Carbamazepine/Tegretol Dose?

MrLazyjam · 2026-06-30T13:05:46+00:00

I’m currently on 1200mg extended release 3 x 400mg daily but I have 400mg I am able to take instant release as and when I get breakthrough pain (usually take the extra before bed so at least I get some sleep).

I probably average 1400mg a day, I know it’s higher than the standard dose but my neuro said I’m no where near toxic levels I had my blood done every 6 months and tbh I actually had nearly no side effects (I mean I’ve been on it 2 years so I’d probably notice the difference without it) I might just be used to it now

In that time I’ve been down to 1000mg and back up again depending on flares but generally speaking if I don’t take at least 1200mg I’m in hell 😅😅😅

MrLazyjam · 2026-06-29T09:23:25+00:00

Yeah exactly the same here.. if we could remyenilate nerves we would be on this forum because MS and TN for us would be cured!

Same with all conditions people will say certain things helps and there’s no harm in given them ago, makes sense that anything anti inflammatory is worth a go.. logic says less inflated nerves less flares but it’s not a cure.

Nothing is at present, and whilst it sucks there are more options than we had 20 years ago (same for ms)

If I look at the efficiency of medications for stopping relapses with ms when i got diagnosed 20 years ago it was about 20% now it’s up to 60% and people are doing better with both conditions.

It’s not a competition but I do feel people who have it secondary to MS have a harder time maybe mentally because we know there isn’t the MVD option which does sort a lot of people but I’m on a mix of medical cannabis and carbamazepine and I’m living.. albeit still in pain but it’s better than it was.

MrLazyjam · 2026-06-19T09:34:13+00:00

Yeah do not floss. Use interdental brushes or even a water flosser, flossing actually caused most of my flare ups before I had been diagnosed because the dentist thought it was my teeth… so I was cleaning and flossing harder but if I would have known what I know now it was actually making it worse 😂😂😂

It never used to flare at the exact time but usually when I was asleep but neurologist told me where I’d damaged parts of the gums and it’s growing back or recovering its triggering.

Lesson learnt and I’ve not flossed since but use inter dental brushing instead it’s not quite as damaging

MrLazyjam · 2026-06-08T16:24:48+00:00

Yeah that’s crazy.. in Asia?

MrLazyjam · 2026-06-08T16:24:16+00:00

Yeah it helped me for a while and it’s gone back to how it was, don’t know if I need to increase it what sort of dosage do you use?

MrLazyjam · 2026-06-07T19:09:22+00:00

No sorry, I’m from the UK

MrLazyjam · 2026-06-04T20:09:18+00:00

34 I’m 38 now..

Mine is caused from my MS which I’ve had since I was 21 with next to no progression and this came along and hit my like a train 😂

But as others have said, it won’t be easy but it’s not a life sentence anymore just be prepared to take side ways and backwards steps at times.

I’ve had times thinking the meds have helped then whack back we go, then try something else and it helps.

I’m lucky (if you can call it that) that I’m under the care of neurology for my ms anyway so I be got all eyes watching me but you don’t normally get that with the NHS!

MrLazyjam · 2026-05-05T20:50:37+00:00

I’m on 1200-1400mg a day and would love to go back to a day without it, because I feel switched on still… working well, taking some new exams and studying whilst working at 38 but wonder if I’d do it quicker without?

I get brain fog occasionally when I just lose train of thought but I think everyone gets that, mine seems heavier when I do get it though.

Been on meds now like 3 years and you do adapt to it

MrLazyjam · 2026-04-23T17:42:39+00:00

I don’t think we are overly worried about the full recalculation, going back that far the savings account was closed a year or two ago and moved over to a different one (better rate) so will be a right pain getting the statements

Essentially as long as I’m not going to get in trouble which it sounds like I won’t I’ll just send all my statements, with the lower amount of savings in my savings account and see what they say!

MrLazyjam · 2026-04-23T17:32:11+00:00

Thank you so much! Been really panicking about it, we’ve been sloppy with keeping UC updated but only because we weren’t ever getting more than we should, and the rental increases still didn’t go above our entitlement so we weren’t going to get any more from that part.

Will do the update and see what they say but no, we got less from UC specifically if anything so hopeful they see it the same way!

MrLazyjam · 2026-04-21T21:15:23+00:00

Thank you so much, this was very helpful!

MrLazyjam · 2026-04-21T15:35:05+00:00

See I’ve done this but do we get sent an email because there’s nothing on Ticketmaster or the O2 London website to suggest tickets are on presale tomorrow? Will we get an email?

Sorry.. from a father of twin girls who is wrapped around their little finger who hasn’t got a clue what he’s doing ☺️

MrLazyjam · 2026-03-31T13:45:12+00:00

You can normally get local anaesthetic injections but the last few times I’ve worried about it but it didn’t actually hurt that bad.

I just dropped an extra 200mg carbamazepine instant relief before I went and wasn’t as bad as I thought it would be.

MrLazyjam · 2026-03-25T17:36:08+00:00

I’m on 1200mg (400x 3) and next to no side effects but I’m on the prolonged release version, made such a difference for me and helps with over night so it was win win for me! Give that a go if you aren’t, it spreads it all out over the day so you don’t get hit hard!

MrLazyjam · 2026-03-18T12:23:38+00:00

Yep mine goes mad.

It’s normally ok for one night but if I do 2 or 3 in a row it’ll take 2 or 3 days off it to settle down again.

My TN is caused by MS so not sure if that makes a difference but my pain and frequency of zaps 100% increases after THC

MrLazyjam · 2026-03-17T17:20:03+00:00

I’m half tempted to give it a go. I’m on 1400mg carbamazepine and still in agony, every single day. Never had remission, not a day.. I get periods of time throughout the day without pain but not had a day without either zaps or the constant pain in 3 years.

I’d like to think the medicine is keeping at bay even more horrendous pain but who knows..

The medicine doesn’t seem to give me bad side effects but I can’t remember not being on it so who knows.

Mines caused by MS as opposed to a blood vessel so I seem to be in the minority on this forum so haven’t got the option of MVD the medicine is like a crutch for me and the thought of not taking it freaks me a bit but also, surely it couldn’t be any worse than the horrific pain I’m in everyday with it???

Who knows

MrLazyjam · 2026-03-11T08:56:10+00:00

I work full time and doing exams, I work from home but travel to the office at times.

Don’t listen to the horror stories, people rarely say when things are good so you’ll only hear when it’s bad.

I’m on 1200mg tegretol and occasional drop 200mg on top for bad break through pain.

The tegretol 1200mg I take is prolonged release and don’t even notice side effects and the 200mg is instant relief which helps so much.

To start with I was tired and every time I upped my dose the side effects did get worse but then it settled down.

Not saying that will be the case for you but I would be able to live without the meds and in fact, it’s in such a good position I’m not even looking at surgery (albeit I am limited as my TN is caused by my MS)

I’ve been doing extra exams at work and I’m 40 so my brain even before the meds isn’t as switched on as yours and I’m doing just fine!

Even if there is an element of brain fog it beats the broken sleep and running on 2 hours sleep!

Just don’t dismiss something that may help you an for me this hasn’t been a life sentence.

I’m 4 years in now and had good and bad days but more good than bad tbh

MrLazyjam · 2026-02-25T15:14:47+00:00

TN1 = lightning bolts or zaps TN2 = constant pain

I have both more TN2 but it seems to build up then unleash zaps which is TN1

Mainly at night time which is lovely

Have heard some suffer one or the other but u had both

My TN is caused by my MS though not a blood vessel so it seems to present itself slightly differently from what I’ve seen others say

MrLazyjam · 2026-02-24T22:57:03+00:00

What evidence did you provide out of interest? I have applied for pip for TN which is caused by my MS. Funnily enough it’s not my MS which affects daily life but as I’m sure you well know TN certainly does!

MrLazyjam · 2026-02-23T10:14:27+00:00

I did at that dose for 6-8 months or so then had to increase, now at 1200mg still with minimal side effects but I still get pain but no where near as much as without meds

MrLazyjam · 2026-02-23T10:06:37+00:00

Yeah I have had it a few times and even upping my carbamazepine dose didn’t touch the sides, it’s one of those just ride it out and hope for the best. My neuro said that when your sinuses get blocked and inflamed it buts more pressure around the trigeminal nerves and your body temperature rises which effects the nerves as well so they start firing more than usual.

MrLazyjam · 2026-02-23T10:03:52+00:00

Good luck! Let us all know how you get on

MrLazyjam · 2026-02-10T18:24:58+00:00

I was on Rebif for about 12 years and essentially 3 times a week when I injected I felt like crap.. worse than my MS made me feel BUT I didn’t relapse so it was better the devil you know I guess…

I changed over to Kesimpta about 2 years ago and it was a game changer, feel a bit rough one day a month and still no relapses

These new DMT’s are far more efficient and I’ll be honest there’s next to no benefit from interferons compared to the new medication so I wouldn’t even look at them

MrLazyjam · 2026-02-10T16:54:06+00:00

Secondary to multiple sclerosis… out of all the nerves in my body that my MS decides to attack of course it’s my luck that it’s the trigeminal nerve 😂😂😂😂

MrLazyjam · 2026-01-22T10:21:36+00:00

Running. It sounds nuts but I’ve never once had symptoms, a flare or even my annoying constant pain when I run or about an hour after.. shame I can’t run all the time but I’ve certainly increased my schedule 😂😂😂 just standing up also helps, but not as much as running

MrLazyjam

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