TN

Brain and nerves
21

Paul...what geographic area do you live in?

22

Hello Karen

We are in Cambridgeshire.

23

England?

 

24

Hello Karen

Yes sorry Cambridgeshire England.

25

Then sorry I do not know much about England's health care except that it is two tiered...I live in Ontario Canada and winter in Florida, and because of past work and personal experience I have some knowledge of Canada's and  US systems.

26

paul and anyone else reading this my gabapentin was just upped to 2700 mg a day.  At 1800 I was still getting break through pain, some of it pretty bad and the pain was getting more constant.  I would like to know how much ...how high...other people's dosages are?

27

Hello Karen

I am still grateful of the advise and we can still put this to our doctors when we see them.

All the best Paul

28

Hello Karen

Our Daughter has been put on Carmazepine which for her seemed to take its time to take effect but seems to be working and she controls the pain quite effectively now along with Tramadol and Naproxen.  Sorry we cannot help but hope you get your pain under control soon.

All the very best to you Paul

29

Hi,

Are you taking anything else, such as Carbamazepine, to reduce the number and frequency of nerve impulses? If so you could check with your Neurologist or GP to see whether it can be increased. It may be possible to add another analgesic (pain killer).

Best wishes.

30

When diagnosed I started on carbamazepine and it took the pain away within 2 hours.  I was started on a low dose with instructions to increase the dose after a few days...I did not tolerate the increase so the doctor stopped the carbamazepine and put me on gabapentin which I taking right now.  This is the start of my third day on the 2700 a day and so far I am optimistic.  The break through pain is a 1 or 2 on a scale of of 1 to 10.  I have wondered too about adding a low dose of the carbamazepine.

31

Hi,

It would seem that a combination of pain killers for neuropathic pain, such as Amitriptyline or Gabapentin and their ilk and an anticonvulsant like Carbamazepine work best in dealing with TN. Personally I take 800mg Carbamazepine in divided doses 4 times a day on the dot (I set my alarm, best advice I've had!). I also take Amitriptyline 50mg at night with an extra 20mg in the day if needed. So far I have been really lucky in avoiding side effects, with the exception of sleepiness, but that's absolutely fine - I am happy to sleep!! After more than twenty years of lacking sleep 6 hours a night is luxury!

To be honest I would try the low dose of Carbamazepine, it will reduce the number of nerve impulses and then hopefully you could, in time, reduce your dose of Gabapentin. Finding the compromise is trial and error. 

Good luck.

32

Thank you so much.  Your reply is timely as I am just getting ready to go to the doctors.  I am currently on 2700 mg of gabapentin and still getting breakthrough pain....and I feel like I am have dementia...,I want my life back.

i will keep you posted...thanks again

33

Hi Paul, I've had TN for 10+ years now and have had a variety of medication combinations over the years and also MVD (which unfortunately didn't work for me).  You say you're in the Cambridge area - I'm in Suffolk and had my MVD surgery with Mr McFarlane at Addenbrookes.  He and his team are fantastic and I would recommend pushing for a referral to him if you can.  Although my op didn't work, I recoved very quickly and I was back at full time work as a PA within 8 weeks.  I'm currently on 2400mg of Gabapentin and 1200mg of Carbamazapene across the day, and this combination keeps the pain at a manageable enough level for me to work (just about!).  However, it does affect my vision (badly) and does impair me cognitively.  Hopefully at this early stage your daughter won't need such high dosages of medication to keep her pain at a manageable level, as it's a struggle to study when you're dosed up (I'm trying to do an OU degree and it's difficult to retain the information).  I wish you and your daughter all the best and will be sending positive thoughts across the ether.

34

I am looking at the MVD surgery and I am wondering why yours did not work...what year did you have it done in?  Thanks 

35

Hello Anna

thank you for your kind words and sorry to hear that your surgery was not successful for you. We will definitely enquire about Mr McFarlane at Addenbrookes hospital and hopefully we will be able to also get to see him. It is such a worry as she is just about to start her final year at Universtity to be a Nurse, bless her she believes that she has this awful condition so when she asks a patient what their pain level is then she will be able to understand where they are at as she has hands on understanding of the different pain levels. All the very best to you Paul