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 Amy diagnosed 2012

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amyw1982
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PostSubject: Amy diagnosed 2012   Tue Sep 11, 2012 10:27 pm

HELLO, MY NAME IS AMY AND IM NEW TO THE GROUP. MY PROBLEMS FIRST STARTED IN 2006. I DEVELOPED A HEADACHE WHICH JUST WOULD NOT GO AWAY. I TRIED VARIOUS PAINKILLERS BUT NOTHING SEEMED TO WORK. THIS CARRIED ON FOR A COUPLE OF WEEKS. I THEN STARTED TO GET A STIFF NECK ASWELL. AT THIS POINT I WAS STARTING TO WORRY BUT STILL THOUGHT IT WOULD PROBERLY GO AWAY. ONE EVENING I FOUND I COULDNT SIT DOWN AND ONLY FELT AT EASE IF LYING DOWN. I WAS ALSO NOT SLEEPING DUE TO PAIN. SO MY MUM TOOK ME TO THE DOCTORS. WHILE IN THE WAITING ROOM I COULD BARELY LIFT MY HEAD UP AND WAS STARTING TO PANIC.
I SAW THE DOCTOR SHE SAID IT WAS JUST TENSION AND SHOULD JUST GO AND HAVE A WARM RELAXING BATH. SO WENT HOME.
DURING THE NIGHT L HAD REALLY SEVERE HEADACHE BUT THOUGHT IT MUST JUST BE TENSION AND TRIED REALLY HARD TO RELAX.
THE NEXT DAY I STARTED GETTING PAINS IN MY CHEST AND ARMS. IT WASNT CONSTANT BUT WHEN IT CAME IT REALLY HURT. TRIED COCODAMAL TO SEE IF THAT WOULD HELP, IT DIDNT.
SO BACK AT THE DOCTORS FIRST THING NEXT MORNING TO SEE ANOTHER DOCTOR. SHE THOUGHT I HAD A BAD VIRUS AND TOLD TO KEEP TAKING PAINKILLERS. THURSDAY WAS THE SAME DESPITE TAKING PAINKILLLERS.
THEN ON FRIDAY I FOUND MY VISION WAS BLURRED, SO MADE AN EMERGENCY APT. I TOLD THE DOCTOR EVERYTHING AND HE PUT IT ALL DOWN TO ANXIETY. RECOMMEMED BOOKS I COULD READ. SO WENT HOME AGAIN, TRIED NOT TO WORRY BUT THAT NIGHT I FOUND I COULDNT FOCUS ON PEOPLE'S FACES. I DIDNT TELL MY MUM AND DAD AS DIDNT WANT TO WORRY THEM SO JUST WENT TO BED.
THE NEXT MORNING MY VISION WAS STILL BAD SO RANG THE OPTICIONS. THANKFULLY SHE RELAISED HOW UPSET I WAS AND TOLD ME TO COME STRIAGHT COME.
I TOLD HER MY STORY AND SHE HAD A LOOK. AFTER ABOUT 10 MINUTES SHE SAID THERE DOES SEEM TO BE SOMETHING PUTTING PRESSURE ON YOUR EYES AS MY OPTIC NERVES HAD SWELLED UP. I THEN OF COURSE BURST INTO TEARS. SHE RANG MY DAD AND SHORTLY AFTER MY MUM APPEARED. I CAN HONESTLY SAY I HAVE NEVER FELT SO SCARED. SHE WROTE A LETTER AND TOLD MY MUM TO TAKE ME TO THE HOSPITAL. IT WAS THE LONGEST JOURNEY OF MY LIFE.
WHEN AT THE HOSPITAL I SAW THE NURSE AND AN A+E DOCTOR BUT THEY WERE COMPLETELY BAFFLED SO HAD TO WAIT FOR THE MEDICAL TEAM. THANKFULLY THE REGISTAR THOUGHT HE KNEW WHAT I HAD BUT HAD TO HAVE A CT SCAN FIRST. IT WAS CLEAR AND THE LOVELY VERY HANDSOME DOCTOR SAID HE THOUGHT I HAD BENIGN INTERCRANIAL HYPERTENSION. AT THE TIME WAS SO RELIVED THAT I DIDNT HAVE A BRAIN TUMOUR I DIDNT REALLY TAKE IT IN.
LATER THAT EVENING I HAD A LUMBER PUNCTURE. THE DOCTOR SAID IT WAS LITERALLY SPURTING OUT AND FILLED ABOUT THREE BOTTLES. I STAYED IN HOSPITAL TILL THE FOLLOWING FRIDAY.
WHILE IN HOSPITAL I MET A NEUROLOGIST WHO PUT ME ON DIAMOZ. TWO TABLETS TWICE A DAY. I HAD A FIELD TEST WHICH SHOWED MY LOWER VISION WAS DAMAGED .
EVER SINCE THEN IVE HAD REGULAR VISITS TO THE NEUROLOGIST AND IT SEEMED TO STABILIZE. SO MUCH SO THAT I WAS DOWN TO THREE TABLETS AND WAS CONSIDERING GOING DOWN TO TWO.
HOWEVER ABOUT FOUR WEEKS AGO I HAD A BAD BOUT OF SINSITUS. I HAD ANTIBOCTICS WHICH SEEMED TO CLEAR MOST OF THE SYMPTONS BUT COULDNT GET RID OF HEADACHE. I THOUGHT IT COULD BE THE BIH BUT THOUGHT IT CANT BE AS I VE BEEN DOING SO WELL. BUT THEN AS WELL AS THE HEADACHES CAME THE STIFF NECK WHICH GRADUALLY GOT WORSE EACH DAY. I WENT TO THE DOCTORS BUT AS MY VISION WAS OK SHE SAID NOT TO WORRY AND KEEP TAKING THE PAINKILLERS.
A FEW SLEEPLESS NIGHTS LATER I WAS SAT UP IN BED AND IT JUST FELT LIKE MY HEAD WAS GOING TO EXPLODE. IT GRADUALLY FADED BUT SOON CAME BACK.
SO THE NEXT MORNING I ASKED MY MUM TO TAKE TO HOSPITAL. I WENT THROUGH THE SAME AS BEFORE, A + E DOCTORS NOT KNOWING WHAT TO DO AND HAVING TO WAIT FOR THE MEDICAL TEAM. THIS TIME THOUGH I HAD TO HAVE AN ECG AND CHEST XRAY ASWELL AS THE CT SCAN.
THIS WAS A SUNDAY AND ALSO A BANKHOLIDAY. EVENTUALLY HAD LUMBER PUNCTURE TUESDAY PM. I WAS DISCHAGRED THE NEXT DAY. I AM CURRENTLY BACK ONTO 2 TABLETS TWICE A DAY AND WAITING FOR AN APT WITH THE NEUROLOGIST.
THIS ALL HAPPENED A COUPLE OF WEEKS AGO AND ONLY JUST THE LAST COUPLE OF DAYS STARTED TO FEEL NORMAL AGAIN. MY BIGGEST PROBLEM IS MY ROOM MANAGER AT WORK. I WORK IN AN NURSERY. THE CENTRE MANAGER IS FINE, VERY UNDERSTANDING. BUT MY MANAGER HAS BEEN QUITE NASTY IN HER MANNOR TOWARDS ME. I USED TO LOVE MY JOB BUT AM NOW DREADING GOING BACK. THE DOCTOR HAS HAD ME SIGNED OFF FOR TWO WEEKS. HE WANTED ME TO BE OFF LONGER BUT I SAID I SHOULD BE OK. HE HAS AGREED TO LET ME GO BACK THIS THURSDAY ON A GRADUAL RETURN. I JUST HOPE ITS NOT GOING TO BE AS BAD AS I THINK IT WILL BE.
IM VERY SORRY FOR THE LONG POST BUT IT HAS JUST REALLY HELPED TO GET IT OFF MY CHEST. SADLY THIS LAST BOUT COINCIDED WITH MY PARENTS HOLIDAY AND THE OTHER NIGHT IN THE EARLY HOURS MY LOVELY 16YR OLD DOG HAD A STROKE. SO HAVING TO LOOK AFTER HER ASWELL.
THANKYOU FOR LISTENING. I LOOK FORWARD TO GETTING TO KNOW YOU ALL
BEST WISHES
AMY Very Happy


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BananasMom
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PostSubject: Re: Amy diagnosed 2012   Tue Sep 11, 2012 11:53 pm

Hi Amy! Smile Welcome to the group! Thanks so much for sharing your story ... I can relate to a lot of it. And I'm so sorry that you have been having so much trouble with your IIH again lately, and for all you're having to deal with at work and your poor dog! *big hugs* I'm glad you found us and that we can be here for you as you're going through this ... that's the best thing about this site to me ... we're not alone anymore.

It is good to hear that you are starting to feel normal again. I hope you will continue to feel better as the days go on. It's interesting you mentioned about having sinusitus and that causing your IIH to flare back up -- I have experienced worsening of my IIH symptoms when I've come down with sinus infections, too. Take good care of yourself and rest up during your time off work. When do you have to go back?

I look forward to getting to know you better here on the forums! Very Happy

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medmisfit
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PostSubject: Re: Amy diagnosed 2012   Wed Sep 12, 2012 3:38 pm

Hi Amy, welcome to the group!! I'm so sorry to hear about your struggles..diagnosis and treatment can be so difficult. I've also had flare ups w/ different infections and viruses, so hopefully it will stablize w/ the Diamox again. IIH can affect every aspect of your life, but manageable w/ the right treatment. I've been able to maintain full time employment since shunt placement, so stay hopeful. I've also had to deal w/ rotten employers, so I understand your concern and dread. There are options available to you if it becomes an issue, so keep us posted.

hug
Julie
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amyw1982
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PostSubject: THANKS   Wed Sep 12, 2012 9:08 pm

THANKYOU FOR THE LOVELY MESSAGES. IT DOES MEAN ALOT KNOWING THERE ARE PEOPLE WHO CARE AND UNDERSTAND Very Happy
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Heidi
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PostSubject: Re: Amy diagnosed 2012   Wed Sep 12, 2012 9:23 pm

Hi Amy and a warm welcome to our group forums.You've had quite a time of it and I'm glad you're back on track and that you are now getting back to feel more normal. I totally understand about employers it's a universal thing we all seem to experience. It's funny how they cherry pick through what illnesses they choose to be understanding about.
We're here to help and support you all we can, so please don't hesistate to ask questions or even have a rant in the Group Huddle. We all understand and are going through much of what you are, you're not alone we're here to stand your corner with you.
Heidi hug
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