hi all.
id like to share my story with you,
please excuse any spelling mistakes as am still in agony.
my worst fear was being in pain and not being able to control it.
i posted in january about a long lasting sinus infection that wasnt clearing.
it was a sinus infection plus a broken nose[nothing compared to the pain i was and still am in]
i went to see an ent because i was in complete agony..i couldnt understand why a sinus infection and possible broken nose should hurt s much,
my pain was in my cheek.my sides of my nose and my teeth and jaw..
my pain in my teeth and jaw was like the worst toothache ever and thaen quadruple that 3 times over..i used to sit in the shower and cry and cry.i really didnt think i could cope with the pain and although i never would i thought about ending it so many times..i could only stay in bed and sleep as the pain went then..anyway i went to ent and the consultant said ypu have some congestion and your septum is off centre but your sinus is clear..i literally couldnt believe it,why was i in such agony..the consultant said im going to refer you to neurology because i think you have trigeminal neuralgia and im going to refer yoou to our chronic pain team also,he agreed to do a septoplasty so i could breath easier but he said thats not your pain..you have this trigeminal neuralgia..it was a relief t know what it was as id been crying every day..my hubby had to take time off work.i was a total mess with agony..i spoke to my dr..he told me that this nerve disoder is known as the worst pain known to mankind and years and years back it was nicknamed the suicide disease[and me scared off pain]
anyway after sufferring with this since the end of december the consultant injected my nose with a block to kill the pain and then he gave me a scritp for tegretol which is an anti convulsnt for epilepsy and trigeminal neuralgia that deadens the nerves..i started it almost 2 weeks ago but you have to phase the dose gradually as the side effects can cause problems..i was in so much pain i couldnt have cared less about side effects..yesterday morning as the 1st day that i had a glimmer of relief..ive still got a lot of facial pain but its muted compared to what it was.and monday i can up the dose and hopefully should be pain free.
ultimalty the only cure is meds forever as it can come and go but it will not go by itslef or surgery..which is scary as the one with most success is brain surgery to cut the nerve..its not life threatning so im not classed as emergency to see the neurologist ..am wait for a appointment but all i care about is the pain going.
it is a rare thing this facial nerve damage and is usually in the 50 s or 60 s that someone would get it..the only thing the drs can think of is my young son ran into me and bashed my nose and thats where my problems started.
all i can say is ive face my worst nightmare..pain like you wouldnt believe and no relief even though i was using co codemal every few hours which would never have worked for the nerve pain i had..
now it should nly be on the up..side effects like itching all ver.nausea and exhaustion from the pills but nothing like the pain i had.
if any one knows anything about trigeminal neuralgia or knows anyone thats had or has it id be interested to hear..but will it have cure my hypo..who knows..i googled a little and that was it..i will not waste my time googling anything anymore and i will never forget the worst of that pain where i didnt know it was possible to feel that kind of apain.
thanks for reading everyone and again sorry for mistakes the pills make me a bit dopey xx
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Originally Posted by Annie0904
