Trigeminal Neuralgia

Ive beed sufferering T N on and off since the early 80s most of the time its quite short lived just stabbing pain tingling in face ect.

But for the last 3 years its been increasingly getting worse with lots of face pain horrible shooting pains that feel like a red hot poker in just 1 tooth making me swear out loud much to people around me,s shock,its always been in ithe right hand side of my face BUT since befor christmas its been in the left side as well,mostly in my teeth, the dentist says theres nothing wrong with them,so i know its not them

.Last night i got no sleep as the pain was really bad, i managed to sleep 2hrs in my chair as i was in my back and not lying on my side. I feel like im going mad with the pain,my gp,s upped the pegablin but its not helped,anyone got any advice on this ?

I just hope that i get some sleep tonight ,i just dont know what else to do…

Any advice please.

Barbara.xx

Hi Barbara, You have my sympathy as a fellow sufferer. I take a combination of nuerontin , solphodol and Valium and even that is not S effective as it once was. You need to back to your GP the severity of tn is well documented, in some cases people need to go to hospital for I.v. Pain relief Good luck, Ann

Thanks Ann i slept in my recliner last night as it ment i wasnt on my side, not the best place to sleep but i got more than the night before, iv,e not heard of neurontin is it an anti inflamitory? im asthmatic and cant take them. tryed to get a gp app but failed have to try again on monday, not looking forward t a bad weekend.

Barbara.xx

Hi Barbara,

It took months to get the dosage right to help my TN. I worked with my GP and the pain clinic before we hit on tegretol and amytripteline (sp?) at a dosage that helped.

I used to keep a chart/diary so that the effects of each drug or change of dosage could be easily seen by my GP.

It got that I dreaded going to bed because as soon as I lay down the pain would begin. I used to go to bed propped up on a load of pillows. I think you might find that more comfortable than a chair.

Jane

PS neurotin is gabapentin.

Thanks for that jane had gabapentin before it made me very sick so was swapped for pegabalin,i will try to see gp on monday maybe the pain will settle down a bit over the weekend.

Well i can but hope.

Barbara.xx

Hi hun. They thought i had TN, and the pain was just horrible. I used to take diazepam which helped. I had really bad gum problems for years and my teeth were loosening quicker then that although my teeth were fine. Eventually i lost all my teeth a few years back, and strangely have not had TN since…go figure. Was it TN or something else.

No I get a clicking in my ear which is even more annoying lol.

anyway hun, TN is one of the worse pains i have ever had in my life. I think the reason why I dont have TN now is because my nerve endings are not inflammed from the gums as well perhaps I have no idea.

I just wanted to send you a huge hug. xxx

I have woken up this morning with numb lip on right and tongue and part of face feels hard to swallow any body had sane scary

[quote=“hyatt”] I have woken up this morning with numb lip on right and tongue and part of face feels hard to swallow any body had sane scary [/quote] That sounds realy scary, have you spoken to anyone about it you need to see gp or ms nurse i think you need to see someome soon .

hope you feel better soon .xx

Barbara I do hope you will be able to get some relief soon. Going through an episode that has lasted for 8 weeks. I don’t think the Amtrypteline is working any longer and will be going back to GP on Monday to get something that will make it stop.I hate. taking meds but I hate pain even more. This is a scream out loud situation. Linda x

Linda i do feel for you i know exactly what you,re going though,the unforgiving pain that is so bad that no one else can understand just what you are feeling,unless you have experianced for yourself no one can help.

yes screaming out loud helps i know coz sometimes it catches me unawares and hits a tooth like a red hot poker sticking in it and i have been known to swear very loudly much to lhe familys amusement i dont usualy swear.

I do hope you get some relef soon i had my pegablin increased but as yet its still not helped, i can but hope it will soon work.

LETS SCREAM TOGETHER AAAAAAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRR.

Thats better lol.

Barbara.xx

Barbara, I did want to tell you I do know the pain moves. My pain started at the front of my forehead in the first place and then it moved to behind my ear and then my jaw joined in. It is absolutely horrendous pain. Let me know when you stop screaming! Linda x