New - reducing Lamictal

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Eibhlin, that's good news -- I hope you continue to feel happier and healthier!
 
Another update!

This is turning into a kind of a blog, but I figured it might help others through withdrawal.

I still feel incredibly better than a few weeks ago, but I get tired easily.

I think I’m just burnt out and my body is taking this opportunity to repair itself. I had been working long hours for a long time, and I had been struggling mentally, physically and emotionally, so, although some of what I feel is the withdrawal, I’m sure it’s being emphasised by being burnt out.

I haven’t needed this time off with the other reductions, but a pharmacist friend of mine explained that I halved the dose I had been on for a year in a short space of time, so it’s a shock to the body.

Every day, the amount I can do increases, but I’m still not back to myself. I was so excited a couple of weeks ago at being able to do tiny things, but I guess the more the fog is lifting, the more I want to do!

I find I can get quite confused when tired, but I know a lot of other people like that. I have problems finding words, but I also know I need to rest.

I’m sleeping really well at night, and not having problems falling asleep. My eyesight has improved; I have noticed I can see more detail and I do not need my glasses to watch TV, but that could also be because I’m not working, and I’m rarely on the computer, except to come in here. Time will tell.

Since I reduced, I had been getting these strange zooming-out experiences when falling asleep. Like going really fast up an elevator and going back down, but they have decreased. I was also quite sensitive to noise, and that has decreased.

I also forgot to say that in earlier reductions, I used to feel like I was going to fall out of bed any time I was trying to fall asleep, but it hasn’t happened this time.

My husband and I go for a walk in the evening, but the pace is slow … I’m sure it looks very romantic, kind of like an old married couple. I guess it’s no harm to slow down and smell the roses! :rose:

This time off from work and study has put a lot of things in perspective. I’ve realised what really matters in life. It’s like there’s been a re-alignment.

I was to start the next reduction this week, but I’m going to hold off for a couple of weeks and give my body a chance.
 
That sounds great Eibhlin. I like to hear the positive updates so don't be shy about letting us know how it's going. I think it's smart to go slow on reducing the dose -- it can't hurt, and it can definitely help. I don't know what size your pills are, but in some cases you can even razor them in half. That's what I did when I was tapering onto Lamictal -- I would cut apart my tiny 25mg pills into tinier 12.5 mg pieces.
 
Thanks Nakamova, that's a good tip, I'll definitely do that with the 5mg tablets when I begin the last reduction. I hope you're well yourself.
 
For the first time in a few years, I was able to read subtitles on TV last night without my glasses ... it was my husband that pointed it out - neither of us were wearing our glasses, but I was able to read it!! Again, I don't know if it's the rest or Lamictal withdrawal, but I'm excited :-) and had to share! hopefully that's a long-term improvement!
 
Wow! That make me hopeful for when/if I go off Lamictal. How long were you on it?
 
I know! I'm shocked! I had noticed I needed my glasses less and less the past couple of weeks, but it was my first time watching a programme with subtitles! I've been on it since about Sept/Oct 2001, and started reducing Summer 2009.
 
I've been on Lamictal just 3 1/2 years -- so it's good to know that even after a ten year stint, tapering can make a difference as far as vision is concerned.
 
Hi All,

This is the first time I've been part of a forum and I think they are a great way to share similar experiences.

I have JME. I was initially put on 200mg of Lamictal a day for 6months, it did absolutely nothing when I went for my second EEG and my dose was doubled to 400mg a day. This made me extremely drowsy, I lost my memory very quickly and forgot complete chunks of my life. I was generally slow, lethargic and keeping up with my studies at university was getting very difficult. No grand mal seizures, no jerks or absent seizures though.

Four years later I went for another EEG and it came back normal. I cut back to 200mg a day - slowly, over the course of about 3months - like a few people mentioned, I also took a lot longer than what the doctor suggested.
In regards to memory, I am a lot better now and can remember much more than usual. I feel more energetic and less 'slow' in a sense, however my grand mal seizures have returned.
I am 24 and keeping up with the lifestyle of partying, staying up all night and drinking has definitely taken it's toll.*
A few days ago it all hit me when I heard this girl I used to go to school with had a seizure in the shower on the same day I had mine, and she died.
I got so freaked out like that could have been me.!!

I have had about 6 grand mal seizures over the last 6 or so years, absent seizures are a regular and so are jerks in my arms and legs, especially when I am lying in bed or trying to fall asleep.
I realise that I need to fix up my life and can't do everything all the other kids my age are doing because my body just can't handle it and I am just lucky I'm still breathing !!

I look forward to meeting people on here, it would be great to hear other people's stories, especially how people my age are dealing with it all.

Best wishes
Tanjap.
 
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I'm not sure my vision problems are the same, but here goes. Everything looks like I'm underwater (that's not wavy - try it in the pool and see), and it's blurry around the edges, also greyed out areas. I blamed my vision problems on another problem altogether, not lamictal. It's good to hear it could be the lamictal, and it's good to hear it could get better after I quit taking it.

Thank you!!!

P.S. I have an extra-sharp pill splitter that does great cutting my tiny little generic pills in quarters. But if you can have your doc prescribe the 12.5's.
 
Hi Tanjap, 400 to 200 in 3 months is actually quite fast! I'm delighted your head feels clearer (it really is like a fog isn't it?!), but it's awful that your seizures returned. You might find that when you fix up your life (as you say yourself, although I think it's not really fixing, it's just adjusting), the jerks etc
might reduce - hopefully.

It must have been an awful shock to hear about the girl you went to school with, I'm sorry to hear that. I got a fright and I don't even know her.

It is difficult to try to find the right balance between enjoying college life, meeting new people and minding yourself.

I never drank alcohol (aside from tasting drinks a couple of times) - I just didn't want to risk mixing it with medicine. Of course there was the peer-pressure but I was well able to enjoy a night out and have a clearer head the next day (and save a fortune!). I was lucky, there were breaks in my timetable so I was able to have a nap during the day if I was going to go out or if I had been out.

I got more studious after first year undergrad so I didn't go out so much after that as I realised something had to give! It's all about opportunity cost!

You are right, with epilepsy, we have to mind ourselves more than others, but we can still have a good time.

I used to love going to nightclubs and just dancing, but then strobe lights came in everywhere - I was so annoyed!!! But I took it as a sign that I was
just meant to study instead!

Endless and Nakamova, my eyesight got a bit blurry last week but it is great again this week ... time will tell! Endless, your vision problems sound awful. Fingers crossed it will improve when you're in a position to reduce.

Thanks for the tips on cutting the tablets :p. My husband got the 5mg tablets for me but we've decided to stay as I am for the moment (25mg in the morning).

I know it's a tiny dose, but we got such a fright with how sick I got reducing this time, and don't want to risk it just now. I want to feel normal for what's left of the summer and I'm back teaching in September so I have to be right for that. With every other reduction, I just took a few days off and just made sure there were no major deadlines with work, but this time I've ended up on sick leave for 2 months! (I'm a PhD student)

My walk finally resolved itself a few days ago ...so I'm really delighted with that. To be honest, we were getting really worried about it. I was fine walking really slowly, but when I increased speed, it's like the signals wouldn't go to my feet ... v frustrating - little old ladies were passing me out (probably delighted with themselves!). So I went away for a few days to somewhere alot quieter with plenty fresh air and I think that helped ... it's like it was an overload of information (alot of people, traffic and noise + walking).

My speech still goes odd sometimes and I can get quite confused but I've realised (well, it was my husband and mother and sister who pointed it out to me!) that it seems to happen when there's alot going on (again, information overload!).

I was feeling sick after using the computer for any length of time, or after reading, but today I'm not so bad. I still wouldn't be able for work in a busy office so I'm hoping to ease into it from home.

I still get exhausted from things that other people would take in their stride, but the amount I can do increases every day. I've never had to mind myself this much and it's like I'm not able for things, but it's improving - I seem to be taking in information faster than I used to. Maybe that's why I get exhausted :ponder:. When I say exhausted, I just have to put my head down, I can't move and I feel nauseaus, but it passes depending on how far I push myself ... I can be fine again after 20 min, or it could take a few hours.

I don't get the tremors anymore thankfully but I do get muscle spasms ... it feels more like a tapping and it's very localised - it might be only 4 taps. It's reducing.

So after alot of discussing, we've decided that i'll wait until I'm well able for everything before reducing again. We have to listen to our bodies! I'll hopefully be in a better position to take life easier then. So it'll probably be next summer again!
 
Hi - another update. I hope ye're all well.

I hope these updates aren't boring anyone to tears - I just hope they might help someone else who is withdrawing from any med. It's just how i've been, but everyone is different.

As my husband, family and close friends have said to me, I'm "back"! - for 3 weeks now.

When I said exhausted in previous posts, alot of the time it included a tingling feeling in the back of my head and nausea. That feeling reduced, from lasting days or hours, to minutes, seconds, and now it very rarely happens, and if it does, it's only for a few seconds.

I feel great, alot better than before I reduced ... I'm a bit sorry now that I didn't manage to come completely off the med, but it's such a tiny done, hopefully all will be fine.

Best of luck to everyone!
 
Thanks for the update -- it's very good to know how the withdrawal process is going. It gives me info and inspiration for when I come off Lamictal sometime in the unknown future...

BTW, read in the other thread that you're pregnant -- Congrats!
 
Great news.
I tapered very slowly my daughters medication also. The meds obviously increased her seizure episodes. She had over 50 in the course of about 4 yrs.

She has now been seizure free for 9 months, and med free for about 3 yrs
 
Endless, I hope all is well with you. I had an 8 week scan on Wednesday and we could see a lovely heartbeat - we feel so lucky :-). I feel well, I get quite light-headed but I just make sure I get plenty rest, sleep, exercise and food!

I only have had a bit of nausea but its nothing like the 'withdrawal nausea' so it's fine really, I don't mind it at all! I'm back teaching but it's part-time so i'm able to have a good balance.

I've been taking multivitamins with magnesium, selenium and the usual other vitamins since last Sept so I think that has helped. I've also been taking Omega 3, and I started taking a calcium supplement last week. Although I eat a very balanced diet with no processed foods (except for a square of dark chocolate every so often) and mostly organic food, I'm so concerned
about everything, but perhaps that's normal! I've been going for acupuncture for the past 4 weeks and I think that's helping.

RobinN, your daughter's story is really inspiring. I know I'm still on a teeny tiny dose of lamictal but I feel so much better than before. I've only had little muscle twitches that last a few seconds, and it might only happen now on average once a fortnight, but i'm sure everyone gets those.
 
Endless, I just read in another thread that you are reducing at the moment and your hair is falling out. I've noticed (It was pointed out to me by others hoovering/brushing floors!) that I lost alot of hair this summer, but it seems to have calmed down now. I hope you feel better soon.
 
Thanks, Eibhlin. I know it's going to make a difference. Hopefully the right kind.

I am so happy that things are going well with you and the baby. When you get pics, we'd love to see them! Even the fuzzy ultrasound ones. :)
 
Thanks so much Endless for your lovely post - I was delighted; it's lovely when someone else is also excited, and I had talked to my husband about scanning the 12-wk pic in a few weeks. Unfortunately I started spotting Monday, which became heavier yesterday, and I had a miscarriage last night; we are both worn-out and heartbroken. I know they are common and it happened for a reason, but that doesn't ease the pain right now.
 
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