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Amy3boys
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Default Sep 08, 2019 at 04:46 PM
  #1
I have decreased my Geodon b/c of nasty akasthesia and trouble breathing (scary side effects). I am seeing my doctor on Wednesday and want to discuss adding or replacing the low of Geodon with a mood stabilizer. I want to stay away from antipsychotics if possible. I tried Lamictal several years ago and it improved my mood but I stopped due to extreme hair loss. I am wondering about Trileptal. Does anyone here take it and has it helped you? Thanks!
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Default Sep 08, 2019 at 05:02 PM
  #2
I took it for a while but saw no noticeable difference no side effects though

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Default Sep 08, 2019 at 05:50 PM
  #3
I was put on it while IP once, I was on about day 7-8 ? And I brushed my teeth and my gums started bleeding horribly, as I was rinsing my mouth my lip just split open , so it was early SJS ( Stevens Johnson Syndrome) It effects mucus membranes and especially mouth , so I stopped immediately of course , I got lucky it didn’t progress.

Although other than IV fluids there is no official treatment for it, it will usually resolve its self..

A fellow IP patient was also on it and it was a miracle drug for her.

I had zero side effects otherwise and had high hopes for it.

I never had a problem with SJS while on Lamictal and that’s the one that most Doctors are quick to remind of the possible risk.

I have always had the odd side effects on things.

Have you ever tried Invega? I took that before and it was one of the truly weight neutral meds for me. It brought me quickly out of a horrible mixed episode and my mind was very quiet for a change.

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Default Sep 08, 2019 at 06:15 PM
  #4
I take 1200mg of it, I switched over from Depakote several years ago, works better for me and it also is weight neutral so I lost the weight I gained on Depakote

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Default Sep 08, 2019 at 06:24 PM
  #5
Quote:
Originally Posted by ~Christina View Post
I was put on it while IP once, I was on about day 7-8 ? And I brushed my teeth and my gums started bleeding horribly, as I was rinsing my mouth my lip just split open , so it was early SJS ( Stevens Johnson Syndrome) It effects mucus membranes and especially mouth , so I stopped immediately of course , I got lucky it didn’t progress.

Although other than IV fluids there is no official treatment for it, it will usually resolve its self..

A fellow IP patient was also on it and it was a miracle drug for her.

I had zero side effects otherwise and had high hopes for it.

I never had a problem with SJS while on Lamictal and that’s the one that most Doctors are quick to remind of the possible risk.

I have always had the odd side effects on things.

Have you ever tried Invega? I took that before and it was one of the truly weight neutral meds for me. It brought me quickly out of a horrible mixed episode and my mind was very quiet for a change.
I think it depends on the person because I have a different experience with Invega, it didn't help as much and I gained a crazy amount of weight, which I lost getting off it. Currently taking thorazine and abilify with a mood stabilizer and doing the best I ever have

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Default Sep 08, 2019 at 06:24 PM
  #6
I’m on Trileptal now. Works fine for me.
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Default Sep 08, 2019 at 07:04 PM
  #7
I will look into Invega and may ask about it. I have had severe depressions and just occasional hypomanic symptoms when meds aren't right (I don't get manic). Thank you!
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Default Sep 08, 2019 at 07:16 PM
  #8
I have taken Trileptal in the past. I never felt okay on it. I like lamotrigine much better.
We are each different. You might be fine on it.

If you have severe depressions which are difficult or impossible to treat, please see the treatments section and look for "Mirapex."
I wish you well.

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Default Sep 08, 2019 at 07:34 PM
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I took trileptal a couple of different times. Never did much for me. Felt no different on it. And something happened with my sodium levels, I think they got low. So my doc took me off. A few people here have had success with trileptal though so you never know.

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Default Sep 08, 2019 at 07:59 PM
  #10
I was only on Trileptal briefly. They started me in the hospital, then I continued briefly in an Intensive outpatient program where they switched me.

I don't recall much of anything about Trileptal. I know there are fewer drug interactions with Trileptal than there are on Tegretol (its related older medication). Also, I know that there is less (or no) need for blood levels to be done, unlike Tegretol.

I need my Tegretol, but likely for reasons not typical to most. I have read that Tegretol's efficacy seems to be higher for more people than Trileptal, but obviously Trileptal can be great for some.

Note: Invega is an antipsychotic. Trileptal is an anticonvulsant moodstabilizer. Different class of bipolar meds.
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Default Sep 09, 2019 at 03:50 AM
  #11
I have been on Trileptal for several years. It's been much better for me than lamictal was. It's weight neutral and I haven't had side effects other than when I majorly upped it quickly once when I got mixed, but it only lasted a couple days.

As another person has I think mentioned, it can lower your sodium. I used to take 1500mg but had to cut it down to 750mg due to this issue. So if you take a fair amount of it, consider salting your food more.
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Default Sep 09, 2019 at 04:14 AM
  #12
I couldn't tolerate it. My pdoc ordered the lowest dose pills to start with and I was cutting them to 32nds, which is really just crumbling the pill. I could not wake up on it. I could have slept for 3 weeks solid just on that tiny whiff. So after a couple weeks we stopped it and did something else.

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Default Sep 09, 2019 at 06:33 AM
  #13
It would be great if this thread was moved to the new "Bipolar Treatments" sub forum. It more than qualifies for being there, and there is great sharing here that many would appreciate. Trileptal experiences are not present there.

This thread will eventually get lost in this general forum. It wouldn't in the "Bipolar Treatments" sub forum, which seems to be rather popular.

Way to go, fern!

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Default Sep 09, 2019 at 10:10 AM
  #14
Quote:
Originally Posted by BirdDancer View Post
I was only on Trileptal briefly. They started me in the hospital, then I continued briefly in an Intensive outpatient program where they switched me.

I don't recall much of anything about Trileptal. I know there are fewer drug interactions with Trileptal than there are on Tegretol (its related older medication). Also, I know that there is less (or no) need for blood levels to be done, unlike Tegretol.

I need my Tegretol, but likely for reasons not typical to most. I have read that Tegretol's efficacy seems to be higher for more people than Trileptal, but obviously Trileptal can be great for some.

Note: Invega is an antipsychotic. Trileptal is an anticonvulsant moodstabilizer. Different class of bipolar meds.
I see you take Lamictal too. It improved my mood when I took it several years ago but I stopped it due to extreme hair loss. I'm wondering if it's worth trying again and hoping to not get that side effect. Have you had hair loss with Lamictal or other meds? Thanks!
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Default Sep 09, 2019 at 01:59 PM
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I see you take Lamictal too. It improved my mood when I took it several years ago but I stopped it due to extreme hair loss. I'm wondering if it's worth trying again and hoping to not get that side effect. Have you had hair loss with Lamictal or other meds? Thanks!
Hi Amy3boys. Yes, I take a small dose of Lamictal in addition to my largish dose of Tegretol XR and Seroquel XR. Lamictal, at 100 mg, doesn't give me any side effects at all. I've been on the 100 mg for about 8 years now. My psychiatrist doesn't increase the dose because Lamictal has been activating for me.

There was a time in the past (maybe 10 years ago) when I was on 300 mg of Lamictal with some dose of Abilify. It was very activating, and over a number of weeks I became manic and hospitalized with psychosis. I recall on 300 mg having mild memory issues, but not hair loss. The only other side effect I remember was sweating, but that may have actually been from my growing mania, and not Lamictal itself.

I have had a period of hair loss on a bipolar medication, but it wasn't on Lamictal. It was on Lithium ER. That period started a couple years in to taking 900 mg Lithium ER, then it sort of stopped gradually after a year. I'm not sure why it was just temporary, but I was grateful. Luckily, I have always had a huge mop of hair, so though I lost a lot, I still had plenty enough that the loss wasn't noticeable to others.

To my knowledge, in addition to Lithium, Depakote is also notorious for causing some hair loss. However, I took Depakote for a year, about 9 years ago, and did not have that side effect. Who knows if any new side effects would have ever developed, or any that I had, would have faded away.

I can't know if Lamictal would cause you hair loss during a second trial. I can say that a few medications I tried a second time, didn't give me all the side effects I had the first time I tried them. The opposite was also true.

I hope that you find a good medication cocktail that serves you well, with the fewest side effects (if any).
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Default Sep 09, 2019 at 02:13 PM
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Trileptal did nothing for me, no mood stabilization, no side effects, I was convinced I was taking a sugar pill.
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Default Sep 09, 2019 at 06:38 PM
  #17
Thank you!!
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