Increasing lamotrigine dose

[Bottoc]

Hi I am new to posting on here , so a little background.

My husband had his first seizure in August 2019, out of the blue no family history and never been ill in his life. Looking back there had been a couple of “strange” episodes over the year but nothing that would suggest epilepsy.

He ended up in A&E because he smashed his face on the bedside table. He has only ever had full seizures whilst sleeping. All his tests came back negative. He was started on Keppra but the side effects were intolerable for him so changed to Lamictal. He takes 75mg twice a day and an antihistamine to combat the itching this causes. On this he has a seizure maybe once every 3-4 months but they are not always full blown. I keep a diary and have looked for triggers but cannot really find anything concrete, except maybe emotional stress.

Sorry for being long winded! My main question is (I have many lol) can we increase the dose of his meds without the consultants say so or do we ask him first? I wondered if we could up the nighttime dose to 100mg to see if this stops them altogether. Many thanks in advance.

ChristieB

[RR25]

Hiya. It's best to run it by his consultant first about the increase. You could ring his secretary and leave a message that way or if your husband has been given an Epilepsy Nurse, you could ring the nurse?

Hope this helps 😊

[Bottoc in reply to RR25]

Thanks he has a telephone consult at the end of this month will run it past the doc then xx

[Hidden]

100% check with Neurologist or his Epilepsy nurse, I started Keppra & then topped up with Lamotrigine, I now take 1500mg Keppra and 250mg Lamotrigine daily, I was outta the blue September 2018 🙄 stressful times!

[Bottoc in reply to Hidden]

It certainly is he is really struggling to come to terms with it and the fact that there is no physical reason for it blows his mind. Thanks for the reply stay safe and well

[Hidden in reply to Bottoc]

Went through same feelings too, Driving was my worst 😬 didn’t cope well with that at all, there’s also some great groups on Facebook if he has access, lots of support & experiences & friendships.

[Bottoc in reply to Hidden]

That was a massive thing for him too and he looked after our twin grandsons taking them and picking them up from school and that had to stop too bad time for him x

[Adlon57]

Do not go against medical advice from your consultant, ALWAYS ask your consultant! Stress and anxiety can be a major cause! I have Juvenile Myoclonic Epilepsy and certainly stress and anxiety are my major cause! I take it he does not have auras, before a seizure! Would your consultant be able to categorise your husbands type of epilepsy? Good luck👍

[PennyRed]

My husband is on Keppra and Lamotrogine. He had a discussion with his consultant before altering doses and was fully involved in the decision. He also has a lovely epilepsy nurse he can talk to. Always ask for advice. Best wishes to you both.

[Hidden]

I’ll be honest, neither Keppra or Lamictal kept my seizures at bay. I had horrible side effects with both. I have seizures in my sleep as well with negative test results other than the diagnosis of nocturnal epilepsy. There’s another drug called Fycompa that worked well on a low dose for me. It might not hurt to talk to his neurologist or physician about this drug as well. In my opinion Keppra and Lamictal are not effective and can cause bone loss long term so make sure to take magnesium or a calcium supplement. Everyone is different on how they respond to medication too so it’s about finding a balance of what works and what doesn’t. It was a lot of trial and error. The most effective treatment I use is cannabis and it was suggested by an ER doc who saw me admitted at least once a month for grand mal seizures. If it is legal in your area I would highly consider looking into that as well. You can also have him try CBD without the THC if that’s a concern.

[Adlon57 in reply to Hidden]

Epilepsy is very much a balancing game, lack of seizures, against lack of side effects! Having had the condition for over fifty years I MYSELF have gone through most of the field concerning medication for my specific type of epilepsy, Juvenile Myoclonic Epilepsy! Every person has their own specific thresholds with any medications. Keppra made me very dozy and slow, Lamictal [on its own made me have dramatic 'electric shock' type effects in the mode between conscious and unconsciousness] I was on it for a number of years with other medications, as you said affects my bones, especially my teeth , FYCOMPA is the worst medication I have ever taken for epilepsy, side effects of that did not wear off for three years after I had stopped taking it, EXTREME FATIGUE, I was on it for less than a year, from Dec 2016 [stopped Nov. 2017] to circa Jan 2020 I did not get a night's sleep! [I suddenly realised in 2020 I could sleep🤗🙃!] During all my time with epilepsy, none of the pills really stopped my particular regular amount of seizures, until April 2018 when I was prescribed Vimpat and Briviact, since then I have had one seizure in Dec. 2019, BUT there are many TYPES of epilepsy, with particular TYPES of medication to cover a particular type! EVERYONE is different! Unfortunately I have been told my body has reached it's threshold, as my next seizure will probably be my last🥴not really surprising after 400+ of the events!🙄

[Upsydaisy2005 in reply to Hidden]

hi

My daughter (14 yrs) also been started on Lamotrigine for nocturnal GTC seizures.

Had 3 lots and started on 25 mg Lamictal. Now having itchy skin, poor sleep, on and off blurred vision

[Mutley45]

Definitely speak to your epilepsy nurse or consultant. Don’t increase them yourself. I currently take 400mg of lamotrigine a day but this was increased very gradually Over a number of months. I understand how stressful it is. I’m having a nightmare getting my driving licence back at the moment due to a backlog at the DVLA 😔

[Fperkin23]

I am on a thousand milligrams of Keppra and four hundred of Lamictal. I would have seizures just being on Lamictal. What I recommend is getting plenty of rest, be stress free, follow a proper diet, and get plenty of exercise. My neurologist said that exercise is detrimental. Epileptics who exercise vigorously four to five times a week are less likely to have them than those who don’t. Keppra makes me burp real bad, and have had to change my diet for the better. I have always eaten real healthy. I have cut out cheat days. I have lost weight on it. I have been on it for about six months and have lost about ten pounds with intense exercise. My clothes are real loose.

Some people don’t do well with drugs. I like this one.

[Polly711]

i take a combination of keppra and lamictal i was on 200mg 200mg morning and nite on lamictal i have been on this med for over 10 yrs i had the worst side effects on lamictal my vision was badthe eye doctor was getting ready to do me eye surgery i was like no way so i came home did some research turns out lamictal was the culpriti tried asking my former doc to lower dose but i was always ignored had to taper on my own right now im at 150/150 and i am doing awesome my vision is much better

[Upsydaisy2005 in reply to Polly711]

hi

My 14 yr old with recent epilepsy diagnosis , started on 25 mg Lamictal. She gets blurred vision and often sent from home. I have not increased the dose as suggested due to this. It’s been nearly 2 months on 25 mg.. still gets on and off blurred vision and poor sleep, blocked nose, runny nose

[Polly711 in reply to Upsydaisy2005]

your baby is very young if she on 25mg leave her on it a little longer if her vision dont improve then i would take her off it with just my opinion how long has she been on 25mg

[Upsydaisy2005 in reply to Polly711]

she is 14 yrs old. Started on 7/9/22, initially every other day for 2 weeks( she was fine), then switched to daily Lamotrigine 25 mg. Immediately after daily dose , on Day 2, developed blurred vision which comes on and off, struggles to sleep and piriton helps. Night time severe itch all over, occurs every random day.

[PennyRed]

Hi Bottoc

My husband was diagnosed as having had a stroke after, as you say, having several strange episodes. He had his first seizure while in the Stroke Clinic at the local hospital. He is on Keppra and Lamictal. The dose he takes was decided on by mutual discussion with the assigned Epilepsy Nurse which I think is always the best way to do this.

[planetzed]

Hi Christie, if you go down this path I would definitely talk to your nurse. Titration with Lamotrigine is very slow at 5mg every two weeks to keep side effects at bay. I noticed some for a few days but these were tolerable.What was intolerable was the max dose I reached last year -massive loss of balance, increased seizures and general loss memory. Libido disappeared too!

I decided to remove all drugs from my system, titrating down using Sodium Valproate (half life) but once down to zero Lam. I felt so unwell I almost went to A&E! I contact my nurse who wasn't very pleased, and contacted my neuro.

Together we came up with a plan to titrate up to a lower dose Lamotrigine with the caveat that if it doesn't work, in would add an adjunctive drug....which is where I am now.

There are so many combinations out there it can be daunting but experiment, expect the worst and you will eventually get there.

Hope this helps!

Incidentaly 75 to 100 should take 10 weeks.