scream_phoenix Posted March 29, 2014 Share Posted March 29, 2014 I've been asking my doctor about Trileptal, and he says the biggest risk factor is it lowers your sodium in so many patients that you have to get it checked every couple of weeks. I have a low sodium to begin with so it would be a concern, but I was wondering if anyone had first hand experience or other side effect problems on Trileptal Link to comment Share on other sites More sharing options...
jt07 Posted March 29, 2014 Share Posted March 29, 2014 I've never suffered from low sodium, but I do know that it can be life threatening in some people. It can be a medical emergency. That's why you have to have it checked before it gets too bad. Link to comment Share on other sites More sharing options...
lavender fairy Posted March 29, 2014 Share Posted March 29, 2014 I had a bad reaction to trileptal. It seemed to negate the neurontin I take for fibro pain, and my entire body was seized in pain from the first day I took the trileptal. I know my blood was checked, and I think I had a low sodium level as well. This was after 3 days on trileptal. I stopped taking it immediately, and have never taken it again. Link to comment Share on other sites More sharing options...
Wooster Posted March 30, 2014 Share Posted March 30, 2014 Low sodium, called hyponatremia, is indeed a medical emergency. Your body needs sodium to, among other things, control what crosses the cell walls, make sure your heart is beating properly, and that your nerves are firing right. The "first responder" treatment is to eat salty snacks if the hyponatremia is caused by taking in too much water. If you have chronically low sodium, I am guessing doctors would treat that with supplemental sodium? Sorry I don't know anything specifically about trileptal though. Link to comment Share on other sites More sharing options...
bpladybug Posted March 30, 2014 Share Posted March 30, 2014 I had low sodium on Trileptal and it is very serious. You need medical attention right away. It is rare to have this reaction. I had a very miserable Memorial Day weekend where I got weaker and weaker and did not know why. But it was a holiday weekend so I did not go to the doctor. I could not function, just sat is a lounge chair. When I got blood work done on Tuesday they staff did not want me to leave or drive. Link to comment Share on other sites More sharing options...
scream_phoenix Posted March 30, 2014 Author Share Posted March 30, 2014 Damn. Link to comment Share on other sites More sharing options...
MiaB Posted March 30, 2014 Share Posted March 30, 2014 (edited) I really liked Trileptal, but have just recently been pulled off it after blood tests raised concern about liver damage, which I believe is pretty unusual. To be honest, I can't recall my pdoc ever mentioning sodium as an issue requiring blood tests or monitoring while I was on the med, either in 2013-14, or back in the mid to late 2000's, when I was on it for a couple of years. That means absolutely nothing, because I've gotten the impression over the years that not all approaches to treatment are standard across countries. edited very late, because it suddenly occurred to me that my original response was somewhat idiotic and posted at an hour when I'd probably just taken all my night meds. Apologies. Edited April 2, 2014 by miab Link to comment Share on other sites More sharing options...
crtclms Posted April 2, 2014 Share Posted April 2, 2014 My husband always had trouble keeping his sodium level up on Trileptal. When they added the Phase III trial anti-convulsant, his sodium went really crazy, and now they make him take supplements. Link to comment Share on other sites More sharing options...
quiet storm Posted April 2, 2014 Share Posted April 2, 2014 Taken right from the PI sheet: Hyponatremia Clinically significant hyponatremia (sodium < 125 mmol/L) can develop during Trileptal use. In the 14 controlled epilepsy studies 2.5% of Trileptal-treated patients (38/1,524) had a sodium of less than 125 mmol/L at some point during treatment, compared to no such patients assigned placebo or active control (carbamazepine and phenobarbital for adjunctive and monotherapy substitution studies, and phenytoin and valproate for the monotherapy initiation studies). Clinically significant hyponatremia generally occurred during the first three months of treatment with Trileptal, although there were patients who first developed a serum sodium < 125 mmol/L more than one year after initiation of therapy. Most patients who developed hyponatremia were asymptomatic but patients in the clinical trials were frequently monitored and some had their Trileptal dose reduced, discontinued, or had their fluid intake restricted for hyponatremia. Whether or not these maneuvers prevented the occurrence of more severe events is unknown. Cases of symptomatic hyponatremia have been reported during post-marketing use. In clinical trials, patients whose treatment with Trileptal was discontinued due to hyponatremia generally experienced normalization of serum sodium within a few days without additional treatment. Measurement of serum sodium levels should be considered for patients during maintenance treatment with Trileptal, particularly if the patient is receiving other medications known to decrease serum sodium levels (for example, drugs associated with inappropriate ADH secretion) or if symptoms possibly indicating hyponatremia develop (e.g., nausea, malaise, headache, lethargy, confusion, obtundation, or increase in seizure frequency or severity). Link to comment Share on other sites More sharing options...
lavender fairy Posted April 2, 2014 Share Posted April 2, 2014 My doc never mentioned the risk of low sodium on trileptal or told me to have my blood levels monitored either. In fact it was my gdoc, not my pdoc, who requested the bloodwork that included sodium levels when I went in with symptoms after starting trileptal. If it weren't for my gdoc, I would not have known that it was a sodium issue. I spoke to my pdoc later that day, and he just said to discontinue the med without having knowledge of the bloodwork that my gdoc ordered. My symptoms were very similar to bpladybug's in that I got very weak, but it doesn't seem like things got as severe for me because I called my docs and got in for an appointment with my gdoc right away (after a lot of encouragement from my tdoc). For me, it seemed like the side effects from the trileptal were both the low sodium symptoms and symptoms that made my fibro pain go out of control. But maybe that was all low sodium. I don't know, It wasn't really explained to me. Link to comment Share on other sites More sharing options...
WhiteFemale Posted April 6, 2014 Share Posted April 6, 2014 i just got over acute renal failure to be given this script im a lil scared Link to comment Share on other sites More sharing options...
jt07 Posted April 6, 2014 Share Posted April 6, 2014 i just got over acute renal failure to be given this script im a lil scared I think that you have reason to be concerned, but I don't think you have to be scared. Just request regular blood tests from your doctor (any doctor can do this, pdoc or gdoc). That way they can tell if there will be a problem or not. Also, as mentioned above, low sodium comes with symptoms so if you keep on the look out for things out of the ordinary, you should be fine. Blood tests and vigilance should make you safe and give you peace of mind. There are many, many people who take this med without incident so it is not a given that you will get this side effect. Link to comment Share on other sites More sharing options...
Ptolomy Posted April 6, 2014 Share Posted April 6, 2014 I once had a massive seizure due to hyponatremia casued by a different medication. Left me unconscious and writhing around for about two days while doctors speculated about meningitis and brain damage. Spectacular by all accounts but I wouldn't recommend the experience. Completely different drug though and I had been feeling sick for months beforehand. Link to comment Share on other sites More sharing options...
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