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  #1  
Old 08-03-2012, 12:00 PM
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Unhappy New member- petrified of taking the meds


Hi I'm Jess I've been recently diagnosed and start taking my medication tomorrow. My neurologist has prescribed me lamictal. I've read up about all the side effects and am petrified. I'm a high school teacher in Australia so short term memory loss is not an option for me! can anyone share their experience? It would be a great help!!
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Old 08-03-2012, 12:40 PM
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Hi Jess and welcome! I personally do not take Lamictal. I am sure someone here does. As far as side effects, try not to worry. Some people have none. It all depends on the individual. I take Keppra and Carbatrol with no real side effects. I hope all goes well. Keep us posted!
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Old 08-03-2012, 01:23 PM
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I have been absent from the site for quite awhile but Lamictal has been part of my routine. Husky Mom is right anti-epileptic drug's effect everyone differently. I do not want to add to your anxiety Jess but my personal experience with Lamictal has been less than + but everyone's brain chemistry is very different. Try and listen to your body and work with your Dr hopefully the benefits outweigh the risks. Keep your chin up.

If you would like to learn a little bit more about my personal experiences check me out in the foyer the thread is labeled Howdy but as I said before keep in mind everyone's chemistry is different and I am on a very very high dosage and am also taking multiple medications not just Lamictal.

(after thought) for the purpose of clarity

"my personal experience with Lamictal has been less than +"

To be fair I cannot attribute this statement to be linked solely to Lamictal since I am on 3 different anti-epileptic drugs and periodically take prescription pain killers.

Last edited by The Dude; 08-03-2012 at 01:25 PM.
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Old 08-03-2012, 04:09 PM
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Originally Posted by Jmazzolini View Post:
I'm a high school teacher in Australia so short term memory loss is not an option for me!
Jess,
Do not be afraid!
It is only important to be aware of the side effects that actually do affect you.

I've taken Dilantin for 40+ years and have some but not all of the side effects. My memory is affected, both short and long term, but I've found a way to cope. The important thing for me to understand is that what is happening is indeed an effect of the Dilantin as well as a result of how my epileptic brain processes information. I found this article very helpful Types of Memory Problems. For me, knowing that this is how my brain works has allowed me to accept it and get on with life. I had thought for years that I was stupid and just fooling those people who said I was smart. How could I be smart if I can't remember a damn thing? Then the internet came along and I started searching about epilepsy and memory problems. Found one study that linked them together but most people didn't take me seriously when I mentioned it so I didn't have confidence in the study. Then I read the article on Types of Memory Loss - it describes what can happen in an epileptic brain. I had proof. And now I realize how many stressful situations were the direct result of me not understanding how my brain works. Now that I understand these details I know how to cope when a situation arises.

However - that is all about me. You may not be affected in this way at all. I have 2 friends with epilepsy - one has memory problems but the other does not.

Do not stress about "what might happen" since stress is just a bad thing in general.
If you have problems You Will Cope!
I say that with assurance because I have coped. I have a job that I enjoy and a passion that I love.

Above all else, Be Not Afraid!
CWE is a wonderful place with wonderful people and links to all sorts of information.
So when you are afraid, come here and hang out for awhile.

Seize the day, trusting as little as possible in the future ~ Horace

Last edited by Dolores; 08-03-2012 at 04:15 PM.
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Old 08-05-2012, 11:42 AM
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Originally Posted by Jmazzolini View Post:
Hi I'm Jess I've been recently diagnosed and start taking my medication tomorrow. My neurologist has prescribed me lamictal. I've read up about all the side effects and am petrified. I'm a high school teacher in Australia so short term memory loss is not an option for me! can anyone share their experience? It would be a great help!!
Hi Jess,

I took Lamictal a number of years ago and although it didn't effect my memory anymore than the other meds, I did feel better while taking it. I wasn't as sleepy, lethargic while taking that med as some of the others made me.

Having seizures go unchecked over time can effect memory, also.

From http://www.epilepsy.com/epilepsy/thinking_memory

Quote :
INTRO TO THINKING AND MEMORY

People with epilepsy commonly report having problems with their memory. Some describe having trouble remembering names that they once knew. Others forget appointments or are unable to remember to take their medications. Many others feel that they can recall things from the distant past, but cannot recollect events that happened in the past week. In fact, memory difficulties can have such a tremendous impact on people living with epilepsy that it may significantly hinder their functioning at work, in school, and at home.
Check this one, too:
http://www.epilepsy.com/epilepsy/epilepsy_BRAIN
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  #6  
Old 08-05-2012, 12:08 PM
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Hi Jess... I'm so glad you found CWE. As you move through this new journey in life whatever happens you can come here and figure some stuff out. It is such a relief to know there are so many others who get how you feel.

Try to remember the common side effects are rare.

What bothers me about these drugs is the long term health side effects such as liver, bone, and mental changes to name a few that to me are the real question. I don't know if lamictal has any long term effects, but many of these meds do. If someone is prescribed a medicine that is known to cause osteoporosis, then that should be disclosed so that person can take action right away to protect their bones. That's proper care to me.
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Old 08-05-2012, 04:41 PM
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Hi Jess, sorry to hear you are having to go on meds. I don't have much to offer as my daughter, who is 16, has only been taking Lamictal for a week but can only say so far, so good. She has important exams in the coming school year so things like lack of concentration, memory loss and drowsiness are a big concern for us. I'd be interested to hear how you get on - I presume you're starting on a low dose and gradually increasing? Good luck!
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Old 08-05-2012, 04:46 PM
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Hi! Welcome to CWE!

Ive taken Lamictal and for me, it didnt work, but that does no mean it wont for you! Ive read lots of posts from many people here that take it and it works for them. It all depends on the individual. I have taken lots of different medications in the past, the one I am now on, is Keppra XR. It may take sometime, but you will find the right medication that will work for you! Hang in there!
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Old 08-05-2012, 08:13 PM
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As everyone said different meds work differently on everyone. If you find that it's not working or the side effects are too bad (if this would happen) then talk with your dr about changing the med. I've been on several different meds for this reason.
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Old 08-05-2012, 08:42 PM
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Hi Jess, I'm sure you're feeling overwhelmed at the moment. I'm 44 and was diagnosed eight years ago. I have mainly simple partial seizure and am on Keppra and Epilim. I was on Lamictal briefly in the early days and found it very good - I didn't feel tired or miserable BUT I did develop a rotten rash on my arms, which is something that just happens to some unlucky people. Otherwise, I'd prefer to be on that than what I am taking.
I see you're in Australia ... if you haven't already been in touch with them, contacting the Epilepsy Foundation for a chat is worthwhile. The counsellors in the Melbourne office are great and very knowledgeable. And I think most of them have e, so really empathise. If you want to have a bit of a cry, they are quite willing for you to sob into the phone. I've certainly done that. The person I spoke with was also really good in supporting/encouraging me to get a second opinion when I was wavering and didn't know what to do.
Look, epilepsy is a pain in the bum and it's reasonable to feel pissed off now and then. I HATE it and I've been through other major health probs (prem baby - now beautiful 10yo girl, two heart surgeries as a child and then a third 18 months ago) but the uncertainty of e is really yuk. Just make sure you have work colleagues, friends and family who are able to support you and even get them to read some of these posts.
But the drs will sort out your meds, and you'll be ok.
Take care, Alli in Melb
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Old 08-05-2012, 10:02 PM
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Thank you all for your feedback!

I have started by taking tiny doses - from what I understood it's the dose 3 month old babies take. It builds up from week to week.

I can easily say this has been one of the worst years of my life. I found out I had epilepsy when I had a seizure whilst driving which caused me to crash into a tree.

I am so happy to find a support network with such lovely people, thankyou all. Be sure to keep in contact! xxx
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Old 08-06-2012, 05:24 AM
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Hi Jess,

Welcome to the forum.
Quite often it can be scarey when you are 1st diagnosed with epilepsy & have to adjust to taking meds.
I was on Lamictal for 2 years, I didn't have too many side effects from it but for me it didn't help control my partial seizures. The side effects listed with the medication are more of a guide . As others have said we are all different & each person has different side effects from the meds.

Originally Posted by AlliOz View Post:
I see you're in Australia ... if you haven't already been in touch with them, contacting the Epilepsy Foundation for a chat is worthwhile.
with Alli,
There are a few different epilepsy organisations in Australia who are great support. Here is a link to one of the organisations
http://www.epilepsy.org.au/

I also live in NSW (on the NSW/Vic border) but there are no epilepsy organisations in my area. For the past 3 years I've seen an epilepsy educator from the Vic Epilepsy Foundation in Camberwell. The epilepsy educator I see has been great, I mainly keep in contact with her via email but she did come see me when I was in the Austin hospital (1st when I had Video EEG monitoring then when I had brain surgery) & she came to see me a month after my surgery while I was still recovering at my parents place.
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Old 08-06-2012, 10:34 AM
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Originally Posted by Jmazzolini View Post:
I can easily say this has been one of the worst years of my life. I found out I had epilepsy when I had a seizure whilst driving which caused me to crash into a tree.

Be sure to keep in contact! xxx
I can see why it has been a bad year for you if you crashed into a tree, stemming from a miserable seizure. Thank god you weren't seriously injured and are still able to chat with us. Hopefully, taking meds will prevent this from happening again.
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Old 08-06-2012, 12:11 PM
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Hi Jess
I have just posted a topic of my own because i am feeling pretty rubbish right now about the whole dam thing,
i am on lamotrigine (lamictal) take 150 a day, the memory loss i get it - its not the long term for me, its the short term, ill be halfway through a sentence pause to think of the next bit and forget what i was even saying, it happens alot and people just remind me then its totally fine - good test to see if somesone is actually listening lol,
you could use it to your advantage as a teacher - while you pause to try and get it to come back, say to the students - so what was i saying just then - which ones of you were actully listening to me! one of them will tell you and then you can carry on without them suspecting a thing.
beleive me i know how you are feeling right now - i was 21 when i was diagnosed, and i was cabin crew, flying all around the world and then epilepsy reared its ugly head and i lost my job and driving licence.
this is the first time i have posted on this forum but i have on UK ones and i can promise you that anyone with epilepsy really does feel your pain, we all have bad days, (im having a bad one today lol) and anytime you want a rant - its ok to do it here, everyone is supportive xxx
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Old 08-06-2012, 08:04 PM
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Hi jess --

I've been on lamictal for 4 years now. No problems with short- or long-term memory for me. As others have noted, your experience may vary. Lamictal could be perfect for you, or you could have side effects that are intolerable. The important thing is to give any med a chance to work, keep track of how you feel, and talk to your neurologist about making a change if your quality of life feels too compromised by the med.

Best,
Nakamova
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Old 09-04-2012, 02:35 PM
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hi! i am now in the management phase and am hopefully ALMOST seizure free. (they have gone down.) the one side effect you really should be worried about is a rash on your chest. anything else isnt a big deal.

as for memory the doc told me playing sudoku, and solitaire and in general doing research would help. so i took up piano AND guitar. seeing as i dont know how to read music, Well, thats an added bonus. the jury is still out on my memory but will check in with you on that. the lamactal XR seems to be working and the next increase will hopefully do the trick.

my memory issues are not with the meds but with the fact that seizures destroy your brain. mine have gone uncontrolled for so long due to ineffective meds so i may have a few more issues.
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Old 09-24-2012, 12:35 PM
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Originally Posted by kellyp181 View Post:
beleive me i know how you are feeling right now - i was 21 when i was diagnosed, and i was cabin crew, flying all around the world and then epilepsy reared its ugly head and i lost my job and driving licence.
this is the first time i have posted on this forum but i have on UK ones and i can promise you that anyone with epilepsy really does feel your pain, we all have bad days, (im having a bad one today lol) and anytime you want a rant - its ok to do it here, everyone is supportive xxx
I was diagnosed with E at 22 years of age and I was in the flying industry, also, with intention of flying all around the world. I also married a pilot, so did get to do some flying, but not like I had intended. And like you say, we all feel your pain, especially if one has refractory E.
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Old 09-24-2012, 02:17 PM
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Welcome to CWE, I know the fear of taking new drugs. Eventually your body should recognize something that is keeping you balanced out. Liked stated before, everyone is so different. It is hard to tell how lamictal will work for you. I took it before, I felt less likely to have a seizure. My memory wasn't to bad really at that time either. I had to quit that because a rash popped up. Listen to your body, it will let you know what pills are a no go. Best of luck to you and I hope they can find the right treatment for you.
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Old 09-24-2012, 04:21 PM
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Hו Jmazz,

I'm new here as well, have been taking Lamictal for about 8 months with no major side effects. The only thing I suffer from are headaches that I get after taking the pill but they will pass after less than an hour usually, and I haven't noticed anything else.

I haven't seriously thought about memory problems related to epilepsy, I've always been a bit distracted so I always assume that's why I have trouble getting things into my head.
A good solution is to write everything down. I always have a notebook in my bag, all my appointments in my phone and it works out in general.
I have to make long interventions in discussions sometimes, which is a bit like giving a lesson I guess, and a good tip I can give you is to prepare a page with the general points you want to make, a line for each one. This way you'll have something to jump back to if you forget what point you were making and you won't forget or miss anything.

Even if you will have some memory issues it's manageable, don't let it frighten you too much. Just take it a day a time, see how it goes, and if worse comes to worse they'll find another med that will suit you.

Last edited by benw; 09-24-2012 at 04:24 PM.
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Old 09-24-2012, 04:33 PM
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Hi Jess, I'm also new and also scared of the medicine I just started. Mine is different but also a seizure med with side effects. Maybe we can encourage each other to take/stay on it.

I do know that I went to the neurologist, in part, because my memory had gotten so bad at times that I could not function.

I am thinking that our memories will have a better chance with medication than without. That helps me to take mine when I don't want to.
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