# Good old Lamotrigine again.



## liquidradio (Jan 27, 2011)

Hi all,

Just a quick note.

I've suffered with DR and a little DP for a decade. You can probably search for my old messages on here. Not that I've posted often.

As is usual for lots of us, I was terrified of medication. Starting it, coming off it, not giving it time to work, worrying about side effects.

Some weeks ago, acceptance seemed to wash over me. Acceptance that I have DP/DR and that it was progressively ruining my life. Up to a point where for about two years now I have essentially been a hermit.

Following this acceptance, I finally decided to sod the side effects and concerns, and take the 'London concoction' (something like that anyway) consisting of as most of you know an SSRI and Lamotrigine and in my case, some diazepam.

I am only on 10mg Prozac and up to 125mg Lamictal. In the several weeks I've taken these drugs, my condition has improved so dramatically that I can now function. This is beyond huge. There are times where I still become a little foggy, and I am not 100% recovered yet. However, I would say 70% improvement already. Miraculous.

70% is enough to get me back into society. Socialise. Stop obsessing. Think much more clearly. Work longer hours in an industry I love. Go to the gym and start to rebuild my shattered physical confidence. I can look at myself in the mirror again without disgust.

I will increase my dose to 150mg and see how I feel there. See if the little leftover foggy episodes completely disappear. Obviously the smaller dose the better as long as it works.

People doing well often don't post once they start recovering proper. So, because of how much suffering I know this condition causes, I thought I would post my story and support for the treatment best recognised to help this syndrome.

I would implore anyone suffering to make SURE you try this concoction. I have had no side effects from the Lamotrigine. Not even a superficial rash. Do not be scared, as I have been for so long. What a waste of two years. And in fact, it is probably more like five years of wasted life as I fell deeper into the throws of the syndrome. As a 36 year old male I feel it's still not too late now to life a full life again. Hopefully fall in love and enjoy the world.

Rush to your Doctor if you haven't tried this.

Best wishes to you all. You will get better.


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## Amina_x (Nov 22, 2014)

Liquidradio that is wonderful! Thank you so much for sharing.

I actually can attribute my recovery to Lamictal as well. My life before Lamictal was very rough as I was experiencing debilitating symptoms but after I started taking Lamictal the waves calmed and I was able to see myself and the world around me clearly. The biggest change I saw with Lamictal was that it eliminated that "empty" feeling where I felt like I was so empty and it was painful. Also, I was able to enjoy life a lot more like being able to walk outside and not have to evaluate reality doing it.

I think it's great you are sharing your story on Lamictal and thought I'd give my own experience. Everyone experiences DP/DR differently so maybe they will experience something different with Lamictal or maybe it is not what the particular person needs but I think it is worth talking to your doctor whether medication is a good idea and they can advise you on what medication might be best for you.

It is kind of a guessing game at first. You have to accept that you might have some hurdles to go over in finding the right one. Or maybe the first one you try will be worth it!

Be sure to keep track of your symptoms, when you're having them, how often, and any external factors that may be influencing.

Also you have to somewhat trust your intuition on this.


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## eddy1886 (Oct 11, 2012)

Whilst medication might not eliminate DP completely it can absolutely give you back your functionality and hence your life....

For some of us (myself included) it is actually necessary and a life saver...

NOW!!!!........ the fact you have found something that works stick with it...

Too many people all too often after a medicine helps them improve decide they dont need it anymore,,,,BIG MISTAKE...The medicine is doing more for you than you actually realise....

The saying "If its not broken dont fix it" comes to mind here.....

Delighted for you !


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## liquidradio (Jan 27, 2011)

eddy1886 said:


> Whilst medication might not eliminate DP completely it can absolutely give you back your functionality and hence your life....
> 
> For some of us (myself included) it is actually necessary and a life saver...
> 
> ...


Thank you to both of you.

There is no way in hell I will stop this treatment until it's been several years of normalcy and I have completely recovered and forgotten about it. If that never happens and I need the medication for life, then so be it. I was not living before.

People who scare others off from meds do *terrible, perhaps life threatening *damage. We all consult Dr Google, especially lots of us with DP because we tend to obsess, and find scare stories.

People advising never to go near the 'terrible pharmaceutical industry' and just meditate and exercise instead really should keep quiet. I tried that kind of stuff for years, and nothing would touch it, and yet I 'existed' on trying to forget about it in the hope of recovery.

I didn't have a great time with an SSRI alone. It in fact made the fogginess a little worse. That can also scare people off. First drug tried, doesn't feel good, and they run away from medication. It's totally understandable, but keep going and you will find the answer. When I added lamotrigine to the SSRI which I hated, suddenly my world entirely changed.

And Eddy, yes medication may not remove it completely (although it absolutely can with long enough treatment) the improvement is so amazing that it allows you to actually get to therapy, to the gym, to meditate, to socialise. All the things we know help this problem, but much more usually cannot overcome it on their own.

I just saw that my post count is 1. Haha! So, either my old posts are so old they're gone, or I had a different username and have totally forgotten what it was. I stopped coming on here so often quite a while ago. But I can promise you I've been around suffering along with you all. My DP/DR started when I was 24, although it only reached the stage where my life was being ruined about five or six years ago. I coped with a less severe form before that. Imagine if I had gone to the doctors then and fought it immediately? I wouldn't be 36 now and essentially beginning my life again.

Ok, that's probably enough from me. But it's always worth saying again and again. Do not think you can beat this alone. Do not suffer. Go and get treatment the moment you realise what you have, or think you may have. And don't stop until you find a Doctor who will prescribe the drugs I'm using, as they are definitely the first line approach (although obviously your doc will need to evaluate to be sure.) Of course other treatments work for different people so even if an SSRI and Lam doesn't do the trick, something else will.

Good luck to everyone.


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## Jackk11 (May 9, 2018)

Another reason to try lamotrigine


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## tikobird (Feb 26, 2008)

Maybe I've had depersonalization too long and medication doesn't help me anymore. I'm working with some newer types of therapy which are trauma based. They work on the way you perceive the world and also acceptance of things you can't change at the moment. I'm not saying I like DP at all. It scares me, I have strong anxiety attacks but am learning how to make them less strong and ultimately hope to not think about DP symptoms. I've had DP since 14 and it came on suddenly while I was feeling very bad about myself and ruminating about why friends stopped liking me. The self esteem issues and anxiety came from growing up in an alcoholic home. Is anyone working on their thought processes and trying to change them? I was curious. I've been on Benzodiazepines, antidepressants, and mood stabilizers for anxiety and depression but they haven't done a thing for DP. I've had DP from age 14 and I'm now 64. Even depression can be helped with biofeedback, EMDR therapy, or using mindfulness. As far as I know, chemicals are not the answer. Benzodiazepines (Xanax, Klonopin, etc.) are not advised anymore. Doctors want patients to stop prescribing due to changes they make to the brain such as cognitive impairment.


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## tikobird (Feb 26, 2008)

I had very wrong ways of perceiving the world due to growing up in an alcoholic home and parents being emotionally unavailable. Unless it's from drugs anxiety comes from thinking and worrying which leads to depersonalization. This is mostly caused by a specific or ongoing traumatic situation.


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## Pondererer (May 18, 2016)

I actually just got prescribed Lamictal, but i haven't tried it yet. I expect nothing from drugs and yet i'm usually dissapointed.

How quickly did you notice a difference? I'm considering trying it after reading your post.


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## PeaceSeeker (May 31, 2018)

You guys are making want to consider trying my prescription now. I haven't yet because of the fear of side effects, worsening of my symptoms, and the fact that it takes a month to start working.


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## liquidradio (Jan 27, 2011)

If your Doctor has deemed it right for you, then *GO FOR IT*.

Most important things to note:

At first, you may feel worse. I felt deeply depressed for a little while on the 25mg dose. This made me stop taking it for a while.

When I restarted I just road the wave of a little depression, although it was much easier because I'm on a low dose of Prozac this time. Although I'm actually changing this to 25mg Sertraline.

I find Sertraline easier on the libido than Prozac. In fact it seems to improve mine, while Prozac was not good, but that is always a very individual thing. Sertraline seems harder to get used to though, so if you take it don't be surprised if you feel more derealised for a while before it goes away, but it seems worth it in my case.

Be sure to take an antidepressant along with your Lamotrigine. No, I'm not a doctor and you must speak with them about which is right for you, but studies show it is much more effective in combination. If you take it alone you may be disappointed.

If you do try it alone and it doesn't seem to work, or you feel worse, don't lose faith and ask your doctor for the antidepressant. This is the advice of the Maudsley Hospital in London, which I believe is the only research unit for the condition in the world (perhaps one in NYC too if I'm not mistaken.)

Try and get your doc to give you benzos for a month to get you over the initial Lam and or SSRI side effects. Despite the scaremongering, you won't be addicted to these after 28 days. My doctor told me it takes a couple of months of regular ingestion of diazepam to become dependant.

Sadly I am dependant, because I have used them for about three years now for the condition. I needed them however, so it was for medical reasons, and my dose is not too bad (about 15 - 20mg, equal to about 1mg Klonopin.) I'll be weening off shortly thankfully, seeing as Lamotrigine and the SSRI are working so well.

Also, you may notice a flatness of your mood at the start, and as you raise the dose. This scared me too, because I was already flat. Turns out this was also a short term side effect, and I'm more alive now than I have been for years.

The rash: my skin is certainly more sensitive now, and I get little hives, rashes and bumps every now and then. Nothing serious or ugly. Obviously if you get a rash and it gets worse daily, especially with fever symptoms, then of course call your Doctor or go to E.R. (A&E in the UK) but this side effect is incredibly rare when you follow the titration pattern, it's almost not worth thinking about. You're more likely to be in a car accident than get 'the rash', but just be very slightly aware just in case.

You won't miss symptoms of that kind of rash, and once you're off the drug it stops. Progression to full Stevens-Johnson syndrome is incredibly rare.

Use gentle cleaning products, and moisturise with a nice gentle, thick cream (avene riche is nice.) I'm a guy and couldn't give a stuff about using this kind of stuff. I always have and it's made my skin remain pretty young looking. It's important to have moisture on your face.

Most importantly, despite all the above, try not to worry or ruminate about the medication. Just pop your pills whenever you're told to take them and get on with your life. Monitoring for every little possible side effect will make you less likely to continue treatment, which you need, and you'll probably placebo something into existence. If you do feel down or flat for a while, just recognise it's the medication building up and live with it, knowing it'll improve.

I noticed significant relief at 100mg.


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## Aridity (Jun 12, 2011)

liquidradio said:


> If your Doctor has deemed it right for you, then *GO FOR IT*.
> 
> Most important things to note:
> 
> ...


Hello,I am very happy for you that uou are doing better! What exactly what were your symptoms for the last decade and out of a scale from 1/10 how bad were they. And how are they now? I myself am on 10mg citalopram for 17 days and things are getting worse. I have been on lamictal 25mg for a month in the past but only lamictal. I will add lamictal once again,when I have my next appointment with my psych in 2 months.


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## liquidradio (Jan 27, 2011)

Aridity said:


> Hello,I am very happy for you that uou are doing better! What exactly what were your symptoms for the last decade and out of a scale from 1/10 how bad were they. And how are they now? I myself am on 10mg citalopram for 17 days and things are getting worse. I have been on lamictal 25mg for a month in the past but only lamictal. I will add lamictal once again,when I have my next appointment with my psych in 2 months.


At times, easily 10. It wavered from a 10 to about a 2 everyday. Hardly ever 0. I'd say at the moment they get up to about a 7 at the very worst, with 0 being quite regular now. I still have a way to increase the Lamictal should I need to, if my current dose doesn't bring me down to 0 all the time, along with therapy.

Citalopram and Lexapro, when I used them alone, made me feel worse too. Too flat and dead. I never tried them in combination with Lamictal though, and I've seen reports that they go well with it. SSRIs alone seem not to be very useful on their own, anecdotal cases excepted.

I would have a low dose SSRI going, as you already have, and then ask your doctor to start titrating your Lamictal up. It could be a tough little ride, so don't let that scare you. Just go with the flow. No guilt. Once you get to a efficacious dose you'll know it and be so grateful you did it.

You're more likely to respond well to this treatment than not by quite some way. So you owe it to yourself to try it, ride the ups and downs, and free yourself from depersonalisation.


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## Vexet (May 12, 2018)

liquidradio said:


> At times, easily 10. It wavered from a 10 to about a 2 everyday. Hardly ever 0. I'd say at the moment they get up to about a 7 at the very worst, with 0 being quite regular now. I still have a way to increase the Lamictal should I need to, if my current dose doesn't bring me down to 0 all the time, along with therapy.
> 
> Citalopram and Lexapro, when I used them alone, made me feel worse too. Too flat and dead. I never tried them in combination with Lamictal though, and I've seen reports that they go well with it. SSRIs alone seem not to be very useful on their own, anecdotal cases excepted.
> 
> ...


Did you experience the blank mind?


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## liquidradio (Jan 27, 2011)

Vexet said:


> Did you experience the blank mind?


Absolutely, which lead to isolation, depression, worsening of the DP/DR and a vicious cycle it feels impossible to escape. Believe me, I had as overwhelming a case of derealisation with depersonalisation episodes as anyone could experience.

I'm not entirely out of the woods. I've increased my dose of Lam and the fog has reappeared. But I imagine, as before, it's simply my brain getting used to the new dose. I can always go back down if required. Everyone seems to have a different effective dosage of it. But I remain better off than I was by a long way, and I know that with some experimentation I will find the right ratios of medication that suits me best. Whether that's very high dose Lamictal, or going right back down to 100mg.


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## Jackk11 (May 9, 2018)

Congrats on your improvement! Im looking into starting medication in the near future. My main symptoms are the world s looking unreal, my senses are dulled, and I’m pretty emotional flat. I do not suffer from anxiety but I do get small spells of depression due to my emotions being dull. Did lamotrogine help with any of these and how long did it take to work


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## Aridity (Jun 12, 2011)

I just wanted to give an update on this thread,I have been on citalopram 10mg for 2
Months or so,and a week ago I started to add lamictal 25mg to it. From the first day my dr spiked
Immensely,and I got sever hppd like symptoms photophobia light sensitivity,and visual snow,glares,starbursts etc. I thought it was a one time thing so I continued for 3 more days,but it got even worse and it didn't pass. So I quit it and now it's 2 days after and this shit is still here,I am very sad because I couldn't give lamictal a good try. And has anyone ever got hppd from lamictal? I find it so weird.


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## PeaceSeeker (May 31, 2018)

Aridity said:


> I just wanted to give an update on this thread,I have been on citalopram 10mg for 2
> Months or so,and a week ago I started to add lamictal 25mg to it. From the first day my dr spiked
> Immensely,and I got sever hppd like symptoms photophobia light sensitivity,and visual snow,glares,starbursts etc. I thought it was a one time thing so I continued for 3 more days,but it got even worse and it didn't pass. So I quit it and now it's 2 days after and this shit is still here,I am very sad because I couldn't give lamictal a good try. And has anyone ever got hppd from lamictal? I find it so weird.


Weird, I got all of those symptoms before even being on meds. Now I kind of don't want to try lamictal at all.


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## Aridity (Jun 12, 2011)

Anyone


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## Slow Al (Sep 15, 2018)

Hi there, very interesting post, I have just been referred and am waiting to go on the waiting list for treatment at the DP/DR Maudsley Clinic and know they are keen to start me on the SSRI + Lamotrigine combination which, as someone who hates taking any sort of medication, even for a headache, terrifies me!

So, my question is, if they can have such a dramatic effect, can become addictive?

Thanks


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## liquidradio (Jan 27, 2011)

I thought I should come back, rather than disappear as quite a few do, to update on this.

Lamictal is still a wonder. It has been a bit of a battle though. The drug would work very well for me for a little while and give me hope I was cured, but then the dreaded fog would appear again and I'd become down hearted. I started to struggle with memory loss and concentration too, which I know is a side effect.

*However*, since I've moved up to 300mg I've become very pleasantly stable, and for a good long while. Side effects have gone. I can think more clearly now than I could before the drug.

My derealisation was very intense indeed. It's not a surprise I've required a high dose, although I know the London clinic suggests 400mg so I'm not even at maximum yet.

Lamictal gets so much nicer and much more effective at higher doses. It really messed up my concentration and increased my derealisation at around 150mg - 200mg. I went back to 100mg and that just made things worse, so I started climbing up again. It's been quite rough, but absolutely worth it. I have real peace in my life now. I never thought I would experience that again.

I'm still taking a very low dose of Prozac. Even at a tiny dose I think it's ruining my 'personal life'. I'm sure we all know what that means, just no desire whatsoever. Horrible for a 37 year old man and very unusual for me, so I'm going to see if I can come off that and use high dose Lamictal as monotherapy.

I wouldn't recommend others do the same unless you've really thought about it and spoken with your doctor. My doc understands and is willing to try. I'm going to give that a go and if it doesn't go well I'll try another antidepressant. Being free of derealisation is amazing, but I would like now to be able to get back to being able to have a relationship and some proper human contact. It's not healthy to live without someone to care about for too long.

Before that though, I need to ween off daily diazepam. Lamictal mostly takes away the need for benzos, for me anyway. I don't need them to function, although after 3-4 years taking it, albeit a low dose, I have to ween off. It could be diazepam causing the 'personal' stuff, people forget it can do that. So it might be that just dropping that will be enough to bring back a normal man's emotions.

That was longer than I expected it to be, as usual. But I hope it's of help to at least someone who might be struggling. Lamictal is a real gift, but you have to work hard sometimes to earn what it has to offer.

Good luck all. Anyone deeply stuck in this condition, I know exactly how appalling it is, but do keep going and do try the high dose Lamictal + antidepressant treatment. I had horrendous DR for 13 years. I am recovering. It's a cliche, but if I can get better then anyone can.

P.S Oh, and I started supplementing with Methylfolate, which I got from Amazon (you can't get Deplin in the UK) because Lam. lowers folic acid levels. Folic acid is very important for cognition, so that could be really helping with the memory side effects. Something to consider if you experience the same.


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## liquidradio (Jan 27, 2011)

Aridity said:


> I just wanted to give an update on this thread,I have been on citalopram 10mg for 2
> Months or so,and a week ago I started to add lamictal 25mg to it. From the first day my dr spiked
> Immensely,and I got sever hppd like symptoms photophobia light sensitivity,and visual snow,glares,starbursts etc. I thought it was a one time thing so I continued for 3 more days,but it got even worse and it didn't pass. So I quit it and now it's 2 days after and this shit is still here,I am very sad because I couldn't give lamictal a good try. And has anyone ever got hppd from lamictal? I find it so weird.


I wish I'd seen this before today. Sorry about that.

Yes, it's very normal to struggle, especially at the beginning. 25mg, and indeed 50mg made me much more depressed. It doesn't surprise me at all that you've had nasty side effects too.

If your doctor is happy (and you're sure he or she is competent...see someone else if not) try Lamictal again. Keep increasing your dose until you feel relief. Then increase again if it returns or side effects get worse, until you feel lasting relief.

Have your doctor give you decent doses of clonazepam or diazepam (I chose the latter because clonazepam makes me more depressed too) for you to take while you titrate Lamictal. That will really help, and you can take them for up to four weeks without becoming addicted. I wish I had known and done that, rather than take diazepam for several years. But hopefully my taper off will be smooth.

Try not to be scared and know your side effects are absolutely normal. It's only 'the rash' we need to be aware of, and even then some people are irrationally worried about it. It's so rare.

I digress, but I got superficial rashes on my hands. About 10% of people have some kind of skin issue, but it passes for the vast majority. The risk of serious rash is so low it's almost zero. I feel sorry for some people here who've been taken off Lamictal because of little breakouts or rashes. An experienced doctor will know the difference and keep you on treatment in 99% of cases.

Go for it!


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## liquidradio (Jan 27, 2011)

Slow Al said:


> Hi there, very interesting post, I have just been referred and am waiting to go on the waiting list for treatment at the DP/DR Maudsley Clinic and know they are keen to start me on the SSRI + Lamotrigine combination which, as someone who hates taking any sort of medication, even for a headache, terrifies me!
> 
> So, my question is, if they can have such a dramatic effect, can become addictive?
> 
> Thanks


SSRIs and Lamotrigine are not addictive. You won't be popping them like benzos. They can have withdrawal symptoms if not weened off properly, but that's very manageable when done properly.

If the treatment works though, you won't need to come off it for a long time. People need years of medication for this to heal. But that's nothing to be afraid of whatsoever. Once you're settled on Lamictal and an antidepressant which suits you, you'll barely notice you're on anything.

Your life may well improve profoundly, which is worth taking a couple of tablets everyday for.


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## eddy1886 (Oct 11, 2012)

liquidradio said:


> SSRIs and Lamotrigine are not addictive. You won't be popping them like benzos. They can have withdrawal symptoms if not weened off properly, but that's very manageable when done properly.
> 
> If the treatment works though, you won't need to come off it for a long time. People need years of medication for this to heal. But that's nothing to be afraid of whatsoever. Once you're settled on Lamictal and an antidepressant which suits you, you'll barely notice you're on anything.
> 
> Your life may well improve profoundly, which is worth taking a couple of tablets everyday for.


This has been my experience over the years too...And ive been taking meds for many many years now...


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## kevin1983 (Jul 7, 2016)

I'm about to start lamictial the name brand after having no luck with the generic version due to increased depression, Does it make a difference into alleviating the dp/Dr namebrand versus generic and how much were you on until it began working?

Also I'm wondering if you guys noticed any sexual dysfunction (loss of erections) using the namebrand?

I had trouble with the generic because of numbness in genitals and nothing helped with my crippling depression with the derealization

thanks


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## liquidradio (Jan 27, 2011)

kevin1983 said:


> I'm about to start lamictial the name brand after having no luck with the generic version due to increased depression, Does it make a difference into alleviating the dp/Dr namebrand versus generic and how much were you on until it began working?
> 
> Also I'm wondering if you guys noticed any sexual dysfunction (loss of erections) using the namebrand?
> 
> ...


This is a VERY late reply. Sorry. I've not been here much.

Name brand is best for me. Generic, at least in Europe, only has to be 70% similar to the original drug.

No sexual problems with Lamictal for me. Only the SSRIs, although annoyingly Zoloft didn't change my libido but it increased my DR. Lexapro wipes it out, but works for DR (with high dose Lamictal). That's life.


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## sit (Oct 4, 2019)

liquidradio said:


> If your Doctor has deemed it right for you, then *GO FOR IT*.
> 
> Most important things to note:
> 
> ...


I wonder how soon it began to take effect


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## sit (Oct 4, 2019)

liquidradio said:


> I thought I should come back, rather than disappear as quite a few do, to update on this.
> 
> Lamictal is still a wonder. It has been a bit of a battle though. The drug would work very well for me for a little while and give me hope I was cured, but then the dreaded fog would appear again and I'd become down hearted. I started to struggle with memory loss and concentration too, which I know is a side effect.
> 
> ...


. Hello, I started Lamotrigine 25 mg and I'm feeling nothing, It's normal?


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## Chen (Jan 2, 2020)

In how long you get from 25 mg to 100 mg? I suffer 12 years of DR... with Lamotrigine in my kitchen draw because I am zo scared of the storys... dont know what to do...


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## Trith (Dec 31, 2019)

liquidradio said:


> ...
> 
> You won't miss symptoms of that kind of rash, and once you're off the drug it stops. Progression to full Stevens-Johnson syndrome is incredibly rare.
> 
> ...


Incidence of Stevens Johnson syndrome or toxic epidermal necrolysis on Lamotrigine is 0.04%, so one patient over 2,500, according to this study. I find this incredibly high given that the mortality rate is in the range of 20% and that 50% who survive have serious permanent physical damages like blindness in addition to psychological trauma. This is the highest probability among the most SJS risky medicines (according to the same study). I don't say that people should not take this, but it is important to have quantitative information to make a decision. I just want to give the actual numbers.


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