AIBU to think epilepsy is a knob and can just fuck off?

[Epilepsy]

After a few years of being relatively stable, my epilepsy has gone haywire recently. I can’t identify any especial triggers other than being late 40s and my cycles have become more irregular this year so I think that’s probably the culprit. Anyone else in a similar boat or would just like to vent?

I am relatively fortunate in that I only have nocturnal epilepsy so am allowed a driving licence and don’t have the of risk of drop injuries etc but the last few months (and especially the last few weeks) have been really hard. I have had so many plans I have had to reschedule or cancel completely in recent weeks - including having to cancel seeing an adult DD living away from home which was really disappointing for both of us, letting other DC down (again) on commitments we made, missing medical appointments, missing a weekend away, missing a tattoo appointment etc etc. My DC still at home and my DH are worried about me and I’m worried about them worrying about me! I absolutely hate feeling like a burden and I hate hate hate being reliant on others.

I am also sick of injuries, on top of other stuff, this week I have pulled my hamstring and fuck me, it hurts and I’m so frustrated to be laid up again. I’ve also bitten my mouth badly and it really hurt to eat the whole 125gm bag of peanut M and Ms I have just finished despite it hurting I currently take Lamotrigine, Keppra (which is why M and Ms are like crack to me) and Clobazam has just been added, I think this dose can be upped and my care team are really really good, but I am so fucking fed up with the uncertainty and worry and physical pain and constant constant disappointment and unreliability and the effect on my family not just me. (I’m also really hot right now and desperate for a shower but I can’t which isn’t helping)

So AIBU to think epilepsy is an twat and can fuck off, and would anyone else in similar circumstances like to have a vent?

I feel nervous about reducing my Lamotrigine dosage but at the same time, it’s not keeping my seizures under control so there seems little point in taking it. "

@MyTruthIsOut that's exactly the dilemma isn't it! We sound similar, I now take 250 lamotrigine and 1500 Keppra each morning and 20mg clobazam evening. I hear you about the short fuse - I think may also be due to my age and just not giving a fuck about so many things and so many people anymore I console myself that I'm setting a good example about assertiveness and boundaries to my female DCs.

I asked my epilepsy nurse about the brand/generic question and she said as the "active" ingredients were the same, it's things like the binding ingredients etc that are different and they could cause gastro issue type side effects but only a small category of AEDs. (Obviously she explained it much more clearly than that but it was reassuring).

I now take 250 lamotrigine and 1500 Keppra each morning and 20mg clobazam evening.

Sorry that wasn't too clear, I take dose of 250 lamotrigine and 1500 Keppra each morning and evening, and an extra 20mg Clobazam evening only.

So you’re on 500mg of Lamotrigine a day too?

My current Neuro was really unhappy about me being on 500mg which is why he wants to reduce it. He said he was “very concerned” by me being on that high a dose….

Sorry I just saw this!

Yes I was taking 250 in the morning, and 200 at night but when my seizures increased they upped it to 250 morning and evening. They also want to reduce the Clobazam as it's clearly not doing anything, but said they would do this after I've got used to the LM increase, as they don't like changing two meds at once as it's harder to monitor the individual effects- so completely different to what yours are saying!

Ugh I wish I didn't have to have upped my lamotrigine dosage as it makes me want to eat ALL THE TIME. I'm so hungry! (And tired)

I need to try and maintain a healthy weight for my joints so really need to be careful but it's so hard. Carrot sticks or popcorn or a square of dark chocolate or ice cubes or peanut butter on an apple slice etc etc etc and the other usual "healthy" suggestions just don't cut it - I just want to eat chocolate and sweets. And my fucking seizures are still going. I just want to eat and sleep.

Does else feel the same on lamotrigine?

When I was on Lamotrigine I lost loads of weight despite the fact I was eating so much. As I increased my dose the pounds would be dropping off me and my Consultant said it was just a coincidence but then a few weeks later I saw an article in a nursing magazine about how Lamotrigine is being trialled as a weight loss drug.

They had a test group and a placebo group and found that at a dose of 200mg, the test group began losing weight whereas the placebo one didn’t. It was really interesting.

That was about 20 years ago and I never followed it up to see what any final outcomes were.

I can eat and eat and eat and I don’t gain weight. It fascinates everyone how I can have the hugest portions, always polish off a 3 course meal in restaurants, and also eat insane amounts of chocolate and other unhealthy foods, yet I don’t gain weight.

This is one of my worries about coming off the lamotrigine…..that I’m just going to get huge 😂 I think I’m definitely going to have up modify my diet!!

That's interesting - can I ask if your metabolism was like that pre Lamotrigine?

I'm actually a normal weight atm which is surprising - I know I eat far too much shit unhealthy food. I'm only 5' and my mobility is poor so in theory I "need" very little calories to maintain - perhaps if I wasn't on the Lamotrigine I would be much bigger? (I've been much bigger in the past despite being able to exercise then). It's an interesting thought. I shall look into it, thank you.

My desire for sweet/pudding type food today feels like a pregnancy craving, it's so strong! (I am definitely not pregnant btw!) That feeling when it overtakes your head and you can't think of anything and are constantly longing. We have gigantic American style chocolate chip muffins downstairs - I've already had one and really really trying to stop myself having another!

I'm trying to decide whether the desire to eat 24/7 on lamotrigine js better or worse, than the desire to sleep 24/7 on Clobazam. Atm I seem to have the worst of both worlds!

What a pity party

I saw my neurologist yesterday for the second time after my hospitalisation in March and she is pretty confident that my low energy levels and tiredness is beciase of my Lamotrigine dosage (500mg a day) alongside my Keppra (1.5g a day).

Ive got to go back next week for a whole host of blood tests…..the full works….and if everything comes back ok then we are going to start reducing my Lamotrigine.

She said that if the Lamotrigine isn’t working at such a high dose then there’s really no point in me being on it and she doesn’t want to increase my Keppra unless I start having more seizures.

She said that in some seizure types, Lamotrigine can have very limited effect and that although it has worked very well for me in the past, the fact my seizure types have changed and the high dose of Lamotrigine isn’t doing anything to stop them, then it’s time to accept it isn’t working.

She’s initially only reducing it by 100mg a day (so down to 400mg a day) and if I remain okay then the plan is to reduce it further, maybe to even just 200mg a day.

She said I need to be aware for any absence type seizures and if that starts happening that’s when I can increase
my Keppra by another 500mg, so I will then be on 2g a day.

Im also having my Lamotrigine levels checked next week so make sure that because of the high dose I’m not actually at toxic levels which can actually make symptoms worse.

So hopefully in the next month, after all my
blood test results are back, the changes can be put in place to try and get things back under control 🤞

I think we sound in very similar situations! Your blood results will be interesting and hopefully really helpful to you to give you a plan of action? <fingers crossed> I just got mine back and they are relatively normal for me - I was amazed my iron levels were fine as the last time I felt so tired like this my iron was so low I ended up with a blood transfusion! So like you say it must be the meds causing the exhaustion And (swearing alert!) my meds aren't even fucking working, had a bad seizure this week and dislocated my knee. I have been having a right pity party, not only does it hurt A LOT, and I hate struggling around on two crutches - I missed a tattoo appointment I have been waiting ages for and was so excited about. It was kind of keeping me going as something to look forward to! And I feel like I can't rebook anything as I'm just not reliable enough (although the waiting lists for this artist are so long maybe I'll be stable by then!) I just can't make any plans at all atm, there's no point as i am so unreliable and I'm so fucking fed up, and causing my family loads of hassle too.

Oh that was a pity party and a half, sorry. I hope you are feeling better and you get good results back quickly,

A late update……

I had my Lamotrigine levels checked via a blood test back in July and it transpired that my blood concentration level was much high than it should be, and my team now thing that is the reasons behind my hospital admission in March (non-convulsive status epilepticus) and why I’ve started having jerks/tremors in my limbs and the occasional absence….both of which I’ve never suffered with before.

So the plan is to reduce my Lamotrigine dose to improve my epilepsy symptoms and to reduce the chance of me having any more seizures.

It sounds quite backwards really doesn’t it 😂

So I’m reducing my dose by 20% over the time frame of 4 months and I will begin this on Monday.

I’m very nervous but all we can do is stay positive x 🤞