Gradual increase or 'hit' it hard??

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!

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.

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

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!!

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.

 

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.

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

Thanks Angie, I'm in Cambridgeshire.  Have been to a neurologist and had MRI scan - nothing to report.  I'm happy with GP support for now, I just want to take a bit of control myself if that's possible!

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. 

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.

sorry, that should read 'doesn't seem to be'

oh! im in Cambridgeshire, i've been told neuos don't know anything and its the pain clinic you should be dealing with, me, im asking for a second opinion.

Thanks Eddie