We are patients living with Trigeminal Neuralgia, here for your support.

liz 40, Female west yorkshire United Kingdom: Share on Facebook

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Chocolate Birthday Cake From Jo

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liz received a gift from Jo Mar 25, 2010

liz commented on Janis Wilton's blog post 'Facial Burning'

hi,i have just read your post with interest,i have had aytipical facial pain for 5yrs ,a couple of wks ago i started getting the electric shock type pains as well so my neuro said i also have tn,lucky me , anyway like u i have the constant pain,no…

Dec 31, 2009

liz replied to Beccy's discussion 'Is this really anything to go by? Getting desperate:'

hiya, i have just read your post and i feel the same ,i constantly feel ill,tired ,sometimes suicdal,but like i say to my gp when im in constant pain im not exactly going to run around laughing my head off,im on 1600mg tegretol,150mg amytriptiline…

Dec 5, 2009

liz left a comment for PK

hi, glad you had some rmission but sorry to hear its coming back.unfortunatly i dont get any remision,i havnt for 5yrs,tried all sorts of meds that dont work,still on tegretol but still in pain,ive just started having accupuncture but i dont no if…

Dec 1, 2009

PK left a comment for liz

Hey Liz, wondering how you are doing. I went into remission over the Summer, and have been getting more frequent pains and numbness over the past couple of weeks, so I think it's back. Since you have atypical, I'm wondering if you've…

Nov 30, 2009

PK and liz are now friends Nov 30, 2009

liz left a comment for Catherine Lewis

hi catherine, i too have atypical facial pain,its horrendous,ive had it constantly for 5yrs now with no remission,how long have u had it for,and does anything help with the pain? welcome to the group anyway,liz x

Nov 17, 2009

liz and elisa c smith are now friends Nov 6, 2009

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What treatments have you undergone (or will undergo)? With what success?: none,just meds

Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?): hi all,this is my story,got diagnosed 5 months ago even though ive had symptons 4 yrs,docs initially said i was too young for tn,they put me on carbenezapine ,1000mg daily at the max along with 150mg amytrypiline,but had to come off carbenezapine as i had terrible side effects,and 3 days after coming off them i got the most horrific pains down my left side of face it was so bad i couldnt sleep for 4days,i thought i had a brain tumour or something,i had to call the emmergency doc out who diagnosed tn,i went back to my normal docs the following day abd they put me on lyrica,am now up to 600mg which is the max dose,my pain is so severe in my left ear ,my jaw,teeth,tongue,neck and suffer terrible headaches,which ive had for years,ive also had severe pains in my legs,and sometimes all over my body,my arms also get stabbing pains in them and my right arm below the elbow going through my wrist and hands is very painfull like a numb,pis and needles type of pain and it swells up.so my doc has reffered me to a neurologist as she thinks all my other pains are connected,i have a 4yr old boy who is only at nursery p/t and my husband works 6 days a wk,i also work p/t on an evening,but im finding day to day life is a nightmare,i can barely function,the pain and the foggyness that comes with the meds,i have to leave little post it notes everywhere with reminders on ,as i would forget all i had to to each day,sometimes i forget that my son is at nursery .then i have to litery run to school with him,i dont drive thank god as there is noway i could get behind the wheel of a car,so anyway i just want to hear from other sufferers as im very low

Liz's Blog

neuro appointment

well guys,
ive finally had my neuro app and he has diagnosed atypical facial pain,and the meds i was on i have to wean off them then in 2 weeks i have to start tegretol retard,even though ive been on them befor and side affects were horrendous,so now because ive started weaning off my meds ive got the jitters ,the pain is unbearable.im having major anxiety attacks several times a day,cant stop crying ,
my neurologist was not very nice ,and i feel he just fobbed me off,am so depressed

Posted on March 11, 2009 at 4:51am — 4 Comments

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At 11:51am on March 25, 2010, Jo gave liz a gift…: Chocolate Birthday Cake
Happy Birthday Liz, hope you have a lovely day. Love and hugs, Jo X x
From the Gift Store

At 3:45pm on November 30, 2009, PK said…: Hey Liz, wondering how you are doing. I went into remission over the Summer, and have been getting more frequent pains and numbness over the past couple of weeks, so I think it's back. Since you have atypical, I'm wondering if you've had times of remissions and flare ups as well, and also wondering how the drug therapy is doing for you. Hope to hear that all is well.

At 12:39pm on October 20, 2009, Angelika said…: haye!oh,i feel the same.also,today was very windy,and i got big mistake walking daughter to the school not wearing hat,and now i got stiff neck.
have a good week.xx

At 4:07pm on October 16, 2009, Angelika said…: evening liz! how are you doing? any good news after you seeng your neurologist? or how do you get over that horrific pain last week? write me plese.i got very bad last week from friday night till tuesday.dont even know how days past away.gp prescribe me diazepam.still waiting appointment to see a specialist.
so let me know how are you doing please.lika xxx

At 3:20pm on October 8, 2009, Angelika said…: i am very sorry for you.i have a feel for you.wish you get well.does pain killers not help well? thats very upsetting.really is.right let us know how you doing in a while.lika

At 4:33am on October 5, 2009, Angelika said…: every day i get up and hope i wont get those horrendous pain in my head.and try to stay calm and positive.uh.....right,have to get going.god day xxx

At 4:30am on October 5, 2009, Angelika said…: hi liz! thank you for a very warm welcoming! i will have a look that forum you mention and will register with it.i am not very often on the net will try have a look today.have a great day.lika.

At 8:19pm on October 4, 2009, Diana Parker said…

At 1:26pm on October 2, 2009, Loretta Durbin said…: Hey Liz. I too suffer from this ear pain that is so excrucitating I am at the verge of screaming all the time. No medicines seem to work for me. My doctor just put me on a new med for chronic pain and Chronic Fatigue called Savella. I hope that it will work.

At 5:17am on September 30, 2009, Angelika said…: Hi Liz! My name is Angelika,i am from England too,cos here lots of people from USA and they got most different treatments and medications,well,i am not read loads yet,cos i just sign up 40 minutes ago.And i hope to find support here cos my partnes horrible he dont understand what sort of pain i suffer and i got two kids to look after.and those pains attacks after they struck left me anxious and crying all the time and i really very very upset.my GP is a horrible man,and i am looking forward to get good specialist of TN.
so,if you dont mind plese be in contact with me we can talk through this time and help to each other.
have a good day,Lika.(that my name for short)