New - reducing Lamictal

Nakamova

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I'm so sorry Eibhlin. Big hugs to you and your husband.
 

Eibhlin

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Hello everyone,

I hope that everyone is well.

I just thought I would give an update, sorry I haven't been here in a while, just didn't feel up to it.

We were completely heartbroken, but time really is a healer. Thanks for your message Nakamova, you are very kind. Just an aside, and off topic, but if anyone knows anyone who has a miscarriage, just say you're sorry, or google what you should say; most other words, although well-meaning, will only hurt them as you don't know their journey. Issue was low progesterone, baby was perfect, and it also confirmed what we had thought - I've had at least 6 undocumented miscarriages prior to this. So I'm on injections and other med now, bit ironic how I've reduced Lamictal only to go on something else.


Re reducing Lamictal, I feel healthier than I have felt in years, but that could also be because of eating mostly organic food, exercise, reducing stress, and having plenty sleep. We also moved to a quieter area, which is doing us the world of good. My head is alot clearer. I still get slight muscle twitches, but they are tiny, and mainly happen when I'm tired or upset.

TV and flashing lights seem to affect me more (feel nauseaus etc.), so I just avoid them. I wear sunglasses when I'm in a car and that helps with the light shining through the trees.

Certain sounds/music seem to affect me now though ... my husband noticed, so we just change the music.

I went to see the Neurologist in October and he was great, completely understanding about all the withdrawal effects and not surprised. He was very encouraging. Completely unlike my GP who reckoned I was just stressed when I explained the effects and wasn't very nice to be honest (in fact, I couldn't have been more relaxed while reducing as I wasn't able to do much anyway!). We are all amazed that I didn't have a seizure after the miscarriage, so lifestyle and food must be making a big difference.

I'm still on 25mg, which is teeny tiny, but will stay as I am for a while. I'll let you know when reducing! Thanks for your support.

Best of luck to anyone trying to reduce.

I wish you all good health and happiness for 2012.
 

Nakamova

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Hi Eibhlin, thanks for the update. I did wonder how you were doing. With the low progesterone, has there been any discussion of trying a progesterone cream as an anti-seizure med? (low progesterone + high estrogen = seizure trigger). I know you are trying to avoid meds altogether, and I very much hope you can do so, but it might be worth keeping that option in mind.
 

Eibhlin

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Thanks Nakamova, that's great advice as always, and it would make sense. I'll be seeing my neurologist in a couple of weeks so i'll say it to him.

Today is the first day of what will hopefully be the last leg of my withdrawal. I've started at 22.5mg, and the plan is to go to 20mg next week, 17.5 the week after and so on ... I think that is slow enough, so fingers crossed. I will slow down the pace depending on how i'm feeling.

I hope ye are all well
 

Eibhlin

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Hi everyone,

Just a quick long-overdue update :)

I'm almost 6 months medicine-free now, and I feel great. As I said in the previous post, I reduced in 2.5mg, and any side-effects of withdrawing (especially the tingling at the back of my head) stopped at 15mg. I get twitches now and then, but it's only about once a month now.

Sometimes I feel "epilepsy-sick", but thankfully I haven't had any seizures as I really mind myself: I eat regularly, go to bed early, and get plenty of exercise (must really get more though!), avoid stressors as much as possible, cover my eyes when there are flashing lights, and I change the music when a tune comes on that makes me feel odd. I rarely eat dairy, wheat and sugar, avoid processed foods, and eat approx 70-75% organic food now for other reasons, but maybe that's helping, and I'm still taking supplements.

I hope that everyone is doing well. A big hi to Endless and Nakamova, you were great support when I was reducing, thank you, hope you are both well.
 

Nakamova

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Hi Eibhlin! I was wondering how you were doing. I'm so glad you're happily med-free! I've probably asked this before, but since you still get the occasional twitches, do you take magnesium as one of your supplements? Sometimes it can help with muscle-related stuff.
 

cazzy

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i been on 250mg twice a day,and was thinking about reducing it,reading the side effects of going cold turky is worrying...if i dont get one decent night sleep i go nuts.my skin is so bad did not realise lamitcal was doing this....i wonder if lamitcal causing skin not to heal
 

Nakamova

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cazzy -- best to discuss this with your neuro, and ask about tapering if Lamictal seems to be the cause of your skin irritation. Tapering should always be done as slowly as possible, in small increments, ideally under the supervision of your doctor. Don't stop cold turkey.
 

cazzy

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i discharged myself from kings collage hospital two years ago i not got neurolgist at the moment i going to have get one but so far i seem to know more than they do which no says alot.i playing dangerous game i know, but hospitals and dr in my area r rock bottom.i taking cloberzam aswel have done 15yrs my treatment as been very poor
 

cazzy

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could you tell me please the name used that opposite deja vu.where you forget rater than feeling of being there before feeling....i think it begin with j
 

Nakamova

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Jamais vu. (It's French for "Never seen.")
 
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This is my first time posting here...I've been on Lamictal (Lamotrigine) for the past 4 years. Am currently taking a combined dose of 300 mg (150 in the morning, 150 in the evening). I've been seizure free (with medication) for 4 years, and since I don't want to be dependent on medication for the rest of my life (if at all possible), my doctor has agreed to try weaning me off over the next 7 weeks. Once I've reached the last week, I'm to have an EEG to see how things look in my brain without medication.

My doctor gave me express instructions to call if I started to feel odd as I was starting the step down process. This is my 3rd day of the first week, and I've gone from 300 mg to 225 mg (1/2 dose in the mornings, full dose in the evenings). I can tell my brain & body are trying to adjust to the different levels of medication. While I wouldn't use "odd" to describe how I feel, I can definitely tell a difference over the past few days. After reading about some of the common side effects of stepping down from the medication, I feel a lot better!!! I realize the timing is different for everyone, but does anyone have any kind of average length of time it takes to truly adjust?
 

qtowngirl

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welcome bagley,
we're on the same amount of lamotrigine :) and whether it's worked for me in the past 2.5 years is a :ponder:. my first choice after surg was getting off vimpat and 2nd is lamot which will be august 6th (have to stay sz-free for that to happen tho).
i read your info, and want to ask if they said why it was such a quick e diagnosis? it's usually after two seizures due to an unknown cause. also, did they do a catscan or mri four years ago, or will now, to go with the eeg?

how long did they say the ramping down would be? when i go off it i 'lose my license for 4 to 5 months' as it needs to be done so slowly. did they give you a similar time frame?
 
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Thank you! :)

Honestly, to me, it seemed like a very, "Oh, well, this technically meets criteria for an epilepsy diagnosis" kind of thing. About 12-13 years ago, I'd pulled an all-nighter for school, & I fell asleep at my computer. When I woke up, I realized I was running late for class, so I jumped up to rush to get dressed, passed out on the way to the closet & had a seizure. Hadn't had another one until 4 year ago when I'd just had a baby (he was about 8 weeks old when this happened), had gone back to work at 5 1/2 weeks because I didn't have enough vacation/sick time for longer than that, my husband & I had completely opposite schedules, so I was staying up with our baby on those sleepless nights until 2:30 when he got home & took over, & I could get maybe 3 1/2-4 hours of sleep until I had to wake up & get ready for work & get baby ready to go to daycare. Also, I was eating the bare minimum to get by since it just never seemed like there was time to eat. Four weeks of that is apparently all I needed to push me over what my neurologist calls the "seizure threshold"...EEG came back abnormal, showing seizure activity, & they did an MRI 4 years ago which showed a small shadow on my brain. Did another MRI about 2 years ago, & there was no change, so dr just decided to wait & see, report any weird feelings/sudden personality changes, etc.

Dunno if there's a plan to do another MRI this time around...might depend on EEG results...

The weaning schedule for me is to step down over the next 7 weeks...I've been searching for the past 2 days for information on what to expect, & found this forum...SO glad I did!!! :)


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qtowngirl

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:) yes it's a great place.

i just :ponder: though.
-odd that they say you 'technically' have epilepsy but then take you off your meds. that doesn't usually happen, unless it's a child as they can outgrow it. as adults it's with us for life, guaranteed. one can go 10 years seizure-free, or as i just heard about from my surgeon, a patient of his went 25 years seizure-free after brain surgery.
but then, e will bite us in the ass, that's what it does. seizure-free doesn't mean epilepsy-free, and those with epilepsy are to be on meds.
-on the other hand, if it's completely your decision, no one can stop you. odd that your doc is going for it tho.

imo ask for an mri anyway next week, regardless of the eeg results. a 'shadow' in your brain is something, and they should keep an eye on it every two years atleast. best of luck my dear.
 
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Thank you :)

As I learn more about epilepsy & seizures, I feel like I need more information. I have no idea what area of the brain my seizures occur, & I don't recall any of that ever being something my doc talked about with me. It's also entirely possible I don't remember it, too. At the time, I was reeling from the information that the EEG had been positive for seizure activity.

I know different things can trigger seizures for different people, so maybe stress & little sleep & not eating enough are my triggers?

I think the biggest question I want an answer to is: is it possible to be/remain seizure free without meds?


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Janus

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I know for me; lack of enough sleep is a big trigger and stress and not good food. I have heard about success with diet to get seizure free w/O meds and there may be other ways too. I think it is unique to ones condition.
 

qtowngirl

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Thank you :)
As I learn more about epilepsy & seizures, I feel like I need more information. I have no idea what area of the brain my seizures occur, & I don't recall any of that ever being something my doc talked about with me. It's also entirely possible I don't remember it, too. At the time, I was reeling from the information that the EEG had been positive for seizure activity.

I know different things can trigger seizures for different people, so maybe stress & little sleep & not eating enough are my triggers?

I think the biggest question I want an answer to is: is it possible to be/remain seizure free without meds?
good start, b/c the more info you know the better you'll feel, even if some of it is worse than expected. between now and your next appt. make a list of all questions you have (ie: what area of my brain do these occur?). start with the most important, down to things that you don't 'need' to know that day, as that ensures the ones that are bothering you get answered, and if they gotta jet to the next patient, whatever's left can be asked at your next appt.

seizure triggers is quite a large spectrum- some affect alot of us, while some are more rare. regardless of that, the top three are lack of sleep, stress, and alcohol/drugs, in that order. if you're under more stress than normal right now and not sleeping enough, that very easily could be the reason. and the more triggers going on simultaneously, the more likely a seizure is.
sometimes it feels like we're molded into a rule book, like a child. 'Eat your dinner, get to bed, don't ever do drugs, only keep the good people around you, have as much fun as you can, live life to the fullest..........'
right - where's that platter of easiness?!?! sign me up!

re: meds. it is possible, but not generally the right thing to do. the keto diet is a possibility, but doesn't work for everyone - another good thing for you to research :) like i said yesterday pls keep in mind that people do go off their drugs, and some do go seizure-free... for awhile. 99% of the time it comes back to bite one in the ass, so the best way to 'get along' with our e is to respect a few basic rules, number #1 being taking our meds.

:hugs:
 
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