TN Do you think my dosage is too low?

Brain and nerves
1

Hi,

I know a lot of you are on different medications, but some of you are on the same as me, Pregabalin. I'm presently on 200mg a day.

What I don't understand is why I had to start off on 25mg, as according to my Dr the drug is strong and therefore the increase in dosage has to be given gradually. Yet I noticed that some of you started off on a higher dosage.

It's not the same as when I was on Tegretol I had no problems. But unfortunately they don't agree with me now. 

Ive requested a call back from my Dr as I'm noticing a small shooting electric type pain coming through again.

Can I just ask what dosages some of you are on please?

Thanks.

Best Regards

Gloriana

 

2

Hi,

Here in the UK I am on Carbamazepine which I think is called Tegretol in the U.S.? I am on one 200mg once per night, only in my fourth day so unsure when it is meant take effect.

Cheers

3

I am on 300mg but my doctor also said it was very important to go up incrementally 25mg per week.

I am also on 800mg Tegretol. Did the tegretol not suit you?

4

I was on tegretol for 7 years until I could no longer take it because it was negatively effecting my kidneys.  we tried several drugs, then I had MVD which successfully stopped the pain for 5 years.  I then had another MVD, but it was only effective for a year.  I am currently taking 450mg of Lyrica each day, but we are thniking taking it to 600mg because of recurring pain.

Every person is different in terms of dosage.  The lowest dosage you can take and effectively deal with the pain is the best.  Trigeminal Neuralgia (TN) is something you learn to live with. Over the years you may have dosage increases and/or changes in the type of drug you are taking. Hope this helps.

5

Morning Gloriana

Im on the maximum dose of Pregabalin, 600mg per day.  300mg am and 300 pm.  I think I started off at 50mgx2 daily for a couple of weeks and then gradually increased it.  Ive been on this drug for two years now as Tegretol put me in hospital on quite a low dose.  

The pain did level off at 600mg per day but the last couple of weeks it has got worse and Im now panicking as I cant up it any further.  Im not happy mixing drugs as they can damage the liver.  

I hope you doctor can help you as electric shocks (for me) are the worst!

Feel better soon.

Paula x

6

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

 

7

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

8

Hi Cary

Yes I've lived with TN for over twenty years and when it stopped for six years I thought that was it. Then it returned. I'm keeping my fingers crossed that I don't have to increase my dosage again. I'm always wary especially when taking other medication. It certainly can't do the Liver any good.

I hope you find a happy ending with your medication and dosage.

Gloriana

9

Hi Paula,

I didn't realise that 600mg was the highest you can take. 

Sorry to hear you're pain has got worse now. Hopefully they can give you a different drug rather than having to mix two lots.

I find the electric shocks are the worst. When I couldn't take Tegretol the Drs tried different drugs, I had side effects from all of them.

Now I'm finally on Pregabalin. But last year, at first, I was still in pain two months later whilst all these trials were going on and not relieving any pain whTsoever. Not nice at all.

At the moment I'm taking medication for a Hiatus Hernia, Vertigo, of which the Dr won't increase dosage, my Pregabalin and paracetamol for pain. Not good.

Gloriana

I'm seriously thinking of resorting to a Homeopathy remedies. 

10

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!

11

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.

12

apparently Tegretol leaches the salt out out of your system and its recommended that you have liver function tests but nobody tells you anything, they think you automatically know what they know. A person could drop dead because of the weight of the things doctors dont think to tell a patient. sigh..

 

13

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

 

14

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!

15

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

16

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

17

Hi Everyone.

My Dr phoned me back last night and said he can increase my dosage by .50mg twice a day. So now I'm on 150mg twice a day. I took the dose last night and this morning I could hardly get up. My whole body felt really heavy. This morning I felt like I wanted to crash out on the bed. I'm out at the moment and I feel like a drugged up zombie.

Then I realised I should've had an increase of 25mg first. I think shooting up to 50mg extra like that makes me feel like I'm going to O/D.

So I'm going to take 125mg tonight and see how I get on.

Glorian

18

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

Gloriana

19

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.

20

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...