been on 200 mg/day for 4 weeks now and have another 4 until I am off completely.

Ive noticed since my drop in dosage that the periodic nausea and dream like state I associate with seizures has returned. The episodes are no where near as bad as they were when un-medicated but has made me concerned that despite multiple clear MRI's and EEg's we have not fixed the problem.

I have made appointments with my neurologist to discuss this with him. But should I just accept that I will need Tegretol for the rest of my life or can these effects be associated with coming off the medication?

Thanks.
 
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Hi eMatt, welcome to CWE!

But should I just accept that I will need Tegretol for the rest of my life or can these effects be associated with coming off the medication?
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Unfortunately it can be tough to tell. The brain meds are so powerful that they can have unpredictable and idiosyncratic effects. The listed side effects of Tegretol withdrawal do include drowsiness, dizziness, headache, weakness, and nausea or vomiting.

The best course is to let your neuro know how you are feeling, and perhaps pause at the 200mg/day dosage to see if your symptoms subside or persist. If they go away, that's a likely sign that they are temporary withdrawal side effects. Tapering at an even slower rate and in smaller increments may help minimize them.

If the symptoms persist or escalate, then that suggests that perhaps they are seizure-related. Have you had an EEG at the 200mg level? It might indicate whether you've been having abnormal brainwaves that were masked at the higher dosage. Unfortunately, simple partials (i.e. nausea and dreamlike sensations), can sometimes be tough to pick up with an EEG.

Best,
Nakamova
 
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