SUNDAY, 2 JANUARY 2011
THERE IS A SENSATION IN MY MOUTH AND A PRESSURE IN MY FACE
THE PRESSURE IN MY MOUTH IS TELLING ME THAT THE PAIN IS INCHING CLOSER.I CANT TYPE ANYMORE AS THE THOUGHT OF THE TN KNOCKING ON MY DOOR IS UNSETTLING ME,I AM SCARED!!!
Posted by stef at 09:16 2 comments
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WEDNESDAY, 29 DECEMBER 2010
THE MONSTER IS STIRRING
THE MONSTER IS BEGINNING TO RAISE HIS HEAD. IT WILL SOON BE CRAWLING THROUGH THE DARKNESS TO FIND ME. I SENSE IT, I FEEL ITS BREATH ON MY NECK. I WON’T BE SURPRISED. IT IS INEVITABLE AND IT STIRS
HAPPY HOLIDAYS?
I hope that this Christmas will be pain free for all my fellow sufferers. We live on tenterhooks. It is almost a lottery.This TN has a way of hitting you when you just think you have some rest-bite
Whatever happens may you be surrounded by love and understanding
Posted by stef at 13:28 0 comments
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PARANOID ABOUT THE TWINGES
I HAVE A TINGLING IN MY NUMB LIP.I WONDER IF IT IS THE START OF THE CRYO WEARING OFF,I ALSO GET A PAIN I CANT IDENTIFY GOING UP MY JAWLINE PAST MY EAR…IS IT TN IN DISGUISE? I MEAN IS IT ALL THE SENSATION OF THE TN BREAKING THOUGH THE DEADENED NERVES.
I SEE THE LOCAL HOSPITAL ON 21ST DECEMBER TO CHECK ON MY CRYO AND LOOKING FORWARD TO SEEING THE CONSULTANT IN QUEEN’S SQUARE, LONDON MID JANUARY…PLEASE KEEP YOUR FINGERS CROSSED I GET THE MICROVASCULAR DECOMPRESSION SURGERY VERY SOON…
I WOULD LOVE TO HEAR FROM ANYONE ELSE WITH TN
I am waiting for my mouth to heal
THE LIQUID NITROGEN HAS SERIOUSLY DAMAGED MY SENSE OF TASTE AND I HAVE SORENESS IN MY MOUTH,BUT I WILL SETTLE FOR THIS WITHOUT THE TN PAIN…AT LEAST MY LIFE IS NOT UNBEARABLE,JUST UNCOMFORTABLE,I GUESS THIS IS THE BEST I CAN EVER HOPE FOR,IT WONT GET ANY BETTER THAN THIS
My MENTAL STATE IS HARDLY ANY BETTER,THE TN MESSES WITH THE MIND TOO…I AM NOT DOING WELL ON THAT FRONT
tn association
RECEIVED THIS MONTH’S COPY OF THE TNA NEWSLETTER,READING OTHER PEOPLE’S TRAUMAS AND REALISING I AM NOT ALONE AND PEOPLE UNDERSTAND MY PAIN IN THE VERY REAL SENSE.
THERE HAVE BEEN REPRESENTATIONS IN THE HOUSE OF COMMONS http://www.theyworkforyou.com/debates/?id=2010-07-27d.974.0
we need to get a higher profile so it is understood by the dental profession etc.
I FEEL DEPRESSED AND SAD AND MY DRUGS MAKE ME SLIGHTLY CONFUSED AND TIRED ALL THE TIME
I AM SCARED OF UPPING MORE THAN THE DOSE I AM ON, BUT I KNOW I NEED TO.
THURSDAY, 25 NOVEMBER 2010
DATE
I HAVE A DATE FOR MY FIRST CONSULTATION WITH MY NEW NEUROSURGEON .ITS 13TH JANUARY 2011, AT 10AM
FEELING PRETTY ILL AND DEPRESSED,JUST SLEEPING ALL THE TIME.
DON’T WANT TO DO ANYTHING AT ALL. THE TABLETS ARE SAPPING MY ENERGY AND ENTHUSIASM FOR LIFE.
Posted by stef at 09:54 0 comments
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MONDAY, 22 NOVEMBER 2010
BACK AT WORK
I AM BACK INTO THE THICK OF IT BUT HAVE NO ENERGY AT ALL .I DO SLEEP A LOT. I AM STILL ON 1000MG AND I DON’T FEEL TOO BAD, AND AT THE MOMENT I HAVEN’T BUILT UP TO THE 3000MG THAT I WAS ADVISED TO DO,MAYBE ANOTHER 300 BY THE END OF THE WEEK…MY WORD FOR THE DAY…DEPRESSED
Posted by stef at 10:55 0 comments
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SUNDAY, 21 NOVEMBER 2010
2 weeks on from CRYO SURGERY
I WAS HOPING THAT I WOULD BE AS GOOD AS NEW, UNFORTUNATELY I AM DOWN AND DEPRESSED AND I WANTING TO BE WELL AGAIN;;THE TN PAIN HAS GONE,BUT THE SORENESS IN MY MOUTH IS EXTREMELY BAD AS I BELIEVE THE LIQUID NITROGEN HAS SPILLED ON MY TONGUE AND CHEEK.
THE DRUGS ARE MAKING ME SLOW AND LETHARGIC
I AM SO PLEASED TO BE TN PAIN FREE THOUGH…JUST SCARED ITS GONNA COME BACK SOON,I AM AWAITING A DATE FOR MY BRAIN OPERATION WHICH WILL SORT ME OUT FOR UP TO 10 YEARS,I AM GOING FOR A SLEEP…ITS ALL I WANT TO DO
Posted by stef at 03:51 0 comments
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SUNDAY, 14 NOVEMBER 2010
ON THE MEND???
DEPRESSED AND FEELING ILL,MAY BE ALL THE DRUGS,.I CANNOT OPEN MY MOUTH MORE THAN 5MM,MY MOUTH IS ULCERATED AND EATING IS AN ORDEAL ALTHOUGH I DO NOT HAVE MY TN PAIN I AM DISAPPOINTED THINGS HAVE NOT GOT BACK TO NORMAL YET I HAVE SUPPORT FROM THE TN HELPLINE AND I WILL BE GOING TO THE DOCTORS IN THE MORNING AS I HAVE NIGHTMARES AND SEVERE TRAUMA FROM THE LAST FEW WEEKS…IT IS NOT SOMETHING YOU CAN JUST GET OVER…THERE IS NO CURE,I A, WAITING FOR IT RETURN…I HAVE CANCELED THE GLYCEROL INJECTION THIS WEEK IN THE HOPE ANOTHER SPECIALIST CAN DO THE BRAIN OP QUICKER MY BODY IS SCREAMING ON THE INSIDE
Posted by stef at 07:36 0 comments
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TUESDAY, 9 NOVEMBER 2010
8th NOVEMBER BACK TO HOSPITAL
THE ER DOCTOR SAID TO SEE HIM AT 8 AM AS HE WILL GET TOGETHER WITH MY ORAL CLINIC AND COME UP WITH A PLAN…SO I SAW HIM AT 8AM…HE TOLD ME TO WAIT A WHILE AT 11AM HE SAID HE COULD DO NO MORE FOR ME AND TAKE A TRIP TO THE CLINIC,SO WE WALKED ACROSS THE HOSPITAL TO THE CLINIC. ALL THE WHILE I WAS CRYING AND SCREAMING AND HAVING PAIN FITS. EVENTUALLY THE SPECIALIST CALLED ME IN TO HER OFFICE. SHE WAS A NEW ONE,I HAD NOT MET HER BEFORE. I PROMPTLY WENT INTO A PAIN FIT SCREAMING SO MUCH THAT NO SOUND WAS COMING OUT OF MY MOUTH…SHE SAID TO BE HONEST WE CANT REALLY DO MORE FOR YOU…DO U WANT AN INJECTION ,IT COULD KEEP YOU PAIN FREE FOR 5 HOURS…OR YOU COULD HAVE CRYOSURGERY…HMMMM SO MANY DECISIONS FOR ME,I COULDN’T ANSWER HER,I WAS TO BUSY SCREAMING IN AGONY.AFTER A MINUTE OR TWO THE PAIN STOPPED,I HAD JUST ENOUGH TIME TO TALK BEFORE IT TRIGGERED THE PAIN…I STOOD UP AND SAID THANK YOU SO MUCH,YOU HAVE BEEN WONDERFUL,SUCH A GREAT HELP…I AM GOING OFF TO FIND A CORNER IN THE HOSPITAL TO LAY DOWN IN AND CRY OUT
I WALKED OUT THE OFFICE IN FRONT OF ALL THE WAITING PATIENTS WHO HAD BEEN HEARING MY HOWLING AS I COLLAPSED TO THE FLOOR SOBBING MY HEART OUT
THE NURSES WHO I HAVE KNOWN FOR 3 YEARS RAN OUT AND HUGGED ME,THEY PERSUADED ME TO HAVE THE CRYOSURGERY.I HAD THIS DONE A MONTH AGO TO NO EFFECT AND I HELD OUT NO HOPE…THIS SPECIALIST CAME INTO THE ROOM AND PERFORMED THE OPERATION…AND NO PAIN.
EXHAUSTED…
BUT WILL THIS MAKE THE OPERATION IN LONDON STILL GO AHEAD NEXT THURSDAY…OR WILL IT MAKE IT IMPOSSIBLE TO DO??? I TRIED TO TELL THEM AT THE CLINIC WHEN THEY DID THE CRYO SURGERY THAT IT MAY GIVE COMPLICATIONS,BUT AS I COULDN’T TALK WITH PAIN, NOBODY LISTENED
Posted by stef at 04:42 0 comments
7TH NOVEMBER SUNDAY LUNCH AT HOSPITAL
HAVING SURVIVED ON A DIET OF PILLS IT WAS TIME TO SEE ER.
A BLOOD TEST PROVED THAT I WAS INDEED SUFFERING FROM DEHYDRATION AND DECIDED TO FEED ME THROUGH A BAG AND DRIP INTO MY VEINS,NOT EXACTLY AS GOOD AS FRIED CHICKEN BUT BEGGARS CANNOT BE CHOOSERS…IT WAS FELT NECESSARY AT THE SAME TIME TO GIVE ME A DESSERT OF MORPHINE AS AI WAS SCREAMING THE WARD DOWN
SENT HOME WAITING FOR THE PAIN TO CONTINUE,AND STILL HAD A HIGH DOSE OF FENTANYL PATCHES STILL MAKING ME SEE THINGS AND HEAR VOICES IN MY HEAD…TROUBLE IS THE VOICES WERE SAYING…NOT ENOUGH PAIN YET,YOU NEED MORE…
Posted by stef at 04:13 0 comments
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5TH NOVEMBER LATER THAT EVENING
BY THE TIME I GOT HOME THE PAIN WAS RAGING…I DRUGGED MYSELF UP WITH AS MUCH AS POSSIBLE BUT NOTHING HELPED…SO MORE PILLOW BITING.I CRIED FOR MERCY AND THAT MY LIFE WOULD BE TAKEN DURING MY SLEEP
Posted by stef at 03:47 0 comments
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MISLED AND ABANDONED 4TH NOVEMBER
I DID MANAGE TO EAT FOR THE FIRST TIME FOR DAYS WHEN THE TABLETS KICKED IN BUT IT CERTAINLY WAS NOT MORPHINE, IN FACT IT WAS STANDARD DRUG FOR MILD PAIN RELIEF WHICH BECAME APPARENT VERY QUICKLY WHEN I WAS WRITHING IN AGONY.
FROM THE ECSTASY TO THE AGONY
THE NEXT MORNING I WENT TO SEE MY GP BUT AS I WAS SCREAMING SO MUCH I WAS ADVISED TO GO TO HOSPITAL,BESIDES I WAS MAKING THE RECEPTIONIST FEEL UNCOMFORTABLE AND I WAS FRIGHTENING THE KIDS THERE
I WENT TO ER AND WITHIN MINUTES I WAS ON A MORPHINE AND PARACETAMOL DRIP
THE PAIN DIDN’T GO COMPLETELY EVEN ON HIGH DOSES OF THIS!!! BUT THEN I WAS GIVEN A PAIN BLOCKER OF MARCAINE INTO MY FACE,WHICH GAVE ME RELIEF…THE ER PHYSICIAN SAID TO MAKE SURE I GOT MORPHINE PATCHES FROM MY DOCTOR IN THE MORNING.
SO I LEFT THE HOSPITAL FEELING NO PAIN AND OPTIMISTIC
Posted by stef at 03:42 0 comments
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WEDNESDAY, 3 NOVEMBER 2010
SISTER MORPHINE
I SAW THE WORLD FAMOUS TN SPECIALIST TODAY.
I HAD MOST THINGS WRITTEN DOWN. I HAD SAID I WAS A MEMBER OF THE TN ASSOCIATION AND HE SAID "LET’S CUT TO THE CHASE, WHICH OPERATION DO YOU WANT?"
AT THAT POINT I HAD A PAIN FIT, I SCREAMED AND CRIED AND SCREWED MY BODY UP.MY FACE CONTORTED INTO UGLY HELPLESSNESS.
I ASKED FOR MICRO-VASCULAR DECOMPRESSION AND HE LOOKED AT ME WITH COMPASSION AND SAID THAT UNFORTUNATELY THERE IS A 6 MONTH WAITING LIST AND OFFERED ME A GLYCEROL INJECTION THROUGH THE CHEEK INTO THE NERVE CAVITY IN THE BRAIN. IT CAN BE DONE NEXT WEEK AS I AM AN EMERGENCY.IN THE MEANTIME I HAVE TO TAKE MORPHINE.
6 HOURS LATER I AM STARTING TO FEEL THE SIDE EFFECTS OF THIS DRUG, BUT NO NOTICEABLE PAIN RELIEF. ONE POSITIVE IS I ATE FOR THE FIRST TIME IN 24 HOURS.THE GLYCEROL INJECTION HAS A 50 PER CENT CHANCE OF WORKING FOR UP TO 5 YEARS.
ONWARDS AND UPWARDS. HE ENDED UP TELLING ME THAT THE NOTES I MADE REGARDING MY CONDITION WILL FORM PART OF HIS NEXT TALK ON THE SUBJECT.
Posted by stef at 14:01 0 comments
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TUESDAY, 2 NOVEMBER 2010
I THOUGHT I KNEW WHAT PAIN WAS UNTIL NOW
TODAY WAS A NEW EXPERIENCE…THIS WAS WITHOUT DOUBT THE WORST PAIN KNOWN TO HUMAN BEINGS…AT WORK I WAS HIT BY PAIN THAT MADE ME SCREAM AT THE TOP OF MY VOICE WHILE I KICKED AND SCREAMED AND TEARS RAN DOWN MY CHEEKS…MY LEGS WERE KICKING AND I CURLED UP IN AGONY. HAD TO COME AWAY FROM WORK
SEEING MY NEUROSURGEON TOMORROW
WEDNESDAY, 27 OCTOBER 2010
A PUZZLE
This may be a surprise
I cannot say why but i had very little incidents of pain today.I did have a hot stone massage last night. It would be a surprise if that helped.Maybe the tablets are working, I am feeling a little out of it but am not a Zombie.
I will continue to take 900mg. Today even eating was easier, yesterday i cried every time i put food near my mouth.
It’s fantastic but i live in fear of the pain,I had a few nasty SHOCKS today but that is all
I hope I am going to be OK FOR A WHILE. Seeing the surgeon in a week today,
MONDAY, 25 OCTOBER 2010
PAIN PAIN PAIN
EXCRUCIATING FACE DISTORTING PAIN,900MG AND JUST FEEL CONSTANTLY LIKE I JUST WOKE UP
I AM TRYING TO GET A QUICKER APPOINTMENT WITH THE NEUROSURGEON…ITS A LIVING HELL
AND SO IT CONTINUES…
I cried at work today because the pain was relentless,I couldn’t take it . I was not able to talk without flinching, I cried aloud as I tried to eat,so I have not eaten today
The hospital appointment is 23rd November…it seems so long to wait.I have been given antibiotics by my dentist because as I eat exclusively on my left side I have irritated the gums and now have an abscess which has made me look like I have a golf ball in my mouth.
I am hoping to be brave enough to take the torture .The drugs are not making any difference,SO IT’S UP THE DOSE TIME AGAIN…PAIN PAIN PAIN PAIN PAIN IS THE PREDOMINANT FEATURE OF MY LIFE
Posted by stef at 09:52 0 comments
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SUNDAY, 17 OCTOBER 2010
TRIGEMINAL NEURALGIA UPDATE: THE PAIN HAS RETURNED
TRIGEMINAL NEURALGIA UPDATE: THE PAIN HAS RETURNED: "SUNDAY 17TH OCTOBER 2010.I HAVE INCREASED MY DOSE TO 400MG A DAY,LAST NIGHT I HAD WAVE AFTER WAVE OF SEARING HOT STABBING PAIN,I IMAGINE …"
Posted by stef at 06:48 0 comments
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THE PAIN HAS RETURNED
SUNDAY 17TH OCTOBER 2010.I HAVE INCREASED MY DOSE TO 400MG A DAY,LAST NIGHT I HAD WAVE AFTER WAVE OF SEARING HOT STABBING PAIN,I IMAGINE ITS LIKE BEING TASERED. I CRIED UNTIL I EVENTUALLY FELL ASLEEP. THE PAIN NEVER COMES ON WHEN I SLEEP.I AWOKE THIS MORNING THE FIRST THING I THINK OF IS HOW WILL THE PAIN BE TODAY…I DARED MYSELF TO MOVE MY MOUTH AND ****BANGTHE TASER WAS UPON ME.
I GOT UP AND HAD A SHOWER…AS THE WATER RAN DOWN MY FACE EACH DRIP WAS A BLOW BY A HEAVY WEIGHT BOXER I GRIMACED AND SCREAMED AS I TRIED TO AVOID GETTING IT ON MY FACE.
I DRIED MYSELF OFF NOT DARING TO TOUCH ANY POINT ON MY FACE…PAIN AGAIN AS DRIED MY HAIR.PAIN FOLLOWS ME EVERYWHERE. COFFEE FOR BREAKFAST WITH A CAKE,AS I OPENED MY MOUTH TO TAKE A BITE THWACK !!! A LIGHTENING BOLT EXPLODED IN MY JAW.
I HAVE DECIDED NOT TO TALK TODAY,ITS JUST TOO TIRING TO TAKE THE CONVULSIONS AS THE PAIN BECOMES RELENTLESS IN ITS ATTACKS.
PAIN IS NOT ENOUGH OF A WORD TO DESCRIBE THIS TORTURE.
OH THE PILLS,I AM GETTING A LITTLE DISTANT,MY REFLEXES HAVE SLOWED DOWN A LITTLE.AND I AM DROWSY.IS THE PAIN SLIGHTLY LESS SEVERE SOMETIMES?? ITS HARD TO TELL.
Posted by stef at 06:27 0 comments
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MONDAY, 11 OCTOBER 2010
FOLLOW MY JOUNEY THROUGH PAIN
I have suffered from TRIGEMINAL NEURALGIA for 3 years and have had a number of treatments. Nothing has worked.
I have just got back from the hospital after having excruciating injections.
Today is the first day on GABAPENTIN and I know i will slowly become a ZOMBIE…I will keep you posted just how undead I become.
I have received an appointment for Charring Cross Hospital on 23rd November 2010 to discuss a brain operation, My progress will be posted here.
I would love to hear from anyone with TN experience.