Gradual increase or 'hit' it hard??

Posted , 5 users are following.

I'd be grateful for your thoughts.  I have trigeminal neuralgia  on the left side of my face.  It did go away for 3 or 4 months but has come back now.  I am taking Tegredol, 300mg at night time and that's gradually increased from 100 to 200.  It now more or less keeps the pain under control but I still get annoying little sensations and twinges.  I'm wondering whether I should take more and get rid of the pain completely, or stick with this and only increase if it gets worse again. I'm thinking that maybe the 'excitement' in the nerve is resolved through a bigger dose and whether the gradual approach actually makes it worse.  What is your experience/thoughts?

Thanks

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16 Replies

  • Posted

    Hi Heather30609

    Take the advice af a GP to start.

    I am on 600Mg 3 times a day and it controls it most of the time. I was on 600 4 times a day for a while.

    If there are no side effects then my (READ 'MY') attitude is hit it hard and get relief. I see no reason (assuming there are no bad side effects) why I shouldn't have  full relief and minimum discomfort. The decision you make is up to you.

    All my dose sizes have been with the approval of my GP and monitored by him to be sure there are no nasty surprises.

    Sorry but that is the best suggestion I can make. Self medication is a quick way to cause more problems than solutions.

    If the GP is unwilling to go with you then change your GP and get one with a more progressive outlook on life.

    I think you will find the 'nerve' is being irritated / excited by another medium and until you can identify the cause, treating it yourself can be a real problem.

    Good Luck

     

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    • Posted

      Thanks for your reply - I should have said I have an appointment with my GP on Friday so I will of course discuss it with her but thought it would be helpful to have views from this forum first!
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    • Posted

      can i ask how you felt on that high dose and what you're on now and how is your pain please? i had a bad yesterday and doc said i could up my dose to 1400mg of Tegretol, it  settled and then i was woken up by what i can only describe as being punched in the face at 3am! im seriously getting fed up with this, mine just seems to goin from bad to worse.
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    • Posted

      Hi Fed-up

      I virtually started on a high dose. I had months of pain mainly headaches behind the left eye but also the facial pain from the shooting pains on the cheek and forehead.

      I use the ox carbamazipine ( I found the 'ox' version much easier to on the body) for the TN pain and also Lyrica (a VERY nasty drug but it works) for the headaches.

      I haven't had any side effects I am aware of and I am also on hemo infusions once every three weeks then two weeks of pills for a completely separate condition.

      Biggest issue I have is feeling drunk from the Lyrica. Stumbling and work recall problems and the like.

      Good luck and remember regardless of side effects, if you can manage them the alternative is usually worse

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    • Posted

      so, what type of Tn do you have? you say headaches and pains on cheek and forehead, only my neuro told me i had ATN  because  of the headaches.  im getting confused with all this and getting a second opinion, i don't get the headaches now.

      i was on oxcarb and got to the max dose in like 2 months and i bloated like a whale, i have not tried Lyrica or over here we call it Pregablin but i am on a high dose of Gabapentin 2700mg a day and just started Lamotrigine at 25mg. i don't know what tablets to try next!!

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    • Posted

      M lots started with a diagnosis of Bells Palsy.

      Later they decided it was just 'facial palsy'

      So whatever the 'real' answer is I can't help.

      if ATN covers whatever they can't identify then I have that as well.

      I am starting to have swelling in the feet so may have to change that as well.

      My symptoms seems to happen slowly so I will have time to work out the changes. The body seems to handle most things quite well and I am lucky there

      By the way my keyboard can't spell very well so excuse the bad spelling!

      The biggest problem with all of these diagnostics is most GP's are not really aware of of the problems, and very few specialists run across it very often either. They say it happens to 1 in 25000 or worse so anyone not aware of it really can't be blamed.

      I would have to look up the meds You are using to be aware of them and their uses. Sorry I can't be of more help. Maybe the practises/remedys here in the UK are different to yours.

       

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    • Posted

      no worries, my keyboard is just as bad, i spilt my coffee on my laptop and the a and w don't work on it so i had to buy a separate keboard and you have to bang the space bar so half the time my words are all one word without andy sapces!

      have you got pain all the time then? i had some pain all day yesterday and at 3am i was woken up by what felt light a punch in the face, i haven't had anything so far today (touch wood) so i went out on my bike and stood there in the shop waiting for it to happen, this really is my worst nightmare.

      have you tried medical Marijuana? im trying it now, my friend made  me some brownies and im praying it will work.

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    • Posted

      First the keyboard .. look on he net as You csn usually get a laptop keyboard for around $20 to $30 and thery aren't difficult to fit.

      My pain is constant and has been from the onset. If I stop the medication I start screaming again although I have been able to reduce some of it.

      They don't do ANY sort of Marijuana over here without a policeman attached in an angry mood. Totally illegal here.

      Just have to work through the medications available and find what works for you. Seeing Neuroligists has so far been a waste of time (for me) as well. They haven't been able to accurately diagnose/treat me and their guesses are getting further and further from the truth every time. The day they want to use surgery is the day I tell them where to go, suggest how to get there and if necessary draw a map for them as well.

      Good Luck

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  • Posted

    Sorry I took so long to get back to you and you have probably been to see your GP by now.   Hope you got some help and good advice. Not all GP's have a good knowledge of TN you can ask to be referred to a neurologist. What part of the country are you in.
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    • Posted

      Heather I am glad that you went to see your Dr. I am also in Cambridgeshire.  Do you go to Addenbrook's or Hinchingbrook.   I started at Hinchingbrook about 10 or 11 years ago.  Then  Prof Zac at The Eastman in London who referred me onto Mr Matharu at UCLH London where I am being looked after now.   Being nosey here but do you have any other neurological problems.    Have you read The book Striking Back,  it's very good.     Hope you have a good night pain free. 
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    • Posted

      Thanks Angie, I'm seeing my GP tomorrow - I don't seem to have any other neuro problems (fingers crossed!) but I do have a condition called lupus, that's why we did the MRI in case there was a connection but seem to be.  I went to QE at Kings Lynn.  I'll have a look at that book thanks.
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  • Posted

    Hi Heather30609,

    Sounds like my experience starting 2007. I've increased over time to now 4 x 200 mg daily. Even every 6 hours very important. Work with your neurologist to find your dose.

    eddie13

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