Side effect of Lamotrigine: Has anyone... - Epilepsy Action

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Side effect of Lamotrigine

Howdenhall profile image
26 Replies

Has anyone experienced side effects from Lamotrigine

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Howdenhall profile image
Howdenhall
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26 Replies
Howdenhall profile image
Howdenhall

I should have added that I experience a very dry mouth and throat at night, and then I need to clear my throat during the day by gentle coughing. I also find that soft food can be difficult to swallow completely and need to drink water to help it. Does anyone else have this?

Deniseelk profile image
Deniseelk in reply toHowdenhall

Have you raised this with your GP? Has anyone considered Sjögren’s syndrome? A rheumatologist would need to be involved to carry out tests and you would need to be referred by your GP. Perhaps keep a diary of symptoms and maybe what you have been doing / eating to see if there is a pattern or more issues than you have initially noticed. My daughter has epilepsy and takes Lamotrigine but has also recently been diagnosed with Sjögren’s syndrome. It’s the dry eyes that bother her more than the dry mouth. Maybe take a look at Sjögrens.org for help on your dry mouth. Hope you get the support you need.

Howdenhall profile image
Howdenhall in reply toDeniseelk

Thank you so much for your suggestion - and wonder whether it is something like that. I have been taking Lamotrigine now for 9 years, after having 2 seizures one night. I had had many petit mals for about 20 years, without realising, having been told it was total global amnesia, and not to worry about it as there was no treatment for it. However Lamotrigine has been fine for me except this extreme mouth dryness at night. I asked the chemist about it, but I’m afraid didn’t really help. I didn’t like to bother the doctor, but think perhaps after reading your comments, it might be a good idea. I am however in my late seventies and possibly expect a degree of discomfort, but I do hope your daughter is going along alright. These diagnoses can be quite frightening. Thank you again for your kindness.

Deniseelk profile image
Deniseelk in reply toHowdenhall

I am glad this site has given you the confidence to approach your GP and seek some relief for your symptoms. Even if it is related to nothing more than “ one of those things we will likely all suffer at some point” it doesn’t mean there isn’t a product out there to help. Maybe have a look at the Sjögren’s community on this site as they may suggest an oral product to give relief until you get to see your GP. I am sorry to hear of your history of seizures but it does sound like Lamotrigine has kept them under control now. I hope you find relief soon.

Howdenhall profile image
Howdenhall in reply toDeniseelk

Thank you so much for the information about the Sjogren’s community - it is very helpful. Yes, thank you, my seizures are under control, and to be honest, if Lamotrigine works, a few side effects are nothing to worry about too much, and just put up with them. The GP suggested to drink a lot more water, and it certainly has helped.

.

lgd333 profile image
lgd333 in reply toHowdenhall

This does affect me too on 100 mg Lamictal.

valeriev profile image
valeriev

Nothing of what you said apply to me. For me, im just a bit more tired than usual and its worst when it close to take my dose but then i take the pills and im fine :)

Howdenhall profile image
Howdenhall in reply tovaleriev

Thank you so much for your reply - and am glad you are ok with the pills. I have been taking these for 9 years now, and although I am finding this dryness a bit uncomfortable, am so grateful for them.

valeriev profile image
valeriev in reply toHowdenhall

I am not in your position so i cant talk for you but the side effects from the pills have way less impacts than the ones from the seizures. I have bad moments too dont worry but sadly we have to deal with it. Good luck to you 💜

Howdenhall profile image
Howdenhall in reply tovaleriev

And to you too

EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Hi

I’m glad to see that you’ve from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups. We have our forum4e online community forum.epilepsy.org.uk/, and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

Dry mouth is one of the more common side-effects of lamotrigine bnf.nice.org.uk/drug/lamotrigine.html#sideEffects. If you haven’t already, it may be an idea to speak to your epilepsy specialist, epilepsy nurse of GP. They may be able to suggest something to help with this.

Finally, please feel free to contact our helpline team. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

Howdenhall profile image
Howdenhall in reply toEpilepsyAction1

Thank you so much for all this information I had no idea was available. I have never shared my thoughts on Epilepsy, and never met anyone with it. Lamotrigine controls it really well, and I seldom have any problems except from feeling very spaced out once in a while for a few days, when I have got very tired from not sleeping well as a result of a family worry. Other than this throat dryness and therefore actual thickness near my vocal chords, which I feel I need to clear, and which worries me a bit, I’m fine and so grateful for the medication. I am so lucky as I haven’t had any seizures since taking 75mgs Lamotrigine twice daily. Thank you for your kindness.

Teri2020 profile image
Teri2020

I’m day 8 into this medication after recently being diagnosed last month. I’ve not been able to sleep for the last couple of nights, and I’m only currently taking 1 tablet then slowly increasing. Do you think it’s worth contacting the neurologist now or waiting until I start my full dosage?

lgd333 profile image
lgd333 in reply toTeri2020

I've been on Lamictal for 6 months now. It is known to cause insomnia. Unfortunately I've had more side effects so will be changing medication soon.

Teri2020 profile image
Teri2020 in reply tolgd333

Have you felt angry and agitated since taking it too? Quite a lot is going on for me right now as I’ve recently stopped breastfeeding due to taking this new medication and I’m still taking the mini pill, which I don’t even know if that’s allowed? But I definitely don’t feel myself at all and that’s not in a good way.

lgd333 profile image
lgd333 in reply toTeri2020

Sorry for late response. Irritability is a major issue; one day I'm fine the next I'm angry. Tiredness, headaches, nausea, muscle and stomach pain are the other side effects.

Howdenhall profile image
Howdenhall in reply tolgd333

I too have insomnia sometimes, and also a very dry mouth at night. What are your other side effects, and what medication might you be changing to? Please don’t answer if you would rather not - I would fully understand. I feel so sorry for you, and hope things can be sorted out for you fairly soon.

lgd333 profile image
lgd333 in reply toHowdenhall

Sorry for late reply. Side effects from Lamictal have been tiredness, nausea, stomach pain/constipation, muscle pain, headaches and insomnia. I think new meds will be Topiramate but waiting for a letter from the Neuro.

Howdenhall profile image
Howdenhall in reply tolgd333

I really hope it will help you, as you are having a hard time. It’s bad enough having all the constraints of Covid 19, without feeling unwell. I find I must try and keep busy - but within your own limitations (and sometimes that’s not easy) - and not fall asleep in the evenings, so I have a better night’s sleep! Just hope you will be helped soon

Howdenhall profile image
Howdenhall in reply toTeri2020

I always think it is difficult starting a new medication, particularly if it is going to be for life, as perhaps yours is? I take 75mgs Lamotrigine in the morning and at night, and find it really doesn’t have too many side effects. I started on the full dose right at the beginning, and soon got used to it. Yes, I do find that sometimes it takes ages to get off to sleep - up to about 2 hours sometimes, but not sure whether that is the medication or not. I think if you are still like it after a week or so, if I were you, I would ring your neurologist if only to get peace of mind. However hope you start feeling better soon, and sleeping more easily.

Teri2020 profile image
Teri2020 in reply toHowdenhall

Thank you very much. It’s all new at the minute so I’m going to get up to the right dosage they’ve prescribed and take it from there. I’m glad it’s working well for you :)

Howdenhall profile image
Howdenhall in reply toHowdenhall

I should have said I too started with a low dose of Lamotrigine and gradually built up to 75mgs twice a day, over a couple of weeks.

lgd333 profile image
lgd333

Thank you. Will keep you updated on change and luck with new medication.

Howdenhall profile image
Howdenhall in reply tolgd333

Please do, and the sooner the better for you - good luck

lgd333 profile image
lgd333 in reply toHowdenhall

Thank you. Will do. Keep well.

c-mac profile image
c-mac

At one point my sister -in-law was prescribed fish oil tablets for her dry eyes caused by reynauld’s syndrome.

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