Lamotrigine : Hi all I'm experiencing... - Epilepsy Research...

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Lamotrigine

Shelleybat profile image
10 Replies

Hi all

I'm experiencing what I think are side effects from Lamotrigine; I'm on a pretty low dose, 2 weeks on 25mg and last weds started taking 50mg. Yesterday and today, I've got what's best described as a "low pressure" headache. Paracetamol/Neurofen don't really seem to touch it and it's not affecting my sleep, but wondered if anyone else has had a similar experience? Should I wait longer to see if it goes away? It makes me feel pretty tired and don't fancy this on a daily basis!

Thanks

Shelley

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Shelleybat
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10 Replies
Shelleybat profile image
Shelleybat

Actually quick addition! More like a tension headache than low pressure !

Mordivor profile image
Mordivor

Hi, my son was on Lamotrigine for a long time, he was on 5mls twice a day, he was having headaches and tiredness, then the eventualy the tiredness got so bad he slept throw night and day, was off school for months, we didn't realise at first what was causing him to sleep so much, it was only when he came off the drug the tiredness stopped.

maya72 profile image
maya72 in reply toMordivor

It's takes time body to adjust .Side effects especially when you increase the dose makes you worried.Balanse is awful but as soon as body get used especially headache will be better from my experience .All the best

Shelleybat profile image
Shelleybat in reply tomaya72

Hi Maya

How funny, after I posted that.... late Friday evening the headache had gone!

Thanks for replying 👋🏻

Eirwyn profile image
Eirwyn in reply tomaya72

So glad you mentioned balance problems

Hi Shelley,

Just a quick note if it helps... I take Lamotrigine tablets 100mg twice a day for epilepsy and it’s a very good medication most people who take this drug don’t have long term issues with it and it’s widely used / I’d give it a bit longer and if you still have a problem just go back to your GP and try something else... hope you get things sorted. All the best, take care... Rich

Shelleybat profile image
Shelleybat

Hi Rich

My dose is low, 50mg a day but the headaches seem to have gone mostly! I've got a benign meningioma that's going to be evicted in January as that's the culprit!!

Thanks for responding, all very new to me!

MR75 profile image
MR75

Hi Shelley. I’ve been on Lamotrigine for about 12-15 months. I was eventually given a diagnosis of epilepsy after 9 months of tests and MRI’s. First drug was Zonisamide which seems to work really well and got My absence seizures under control. But then they started again. I spent 6 months coming down off Zonisamide and switching to Lamotrigine.

I’m currently taking 600mg per day in 300mg doses 12 hours apart. However, I’ve been suffering with ;

1.

Aggression

2.

Periods of emotion (crying) at the stupidest of things

3.

Bad memory

4.

Not being able to think of simple words, people's names etc...that is some cases I shy away from interacting with people.

5.

Horrendous ‘dry mouth’

6.

Hives and itching so bad I use a metal pasta spoon to scratch to try and get relief

7.

Tiredness and lack of enthusiasm.

8.

Bad skin resembling eczema. I have flakey scalp, crusty face making me fell very self-conscious when I go out anywhere

All of this has had a massive effect on me and my family and also my job. My annual work review was so bad that I didn’t get an ‘end of year’ bonus. I was told in a roundabout way that unless things improved, I’d need to think about my options.

I put up a other the side effects as I’m totally desperate to get my driving licence back so I can ‘escape’.

Chloe_B profile image
Chloe_B in reply toMR75

Hi MR75, I just saw your post.

I also take 600mg Lamictin with 150mg Topirimate for Temporal Lobe Epilepsy and mood disorder. I’ve been on Lamictin for about 7 years. I found the points you highlighted to be quite interesting. I’ve been living with a diagnosis for 9 years and some of the points ring epilepsy bells and some ring side effect bells from my early days of treatment.

I’m not sure what type of epilepsy you have but some of the points sound similar to what I experience with my Temporal Lobe Epilepsy (TLE).

1. Agression & 2. Periods of emotion: This is a common feature / “aura” / of TLE. It’s actually a seizure that causes a sudden unexplained emotion unrelated to the situation you are in (aggression, anxiety and heightened emotion being common).

3. Bad memory & 4. Not being able to think of a word: Again, this is very common to epilepsy in general. You can read more on it here -> google.com/url?client=inter...

5 & 6 & 7: This is probably a side effect of the meds and I would suggest discussing with your Doctor, especially the itching.

8. Bad skin: This is a reaction to the meds known as medication related acne. I also got this when I started my treatment. I would suggest speaking to a dermatologist and advising them of your current treatment plan. In the end I had to go on Roacutane, which was a hard knock to my body, but I was in my very early 20s and my appearance was important to my self esteem and felt that that was the best course for me.

I understand the impact that this has on job performance and ability to function on the day to day at your normal pace. I recently went through a bad patch due to stress which resulted in poor focus, lack of enthusiasm and inability to function as usual. This was also a hard knock on me as a person as I have also prided myself on my ability to push through and get the job done even when I was at my lowest and unmanaged with uncontrolled mood and seizures.

I hope all comes right. Just give it time and be patient with the process. I’m 9 years down the line and still making changes to dosages.

xx

rustypen31 profile image
rustypen31

I use six 25mg tablets per day. They make me a bit tired and also my balance is not too good.But keep going with them, you'll get used to them. Also, your headaches might be caused by thinking stressfully about them.

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