Jump to content
Idiopathic Intracranial Hypertension Anyone???
26 replies to this topic
Posted 16 March 2012 - 01:25 AM
Hello everyone, I have been suffering for about 5 years now, the pain has been getting progressively worse and I am sick of being told by the doctors that they don't know what is wrong with me! I happened upon this by chance after reading an article on ninemsn and decided to look into it more as it sounds exactly like what I am suffering from! I am waiting for another appointment with my neurologist who has not contacted me for over 3 years. My right eyeball pulsates and sometimes the pain pulsates with it. It has been so bad this past week I have taken so many painkillers, which helped slightly but not completely. It was so bad last week I couldn't even hang the washing on the line. Just lifting my head enough to see where I was hanging it was enough to bring on so much pain on my eye and temple that it brought me to tears. I can't cope with the kids when I am in pain. It hits me pretty bad when I am driving and every little bump in the road brings on the sharp pain in my eye. I thought I was alone until I googled the condition and came across this site. CT scans and MRI's have revealed that I have a boney abnormality in the eye that I suffer with, like moth-eaten erosion of my eye socket. Everytime I go to the gym, or run or bend down to pick something up off the floor, just that rise in blood pressure in my head leaves me feeling fatigued and double visioned and the pain hits hard and I feel like I'm gonna have a stroke or like I have an aneurism, but they would have found that if it was. Does this sound like what you all are suffering with? I'm going to ask my neurologist to test me for this condition next time I see her. It is so depressing because I feel like I have just been left to suffer with one GP telling me I need to find a way to live with it! easier said than done I'm afraid. I am only 74kilo's. which is slightly overweight, Ideally I'd like to be only 60 but I am getting there slowly. It has been hard to lose it after having my third child.
Posted 23 April 2012 - 04:42 PM
I was diagnosed with IIH last week after a visit to the optometrist for new contact lenses featured an unwelcome surprise. The optometrist found a large amount of swelling on my brain behind my eyes and referred me for an urgent appointment with a neuro opthmalogist at the PA in Brisbane. I also saw a neurologist at the same time.
I ended up having a MRI on Thursday which came up clear for anything nasty and my eye tests did not show any issues, so no damage to either eye which was lucky. However my lumbar puncture gave me a pressure reading of 40 when it should have been under 23!!! They managed to bring it down to 22 but I was having sharp pains in my tummy (23 weeks pregnant) so they pulled the plug then.
Back tomorrow to the neuros for another look behind my eyes to see what impact the LP had on my swelling. If all good, I will be monitored and have another LP in 3-4 weeks but if it is still heavily present, I will need to go on Diamox (?). I also need to lose weight even though I am pregnant and really get it off after DS2 is born. Most of my weight is fluid (I have put on 10kg so far) but I had a few extra kilos on me before I was pregnant (I was about 75-80kg, 5'9) so they need to go.
The funny thing is, I haven't had really any symptoms apart from a bad migraine earlier this year and a sinus headache a couple of months ago. My headaches have been very mild and occasional and I honestly thought my dizziness and double vision was from pregnancy as I had a bit of it when I was pregnant with DS1. I was ready to change my optometrist appointment as I was too busy at work - luckily I went anyway!!!!
All I can say is that the whole process has been extremely quick and well organised as I think they wanted to move quickly because my IIH is pregnancy related.
2 user(s) are reading this topic
0 members, 2 guests, 0 anonymous users
The Essential Baby & Toddler Show is back this April! Save $8 off the door price for a limited time only!
Sometimes the greatest baby name ideas come from the most unexpected places, as these EB members show.
While we often think of pregnancy as a 40 week affair, experts agree that 37 weeks is actually “full term". So is there an argument for inducing all births at 37 weeks?
Controlled-crying techniques may help some babies sleep through the night, but for many exhausted new parents, it's just a recipe for more tears all round.
As people become more aware of these benefits, I hope more parents will practice this method, so we can cut down on nappies and improve baby bonding.
Aussie actress Emily Symons has announced she is pregnant with her first baby.
A little girl will grow up without her father after the fit and healthy 34-year-old passed away while doing something he had practised his whole life.
You could be doing yourself a disservice by encouraging your toddler to have an afternoon nap, according to new research.
We've compiled a guide to some of the most popular presents for newborns and new mums, and for christenings and naming days.
Actress Jaime King is pregnant with her second child, giving 16-month-old James a sibling.
The Abbott government should extend funding to nannies, and direct childcare payments to low and middle income families, a landmark study on childcare has found.
As many as one in two newborn babies suffer from skin irritations in their first few weeks. So what are the most common rashes and irritations to look out for?
Wall decals are the answer to creating a beautiful nursery or children's space without lifting a paint brush, a spirit level or even a hammer.
Three-year-old Cain Trainor headed off home after his first day at a new preschool without telling anyone.
In spite of being in an almost constant state of motion while looking after the kids and trying to keep things together at home, it can seem as though parents have managed to get nothing on the to-do list done by the end of the day.
The middle name is no longer an afterthought, and parents' inspiration comes from many places.
A new IVF scheme offers couples the chance to fall pregnant and give birth - or get their money back. But there's more to it than you might think.
A baby born still inside the amniotic sac gave US doctors a rare glimpse at life inside the womb.
Three years ago Jason Hughes viciously attacked his ex-partner. Now she has to write to him three times a year.
A West Australian woman will fight allegations that she scammed expectant mums by selling them fake ultrasound pictures of babies.
Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.
Top 5 Articles
A Sydney mother who suffered brain damage when she was hit by a car while pushing her newborn baby in a pram has reached a confidential out-of-court settlement with the driver's insurance company.
A culturally sensitive midwifery service has gained the trust and respect of Aboriginal women.
Most mums-to-be plan to take things easy and perhaps have a little break from work as the birth of their baby draws near. Not Kate McCartney.
Announcing that you're expecting can be a time to express your creativity, sense of humour and imagination. Check out how other parents and parents-to-be have broken the news to friends and family.
Last week an un-retouched photo of model Cindy Crawford surfaced, showing the 48-year-old mother-of -two posing in underwear.
Thought your toddler could not love pancakes any more than they already do? How about if the breakfast treat came in the shape of every two-year-old's favourite cartoon character?
I thought I was never going to be able to have a successful pregnancy. I decided that I wasn't going to form an emotional attachment with this baby.
February 18 marks the start of one of the most prolific annual baby competitions in Australia: the Bonds Baby Search. And this year is going to be more special than ever.
This is not something that people like to talk about, but Facebook has announced that it will grant users more control over what happens to their pages after they die.
Mother of four Marie Holmes was financially struggling after quitting her jobs at Walmart and McDonald's in order to care for her children.
A first-time mother whose daughter died hours after her frightening birth insists she was never told of the risks of being obese and pregnant.
She has labelled parents who do not vaccinate their children "misinformed imbeciles" - and for that, she makes no apologies.
Are you one of those that know the whole IKEA catalogue by heart? Love their stuff but want to personalise it? Here's some inspiration to help you realise the potential of IKEA furniture and fittings.
I never thought I’d say this, but for a brief moment last week, Kim Kardashian and I had something in common: both our kids had public tantrums.
Polycystic ovary syndrome (PCOS) is the most common female hormonal condition, affecting roughly one in 12 Australian women.
If doing it on your back is out, what's the best position for labour and birth?
With Valentine's Day coming up, Nat Gilbert could be forgiven for thinking her husband might be planning a surprise for her.
We usually only hear the success stories: tales of the two-year-old who’s talking, running and completely toilet trained. But other stories need to be told too.
Sarah Kiss has a word of advice for proud mums and dads who are keen to enter their babies in this year's Bonds Baby Search Competition - just have fun.
If your family needs to go to sleep school, go with them. You are part of that family and you are part of the solution.
A French court may have ruled out Nutella as a baby name, but that doesn't have to stop you from taking inspiration from the supermarket (or bottle shop). See what parents in the US have chosen for their delicious little ones.
Check out this range of products designed to help make your breastfeeding journey more enjoyable, manageable and convenient.
Win a KitchenAid Mixer
To celebrate, and to thank our amazing fans, we?re giving away a KitchenAid Artisan Tilt-Head Stand Mixer.