TN Do you think my dosage is too low?

Hi Jason,

If you're still in pain you can request an increase in dosage. But I found that when I was on Tegretol my Dr increased my dosage without any problems. Although I would suggest to give it a week by then you should have noticed a difference.

Gloriana

 

Thanks Glorianna,

I had a bad night of pain, I seem to wake up every night at 2:00am and that's when the pain is most intense, and do t really get a proper sleep after that!

Hi Jason,

sorry to hear you had a rough night. I used to be like that when the pain would actually wake me up.

I think you'll find your dosage needs to be increased. Ask your Dr to prescribe you 200mg twice a day and see how you get on. As everyone's different you may be fine with 400mg or like others you may have to increase further. But as you are in your early days it's hard to see what will happen yet. At least you'll probably have a good nights sleep.

Gloriana

 

Thanks Gloriana, I am going to give it a few more nights to see how it goes as I only started medication last Monday, so will give an update over the next few days of the sleeping/pain news!

Again, thank you for your kind comments, it helps a lot!

You're welcome Jason and that's what we are all here for. Speak to you again soon.  Take care.

Gloriana

Hi Valkyrie,

Yes that's what I was told. Yet today when my Dr called me I requested an increase and he put me up to 150mg twice a day. 100mg is a big jump from 25mg a day.

I had no Robles with Tegretol all the time I was taking it on and off for 20yrs. Then after a 6yr gap when my TN returned I was automatically prescribed Tegretol and straight away I had side effects. My Dr said as you get older it doesn't work as well in the blood stream.

Thats a lot of medication your in Valkyrie. How do you feel?

Gloriana

Well, that is partly the problem Gloriana, each time my Tegretol is increased by the doctor, within a couple of months i get used to it and the pain returns and i have to move up again. Doc not happy with that and added Lyrica which for me did nothing but make me dizzy. Hence i have now been offered MVD op which i have accepted. i am releived and scared all at once.

Hi Valkyrie

What was the highest dose you had of Tegretol?

Well at least you know you've tried the different drugs and as nothing is working for you then good luck with the operation. I'll be thinking of you and do come back and let us know how you get on.

Good luck.

Gloriana

My Dr has never said to do a liver test that I recall unless it was included with all the other tests I had done. I'm going to find out and if not I'll request the liver test. It's amazing how we have to request things ourselves these days.

Gloriana

Just had an appointment with my surgeon yesterday so i asked him about the liver thing. He said that they mainly do this test if you already have liver problems. Perhaps ask your doc if he thinks it necessary in your case. Symptoms of low sodium in the blood can be headache, tiredness, and other things you generally associate with Tegretol. Quiz your doc a bit and get the latest info as mine could be out of date.

highest dose of Tegretol was 800mg which my doc is not keen to exceed because I am also on Warfarin and they do not go well together. In relation to the operation, my Cardiologist has thrown a spanner in the works as he says any reduction in the Warfarin to the level needed for brain surgery can be fatal as i have an artificial heart valve and the Neorosurgeon wants me off it for 3 days either side. They will be discussing it by phone on Monday...

Oh dear hope everything goes ok for you and it doesn't  turn out too serious enough for you to have to decline. I know there's usually only a percentage but it can still put people off wanting to have it done. But all the best Valyrie for whatever you decide.

Let us know how you get on.

Gloriana

My adult kids came over after they finished work yesterday and I told them what the Cardiologist said. They don't think its worth the risk of my going off the Warfarin when i havent tried Gamma Knife. I agree with them so i called the neurosurgeon and cancelled the op for now. Rang the hospital with the only Gamma Knife in Australia which is in Sydney. They want me to fly over for an appointment in about 2 weeks. Family meeting tonight I think.Thanks for your interest gloriana, it has been tense this week and your posts helped. Back on the merry-go-round for me. I sat on the bed this morning at 9am and fell asleep til noon. Lyrica.

Hi Valkyrie,

Im glad the ball is rolling for you even though slow. Hopefully your appointment in 2 weeks will proof positive, fingers crossed for you.

You're welcome that's what we're all here for. 

This is what I hate about this medication, I fell asleep in the afternoon after taking the increase in Lyrica the other day. How can we live to do our usual activities if we're drugged up to the eyeball. I try not to sit down for too long as that's when I start getting drowsy. For me I try to get things done of a morning whilst I feel active. 

The he best of Luck Valkyrie and let us know how you get on.

Gloriana