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Starting Trileptal...... scared, nobody here has said anything good Rate Topic: ***** 1 Votes

#1 User is offline   Ashdene 

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Posted 22 October 2009 - 10:54 AM

Went to my pdoc today, and we came to the conclusion that epilim was not for me. If it was going to make me fat i just wasn't going to be able to force it down my throat.

So he said he wanted to put me on Trileptal, 300mg at night for the first week and then 300mg both morning and evening. He said i would most probibly feel it for the first week - which now i am not sure what that entirely means!

But going through peoples post, and not many people have much to say about it, or at lest anything good?

Has anyone got any expierences with it? Does it work? How horrid is it? I am a little nervous. Please somebody give me some info or expierences! Why is there nobody talkingabout it?

love Ashdene
xox
In my opinion i just way over think everything..................... is that a dx? If not, apparently bipolar, ADHD, dyslexic with a ton of history of EDs and its consquences
Rx: Seroquel(150mg), Lamictal(300mg), trileptal(1200mg) xoxoxox

Hope everybody has a good day


#2 User is offline   beetle 

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Posted 22 October 2009 - 11:02 AM

I don't remember anything horrible about it. I think I started at a lower dose than you are...hard to remember. It just didn't seem to work for me but I don't think I had horrible side effects. That probably doesn't help you much.
Dx:
"My working Dx is Bipolar. Yes, there seems to be some HFA traits." ~my pdoc
Possibly BP II ~a Psy.D

Rx:
AM Wellbutrin XL 300mg, Ritalin LA 30mg, Klonopin .5mg,
PM Geodon 160mg, Klonopin 1mg

Dx past: BP NOS w/ schizoid tendencies, Double depression, MDD or something
Rx past: Lithium+prozac, tegretol+paxil, effexor+wellbutrin, lexapro, cymbalta, provigil,
zoloft+ strattera, abilify (twice)+wellbutrin, lamictal+wellbutrin, risperdal, trileptal and a dash of xanax and klonopin

#3 User is offline   nalgas 

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Posted 22 October 2009 - 12:13 PM

If I'm remembering right, I started at the same dose and increased it on the same schedule as you. I don't know about "feeling it" for the first week. I didn't notice a whole lot until I got over 600 mg/day. It did help somewhat at 600, but it was fairly subtle for me. It didn't make a big enough difference for me to stay on it, because I had to raise it high enough that I started having more side effects than it was doing good (mostly just forgetting words and stuff like that). Out of a couple dozen things I've tried, it's one of only a couple that helped me and that I tried more than once (I went back on it again for a couple months a year or two later after the first trial, because it was and still is one of very few things that made a positive difference for me), even if it didn't end up being the magical right one for me in the end.

#4 User is offline   miab 

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Posted 22 October 2009 - 01:19 PM

The impression (rightly or wrongly) that I've gotten over my years on CB is that trileptal isn't one of the most common meds prescribed for BP in the US and Canada, and since the membership here is predominantly north American, that's probably why you haven't seen a lot of posts about it.

I think I was on it for a little over a year before it stopped working at the highest dose I could take. The main thing I remember about starting it is that it was incredibly sedating for the first week or so. So it's good that your doc has you only taking it at night initially. Once I'd reached a therapeutic dose (I think it was 1200mg) there were very few side effects. When that dose stopped working and pdoc tried to increase it, I couldn't function because of unbelievable dizziness. When it works, it works well, though not as monotherapy, but I'm assuming this is just a substitution for the epilim and you'll still be taking the other meds.

So from my own experience (you know we're all different blah blah) I'd say expect to be groggy/sedated when you start up with it and plan your nights accordingly. If you have to be up for work at a godawful hour, make sure you take your meds and get into bed earlier. And hang in there - the start up effects shouldn't last past the first couple of weeks. Honestly, if you're looking for a stabiliser with a relatively low side effect profile, this is the one to go for. Good luck!

M xo
BPI, current daily cocktail: Lamictal 400mg, Lithium 750mg, Seroquel 1000mg, Ativan 0.5mg prn

The horror of getting up is unparalleled, and I am filled with amazement every morning when I find that I have done it.
-- Lytton Strachey

Please don't PM me if you don't know me. I have more than enough to deal with already, and it just makes me cranky.

#5 User is offline   Ashdene 

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Posted 22 October 2009 - 02:17 PM

thanx guys!
Not so worried now, few!

Oh and Miab, thanx for reminding we live on the other side of the earth! Always forget that. Will definately take it early, say now cause you know i always get up early! Still taking my other meds, so hopefully this will do the trick finally! Actually feeling much better about it then the epilim.
I'll let you know if i survive tonight, i hate feeling over drugged! :(

thanx guys
Night
xoxo
In my opinion i just way over think everything..................... is that a dx? If not, apparently bipolar, ADHD, dyslexic with a ton of history of EDs and its consquences
Rx: Seroquel(150mg), Lamictal(300mg), trileptal(1200mg) xoxoxox

Hope everybody has a good day


#6 User is offline   crazyleila 

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Posted 04 November 2009 - 01:39 AM

View PostAshdene, on 22 October 2009 - 01:17 PM, said:

thanx guys!
Not so worried now, few!

Oh and Miab, thanx for reminding we live on the other side of the earth! Always forget that. Will definately take it early, say now cause you know i always get up early! Still taking my other meds, so hopefully this will do the trick finally! Actually feeling much better about it then the epilim.
I'll let you know if i survive tonight, i hate feeling over drugged! :(

thanx guys
Night
xoxo


I had some severe side effects, though I was only on it for 2 weeks. My head was so dizzy I couldn't even walk through my house without running into walls. I certainly could not drive. It wasn't like vertigo, it was more of a "way too drunk" feeling where your head just feels like a fishbowl with the water sloshing around. Just as I was about to call my pdoc and say that I need off of it, I developed hives all over my body (allergic reaction) and had to stop it anyway. I didn't notice any affect on my mood, but I was on it such a short time that doesn't necessarily mean anything.
dx: bipolar (still working out whether it's I or II), with high anxiety and agitation during manic/hypomanic episodes.
Trying lithium after being unable to tolerate lamictal and trileptal.
29yo, married with 2 young kids, trying to get by and live my life without self-destructing.

#7 User is offline   eldorado 

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Posted 04 November 2009 - 02:05 PM

I liked it but had to get off of it due to sodium issues. The stuff will make you thirsty and leech sodium and chloride (salt) out of you system. I'm talking about craving for potato chips, pretzells, chicken soup, any thing with lots of salt. I finally wound up with water toxification, a combination of too much liquid and too little sodium. It put me in the hospital. With out the salt to make the nerves conduct electricity, I was suffering all sorts of low sodium issues. Just watch your liquid and sodium levels. Blood tests will reveal if there is a sodium issue and you can feel it, like being drunk or having vertigo.
There is always another way.


#8 User is online   LilacOutsideMyWindow 

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Posted 02 March 2010 - 09:51 PM

I realize this is an old post, but I'm about to start Trileptal myself, and was hoping for some input.

Is anyone still on it? thoughts, experiences, etc?
Dx: Nov '09 = BPI (years before GAD, '08 PMDD)
Rx: Abilify 10mg, Seroquel 25mg, Trileptal 150mg BID

#9 User is offline   scatty 

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Posted 03 March 2010 - 04:51 AM

Trileptal worked great for my mood issues. I ended up allergic to it, unfortunately.
Dx:
Bipolar I, OCD

Meds:
Lithium 1350 mgs.
Lamictal 300 mgs.
Risperdal 3 mgs.
Anafranil 225 mgs.
Klonopin 2 mgs.
Doxepin 100 mgs.
Fish Oil 1440 EPA
960 DHA (8 capsules)

#10 User is online   LilacOutsideMyWindow 

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Posted 03 March 2010 - 08:39 AM

THanks!

I think I have more questions:
Did you take it all at once, or twice a day? My Rx is for 150mg twice a day. I took it last night along w/seroquel and abilify, and was knocked out, but that could be from seroquel (although it felt different) so I'm not going to take a morning dose until the weekend when I don't have to drive.

Did it make you drowsy/tired? Other noticable side effects?


Thanks again for responding, there is so little about this med on the forums!
Dx: Nov '09 = BPI (years before GAD, '08 PMDD)
Rx: Abilify 10mg, Seroquel 25mg, Trileptal 150mg BID

#11 User is offline   nalgas 

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Posted 04 March 2010 - 05:56 AM

When I took it, it was twice a day. As high as 1200 mg/day, I never felt tired or sedated from it, but it's not unusual for people to. That side effect can sometimes improve over time, though, so it might not last after your brain gets a chance to get used to it.

#12 User is online   witchywoman 

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Posted 04 March 2010 - 07:36 AM

I take 600mg x2 a day. It has worked well for me.
Dx:Bipolar 1 mixed type, OCD, anxiety

Rx:Seroquel XR 600mg, Trileptal 1200 mg, Klonopin .25 mg, Lithium Carb ER 600 mg, Cymbalta 30 mg, Synthroid 75 mcg, Nexium 40 mg

#13 User is online   LilacOutsideMyWindow 

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Posted 04 March 2010 - 09:53 AM

Thanks!
Dx: Nov '09 = BPI (years before GAD, '08 PMDD)
Rx: Abilify 10mg, Seroquel 25mg, Trileptal 150mg BID

#14 User is offline   crtclms 

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Posted 04 March 2010 - 08:57 PM

My husband has been on Tri-leptal for 5 years. The main side-effect for him were weight loss. (yay!) He takes it 3 times a day, to control his seizures better. And to deal with the electrolyte/sodium issue, he literally just eats salty snacks constantly, and that at least keeps his sodium levels high enough that they aren't worried. He does not have high blood pressure, so I am not sure if this is a viable solution for everyone.
crtclms

Dx: Bipolar NOS, with refractory Migraine
Rx: Depakote; Imitrex (100mg tablets, with 10mg Reglan); Imitrex injectables; Lamictal; Medical Cannabis; Prilosec; Wellbutrin; Xanax
FAIL: Amerge; Anaprox; Buspar; Di-Hydro-ergotamine, inhaled and injected; Inderal; Klonopin; Lithium; Neurontin; Propanalol; Prozac; Relpax; Sansert; Tegretol; Topamax; Trazadone; Verapamil; Zoloft
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#15 User is online   LilacOutsideMyWindow 

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Posted 05 March 2010 - 10:25 PM

Ohhh, some weight *loss* sure wouldn't hurt over here either, dont' mind that s/e.

I'm beginning to think that maybe Trileptal is just "ok" for enough folks that it doesn't get a lot of attention on the 'net - ppl are more likely to share bad stories rather than just "it's doing fine", right?

So far so ok for me, too. I took my first daytime dose today because dh was home, and I didn't experience any dizzyness or anything that would have prevented me from driving or being home alone with the kids, so I'm feeling fairly positive about this med. Hasn't lifted me out of depression, but I didn't expect it to - I just want stabilty, please and thank you. Hopefully this will work for that.
Dx: Nov '09 = BPI (years before GAD, '08 PMDD)
Rx: Abilify 10mg, Seroquel 25mg, Trileptal 150mg BID

#16 User is offline   nalgas 

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Posted 06 March 2010 - 01:12 AM

View PostLilacOutsideMyWindow, on 05 March 2010 - 10:25 PM, said:

I'm beginning to think that maybe Trileptal is just "ok" for enough folks that it doesn't get a lot of attention on the 'net - ppl are more likely to share bad stories rather than just "it's doing fine", right?

I think that could be part of it, because it's usually easier to find horror stories about just about anything than people talking about how great it is, just because people like to complain about things in general. It's also not quite as popular/trendy of a med as some stuff, and while it's one of the anticonvulsants that does also help a decent number of people with non-seizure issues, I think it's still more widely used for epilepsy than things like mood disorders and doesn't have the whole "trendy crossover miracle wonderdrug" thing going for it that something like Lamictal does, even though it's a perfectly decent med in its own right. At a place like this with a much larger population of people with mood disorders and migraines and stuff, you're going to see a lot more talk about Lamictal and Topamax and Depakote, in terms of ACs, while meds like Trileptal and Tegretol and Keppra are kind of underrepresented on the boards, even though they each to some extent also have psychiatric use, not just neurological.



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