hi everone , i am writing again for my husband roy, he as had nearagal since nov 2011, he as been in severia pain on the top of head and forehead :( and he can only lay on his left handside when trying to sleep.. his medication as been upped by his gp 1200mg a day of carbamazephine release tablets ..codien and paracitamol..... he as had a mri. and also asked to see a nearalgist but his gp as said there is no point in refering you as there is no much they can do !!! can medication make this incredible pain go for a short lenth of time ,, can you be pain free ?? we dont no what eles to do please if any one as any advice please help thank you we are from england uk x x
Can you go on amazon.com and order the book "Striking Back" ? It is our "bible" here for hundreds of bits of info on meds, surgeries, natural helps
I have been pain free on the same med as your husband but I have type I
If type II -- harder to treat
You can go to this following part of the website here - and talk to others in your country for medical specifics in your healthcare system http://www.livingwithtn.org/group/unitedkingdommembers
My advice is to find a doctor willing to work with your husband on finding what med (s) and dosage will help him to have less pain and more ability to function.
I was pain free for 2 yrs on Tegretol slow release but unfortunately my TN worsened and I am now on higher dose trying to find the sweet spot of no pain again.
It’s so hard, I understand, it is most important to remember that your husband deserves to have as little pain as possible, so don’t give up! (( hugs ))
just reading the statement that your GP said not to see a neurologist bc yhete is not much they can do??? GET A NEW GP ASAP! you have to see a nuerologist for tjis! I have type 1 so its not as difficult as id but dont give up! keep doing your research! good luck! i ho
pe he gets help soon!
I have type 2 and I am nearly pain free…I will say it is a balancing act…finding the right med combo without severe side effects and learning just how far you can push yourself!! I take trileptal 1800mg/day, baclofen 40mg/day, cymbalta 60mg/day, and amytripyline 20mg/day…this is the best combo I have ever been on…the narcotics don’t work at all and just left me with a drugged feeling…I know my limitations though and don’t let myself get fatigued because when I am is when the pain comes…I never believed I could be this pain free on meds and am grateful for every painfree minute!!
Hi, I feel that your husband needs to look for another doctor willing to help him sincerely. Paracetamol is useless in treating TN. He needs medicines that soothe his nerves. Sometimes you can bring the pain down to manageble level and even painfree with the right med combo . There are so many kinds of medicines out there and with some luck you may land onto the right ones. It is a difficult journey , though. Currently I am on Lyrica and LamoTRIGne and it helps greatly. I wish your husband gets his relief soon.
Best wishes.
I agree, your husband needs to see a neurologist. I have ATN and have the crushing pain on the top of my head and across my forehead as well as the side of my face. I take amitryptaline 45mg and trileptal 450mg twice a day and I am certainly not pain free but the pain is at a level where I can go to work. It is trial and error before you find the right meds that will work for you. It can be a long and painful process but you must be patient and give the meda a chance to work. Tell him there is light at the end of the tunnel!
thank you all so for all your advice what you have given to my husband Roy... he now feels he is not on is own ,, this group as been a great support to him .. he is going back to his gp and telling him he wants to see a neurologist, if he gets no support he will be changing drs .. thank you all so much and we wish you all well :) x x x x
Hi,
I have had TN for 1 year, I tried to just deal with it, as I had taken
very little medicine in my life but it finally became so bad I was
crying and begging in ER for something to put me out. I was
put on gabapentin 3 time a day, also topimax one daily. The
electric shocks are better, the burning still there. I might be pain
free for a few seconds but start to talk or eat and wow here it comes.
So, no I really haven't been totally pain free, just thank God for the
seconds, minutes that there's no pain.
Be blessed,
Kacee
Lisa - glad to hear you are pain free...
but i'm curious (sorry for the question) isn't these 4 meds taken regualry are not TOO much ? i know people
have problems taking even one med at a time...
it's so hard this trial and error with meds.. so it wonders me how you found a combination of 4 meds that works..
as long as you are pain free !
and you are RIGHT - fatigue increases the pain ! good advice.
Lisa26 said:
I have type 2 and I am nearly pain free..I will say it is a balancing act..finding the right med combo without severe side effects and learning just how far you can push yourself!! I take trileptal 1800mg/day, baclofen 40mg/day, cymbalta 60mg/day, and amytripyline 20mg/day...this is the best combo I have ever been on..the narcotics don't work at all and just left me with a drugged feeling..I know my limitations though and don't let myself get fatigued because when I am is when the pain comes..I never believed I could be this pain free on meds and am grateful for every painfree minute!!
I was near pain free from TN pain on medication for years. But by standards I see here, I have a mild case of this. Just recently I am having issues that my meds won't cover. Inhaling cool air seems to irritate the Trigeminal Nerve. There is no one medicine that works for everyone.
For me its a combination of Neurontin, Indomethicin SR, Cymbalta and Celebrex. It is not generally advisable to take both Indomethicin and Celebrex as they are both risky for stomach bleeding. I actually take each of these for different issues. It wasn't until I was on all four that my symptoms were almost non-existant. The same with my Chronic Paroxysmal Hemicrania and peripheral neuropathy, it's sort of the cocktail that works for me. This combo did not however make me pain free from my Fibromyalgia or Osteoarthritis. That is still very tied to my activity.
I will pray for you and your husband in finding a solution. I do suggest that you find a neurologist. Sometimes due to more experience in this area, they will try different things that your primary care physician won't. Yes, in some cases the battle is not won, however you will see on this sight that some are finding relief either by medicine or proceedures.