New - reducing Lamictal

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Hi everyone,

This is my first time ever joining a forum, but you have shared so much of your experiences :clap:, I felt compelled to respond to a post of someone increasing lamictal.

I'm currently (well, v slowly over the past 3 years!) reducing Lamictal and I feel the withdrawal symptoms are not well documented at all. I am teaching so I can only reduce during the summer months as otherwise I would not be able to do my job properly.

I've reduced alot slower than the doctor recommended, but it has still been rough at times. I was on a very low dose 3 years ago compared to alot of you (100mg twice a day), decreased to 50mg twice a day the first summer, 25mg twice a day the second summer, and in the past few weeks I've reduced to 25mg in the morning only. It's so tiny, but this last withdrawal has been the roughest, but I think I was just exhausted to begin with.

Symptoms include light-headedness, confusion, dizziness, difficulty with alot of noise, problems concentrating and verbalising (sounds perfectly fine in my head, but it's just not getting out!), slurred speech, stammering, and the sheer exhaustion!! It's difficult each time, but it improves slowly and then I'm great - the fog clears and I'm more efficient with work. I'm reducing at the moment, so my grammar isn't great so please forgive me, I just can't find words. With lifestyle, I have remained seizure-free, although there are times where I just need sleep. I eat regularly, avoid stress if at all possible (especially people who just drain me .. and if its not possible, I take deep breaths, tune out or walk away), I nearly always leave a party first (and always before midnight!), and mind myself. I gradully (over months) changed to the blood-type diet (mentioned in other threads) in January, and also found cranio-sacral therapy excellent.

As with alot of you with photo-sensitive epilepsy, I can't go to the cinema now for past 3 years or watch TV in the dark or party into the wee hours of the morning, and although it sounds dull I feel so much better (apart from when reducing) ... most of the time.

Thanks so much for sharing your experiences and I would love to hear more about Lamical withdrawal symptoms.
 

Loopy Lou

Veteran
Messages
2,238
Reaction score
3
Points
163
Hi there and welcome to the site! Love your name by the way.

3 years seems like an extraordinarily long time to come off lamictal. I was on 400mg and was off it within about 6 weeks. I didn't really get any withdrawal, but then I could have just been lucky or missed them because I was starting on Keppra.

What was your docs advice on it?
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
Hi Eiblin, welcome to CWE!

I'm interested in your withdrawal story, since I'm on Lamictal too, and I've sort of been doing a slow withdrawal too in a way. (I started at 250mg per day, and tapered down to 175m per day over the course of 8 months). It's interesting (if unpleasant) that the withdrawal side effects have become more intense the closer you get to being med-free altogether. The only withdrawal side effects that I've noticed are the dizziness -- sort of like the spins rather than the passing out variety.

How long were you on the full dose of Lamictal? Was it the first and only med you were prescribed for your seizures? What kind of seizures did you have? Did you have other side effects while on the Lamictal that have gone away since you've reduced the dose?

Best,
Nakamova
 

Endless

Even Keel
Messages
4,466
Reaction score
1
Points
0
Eibhlin,

Welcome to the forum!

Going off Lamictal is one of the hardest things. It really messes with the body and mind - big time. I am so glad you are going slowly. That helps. I also find your story interesting. Thank you for sharing it. I'm on lamictal now (300mg), and the thought of going off of it someday scares me silly.

I've been on Lamictal twice. The first time they took me off a low dose (50mg) cold turkey because of a rash.

When I went off the low dose I felt like my whole body was vibrating. It felt really strange. I had hallucinations. I saw a 3D ghost face pop out of the TV. I slept all the time. I became paranoid and extremely emotional - very high highs and very low lows. I felt "seizury" all the time, and my seizure frequency and intensity increased greatly. All of this lasted a few weeks, gradually getting better every day. That's all I can remember, but I know there's more.

I've read that last step down can be the hardest. Please hang in there. Is there a chance that your doc may have another med that could help with some of the side effects?

Q: Did I read correctly that you are working towards being free of seizure drugs? How long has it been since you've had a seizure?
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Hi Loopy Lou and Nakamova,

Thanks so much for your responses.

I love the Irish Loopy Lou :)

Yes, it's very long, feels like it's going on forever!!

I'm glad you didn't get any withdrawal symptoms Loopy Lou and that you experienced very little withdrawal symptoms Nakamova.

I think the dizziness you've had is the same as mine - I never feel like passing out - it's more like my body just wants to lie down, and doesn't take no for an answer!

I also feel like I tune out more when reducing, e.g. someone is telling a story, and next thing it's the punch line and i've no idea what happened in the middle. But it's better as time goes on. But it takes a long time, so by the time each summer comes around I'm feeling 'perfect' again.

Reductions:
My doctor advised that I take it slowly,and agreed with reducing over years ... basically to let my body get used to the dose, and see if everything is ok (as in ensuring I don't get seizures) before going down again.

For the first reduction, he suggested reducing e.g. 25 mg every 2 weeks, but I went more slowly as I was feeling so odd, and reduced over 3 months instead of 2. Symptoms: I was exhausted and dizzy.

For the second reduction, neurologist and I agreed on reducing 25mg per month. I was exhausted, dizzy, and speech was odd for months (I kept joining words!). But I went for cranio-sacral therapy and that did the trick.

For this last reduction, he suggested to reduce 25mg and wait 6 mts and then remove the last 25mg. However, work was v busy so I wasn't able to start the reduction earlier, so I only started a few weeks ago. I halved the 25mg tablet for 2 weeks (at night) and it was fine - no major problems, but I cut out the night dose completely a week ago and it was v tough! So now, I'm just on 25mg in the morning.

With the other reductions, the effects didn't happen until the 3rd day, but this time it was straight away. But I think my timing was off, I was
exhausted to begin with, so everything has been magnified.

All going well, I will begin cutting the last 25mg mid July, and we agreed on reducing in 5mg over 16 weeks.


History/other medication:
I was on Epilim for 6 years, and I was still having auras while on that, and I changed to Lamictal 10 years ago (so I was on 100mg for 7 years). I didn't feel any withdrawal symptoms coming off Epilim/going on Lamictal, and I felt so much better on Lamictal.

I didn't notice any major side effects while on Lamictal, but now that I've reduced, I honestly don't know how I managed to get through university, as it's like a fog has lifted and I'm noticing more around me.

Nakamova, do you feel better since you've reduced Lamictal?

I haven't had a seizure in 6 years and my husband and I wanted to have children, and I was concerned about cleft palate (even though I've been on 5mg folic acid) so my doctor suggested reducing as there may be less risk with lower doses.

Before the Epilim, I used to have tonic seizures (I only realised because I used to wake up on the floor beside my bed having bitten my tongue) and tonic-clonic seizures, but thankfully I haven't had any of those in
16 years.

I also used to have Myoclonic seizures (that's the last one I had 6 years ago).

That's as much detail as I can think of!
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
Reducing the Lamictal dosage seemed to help with some of the side effects -- hair loss, headaches, sleep issues, weight gain -- though it's hard to know for sure if some of those would have gone away over time on their own. Other side effects persist: blurry vision, dry eyes and mouth, chin acne... At the moment I'm staying put at my current dose, though I'm planning on trying neurofeedback in the fall with the hopes of reducing my dosage after that.

How many sessions of cranio-sacral therapy did you do? Did you feel the benefits right away?
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Sorry, meant to add that I was on 100mg "twice a day" under history/other medication

Thanks Endless for your kind words. That must have been so scary to have the hallucinations, I really feel for you.

I have read about that rash. My neorologist had been talking to me about reducing for 2 yrs before I finally started. You might be able to try v slowly when the time is right.

I'm lucky, it hasn't affected my mood (apart from feeling frustrated, but that will pass), but my doc and pharmacist advised me Day 1 to take it easy
and take time off when reducing and I definitely think that helped. I think my mood may have been alot different had I been trying to juggle work demands and the reductions. I really try to keep a low profile every time I reduce.

Yes, I'm hoping to be free of drugs. That's the plan anyway - oh course my brain might have other plans!
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Do you have problems sleeping? I just realised when reading your post Nakamova that I used to be able to fall asleep anywhere while on Epilim and it's only since I changed to Lamictal that it takes ages!

I was exhausted and had an awful headache after my first cranio-sacral therapy session, but I had the best sleep ever that night. It made an
enormous difference straight away in terms of sense of well-being, energy and speech. I've only had around 6 sessions in total but I might go again soon. Best money I ever spent. I went once a week for a few weeks, then once a month and then she said to come back when I felt I needed it.

Those side effects are awful. I have acne as well, but that's due to low progesterone ... but there's surely a link between the medicine and hormone imbalance.

I haven't heard of neurofeedback. Best of luck with it. I think you really have to be in a right frame of mind to reduce, and you sound like you will be - mind yourself!
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
I don't have problems sleeping now -- reducing the Lamictal dose seemed to take care of that. I hope your sleep improves once you're off the Lamictal for good (if not sooner!).

Lamictal does mess with hormones, so I expect it is the cause of the acne. Of course low progesterone and/or high estrogen are seizure triggers, so it's tough to know which came first.

Interesting about the cranio-sacral. I had one session a long long time ago, and it was hard to tell if it helped. It certainly didn't hurt. I'll keep it in mind.
 

Loopy Lou

Veteran
Messages
2,238
Reaction score
3
Points
163
I love the Irish Loopy Lou
I'm probably the only person who could hazard a good guess at how to pronounce your name too lol. Of course, having said that i'll probably be wrong :p (Ulsterwoman here)

I didn't have problems with sleeping on Lamictal. The problem was staying awake!
 

Endless

Even Keel
Messages
4,466
Reaction score
1
Points
0
Lamictal made sleeping really hard. At first I was getting only 2-3 hours of sleep a night, even with sleeping pills. It's up to 3-5 hours/night now, which is better. First time around when they took me off lamictal, during withdrawl I slept like a baby. In fact slept way too much.

I remember now the withdrawl symptom that bothered me most going off Lamictal - muscles twitching. A lot. Scared me silly.
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
You are right Loopy Lou - a Munster woman myself!

Glad you don't have problems sleeping Nakamova and Loopy Lou - the healing power of sleep is priceless so it's worth the world.

Oh yeah, I've those twitches too ... they are so tiny, nobody else would notice unless they touch the spot!
But they're reducing.

My sleep isn't too bad - falling asleep can be an issue, but apart from the cranio, I started listening to relaxation mp3 downloads and they do a great job. I've also started wearing those eye masks as there is too much light from the street.

Maybe they might help you Endless? How are you managing at all?


It's interesting about hormones affecting seizures - it makes alot of sense now!

Thanks!
 

Endless

Even Keel
Messages
4,466
Reaction score
1
Points
0
I don't have any trouble falling asleep. Once my head hits the pillow I'm out in 15-30 minutes. Staying asleep is my problem. And once I'm awake I'm awake for the rest of the night.
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Hello,

I just thought I would provide an update on the Lamictal withdrawal.

No more twitches and my speech is alot better now - thankfully! I'm also making less typos when typing so I'm not so slow.

I'm also less exhausted, and I can do more before getting exhausted (e.g. cook dinner AND do washing up ... I'm delighted with that!).

Last week I had pains in my knees for a couple of days but come the weekend I was able to walk without having to be supported.

I made a mistake of thinking I was 80% right and went in to work Wed evening and Thursday morning, but it completely floored me and has just set me right back in terms of being utterly exhausted. All I was doing was sorting out files on my computer.

For some reason I don't seem to have the energy to stand on my own (without leaning against something) and talk at the same time (not quite superwoman yet :) ).

I've had strange tingling in the tips of my fingers and my feet for the last couple of days. It's improving.

I'm less dizzy, but I still don't have great strength in my legs (esp my feet) and arms. My walk is really odd (since my feet feel numb), but I'm able to write (hold a pen) a bit now.

I'm going for cranio this eve so I'm hoping that will help - I really thought I would be fine at this stage. My big mistake was thinking I was able for work :roflmao:

Hope you'll have a lovely weekend
 
Last edited:

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
Thanks for the update. Make sure you are eating and drinking properly to help with your strength and alertness. (You probably are but just in case...)
 
Messages
35
Reaction score
0
Points
0
Hi everyone,

This is my first time ever joining a forum, but you have shared so much of your experiences :clap:, I felt compelled to respond to a post of someone increasing lamictal.

I'm currently (well, v slowly over the past 3 years!) reducing Lamictal and I feel the withdrawal symptoms are not well documented at all. I am teaching so I can only reduce during the summer months as otherwise I would not be able to do my job properly.

I've reduced alot slower than the doctor recommended, but it has still been rough at times. I was on a very low dose 3 years ago compared to alot of you (100mg twice a day), decreased to 50mg twice a day the first summer, 25mg twice a day the second summer, and in the past few weeks I've reduced to 25mg in the morning only. It's so tiny, but this last withdrawal has been the roughest, but I think I was just exhausted to begin with.

Symptoms include light-headedness, confusion, dizziness, difficulty with alot of noise, problems concentrating and verbalising (sounds perfectly fine in my head, but it's just not getting out!), slurred speech, stammering, and the sheer exhaustion!! It's difficult each time, but it improves slowly and then I'm great - the fog clears and I'm more efficient with work. I'm reducing at the moment, so my grammar isn't great so please forgive me, I just can't find words. With lifestyle, I have remained seizure-free, although there are times where I just need sleep. I eat regularly, avoid stress if at all possible (especially people who just drain me .. and if its not possible, I take deep breaths, tune out or walk away), I nearly always leave a party first (and always before midnight!), and mind myself. I gradully (over months) changed to the blood-type diet (mentioned in other threads) in January, and also found cranio-sacral therapy excellent.

As with alot of you with photo-sensitive epilepsy, I can't go to the cinema now for past 3 years or watch TV in the dark or party into the wee hours of the morning, and although it sounds dull I feel so much better (apart from when reducing) ... most of the time.

Thanks so much for sharing your experiences and I would love to hear more about Lamical withdrawal symptoms.
Hi i just joined the site today. I was wondering since you've been on lamictal longer then I have I have a couple questions. I experience throughout the day dizziness to the extreme that I can't see and have to lay down. I also suffer from memory loss and slow retrieval for words or phrases. I was just wondering if these side effects go away or if they are permanent side effects I am on 200 mgs twice a day also thank you :)
Gabbyg2000
 

Endless

Even Keel
Messages
4,466
Reaction score
1
Points
0
Baby steps, baby steps. It seems like small gains every day, but they add up. You are a smart cookie to go slower than your doc says to. It will minimize the withdrawal symptoms.

I am so glad you are feeling a little better.

Many of us are watching your progress, because it is our future. I hope I'm not on Lamictal for life.

When I was temporarily removed from Lamictal, it helped me to drink TONS of water. Helped flush things out of my system. I was foolish and tried drinking lots of coffee to perk up, and it caused seizures. The good news is that I slept all night for the first time in ages.

Big hugs to you. It's going to keep on getting better!
 
Messages
35
Reaction score
0
Points
0
Baby steps, baby steps. It seems like small gains every day, but they add up. You are a smart cookie to go slower than your doc says to. It will minimize the withdrawal symptoms.

I am so glad you are feeling a little better.

Many of us are watching your progress, because it is our future. I hope I'm not on Lamictal for life.

When I was temporarily removed from Lamictal, it helped me to drink TONS of water. Helped flush things out of my system. I was foolish and tried drinking lots of coffee to perk up, and it caused seizures. The good news is that I slept all night for the first time in ages.

Big hugs to you. It's going to keep on getting better!
yes I have to look at the big picture and know that it will somehow work its self right again. Right before my doctor put me on lamictal he told me not to drink caffeine because it might trigger seizures or extremely bad headaches which I have experienced a couple times. I just missed Starbucks too much :p hahaha thanks much :)
gabbyg2000
 

Eibhlin

New
Messages
73
Reaction score
0
Points
0
Another update ... as Endless said, it has definitely been baby steps.

I'm feeling soooo much better :banana:

Thanks a million Nakamova and Endless for your advice; eating and drinking properly are so vital. I eat well as I'm on the blood type diet, but I increased my snacking (fruit and nuts) after reading Nakamova's post on Friday.

I also increased my intake of water - I had been drinking about 5 glasses of water (incl a couple of mugs of nettle and sweet fennel tea to help with the detox) but increased it to 8 on Friday (also after Nakamova's post!).

The words of encouragement really helps :) and it spurred me on to drink another couple of glasses after reading your post Endless! I can understand why you would be inclined to drink coffee to help with the energy; the exhaustion is so debilitating - that's really awful about the seizures though.
Big hugs right back at you!

The tingling, feeling of numbness, and dizziness completely went about an hour after the craniosacral therapy. I was completely exhausted Saturday, but the improvements have fast-forwarded since then. I had been very pale and sick-looking (according to anyone who saw me the past few weeks) but I definitely had more of a colour (according to my husband) on Sunday.
I even went swimming for a short while yesterday and today! I can stand AND talk! :woot:

The cranio dr recommended milk thistle (to help my liver detox) and a green powder to add to food to help with energy (it has alot of seeds and veg) so I started taking them on Sunday. My husband was going away with work Sunday so I went with him (it wouldn't have been possible the previous week) so I am now also getting alot of rest and fresh air. I'm able to have a good nap during the day as it's quieter than where we live.

So I don't know if it's the extra water, the cranio-sacral therapy, the milk thistle and powder, being able to have quality naps, time, or a combination of all the above, but I feel incredibly better. I'm glad I stuck with it.

Endless, I also thought I would be on Lamictal for life. But now I'm down to 25mg in the morning.

Gabbyg2000, how long have you been on this dose of Lamictal? Are you eating/drinking properly and sleeping enough? I only had
that dizziness and problems with words and memory when I was lacking alot of sleep and when reducing the Lamictal (even though
I was sleeping well). Try to cut down gradually on the coffee. You will probably have hairband headaches for a while, but flush it out and
your body will thank you, and maybe the effects of the Lamictal might reduce.
 
Last edited:
Top