Hiya as u can read in my title im only 22 and just been told after a couple of years suffering with the agonising pain i got told was migraines, cronic daily headaches, absess, mumps and depression that it is infact TN.
I have been given some tablets that beging with a c they are helping but i can still feel the pain when it happens i cant eat anything as it starts the pain i havnt eaten in 4 days im starving but just cant do it.
Im just so fed up and down about this and dont no how to handle the pain of thought of having this forever 
xx
God bless you. So sorry. Would the med you are on be called Carbamazepine? That is what I take. I am up to 1200mg a day now and so far it is keeping most of the pain at bay. Give it a few days to work. Try to drink things to keep full. When I was in bad pain, I ate ice cream, drank milk shakes or smoothies, ate yogurt, scrambled eggs, cottage cheese, etc.... so I would not starve. Let me know how you are doing! ((((((HUGS))))))))
Hiya yeah im drinking milk and smoothies but thru a straw, coz just opening my mouth and taking a drink is making it hurt yeah thats what it is its taken away the constant niggling headache but the shooting pain still comes im only on 400 a day and for 7 days is that normal? Xx
I’m only on 200g at the moment and apparently you increase it more and more gradually with the dr help until the pain subsides, your with friends here these people have been such a big help to me lately , I was only diagnosed a week ago and never been do scared xxx
Im pretty scared and very confused about what to do or were to go for help im only on them for 9 days and dreding seeing my doc again coz she is a complete wolly and doesnt help at all… I got my help at the second a n e (er) i went to, im very pleased iv forund this site though there is some lovely people on here all full of great info xx
I have seen about 4 doctors in a week ! One of them was so terrible it was scary. !! I was trying to explain how bad the pain gets and she replied 'I know what you mean like when you get a bad headache ’ that’s when I decided to go , she obviously had no idea !!! But also there are docs out there who try to help with pain meds etc you just have to find the right ones for you xxx
sorry to hear about your diagnosis i take nortriptyline 70 mg for my 24/7 pain ativan when im having anxiety and ice packs on the back of the right side of my neck when it gets unbearable biofreeze helps too. its a scary and lonely disease i refuse to lie to you there is hope for some. I hope u get relief soon! and if you ever need a friend i am here add me or message me anytime
When mine was bad, I drank thru a straw too since you can put the straw towards the back of your tongue and suck it that way. My doc told me that sometimes it takes 2-3 weeks to get good relief on the carbamazepine. I did fine on low dose at first-almost immediate relief. But I have had to increase 3 times since. This last time when I went up to 1200mg a day, we tried to do it in 2 doses a day, but I was drunk & sick all day so I came home, slept it off and decided to split it into 3 doses a day. I can function much better that way, even though I am exhausted all the time. You will probably get really forgetful and have trouble finding the right words for things sometimes. I feel like I have demetia sometimes, LOL! But it's better than hurting all the time I guess. Keep me posted on your progress hun!
ashley said:
Hiya yeah im drinking milk and smoothies but thru a straw, coz just opening my mouth and taking a drink is making it hurt :( yeah thats what it is its taken away the constant niggling headache but the shooting pain still comes im only on 400 a day and for 7 days is that normal? Xx
Go to a neurologist that has TN patients. :-)
ashley said:
Im pretty scared and very confused about what to do or were to go for help im only on them for 9 days and dreding seeing my doc again coz she is a complete wolly and doesnt help at all... I got my help at the second a n e (er) i went to, im very pleased iv forund this site though there is some lovely people on here all full of great info xx
Hi thank everyone for your words of advice and kindness i have an appointment with my doc today so hopefully she will refer me on to a neuro, and i can get this sorted.
I managed to eat a sandwhich last night i was in such pain but had to eat or i wud of passed out. Xx
Gemma, i no what you mean i live in a very kittle village so my doctor only really deals with virual infections or colds so i struggle getting her to understand xx
I think anything these days that isn’t a viral infection scares the dr’s !! Lol xxx
Haha yep well they have said today that thy agree and have prolonged my meds for a month, and is ment to be refering me to neuro so fingers crossed its going the right way iv had a bad day today though my head has been killing xx
Hi Ashley,
Well I am glad you finally got a diagnosis. I did not get one until I was 24 and suffered a long time before that. I am 28 now, and last year I had two MVD’s, one on the left than one on the right. Before you start any pain management read a lot about your meds. I didn’t at first and I took some crazy cocktails that made me a zombie!!! Well I hate to recommend tegtetol but it was the first medication that actually helped. It makes me forgetful and I hate that! I was a chemistry major in my last year when I had to drop out mainly cause I couldn’t remember the periodic table :0(. Well I would start with Tegretol, I know it totally sucks but you have to advocate for yourself or have a parent or family member with you. My parents don’t speak English so this has been super hard for me to speak to them but whatever I have done my best. I wish I could be there for you because when I got my diagnosis I broke down totally my whole world was changing and I had no clue. Stay strong you are not alone!!! Friend me its sort if nice to know another person around my age :0)
Marilina
Hi Ashley just wondering how your feeling now you’ve been on the meds a few days ? X
Hi Ashley,
sorry to hear you are having such a hard time. Sometimes it can take a while for the medication to kick in. There are so many medications you can try if you feel what your on isn't making a difference so hang in there. You might even be a good candidate for surgery and I have heard of people who have had years of remission so there is always some hope. I understand it's hard to accept that you have chronic pain at such a young age. I'm 26 and it was really tough for me when it started 2 months ago but I have come to find the best way to deal with it for now is to just live in the moment. Focus on how your doing and what your feeling right now dont think about the future because it can get so overwhelming and being depressed and stressed only makes it worse. I am on neurontin 800mg and anafranil 75mg and it has helped quite a bit. This website is such a wonderful place for support and guidance so you have come to the right place. Hope you find some relief soon.Hang in there! xx
Hi sorry iv bin quiet iv bin really bad with tn and not bin able to look at my phone to type to u… Im abit better today not in as much pain at all but its still there niggling away… Im hopin anutha week on these and il be fine… I tell you what im starvin and sick of drinkin through a straw! Lol thank you for all your kind words and support its really nice and so helpful 
xxx
What have they put you on Ashley ? Are you on anti convulsants yet ? Xxxx
Yeah they begin with a c and bin on them for 10 days ish so u wud think that they wud of started working now and i wudnt be getting this muh pain its so so so bad today xx