netsavy006 Posted September 19, 2009 Share Posted September 19, 2009 I know I've been asking very wild and weird questions lately and I hope I don't get warned or booted for asking this weird one but with my pdoc seeing that Lithium, Topmax, and Neurontin not being options I think he is going to possibly think about putting me on Lamictal. He mentioned it to me once before and I'm wondering if they ever even prescribe it to BP1 folks and if someone who has BP1 is on this med does it work for them and what dose are they on, what side effects did they initially experience and how did you cope with them. I'd be most happy if my question(s) could be answered because it seems like Lamictal might be the next step my pdoc is going with me once we work off the other 3. Thanks, Andy... Link to comment Share on other sites More sharing options...
Heatherta7 Posted September 19, 2009 Share Posted September 19, 2009 I have BP1 and I take Lamictal and Abilify. The Lamictal was very hard at first. You have to GRADUALLY move up on it as it made me vomit each time I took it. I find if I take the Abilify and 1 Lamictal in the morning and 1 Lamictal at night I am good. Now everyone is different but I tried this way as others on the board were saying that is what they did. I tried it and for me it worked. After the vomitting subsided the Lamictal Abilify cocktail was working great for me. Now it has subsided and I will ask my pdoc to up my doses. Also, you cannot just stop the Lamictal you have to ween yourself off or its hell. (I couldn't afford the Lamictal anymore so when I ran out I waited til my next pdoc appointment to tell him, BIG MISTAKE) Another note, Lamictal is VERY expensive. I now take the generic form and pay $32 at Costco for it versus the $275 at Walgreens. I hope this helps you. Good luck and I wish you well! Link to comment Share on other sites More sharing options...
Ophelia Posted September 19, 2009 Share Posted September 19, 2009 [...] with my pdoc seeing that Lithium, Topmax, and Neurontin not being options I think he is going to possibly think about putting me on Lamictal. [..] I'd be most happy if my question(s) could be answered because it seems like Lamictal might be the next step my pdoc is going with me once we work off the other 3. Why on earth are you going off all three of those meds? I think that you have seriously left most of us beyond speechless at this point. I'm wondering if they ever even prescribe it to BP1 folks and if someone who has BP1 is on this med does it work for them and what dose are they on, what side effects did they initially experience and how did you cope with them. I'd be most happy if my question(s) could be answered because it seems like Lamictal might be the next step my pdoc is going with me once we work off the other 3. If you had done any research at all, you would know that Lamictal is in fact used on "BP1 folks." It is even blatantly right there on lamictal.com. Part of me really thinks that you do not want to get better, because you seem to do everything in your power to nix every single med that has worked for you or might work for you for one reason or another. It is really getting kind of old, Andy. If you want to be treated like a grown-up, you really have to start acting like one. Yeah, I this may be a little harsh, but I think it is necessary. We all have problems, we all experience side effects, we all experience lots of things. Don't get me wrong, Lamictal is a fine drug, but I still think you are making a mistake my dropping everything else. Whatever. I don't know why I bothered with this because it is just going to fall upon deaf ears anyway. Link to comment Share on other sites More sharing options...
netsavy006 Posted September 19, 2009 Author Share Posted September 19, 2009 Why on earth are you going off all three of those meds? I think that you have seriously left most of us beyond speechless at this point. To put it in the nicest way the Lithium, Topamax, and Neurontin don't work. My mom has told me she has not seen an improvement since I started Topamax. My brother told me he's seen a negative change since starting Neurontin. So those are 2 I'm taking off right off the bat. This if from family observation. I don't think my family would lie to me. I've not seen a change from Lithium because I've still been in and out of hospitals since starting it and they check it both in and out and find out, the blood levels are in the normal range, so they don't adjust it (of course so I don't become toxic from it). This put's me though too much stress med wise. I can't take Depakote or Tegratol because of other problems so I'm stuck with other choices, but I'm unsure of what they are. The unknown really scares me to death. He told me he'd half the Neurontin I'm taking next week but that's not possible because you can't split a 300mg capsule in half or count beads. Plus I still have to get off of Topamax and Lithium and I still have to work with Zyprexa Zydis, I don't know at this point. I'm trying so hard (while it may not seem like it) to stay out of the hospital but I feel like I want to go back but I can't because their last option was to send me to a state hospital and I don't want that so I really don't know what to do. I feel like I'm at my wits end with all this. I just wish I could find more help and advice with all this stuff. I wish the program had some type of one on one therapy but they don't. I just feel afraid and hopeless in the way that everything is. I'm just so grateful that I'm not at the "finger across the neck" point yet. (thoughts/actions). Link to comment Share on other sites More sharing options...
nalgas Posted September 19, 2009 Share Posted September 19, 2009 I'm wondering if they ever even prescribe it to BP1 folks Not only do they, it's one of the very few meds explicitly approved for that use by the FDA. Link to comment Share on other sites More sharing options...
gizmo Posted September 19, 2009 Share Posted September 19, 2009 To put it in the nicest way the Lithium, Topamax, and Neurontin don't work... I've not seen a change from Lithium Hmmm... let me quote straight from the horse's own mouth on this.... Finally on Lithium after another visit to the psych unit Posted 29 April 2009 - 10:55 AM After yet another visit to the psych unit I decided that enough was enough. I figured I better try one of the more conventional treatments. So now I'm on Lithium Carbonate. I started at 300mg 2x/day and Monday my levels were checked and it came back 0.3. So it was raised to 300mg AM and 600mg HS. So far so good. I got lucky because I was able to reduce my Zyprexa dosage from 10 to 5mg so that was helpful. I was able to get off of Cogentin too. That was a big help because the Cogentin was making me dizzy. And they decreased the dosage when I went in from 1mg 2x/day to .5mg 2x/day and now I'm not on Cogentin @ all. But the Lithium I feel is a help to me. I've only wished I listened and got on it sooner but we live and learn. I have to get my levels checked again in a week and I have an appt with a pdoc tomorrow. Then I guess it's back to my regular psychiatrist. So all in all I'm doing better now and I hope for it to continue. I'm beginning to agree with Ophelia. I think you are a person who can't take being stable. When you get stable for more than three weeks, you start looking for things to change. Why is that? You give me a straight, coherent, and no-bullshit answer, and I'll rethink my position. But I'm just some crazy-ass person on an internet board, so what does my opinion matter? Link to comment Share on other sites More sharing options...
AnneMarie Posted September 19, 2009 Share Posted September 19, 2009 Andy, what you are saying is that Topamax didn't improve your situation per you mom, and your brother says there's been a negative effect with the addition of neurontin. Do your mom and brother agree on both of these meds effects? Or is it that one has seen you at one point (brother) and that your mom who I think sees you all the time, feels different about the neurontin? In any case, this doesn't mean that Lithium is not helping. It just might not be enough on its own, and that one or both of the add ons are not so helpful. Also, your doc is not apt to take you off all three at once because that would sort of be negligence if there is no emergency calling for it, which it sounds like there is not. Lithium can be worked with pain meds, btw. It needs to be coordinated and managed in conjunction with whatever else you are taking. So, if it has helped to a reasonable degree, then you'd be silly to stop. Lamictal, as others have said, is approved to treat Bipolar I. Often, however, it is too activating to take as monotherapy. Look on the boards for those with BPI who don't take anything else. That's hard to find. It is supposedly a strong anti-depression drug and not as strong at managing mania. Personally, I cannot take it as monotherapy w/o being crazy. It also doesn't help me with mixed states which is another illness aspect that it is approved to treat. YMMV. Most likely, you'll need another med. Lithium and Lamictal work well for many. If not Li, then meds like Depakote, Trileptal and Tegretol are paired with it as well as your AAPs. So, now with all that said, you need to let your doctor be the doctor and you need to give meds long enough to work. I'm not sure how long you've been on your current cocktail, but I know that you have jumped on and off meds very quickly many times before. That does you harm. You may also have to accept some side effects. It sucks, but it sucks less than being crazy. It also is the way it is for many if not most. Link to comment Share on other sites More sharing options...
netsavy006 Posted September 19, 2009 Author Share Posted September 19, 2009 I'm beginning to agree with Ophelia. I think you are a person who can't take being stable. When you get stable for more than three weeks, you start looking for things to change. Why is that? You give me a straight, coherent, and no-bullshit answer, and I'll rethink my position. But I'm just some crazy-ass person on an internet board, so what does my opinion matter? Well even when starting the Lithium I've been in and out of the hospital 2x/month so what help is that. That's not stability. That's instability. So for the doctor to help me now he's got to adjust my medications so I can become more stable. I even mentioned the frequent hospital stays after starting Lithium in my previous post if I do recall. Link to comment Share on other sites More sharing options...
sorrel Posted September 19, 2009 Share Posted September 19, 2009 What are your primary symptoms? What types of things are affected when you say a med is "working" or "not working"? For a med to "work," what symptoms would have to be reduced or eliminated? I've kind of been unclear on this all along. Link to comment Share on other sites More sharing options...
netsavy006 Posted September 19, 2009 Author Share Posted September 19, 2009 Andy, what you are saying is that Topamax didn't improve your situation per you mom, and your brother says there's been a negative effect with the addition of neurontin. Do your mom and brother agree on both of these meds effects? Or is it that one has seen you at one point (brother) and that your mom who I think sees you all the time, feels different about the neurontin? In any case, this doesn't mean that Lithium is not helping. It just might not be enough on its own, and that one or both of the add ons are not so helpful. Also, your doc is not apt to take you off all three at once because that would sort of be negligence if there is no emergency calling for it, which it sounds like there is not. Lithium can be worked with pain meds, btw. It needs to be coordinated and managed in conjunction with whatever else you are taking. So, if it has helped to a reasonable degree, then you'd be silly to stop. Lamictal, as others have said, is approved to treat Bipolar I. Often, however, it is too activating to take as monotherapy. Look on the boards for those with BPI who don't take anything else. That's hard to find. It is supposedly a strong anti-depression drug and not as strong at managing mania. Personally, I cannot take it as monotherapy w/o being crazy. It also doesn't help me with mixed states which is another illness aspect that it is approved to treat. YMMV. Most likely, you'll need another med. Lithium and Lamictal work well for many. If not Li, then meds like Depakote, Trileptal and Tegretol are paired with it as well as your AAPs. So, now with all that said, you need to let your doctor be the doctor and you need to give meds long enough to work. I'm not sure how long you've been on your current cocktail, but I know that you have jumped on and off meds very quickly many times before. That does you harm. You may also have to accept some side effects. It sucks, but it sucks less than being crazy. It also is the way it is for many if not most. I've been on Topamax since October of 08 and Mom has been fighting with the doctor's to get me off of it since she didn't see a difference in my mood since starting it and even the pdoc in the program asks "why do you take Topamax?" so even he is seeing something my old docs didn't. Mom and brother did collaborate and did see a negative impact on how I was doing on Neurontin with my mood. I'm only working off one medication at a time, not all of them at once. The goal is to be off of Topamax and Neurontin. I have no idea what's being done with Lithium yet, but I did explain to the pdoc that I don't feel that it helps me so he may take it off, but maybe when I get off the other meds it might be able to do a better job. I'm hoping that maybe I can get a doctor who will be able to collaborate with the pdoc so I can take an anti-inflamatory so I can stay on Lithium because maybe it is doing a better job then I think. Maybe I can combine Lithium and Lamictal because I do tend to fall into the depressions but after I get off of the other medications. We'll just have to wait and see. I'll continue to my best. I hope this helps explain it all. Link to comment Share on other sites More sharing options...
blackbird Posted September 20, 2009 Share Posted September 20, 2009 Agitating your meds so much is bad. If I did even a quarter of your med changes I would end up screaming demented in a psych ward. You've got to find a cocktail and stick with it and learn to work around it. As sorrel asked, what are your primary symptoms? what are you trying to eliminate? blackbird x Link to comment Share on other sites More sharing options...
netsavy006 Posted September 20, 2009 Author Share Posted September 20, 2009 Agitating your meds so much is bad. If I did even a quarter of your med changes I would end up screaming demented in a psych ward. You've got to find a cocktail and stick with it and learn to work around it. As sorrel asked, what are your primary symptoms? what are you trying to eliminate? blackbird x I've been having emotional ups and downs. I get to the point where I could cry at night. I still get panic attacks and high anxiety levels. Before starting Zyprexa, I was having trouble sleeping so something is interfering with that. I'm seeing things still, but I know it takes time for medicine to work. (better with than w/o Zyprexa). I'm being told by my doctor "calm down" and I can't so that must signal something is wrong. I have the feeling that I might be in a possible manic/mixed state... Link to comment Share on other sites More sharing options...
SashaSue Posted September 20, 2009 Share Posted September 20, 2009 "Emotional ups and downs," is pretty vague, but emotional ups and downs are kind of just part of life, no matter how well your meds are working. Given that most of the symptoms you're describing are anxiety symptoms, they don't really suggest you're in either a manic or mixed mood state. Link to comment Share on other sites More sharing options...
netsavy006 Posted September 20, 2009 Author Share Posted September 20, 2009 "Emotional ups and downs," is pretty vague, but emotional ups and downs are kind of just part of life, no matter how well your meds are working. Given that most of the symptoms you're describing are anxiety symptoms, they don't really suggest you're in either a manic or mixed mood state. Well one moment I could be laughing and having and good time and the next I could be crying and upset and be needing to get mom about even the smallest of things. Now Mom is getting tough and doesn't want me crying anymore and I feel she's getting mean about it, because I can't help that I have a mental illness. Link to comment Share on other sites More sharing options...
Ophelia Posted September 20, 2009 Share Posted September 20, 2009 "Emotional ups and downs," is pretty vague, but emotional ups and downs are kind of just part of life, no matter how well your meds are working. Given that most of the symptoms you're describing are anxiety symptoms, they don't really suggest you're in either a manic or mixed mood state. Well one moment I could be laughing and having and good time and the next I could be crying and upset and be needing to get mom about even the smallest of things. Now Mom is getting tough and doesn't want me crying anymore and I feel she's getting mean about it, because I can't help that I have a mental illness. Maybe you are too dependent on your mother...? Link to comment Share on other sites More sharing options...
SashaSue Posted September 21, 2009 Share Posted September 21, 2009 "Emotional ups and downs," is pretty vague, but emotional ups and downs are kind of just part of life, no matter how well your meds are working. Given that most of the symptoms you're describing are anxiety symptoms, they don't really suggest you're in either a manic or mixed mood state. Well one moment I could be laughing and having and good time and the next I could be crying and upset and be needing to get mom about even the smallest of things. Now Mom is getting tough and doesn't want me crying anymore and I feel she's getting mean about it, because I can't help that I have a mental illness. That sounds more like emotional lability than mood episodes. You can't help having a mental illness, but you do have choices about how you manage it. It's entirely possible that you could learn better ways of handling emotional distress than going to your mother. Link to comment Share on other sites More sharing options...
sorrel Posted September 21, 2009 Share Posted September 21, 2009 I think you need to be in therapy more than you need med changes. You could learn how to better handle your distress. Link to comment Share on other sites More sharing options...
gizmo Posted September 21, 2009 Share Posted September 21, 2009 Well one moment I could be laughing and having and good time and the next I could be crying and upset and be needing to get mom about even the smallest of things. Now Mom is getting tough and doesn't want me crying anymore and I feel she's getting mean about it, because I can't help that I have a mental illness. Like others have said, this could really be anything, and it doesn't necessarily have to be BP. I'm sure you of all people know the classic definition of BP I. "A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least one week (or any duration if hospitalization is necessary)." Changes in mood from moment to moment as you describe doesn't fit the definition of BP I (or II). So perhaps you and your pdoc should look elsewhere to see if you have additional conditions that are causing these behaviors. Other responders have given you suggestions. I also agree (for the 1,000th time) that therapy would give you tools to control your erratic emotions and behaviors. I mean, right now from this post you could have anything from BP to Aspie's to ADHD to BPD. In addition, if you want to grow up and live in the adult world, you are going to have to face the fact that, even though you have a MI and have certain uncontrollable baggage, you are completely in control of your life. "Because I can't help it that I have a mental illness" doesn't cut it at my house, and your mom is right to put her foot down at your house. If you are freaking out and want to cry, you can choose to do it in your room alone, or in the living room where your mom can hear it. Link to comment Share on other sites More sharing options...
blackbird Posted September 21, 2009 Share Posted September 21, 2009 I think you need to be in therapy more than you need med changes. You could learn how to better handle your distress. I second that motion blackbird x Link to comment Share on other sites More sharing options...
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