Hi everyone,my name is leeanne and i live in scotland,i have had TN for 5 years now,i am currently taking Indometacin,Amitriptyline and Tegretol. I have mostly had the pain in my head but 2 days ago i had the most awful pain in my face,i have had face pain b4 but this was like no pain i had ever experienced b4,i have just wanted to chat to other people who have got this condition. i dont think anyone actually realises how painful this is...i can try and explain to my friends and family but dont think they quite can comprehend how agonising it is. I have good spells which can last quite a while but when the pain comes back its like you kinda forget how painful it is and it affects you worse than b4.

I should have said how this all started...one day about 5 years ago i was just walking down the hall at home when i got the most outrageous pain in the left side of my head...it felt like an electric shock,thats the only way i could describe it. This kept happening over about 3 days when i thought to myself oh no i bet i have a tumour or something(when you have intense head pain you always think the worst) so i went to my doctors who thought it was something else at first as i was only 33. This pain kept happening every day,goodness knows how many times a day..too many to count....anyway eventually a doctor said i think i know what it is but its unusual in someone of your age...so i was started on tegretol to start with,that worked for a few months then pains came back,changed to amitriptyline...same story,then i was given gabapentin which did work for a good while,i was taking the maximum dose a day but i began to notice my memory was going so i asked the doctor if i could get something else....so anyway i said what i am now taking...ive had 2 MRI scans which showed neuro-vascular conflict.

Can i also ask has anyone else experienced very bad memory loss when taking high doses of gabapentin? I mean to the point of not recognising a good friend of yours or not remembering simple words like fork,knife,towel and if you have has your memory come back fully? I have been off the gabapentin for about 2 years now and im terrified im going to be like this forever...feel like a senile old woman at times!

Hi Leanne, I've been on a lot of meds and they all affected my memory to some degree. When I went off of them, my memory gradually returned to normal so I don't think yours should be permanent, of course if you are still having problems after being off the med for an extended period of time, you should speak to your doctor about it.

Has any of your doctors discussed having an MVD since your MRI's have shown a neuro/vascular conflict? Is this something that you would be interested in? A lot of people have had good results with them. I see you are still having remissions, which is great. I stopped having them about five to six years ago but I also have bilateral pain and its a mix of classic and atypical pain. Anyway, people are sometimes scarce around the weekend, so check back during the week for more responses. There are chat rooms here as well. I don't frequent them though. Take care and low pain wishes to you, EE

You might want to checkout the TNA Facial Pain Association at fpa-support.ning.com There are a number of excellent videos of talks by a number of neurosurgeons etc. on the topic of Trigeminal Neuralgia. TNA's older wesbite (they are migrating to fpa-support.ning) has an excellent Knowledge Base etc. www.fpa-support.org

Hello Leeanne . you are across the pond . maybe this link might help .
Trigeminal Neuralgia Association UK patient support
http://www.tna.org.uk/

I agree with EE03 you have been off meds for a while. 2 yrs did you say ?? long enough for it to be out of your system and your memory should have slowly rebounded to some extent. I would bring it up with your Doctor.
I would research and ask about MVD surgery. If your MRI shows a compression MVD might be something to look into and think about .MVD surgery helps plenty of people with T.N.find relief and get away from the pain.

Look up top of page here and go threw the stickies , there is lots of help and info on the useful websites thread, tips for new comers etc..
Sending low pain to you. hope you have a nice week and things get better with your memory . Let us know how you are doing and if you have ??s or need help or info just post . we are here and we'll try to help. Glad you found us
PEACE
BMW

Hi there Leeanne and everyone else

This is my first time posting anywhere about TN,
As the title says i feel yours and everyone's pain with TN

I diagnosed with Atypical TN nearly 2 years ago now, it all started one day when i came home, i bent down to kiss my dog and got this electric shock in the left side of my face, the pain itself is just right above my left lip under my nose where my crease is ( hope that explains OK) thought nothing of it just thought it was your everyday shock, Oh boy how wrong was i, over the period of that day i got it more and more, it came out of nowhere and makes me jump, i get the shock and all of my left side of my face goes numb, burns, tingles, you name it, it does it, it goes from the point of pain and spreads out to my jaw and top of my head. this happened for a few days when i brushed my teeth, drank, ate ( the usual suspects) so i looked on the Internet to see what this could be, TN was the first thing that came up, being in denial after reading it, i though this couldn't possibly be what i got.. Then one day the SHIZ hit the fan
I was washing dishes, it had gone off a few times, but then it kept going off and going it got to the point where one shock just finished another started, my husband came home and i was a mess, so we went to the hospital....As i walked through the doors and stood at the desk my shocks were like some kind of rapid throbbing motion ( only way i can explain it) then my face under my eye and at the side exploded ive never in my entire life even through child birth have i experienced pain like it, im screaming,shouting holding my face, people must have thought i was crazy..it just felt that the whole left side of my face had been blown off.

After this very traumatic experience i found myself a neurologist who had me do an MRI, they found a skull based tumor that is pushing another nerve onto the TN nerve (double whammy). i am taking 1,400mg of Tegretol (generic Epitol) a day, for such a high dosage i don't get many side effects, i do get twitching in my fingers since it was upped last time, I am also under a specialist for my tumor and hopefully soon something can be done, i can have the usual Tn procedures done, but my doctor wants to go in and suck that tumor out because of it position (at my brain stem) its costly and i don't have insurance I think i have slight memory loss, as sometimes when in conversation i go to say something and cant think of that bloody word lol but also i'm nearly 40 so that could just be old age.

Tegretol has been good for me, the pain comes and goes when it fancies, i have a couple of months without pain.. which is nice, you kind of forget but you don't if you know what i mean, then when it rears its ugly head i snap back to that day in the hospital...i hope it never gets that far again, just the emotional pressure and anxiety does me in.

When i get the shocks i try to move on with my every day to day doings, but your right Leeanne, people don't understand, my family have been very supportive ...i wouldn't wish this condition on my worse enemy, it's horrific, but we are not alone, this isn't our cross to bear, i try to stay as positive as possible ( as we all know is very hard)

Hope this post is not too long, I'm sure there is other bits of information i've missed, its been a lot to take in, deal with and come to accept the fact that its there, I'm doing what i can for the present to help with the pain and so on.

Hopefully one day we can ALL smile, drink, eat and brush without having to worry if our faces are going to explode

Thank You for reading my essay like i said there's things i've probably missed please feel free to ask.