Registered Nut Posted August 24, 2008 Share Posted August 24, 2008 Hi all, So I started on tegretol...this is my 4th day. Yesterday I just konked out! Anyone have much experience with it? My fingers are puffy, and I sure cannot afford to gain weight. I can tell my mood is definitely more stable, and better at times. Today I was to increase the dose. So I feel kind of wacky and my blood pressure is up, and my weight. Plus lots of things good are happening, my son and his girlfriend just had twin girls Thursday night, and they are beautiful! Plus! I have a job interview Tuesday, it is not what I wanted but it is a job, which I might just think about doing part time so it will not be overwhelming. I would rather do full time, but I do not want to get loaded up with a huge caseload of patients. I will have to see if this company gives you the full orientation to the paperwork and etc. That was the problem with my last job. It is Hospice home health. They will overload you with work (the bad companies) and not give you the training you need and then start demanding more and more out of you! Anyway, I would really like to hear anyone's experiences with Tegretol, hopefully good ones! Thanks, Registered Nut Link to comment Share on other sites More sharing options...
Silver Posted August 24, 2008 Share Posted August 24, 2008 I loved Tegretol. The sedation would get better after about a week at each dose increase. If the dose increases are hitting you hard, it's worth calling your psychiatrist and asking if you can just go slower on the titration. Tegretol (carbamazepine, abbreviated CBZ) has a neat little trick called autoinduction, in which it kicks its own clearance into overdrive once you start taking it. In practical terms, what this means is that you may be doing great and then suddenly need to turn the dose up within a couple of weeks. I had a little edema on it at first, but it went away. I never found a convincing explanation for why I had it. My electrolytes were all normal, so it's a mystery to me. I didn't change salt intake at all. It did make me incredibly photosensitive - as in I would sunburn through my clothes. But I loved how it worked on my brain. Loved it, loved it, loved it. Steady, calm, coherent thinking, ended mixed stuff very nicely. Some ditziness, but who's to say that's not just me? Unfortunately, I have had very bad reactions to it twice now. The first time, I developed EMM from Tegretol (with other rx), and I ended up with a skin graft on my flank. We retried Tegretol very cautiously this year and it worked great again, but I also stopped clotting. I love it, it doesn't love me. My mom has since helpfully informed me that I'd been on it as a little kid for seizures, and that it worked well but I'd had to stop it because I was "very allergic and had to go to the hospital and get a transfusion." Gee, Ma, it would have been nice to know this a few years ago. I was about 4 at the time, and it never occurred to her I might take it again. They aren't kidding about the blood monitoring, especially in the first 6 months. Keep up on it. When it works, it works really well. It's one of those love it or hate it drugs. Take lots of notes at work, and stick to your guns as to the part-time, if you think that's realistic for you for now. Link to comment Share on other sites More sharing options...
Registered Nut Posted August 24, 2008 Author Share Posted August 24, 2008 Hi Silver, Thanks for the info. What is EMM? Now you have me worried. I know one of the side effects can be a fatal skin reaction called Stevens Johnsons syndrome, and I have seen it in one of my patients. It is horrible. I feel very woozy and not brave enough to even drive or go out today. My mood is so much better like you said yours was. I sure hope I can get adjusted to it. I am taking 200 mg twice a day now. I did read up on it. Just my luck would be to not be able to take it! I hope that does not happen. My main concern too right now is my blood pressure. It was 182/102 one time today. Nurses are like hypochondriacs! I am curious about what EMM is. Thanks Registered Nut Link to comment Share on other sites More sharing options...
Silver Posted August 24, 2008 Share Posted August 24, 2008 EMM = erythema multiforme major, which is basically the same process as SJS. And I had plenty of warning it was coming; I was also taking other SJS players along with the Tegretol, please note, as well as having influenza immediately prior. If the wooziness persists, call your psychiatrist and ask if you can back off a smidge for a few days. It does get better, really... I never found any particular benefit from time-release formulations as opposed to immediate-release, but I know some people swear by them for the sedation. Link to comment Share on other sites More sharing options...
Registered Nut Posted August 26, 2008 Author Share Posted August 26, 2008 Hi Silver, So what drug, if any are you able to take for a mood stabilizer? I seem to be "allergic" to every single one! Last night I did not take my evening dose of tegretol, and I still feel woozy. I had to reschedule a job interview because I feel like hell. Woozy, and yesterday was the worst. I had the horrible feeling of disassociation from reality and oddly enough my mood was ok. I also felt short of breath and my bp went up even more! I feel like I need to see my internist, but I feel a tiny bit better than yesterday. This really sucks because I felt like it was helping my mood and I was less depressed at first. I think I had every side effect, nausea and still have that! Also a couple of times I had to lay my head down because I could not hold it up. I had to postpone a job interview, but luckily I got a call for a better job today. Any thoughts on any other mood stabilizer? I took neurontin which helped but a doc told me that it is not used anymore for a mood stabilizer. I have tried Depakote and Lamictal. And Lithium..ha! All of those made me sick or had side effects. I am seeing the nurse about it this week. I never felt so strange as I did yesterday, I felt very nervous about the way I felt. Thanks for the info Silver. Link to comment Share on other sites More sharing options...
fluffybirdie Posted August 28, 2008 Share Posted August 28, 2008 Good info to have from everyone! I will also start Tegretol. I'm going to start Friday night so I have the long weekend to work out any sort of start up issues. I'm pretty concerned about the fatigue thing But it's nice to see some good reviews. And If I am bothered by the sleepiness, I suppose we can just jack up my Wellbutrin. I hated Lamictal but stuck to it for almost 2 years before giving up, wish me luck on this one! Link to comment Share on other sites More sharing options...
Registered Nut Posted August 28, 2008 Author Share Posted August 28, 2008 Good info to have from everyone! I will also start Tegretol. I'm going to start Friday night so I have the long weekend to work out any sort of start up issues. I'm pretty concerned about the fatigue thing But it's nice to see some good reviews. And If I am bothered by the sleepiness, I suppose we can just jack up my Wellbutrin. I hated Lamictal but stuck to it for almost 2 years before giving up, wish me luck on this one! Hi fluffybirdie! I was beginning to think no one was on the boards anymore...I sure wish you luck. It definitely was not the drug for me, however I am disappointed because at first I felt less depressed and now, finally after it is getting out of my system I am starting back to feeling down again. I know that I am not going to feel better until my situation changes however. Luckily I have 3 job interviews and it is going to be a big step towards freedom for me. I hope you don't have the bad side effects I did. I do not believe I can take mood stabilizers. They throw my body and head into a tailspin. Evidently lots of people can take it and it works great for them! Best of luck to you. Do you have borderline personality? Registered Nut Link to comment Share on other sites More sharing options...
fluffybirdie Posted August 28, 2008 Share Posted August 28, 2008 Hi Nut- Thanks for the reply I'm sorry this one didn't work out for you. I have a long list in my med graveyard and I hate that feeling when your body just can not deal with something. That's the most frustrating part of the whole thing for me. Serotonin syndrome was the hardest for me to accept, becuase so many meds can cause this. I'm not borderline. My official dx is adult onset ADHD with moderate depression. My doc and and I have just started to discuss the possiblity of bipolar. I'm fairly well managed, but find that I have some really "down" days and a very snappy temper when I feel overwhelmed. All of this just came on about 3 years ago, so I'm sort of a newbie. I hope you found something that can be a good replacement for a stabilizer, I'd be curious to know what you settled on. Have a nice holiday weekend! And best of luck on your interviews birdie Link to comment Share on other sites More sharing options...
Silver Posted August 28, 2008 Share Posted August 28, 2008 Hi Silver, So what drug, if any are you able to take for a mood stabilizer? I seem to be "allergic" to every single one! ... Any thoughts on any other mood stabilizer? I took neurontin which helped but a doc told me that it is not used anymore for a mood stabilizer. I have tried Depakote and Lamictal. And Lithium..ha! All of those made me sick or had side effects. I am seeing the nurse about it this week. Lithium. But we are treating bipolar disorder, not borderline PD. I'm allergic, in the sense of an immune mediated / hypersensitivity reaction, to most of the aromatic anticonvulsants and to lamotrigine, which is a pity, because they work very well for me. I've had side effects from most drugs; in fact, all drugs. The question is whether or not I'm willing to tolerate the side effects for some symptom relief. Which is worse, the treatment or the disorder? Maybe it would be worth talking to your psychiatrist/psyNP about starting with a lower dose of Tegretol, or perhaps Trileptal. You can start as low as 50 mg of Tegretol, with some clever splitting of the chewables. Link to comment Share on other sites More sharing options...
Guest Guest_susanlynn_* Posted September 5, 2008 Share Posted September 5, 2008 Hi Silver, So what drug, if any are you able to take for a mood stabilizer? I seem to be "allergic" to every single one! ... Any thoughts on any other mood stabilizer? I took neurontin which helped but a doc told me that it is not used anymore for a mood stabilizer. I have tried Depakote and Lamictal. And Lithium..ha! All of those made me sick or had side effects. I am seeing the nurse about it this week. Lithium. But we are treating bipolar disorder, not borderline PD. I'm allergic, in the sense of an immune mediated / hypersensitivity reaction, to most of the aromatic anticonvulsants and to lamotrigine, which is a pity, because they work very well for me. I've had side effects from most drugs; in fact, all drugs. The question is whether or not I'm willing to tolerate the side effects for some symptom relief. Which is worse, the treatment or the disorder? Maybe it would be worth talking to your psychiatrist/psyNP about starting with a lower dose of Tegretol, or perhaps Trileptal. You can start as low as 50 mg of Tegretol, with some clever splitting of the chewables. Link to comment Share on other sites More sharing options...
susanlynn Posted September 5, 2008 Share Posted September 5, 2008 Oops, sorry, didn't know I had altered anything. Maybe it's Tegretol hyperreality. It's nice, to slink out of self-awareness, but it can be dangerous, and tough to explain. You mean, people are still being put on it? It seems so out of date. Link to comment Share on other sites More sharing options...
Silver Posted September 5, 2008 Share Posted September 5, 2008 You mean, people are still being put on it? It seems so out of date. What, like penicillin, aspirin, morphine, and acetaminophen? Newer and shinier isn't always better. Link to comment Share on other sites More sharing options...
fluffybirdie Posted September 8, 2008 Share Posted September 8, 2008 Well, after about 2 weeks this one goes to my graveyard. It didn't make me sick or anything, but the fatigue was unbearable. I know I can do smaller doses, but I've got stuff going on in my life right now that I need to be very alert for. And I was struggling with that. Since my issues are not terribly serious, I may try again at a better time like Christmas break or something. So I don't give it a bad review, but not a great one either. Link to comment Share on other sites More sharing options...
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