Lamotrigene not working/Making things worse?

[Loopy Lou]

Had a support session with my boss the other day.

So anyhoo i'd been feeling things weren't right at work lately, so i went through how my health is at the moment, and all the general stuff about test results and that, and explained what the side effects of my meds are doing to me. I'd been really stressed, and a couple of times this week i just went to work and couldn't stop crying for worrying. That's not really like me. Also I'm either sleeping about 16 hours a day, or not sleeping at all.

I'm sure the lamotrigene is making things worse. I went into the kitchen at work to make a brew the other day, and my colleague asked me who came in the back door (in the kitchen). I looked at her funny, and said that well, no one did. I was on my own in the kitchen making a couple of cups of tea.

She said i'd been having a full-clown conversation for like two minutes. No memory of it whatsoever - i just hope i didn't say anything offensive about anyone!

The next day i had just got one of the ladies out of the bath and went into her room to blow dry her hair. Went to get her hoist out of the bathroom, and it wasn't there. I asked the other girl i was working with if she had moved it and she said "Yeah, i just took it into W's room when you were doing her hair, and i bumped into you with it!"

No memory of that either, even though the next day i did have a nice bruise on my ankle.

On other occasions my hand "forgot" to hold a glass of milk, i stood in C's bedroom for about a minute trying to remember what i went in for (the item was in my hand!), and i ended up going way past my stop on the bus because i was busy daydreaming.

Losing. The. Plot.

Can't wait til i get the EEG results back. I'm wondering if this means the lamotrigene is making the original problem worse, or if my body is still adjusting to it?

 

[skillefer]

Honestly, I'd call the doc and let him know what's happening. It sounds like your symptoms are getting worse.

 

[Loopy Lou]

My GP asked me a couple of weeks ago if i was having any side effects or anything and i said no, apart from the sleeping thing. I think it's just been mainly since i reached 200mg (which i think isn't really a high dose is it?)

The nurse who came up from the hospital gave me an "Epilepsy record" folder... perhaps i should reeeeeeealllly start filling that in!​

 

[Nakamova]

200mg/day is on the low side for Lamotrigine (although it's my current dosage). There is no set therapeutic range for Lamotrigine -- so what works for one person won't necessarily work for someone else. It does sound as though your dosage isn't working for you, whether it's too high or too low. The episodes you describe sound like partial seizures. It's definitely worth keeping a journal and recording any seizure-like events and/or possible med side-effects so you can let your doctor know what's going on.

 

[skillefer]

Might be a good idea...

 

[RobinN]

Rebecca was on the low side on many of her meds, and the side effects were completely unacceptable. I would say the memory issues would be unacceptable to me. I certainly would not tolerate that. It is obviously due to the medication since you have never had this before.

I would suggest trying some alternatives, before the ride on the med-go-round

 

[Loopy Lou]

I'm still waiting for the results of the EEG, which should be due..... Oh, about a month ago. I think i'll most likely be seeing the neurologist then, so i'll have to bring it up.

Sometimes i wonder if it would just be easier to put up with the absences and stuff rather than take medication (Although i realise the meds are probably to stop another grand mal from happening)

Everything else i described, apart from the conversation avec moi has been happening as long as i can remember, it's just that it seems to be a lot more lately.

 

[RobinN]

So sorry that you have to wait so long for someone to read the EEG report. Seems that it should only be days, since it is an automatic printout.

I personally made the decision to stop the meds, and deal with the tonic clonic seizures. I had faith that I was going to bring them under control, and they were only happening after the meds were dropped about once a month. Now they are only once every two months, and getting better each month. It allowed me to consider nutritional support, and neurofeedback with any other conflicting chemicals in her system. I am extremely happy that I made this decision, even though others didn't think it was the appropriate choice at the time. They have now changed their minds.

While taking medication, my daughters life was falling apart. It was heart breaking. Now she is able to lead a life that she choses.

 

[Dutch mom]

Hello Loopy Loo,

Lamictal sure made things worse for my son, who has the Lennox Gastaut syndrome. He has used Lamcital in combination with valporate and clobazam. As we increased the dose, his seizures increased significantly. And they did change; on Lamical we saw the first tonic-clonics occur.
It seems Lamictal OR decreases OR increases seizures in children with maligne childhood epilepsy syndromes. Neurologists in Holland are very alert on seizure increasment and when this happens, Lamictal is weaned of as fast as possible.

 

[Loopy Lou]

Robin - i think that maybe most people would be scared to try that in case it makes things worse. Did you lower the dose of her meds slowly, or just stop them?

It must be hard work for you and her to stick to this diet.

 

[RobinN]

I started making the nutritional changes first, with the support of Dogtor J. His encouragement at that time was priceless. I lowered the medication slower than what the neurologist suggested. It certainly was not without question. There were often times that I wondered if what I was doing was right. I would read books on the subject such as Epilepsy: A New Approach. It gave me the strength to follow my instincts. Many people asked why she wasn't on medication. I stood my ground and simply said they did not work. I know now those meds made it worse. I can see that as I look back over the records. At the time, it wasn't clear yet, because the seizures were still close to each other. Yet over time I was seeing longer and longer periods between the seizures. When one hit, I was back to square one, and tried to make sense of what was out of balance. That then led me in the direction of the blood sugar. It seems to also have through a wrench in her endochrine system, and her adrenals are also stressed.

The only reason it is hard to "stick" to this is all the bad habits and customs that we have grown up with. Family recipes are hard to let go of, as is the way we put food on our plate. Thinking that we have to have a sandwich for lunch... these are what make it hard. I am slowly learning, and learning ways to balance the foods. They are most of the time real foods. Not ones that come in boxes, or plastic containers. We are not designed to eat the way we have grown accustomed to. When I changed my mindset it made it a lot easier to look at a "treat or snack" and see it as a dangerous product instead.

Quality of life is what is important to me. My daughter had a reduction in the quality of life when on meds., and reading story after story of the dangers to the system over time, I knew that it was right for me at her tender age of 15, to improve her health not to destroy it.

 

[eslucas]

Hi Robin N,
You're incredible! Your daughter is very lucky to have such a loving, devoted mother!
I applaud you for taking a stand and seeking an alternative approach to treating the seizures. I've thought of going off meds and focusing on my diet aswell. I really believe the side effects of the meds (insomnia, memory loss ) are just adding to the problem espcecially when I'm still having seizures. My heart tells me to stop the meds and focus on my diet too. My only hurdle?
The idea worries my husband immensley and I don't want to stress him out. What to do? On the one hand I want to experiment, on the other hand I want to do what's right for us.

 

[skillefer]

Hi eslucas! You could try incorporating the dietary/vitamin changes slowly first as a complimentary, and then after a bit, if there is a stop to the seizures, ask the neuro if you can lower your dosages...just a thought...

 

[Loopy Lou]

Going to make an appointment to see my doctor tomorrow. Apart from the meds, there's a couple of other things i need to see him about anyway. Plus it's been nearly 3 months since i had my EEG, and i'm getting extremely impatient!

Robin - I'm so glad that's working for you and your daughter! It must be hard to cut everyday foods out.

 

[Meetz1064]

I too

am on Lamictal, and I don't know what to think..........part of the tip of my tongue feels numb, and so does my chin... and now part of my scalp is beginning to feel that way. This is NUTS.......... Do you have the same problems, or am I just weird? I don't remember having these problems before, but it's been so long ago........

 

[Loopy Lou]

I have noticed my hair falling out a bit, but i think thats mainly through stress rather than the meds. I don't get tingling or anything though.

Anyhoo went to the doctor's and he said to come back in a month or ring him if i'm still not any better.

EEG results STILL not back onder:​

 

[Junebug]

Did you go from the Brand name Lamictal to the generic by chance?
When the generic came out last summer I switched over to save $ ended up in the ER with 5 staples in my head when I hit my head on an oak coffee table from a tonic clonic. My tonic-clonic seizures got 10 times worse (from once a month to 10 - 12 a month,) in a matter of a couple months and I got headaches 24/7 non stop.

In November when I talked to my neuro. he said that if my seizures got worse like that and to go back on the brand. After a month I only had one tonic clonic a month and no headaches 24/7.

 

[Loopy Lou]

Isn't it the same stuff? It just says "Lamotrigene" on the packet, and they're yellow, about 1cm wide with a line down the middle of them.

Rang up doctor's today by the way, and was told that they couldn't give me the EEG results over the phone and i need to make an appointment with the doctor. But hey at least they FINALLY got this far!

I know they can give "normal" results over the phone, so feeling really quite worried

 

[skillefer]

Don't be worried....mine always come back normal, but they won't give the result over the phone... Instead, they remind me at my appt that a normal EEG doesn't mean that I don't have E. *shrug* Only had it for over 30 years...you'd think I'd know that by now...

 

[Loopy Lou]

they remind me at my appt that a normal EEG doesn't mean that I don't have E.

Bugger, i was hoping they'd tell me i don't have it.

Yeah, i know it's pretty unlikely, but hey, a girl can have hope.

Sorry, feeling a little grumpy todayonder: