carbamazepine- brain tumour

[GGourmet]

hello everyone. I do not have epilepsy.

I’m hoping this community can give me some insight into Carbamazepine.

I have a brain tumour that is pressing on the Trigeminal Nerve causing Trigeminal Neuralgia. This is pain from the Ophthalmic branch.

I was started on the Carbamazepine in mid December with 500mg/day sufficient to control the vast majority of neuralgia attacks.

In mid February, knowing that my ability to work was being curtailed, I shifted to client meetings only between 10:30 and 14:30.

Today, I started at 11 and couldn’t go beyond 13:30.

I’ve just started (today, pm) Prochlorperazine for nausea.

I have a few other medical issues but putting those aside, can anyone let me know, from their experience, how this might play out?

I’m hoping you can gives me a heads up on whether the mental exhaustion eases over time or not.

I’m resigned to having to sell my business, as it has become impossible to mentally keep up with all my legal duties, without severe exhaustion.

Many thanks

[wxy123]

I cannot help you with information re the drugs but suggest getting in touch with your local Headway group. They have been very helpful with brain tumour side effects. Good luck with finding the help you need.

[GGourmet in reply to wxy123]

I will try but often so difficult to get a reply.

[GGourmet in reply to wxy123]

Headway were helpful and this mostly confirmed what I was expecting however, the nurses there didn’t recommend going back to my consultant to see if he could change the prescription by adding Pregabalin perhaps being able to reduce the Carbamazepine.

I had Pregabalin in 2020, at the start of Covid. I was one of the first to get Covid, developed non typical Shingles and had Pregabalin for that with no side effects.

[Mybraveface]

Hi GGourmet, In 1989, after surgery on my right temporal lobe my epilepsy started - with nocturnal seizures (2 to 3 times a week), and occasional 'absence seizures'. It took a year or two to get the right dose of carbamazepine, as I experienced feelings of being 'drunk', double vision, lethargy etc. Once on a 'correct' dose (blood level 10) I was fine with carbamazepine for control of my absence seizures - although skin hives, and low vitamin D levels required loratadine and cholecalciferol respectively, I could accept the compromise. [It didn't control the nocturnal seizures, but in 1999 I found clobazam (a 'benzo') - the only medication to stop them].However, after about 15 years carbamazepine treatment, I started getting further side-effects; high SHBG- requiring testosterone injections, in 2022 I had a couple of absences, blood tests showed my hematocrit levels were a concern, plus last year cholesterol level too high. GP wanted me to start statin meds. I asked GP if changing the root cause may be better than keep chasing the ever increasing side-effects of the now 'old' (though I must say effective) carbamazepine. Neurologists suggested Levitiracetam which didn't suit (due to various issues), and since January 2024 I've been adjusting to Briviact as replacement for carbamazepine (along with clobazam), and early signs are looking good. 🤞 Carbamazepine once stabilised was good for 30+ years, but increasing side-effects were my problem with it. Apologies for the long-winded response, but hope you found it useful! Good luck my friend! Paul 🧡 .

[GGourmet in reply to Mybraveface]

That is really valuable and thank you so much.

I’m advised that, if lucky, the tumour will gradually reduce at 2 years and I may be able to stop medication. Even so, the timescale is too long to save the business from sale.

The cholesterol is an interesting adjunct, as I have a cholesterol problem but my liver is statin intolerant.

Many thanks again.

[Mybraveface]

I'm really pleased you found that of use, but very sorry to hear that you're going to lose your business 😢. It can certainly be a tough journey, but I believe from adversity comes strength 💪. We learn to fight stronger and harder with each battle.

At 29, I was told (while on the way to the operating theatre) that they couldn't guarantee the outcome of my craniotomy - but even after a second surgery in 2005, here I am at 63, hoping to get back to driving, socialising, swimming, playing badminton, horseriding etc once the new meds regime is settled !

I never thought I would see 30yrs, never mind 60+ !

I know just how fortunate I have been, and very much appreciate what I have!

We never know what life has in store for us, but a positive mindset does help .... try to keep strong, and be ready for the next challenge ! 😉 Paul 👍

[Mybraveface]

As an update, after viewing the video which I recently posted as a MUST SEE VIDEO FOR ANYONE WHO IS RECEIVING MEDICAL TREATMENT FOR EPILEPSY, I asked my neurology consultant to take me off Brivaracetam, having realised it is not a sodium channel blocker like carbamazepine. I am now on lacosamide (a modern Sodium channel blocker) and feel like myself again at last.

youtu.be/rWSkwNfG2bc(Not working as expected?)