How high of a dose of Tegretol are You on?

Just curious, how high of a dose anyone has taken of Tegretol ? Also wondering how you function at higher doses?
I have managed to maintain for last 2 yrs at 800mg ( slow release) but the last 6 weeks my TN has been out of control!
With Neuro’s advice on how to increase, I am now up to 1600mg, I thought I had brain fog before ? Ugh!
In any event I am still having some major break through pain, Neuro said I can go up to 1800mg before we start thinking about adding another med to the mix…
I’m exhausted, as I’m sure most of you can relate, when our bodies are fighting pain, it’s so tiring .and I’m dealing with insomnia tonight…I’m just a little frustrated.
Grateful for anyone wanting to share…

I have taken 1500mg before and I felt absolutely like death warmed up! Also it makes me very sleepy, hi-lighting the difference between members.I hope for relief for you soon.

I can only been able to take400 mg I know low but my blood lest show if I go up any higher on that dose my liver counts go up I’m now on 1200mg of gabapentin and 74 mg of ambatrialyn I feel like the walking dead on good days lol I hope maybe the doc
Will add maybes different med to help balence you out

Oh Jackie, it makes me sleepy too, just at the wrong time, mid afternoon or early evening…I feel like a zombie most days. 800 mg really was my magic number for so long, I guess my secret hope is that I’ll stabilize and be able to cut back.
Andrea, I guess every med makes us feel horrid, it’s the lesser of two evils, pain or being a zombie!

Thanks for replying ladies…

I have been on as high a dose as 1200mg tegretol daily. 1200mg puts me in a big fog. Awful for me. Now on 700mg with the addition of some baclofen and indocin. Better, but still painful. MVD to hopefully fix the problem scheduled for July. I can't wait.

One thing's for sure these meds are highly subjective and individualized in their effect.

Good luck to you.

You’re right Rick, these meds effect us all uniquely. Good luck with your upcoming MVD, side question, have your doctors seen a compression on your mris? Or are they hoping to see it when they go in? I’ve never really thought too much about MVD until recently…(( hugs))

My neurosurgeon( Dr Eskandar @ MA General Hospital in Boston) sees the compression on the thin slice MRI. He showed it to me and while I obviously dont know exactly what I am looking at he pointed out how one side of the trigeminal nerve is "all alone" and the other side has a large artery next to it. I could see it plainly. His quote was "it doesnt get much clearer than this". So thats reason enough to give it a shot and who knows what he'll find when he gets in there. I am very optimistic and pretty nervous too. lol

Best to you.

I take 600 mg Trileptol daily and up to 500mg Tegretol as needed along with this. Since the Trilep 'becomes' Teg in our bodies, just more slowly, I guess it is the same - so I take between 600 and 1100 mg daily - depending on the day and the flareup's. Yep, zombie when I have to take the max, but it is DEFINITELY not so much or at all when I take the lower dosages. Trilep was a huge game changer for me; but have had more breakthrough's here lately. afraid to have to increase soon...

Had MVD on the 21st...before that was on 1500 mg Tegratol and 1800 mg of neurontin (can't spell it) very tired all the time.

Doc wants me to stay on the same medication for a few weeks then slowly wean off after I see him. I had pain with all that! My pain is gone!!!!

So happy for you Bob!!! I hope this is a new pain free beginning for you!!

Cris, yup I can totally relate, hope you don’t have to increase!