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Epilepsy Research UK
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Effects of taking Carbamazepine Retard

This is to seek support from other present or past users of Carbamazepine Retard (Tegretol) manufactured by Novartis.

I have been on it for approximately thirty years since diagnosed with petit- mal epilepsy. Dosage reduced to 600mg daily a year post my temporal lobectomy (brain surgery) in May 2000, however has continued daily since. Seizure frequency post surgery reduced from fifteen a month to less than one in five years.

I have in the last six months however, developed a very itchy skin rash starting from the toes upwards, been to dermatologists some of whom diagnosed it as 'Dermatitis Herpetiformis' and others as 'Eczema'. All forms of medication for this had no results. After stopping Carbamezepine/Tegretol tablets, my skin fortunately seems to be improving.

I am seeking support from other users of the same drug who might have experienced a similar reaction. Kindly email: joytojoy2000@yahoo.co.uk.

Thank you for your time!


2 Replies

I was on Carbamezepine/Tegretol for 1 year. It was life threatening. My Dr. did not monitor my blood Sodium which dropped to 119. I started falling and hitting my head. When I was taken off the drug I lost 22 lbs of water weight and my blood Sodium went up to 138 in two weeks. Scary!!!!!


Am so sorry Xena for taking so long to respond. It's been a 'challenging' six months going in and out of hospitals for both neurology and dermatology (skin) and now 'pulmonology' (breathing). After stopping Carbamezepine, there was weight loss (esp of the bloated feeling) but no difference to the skin. Then tried out Keppra (terribly negative effects of head pain, depression and finally thoughts of suicide forced the hospital to change that too). Skin eruptions continued and spread. Finally moved to Clobazam which has stopped head pain and giddiness and improved balance plus improved the attention and ability to multi-task. Only after relocating from the dust-mite and pollen city, did my skin improve to the extent that the cause of it's eruption, has now been confirmed not due to Tegretol but due to the air of the city I was residing in!!!


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