Medication on Deck; Trileptal

After the Lamictal fiasco I honestly had to spend a couple days deciding on whether or not I wanted to continue pumping my body full of random chemicals it doesn’t seem to like very much (in the off-chance they might help my situation) or to take a little “vacation” from the torment that has been psychiatry. 

I was leaning toward “vacation” when two things steered me back toward the (continually questioned) medication route; the sudden death of a friend with schizophrenia, and a friend who takes Trileptal and told me how much it has helped her.

So I find myself, here, again, wading through the side effects in hopes I can make it to the other side. You know, that side where it seems to do much more good than harm.

From what I understand, Trileptal is another anticonvulsant (like Lamictal) that acts as a mood stabilizer (at least, for some people). It was born from Tegretol (a similar drug with more side effects) and according to my doctor they stuck an oxygen molecule onto carbazepine (Tegretol) to make it oxcarbazipine (Trileptal). Sources say this has alleviated many of the side effects the drug had as Tegretol.

Today I am on day four, which is quite a bit longer than many drugs on my plate have made it. The side effects have been… interesting, honestly. So far not overwhelming enough to warrant stopping taking it, but have made for an interesting week.

  • The first day I took Trileptal (and I use generic, fyi, which is cheaper -though more expensive than Lamictal) my main concern was that I developed a feeling of something like numbness all over my body. The feeling was like that of drinking just one too many beers (which isn’t always a bad feeling), accompanied with some dizziness and a lethargy that I found almost alarming. I have been instructed to start taking it in the morning, which seems a bit weird to me because most of the side effects I’ve experienced were within a few hours of taking it and it has made me so tired it is difficult to break past noon. Once 1 or 2 pm has hit, though, I have generally felt fine, energy-wise.
  • Another thing I noticed is that my mood has most definitely been effected by this drug. There are moments of relaxation that seem to go with the tired lethargy (which is nice) but the mild depression I had been experiencing at the end of last week has quickly become fast-shifting and much more intense moments of depression lasting 2-3 hours at a time. These shifts, too, are not happening when they normally do for me (so my cycle must be thrown off), I generally feel quite good in the morning and increasingly awful in the evening but since they are happening more frequently they are landing on lunch time, or even breakfast and again in the evening. I am keeping a close eye on these mood swings, the pamphlet that came with the medication warned about them but if they become too severe I want to be sure to alert my doctor to what is going on.
  • And finally, this is the one thing that has had me on the fence about Trileptal, it renders hormonal birth control irrelevant. My concern in this arena is not around avoiding pregnancy (though I’d consider avoiding pregnancy a good thing), but the fact that I am using hormones to relieve pain, basically. If left to its own devices, my body can produce such pain and significant mood swings that it can render me into a suicidal mess quite quickly, and I am genuinely concerned that this is going to become an issue again. I find myself asking if this is a trade-off I can handle, and honestly I don’t know. It is only day four and the pain is beginning to come back… I guess I am going to have to wait and see what happens.

Only time will tell I guess, and I have my first increase on Sunday.

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6 responses to “Medication on Deck; Trileptal

  1. Hi there! Just wanted to add another oxcarbazepine testimonial. I’ve been on this drug for over a year and it has been a lifesaver. I cannot say enough about how after a few months, it evened out my moods enormously. The side effects you are describing are not insignificant, so you should talk to doc. I did have the same numbing feeling followed by an almost euphoric state, but they were nowhere near mania or depression, so I kept on with the med. The worst part by far was the lethargy. Completely unacceptable when you have to wake up and go to work. So, over the course of a few months, my doc and I devised a plan. I take 300 mg in the AM and 900 mg before bed so I can function throughout the day. It works beautifully. The only thing I would caution about is caffeine intake when you’re swallowing that morning pill. I would get so incredibly ‘high,’ sometimes with dizziness (a whee! Dizziness, not a falling-on-the-floor dizziness), so I cut back on the number of cups and how fast I gulped that all important cup #1 and things evened out within 2 weeks.

    I really hope this works for you! You deserve a break with having to shake up that med cocktail so often.

  2. Why can’t my doctor explain meds as well as you? :-)

    I’ve stopped taking the Lamictal myself, but I am really hesitant to jump back into another one too quickly. I am still having some residual effects of the Lamictal (the jerks and tremors mostly and dizziness, and my calves are still sore after at least five days off of it as close as I can figure since I lost some time). Do you have any particular waiting period to get one batch of poison out before gulping down the next? I was thinking a week, but I Think it has been a week. My next psychiatrist appointment is in 8 days. I am on the fence about demanding more of a break in drugs.

    • Sarah @ bi[polar] curious

      Chances are, your doctor hasn’t experienced them first hand! I am pretty glad, though, that my doctor has not been through the gamut of medications because it seems anyone who has is quick to recommend what has worked for them and shun anything that hasn’t.

      Honestly, I haven’t had much of a waiting period in the past. I have been working hard on trying to find a scrap of anything that works that I haven’t given myself much leeway in that department. There have been one or two instances of a 24 hour turn-around time (though that sort of quick change of medications usually only happens while hospitalized) but for the most part I have to wait for my next appointment and pharmacy anyway, so anywhere from a couple of days to a week, maybe two. If Trileptal doesn’t work out, I am definitely going to have to take a break. Both for the sake of my sanity, and my wallet.

      • Between reading your blog and watching the Stephen Fry documentary, it seems rather ironically crazy that people in our situation are willing to take medications that make us feel SO AWFUL just on the off chance they make us better in the long run. Or maybe other people don’t get this sick when trying out new meds, but it seems a fair number do.

        I’m finding each day I feel marked improvement, so I think I will be ready to jump back in when I have my appointment. I guess the detox is exponential or something.

        Do you not have insurance? I was lucky this year to finally get into a Maryland program called PAC (Primary Adult Care Program), or state insurance for low income people. Financially, I’ve been eligible for a while, but I find the whole process horribly intimidating. So the social worker at the clinic I go to filled out all the forms for me. Also, the local hospital has a charity care program (a throw back from when it was run by nuns), so I don’t have to pay most charges. Meds are either $2.50 or $7.50. Is there a similar program in WA? I see Basic Health in the Google search.

        thanks!

      • Sarah @ bi[polar] curious

        I was on the WA state program after my hospitalization last year, they had basic medical and you also got $200 a month to cover other bills. Well, they scrapped the cash program a few months later, and I didn’t have any cash to keep paying my bills so I couldn’t stay on the medical program because if I had any income they would kick me off.

        I am actually much better off not being on the state medical program here. The wait-list was so long to see a psychiatrist that I was on the program for over six months and never got to see one. That meant I had the cost of most medications covered, but was not allowed to see a psychiatrist to prescribe me anything! Extremely frustrating.

        Now I use charity care through a local hospital. All of my visits there are covered, so I can see anyone from a primary care doctor to my psychiatrist or even a dermatologist (though after seeing them I find their practices a little questionable in the dermatology region) for free. The trouble is the exact opposite as before, because my visits are free and I can get as many prescriptions as I like, but I have to pay the full cost for all of them. Frustrating, but better off than not having access to any medications at all.

        Oh, and I tried to make both of these programs work to my advantage at the same time… but it didn’t work. The hospital wont give charity care to anyone already receiving help from the state. Dang!

      • What a mess! I honestly expected better from WA ;-)

        I feel pretty lucky to have what I have now. A friend asked me about maybe moving to somewhere I could maybe get more work, but the cost of moving and the loss of all my medical services just isn’t worth it.

        I wonder what it is like to have these types of mental heath concerns in Canada, the land of socialized medicine.

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