Hi I was very recently diagnosed with TN. The pain is constant and has been for over 10days. I can’t sleep. I was initially prescribed 10mg of Amitriptyline but that has been upped to 25mg. I have seen my GP and the emergency doctor at weekend, both have said its TN. I haven’t had a referral for a neurologist or MRI. So I am going back to my GP for this.
I can’t sleep for the pain, its all down my right side of my face. Head, around and behind my eye, cheekbone, cheek, inner ear, upper and lower jaw. As I say its constant but is made worse by certain things i.e, eating, kissing and sometimes just by smiling.
I’m taking paracetamol, iburofen and tramadol but its not even taking the edge off.
Does anyone have any suggestions?
Thanks in advance…
We have some US meds and ointments that you don’t have… And vice versa
Go up to groups tab
Join UK group
Ask them about topical meds you can get from GP
ASAP
; )
Thanku
Hey Tonii--
Sorry to hear you are not getting relief. Usually the first choice medicine is the antiseizure drug tegretol. You can ask your doctor to try that.
It is often used to diagnose tn because it works so well. It doesn't always keep working and you might have to keep increasing the dose, but it takes the pain away for a lot of people!!
Thanku i’ll remember that to tell my GP.
Hi Tonii,
I take Amitriptyline for my TN. It has worked very well for me. First of all 25mgs is a very low dose. I do not know anyone that has received relief from that. Also, this medication takes time to build up in your system.
When I started taking it I started at 10mgs and worked my way up to 40mgs. It took about 3 weeks for it to start working.
And everyone is different. It isn't effective for everyone. Like others' have said Tegretol seems to be a good starting drug. It works faster and is often times more effective.
Hi Tonii,
I started out on Tegretol with bad side effects and switched to Lyrica...went from 25mg up to 100mgs and it seems to be working better...I have several hours at a time with no pain and am sleeping better at night. I got off ibuprofen because it just does do anything and it's so bad for you in high doses like I was taking...I also use tramadol when it gets really bad...feel better soon!
Thankyou for your responses. My GP did say I mite need a higher dose but to see how I got om with the 25mg for now.
Im just struggling but its still new. I cant sleep because of the pain. Its making me snappy and argumentative. I work full time and have a stressful job and the constant pain and no sleep is making my job difficult.
My daughter is suffering and is too young to understand that mummy is in pain and simple things like kissing her and hugging her leave me crying if she touches that side of my face.
I understand some of you have had TN for years so I probably sound like a wimp after only having it for a short time. I really don’t know how you’ve all coped so long…
Tonii
Hi Tonii
I'm sorry to read about what you're going through, I've been where you are now. TN in my experience doesn't respond to paracetamol or ibuprofen. I've taken tramadol and tylenol together at night which helped me get to sleep but did nothing for the pain. I have type 2 TN (atypical) so have constant pain on the right side of my face. I'm very med sensitive so have little info to offer you there, but have you tried using a heating pad? I use one every evening and sometimes during the day too. Not much of a suggestion but I hope it helps a little ...
I stick to a soft food diet when things are bad. Lots of cottage cheese, yogurt, cooked veggies, pasta. I had to alter my diet completely to make life bearable. That has helped too.
I hope you find relief soon!
Wow!
I am saddened by your plight…I would try wardm compresses and continue with the prescribed meds until you contact a Dr for a sleep aid and a perhaps Tegrital XR . The hot/warm compresses help a lot