Effects Of Lamotrigene (Page 2)

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Last June I started coming off Lamotrigine. I was on 125mg per day to stabilize my moods. I suffer from anxiety, depression, ocd, bpd, It did help at the start and pushed me to do things, but then it would wear off and I was told to keep increasing, but it started to affect my liver, my depression got worse, sweating, jewelry going black, and a few other things and I wanted to come off it. I slowly decreased it but as I was I started to get the shakes, upper torso and hands. The psychiatrist put me on Zyprexa to help with the withdrawals and also Benztropine for the shaking/tremours. I was having too many suicidal thoughts so I came off Zyprexa, but I still had the shakes. The doctor then put me on Valdoxan (Antidepressant) but that ended up putting me on the couch and I couldn't do anything and I still had the shakes. Then he put me on Deralin 40 (Propranolol) spelt that wrong, 2 x 40mg tablets per day. That took the shaking away but I slept all day. Then he told me to take it to 20mg, I still slept and I found my hair was falling out so he told me to stop and start back on the Valium 2 x 5mg per day. As I'm very sensitive to meds but they would stop the shaking but not for long. I ended up in December putting myself back on Lamotrigine after coming off them in Aug but I'm still shaking even after trying all the medication. Now the Psychiatrist has told me to go back on the Prop (Deralin) 20mg per day but it makes me tired, then I was told 10mg in the morning and 10mg at night but 10mg in the morning doesn't stop the shaking, then if I take another 10mg I'm tired, so I'm at a loss as to what to do and my hair keeps falling out and comes out in small chunks when I wash it and it scares me.

I've had an MRI and it's all good. Is my brain craving more of the Lamotrigine now? I'm handling things ok on 50mg per day so I really didn't want to increase it but if I do will it stop the shaking? I just can't function and dread getting up as I know as soon as I do the shaking starts all over again. I can't drive, write or do anything whilst I'm shaking. Even the 2mg of Benztropine makes me drowsy. It stops the inside tremors but not the outside shaking. I have to just lye down and try to sleep until it passes. I can't keep doing that every day. I was also told to take 10mg Deralin in the am and 10mg pm but as I mentioned 10mg doesn't stop the shaking. I honestly don't know what to do anymore and my doctor doesn't like giving me valium all the time. I did feel better taking that but again the valium didn't hold the shaking off for long. Now the Psychiatrist says it's not the Lamotrigine that caused the shaking and I need to see a Neurologist, but the MRI came up ok, or I've been told that now my anxiety isn't suppressed it's coming out full blown and I need a psychologist again, but I've been there and done that. I'm at a loss and this is making my depression even worse. Hope you have some advise as I'm over 3 Psychiatrist, 3 different opinions, docs etc and I don't know what to do. An I don't want to lose anymore hair. I've researched that there are alternatives to Deralin 40 (Prop) or Clobazam (not sure if my doc will prescribe it) or calcium blockers or if I should just go back to the valium but again my doctor doesn't like prescribing it but I also want to know how long the shaking will go on for or whether my brain will get used to the 50mg Lamotrigine and stop, but at this point it's been 9 months and still shaking. From June 2016 - August 2016 shaking and stopped Lamotrigine. Dec 2016 started Lamotrigine again and still shaking. Thanks.

Follow up: After coming off Lamotrigene in August 2016, I'd been shaking since May as I slowly had to decrease, but then after a couple of other meds to try and help me come off Lamotrigene. I felt suicidal, then went on anti depressant which made me worse. I couldn't handle life well at all after stopping Lamotrigene in Aug so by December 2016 I had to go back on it but the shaking still hasn't stopped.

3 Psychiatrists have all given me 3 different opinions and they keep telling me it's not the Lamotrigene that's making me shake, but the shaking only started when I was coming off it.

Had MRI and that's ok. I was taking 25mg Lamotrigine to start, then 50mg, now started 75mg a week or so ago and I'm still shaking. It's my upper torso and hands. Sometimes my left side is worse than my right and my left hand sometimes has jerking movements by itself.

I was put on a beta blocker and that stopped the shaking but my hair began falling out and still is and I was only on 10mg or 20mg of Propolol (sorry spelt that wrong) so I had to stop. Now I'm trying to manage the shaking just with Valium but the Valium doesn't work for long. The doctor said 2 x 5mg twice a day but I don't get relief for long and sometimes the shaking gets painful. Or the valium makes me tired. Hard to write, which also gets painful, drive or do anything. I just have to sit and wait it out. I find if I go back to bed I still tremble inside but then I fall asleep, or if i don't sleep I read but again the shaking and trembling seem to ease, but as soon as I get back up again the shaking comes back.

Try putting eyeliner or mascara on with the shaking!!! So I stopped putting make up on as well.

I'm waiting on an EEG now to check the brain waves. It's all so draining but I need to find out what's causing this. I still think it's my brain craving more Lamotrigene really as that seems to have been the trigger. I was on on it for 3 years 125mg per day which is probably a low dose compared to others but I couldn't tolerate any higher and ended up in hospital with severe pain in my right side lower back and I could hardly walk and I was vomiting. So, my body was telling me it was too much.

I just don't know what to do and the Psychiatrist thinks it's Neurological, but I don't think it is. I do suffer from extreme anxiety and depression and some have said that now that I wasn't on Lamotrigene it's my body letting it all out, hence the shaking. But I can't live with the shaking every day and don't know what to do. It's messing up my life as I can't even drive until the shaking slows down. Even my head feels like it's going to fall off as it wobbles so much as well.

I was so hoping that once I went back on Lamotrigene the shaking would stop but it hasn't and I'm so frustrated as I'm not getting an resolution.

I'm also on 40mg Nexium, HRT 2mg, Zolpidem 5mg at night and now Biotin as although the beta blocker stopped the shaking it made my hair fall out, so I had to stop taking that.

I may also have Chronic Pancreatitis, small intestine problem which I'll find out when I have the Gastriscopy this month as I did have acute pancreatitis, then major surgery but the pain over the years has just got worse and I just found out I have 4 large Gall stones, so I'm on a waiting list to get the gall bladder removed. Which I wish would hurry up. I have no or very little appetite, bloating, abdomen pain, fatigue, nausea, vomiting, abdomen pain lower right goes through to back sometimes, upper back pain in between shoulder blades and I'm losing probably a kilo a month so my weight is down to 45 kilo now, from 50 kilo since Dec. I only got back up to 50 kilo due to meds which I had to stop taking. I can't eat properly and manage on protein powder, banana & yoghurt most days or I forget to eat as I don't feel hungry.

I'm in desperate need of advice as I can't handle all the illness every day and I don't know what to do or maybe one of the other illnesses are causing the shaking or whether it is neurological. I'm just over the illness every day. I have no quality to life, have shut myself off from the world and don't leave the house unless I really have to. Don't talk to anyone, no motivation, no interest in doing anything. I need help please.

Have you got any suggestions please?

24 Replies (2 Pages)

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21

Thanks for the advice Lee. Can you please tell me where I can get all the products you mentioned. I haven't even heard of Holy Basil, Burdock Root, Dandelion Root or Sodzyme. That would be terrific for me if it boosts immune system. As you can imagine mine is very low.
Do I just mix all the ingredients together? Not sure how to use those things.
I can't eat properly so I don't really eat solid foods. I have a banana, yoghurt and my protein powder most days. I feel full even after drinking some water, it's ridiculous or I don't even think about food. I don't know where it all went horribly wrong. Now I look like a skeleton, it's horrible when I see myself in the mirror. I can see all my ribs coming around from my back. I just want to get my insides sorted and hopefully get back up to the 50 kilo I've always been.
Thank you for the link to the site about helping my pancreas I'll definately have a look.

Thank you

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22

The Lamotrigene did push me to do things at the start but then it would wear off and I had to increase it all the time to make me feel a bit better, but after 3 years or during those 3 years I felt like my depression was getting worse. It was an effort to do anything, even showering was overwhelming, so I'd just wash myself out of the shower and stick my head under the bath tap to wash my hair, which probably took longer but I just couldn't get myself to get in the shower, it was all too much. I still have problems doing it and I still have problems trying to get motivated, and I shut myself off from everyone during those 3 years on it and lost interest in everything and still have. So, yep, I think it didn't help with my depression either, just made it worse, if that's possible. It did calm my anxiety a bit but I still shook during stressful situations but it calmed down. I had a lot of inside health issues which it caused as well, which is why I wanted to come off it. My liver was up and down all the time. Then when I stopped taking it my liver was back to 100% and now I'm back on it my liver isn't anymore. I get a fever as well, nausea, vomiting, insomnia, abdominal pain, and the headaches are terrible sometimes.
Not sure what to do about and after reading people's advice I've asked another Psychiatrist about the different medications, so I'm waiting to hear back.
I just don't understand why I've started shaking coming off it and still shaking on it, The shaking gets so extreme it gets painful and my head feels like it's going to fall off sometimes from the wobbling. It's embarrassing and I can't function daily. So the Valium calms it down but not for long, but I get a bit of relief or if I lye down I tremble but then that slows and it stops when I sleep. It's getting quite annoying. I didn't get the shakes when I first went on it 3 years ago, but it does say that tremors are a side effect but my doc and psychs say it's not.
Withdrawal from the Lamotrigene was terrible and scary to say the least. I just couldn't handle, hence I went back on.
Has it levelled out your mood? Do you feel calmer? Is your anxiety the same as before you went on it?

Thank you

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23

If you take my advice please dont take any medicine. Whatever your position is, get up in the morning take a glass full of warm water and some Lemon + salt + add some honey to it and drink it slowly at first and after half is gone drink all at one time. In case you feel any difficulty to drink, try later. Now finish your daily doing. Please do not keep your mobile phone or any gadget with you and sit calmly on the floor, close your eyes, straight body no bending, put your both hands on your legs, breathe slowly from both nostrils and after fifteen minutes relieve your one hand and close your left nostril, take a breathe from one side for 5 minutes and then repeat it from other side. Sit calmly, no hurry. I am sure you will benefit from this. I don't know much english. You can join Yoga classes if you have them in your area. I am sure within one month you feel changes in your life.

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24

I’ve been on lamictial for 16 years which I believe it’s the name brand name For this medication. I’m bipolar and my psychiatrist put me on it and my mind stopped racing completely it was a true miracle! Great mood stabilizer. I hope your not just stopping these meds u have to slowly come off of them.. good luck!!

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