Jump to content

Idiopathic Intracranial Hypertension Anyone???

  • Please log in to reply
26 replies to this topic

#26 muminpain

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.

#27 Butterfly*77

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!!! ohmy.gif 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!!!! unsure.gif

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


Join the Real Mums Test Drive Team

Five new mums will join the Essential Baby Test Drive Team and discover great new baby toys from Fisher-Price & write a review to be published on Essential Baby.

Two children fall from second storey window

Two young boys have been rushed to hospital after falling out a second-storey window of a home in Eastwood.

Victorian Labor to introduce same-sex adoption laws

Thousands of same-sex couples with children will have the right to be jointly recognised as parents by Victorian law.

Sneak peek: Maxomorra bee dress, t-shirt and romper for babies

Cutest snap find on the planet - bee rompers, tees and dresses for babies.

Toddler found two days after going missing

A two-year-old girl who disappeared on Friday night from her great-grandparents' home in rural Ohio was found alive Sunday evening in a nearby field.

Dad builds the ultimate bed for his toddler son

The transition from cot to big kid bed might be a little easier if every toddler had a bed like this one.

Is Woolworths now cheaper than Coles?

Woolworths appears to have taken the upper hand in its price battle with Coles after investing millions of dollars lowering the cost of groceries, according to new figures.

Aussie babies and parents stranded in Nepal after surrogacy ban

Parents say Australian babies are being "kept captive" and cannot come home after a ban on commercial surrogacy in Nepal.

Wannabe dads left behind in IVF debate

If virgin women can become mothers through IVF, maybe we're ready for another miracle - genuine equality for men in the parenting debate.

The health and fitness lessons I've learned

What I once assumed about health and fitness is wrong.

Our angel baby story: Hunter James

I have two children: one living, the next an angel baby.

Newlyweds send bill to no-show guests

Planning a wedding can be stressful – and, as most newlyweds can attest, it can be very costly, too.

Your choice or theirs: the tug-of-war over baby names

They had just decided on a name they both agreed on, but then the grandparents threw in an offer of $10,000 in exchange for choosing something else.

Dad-to-be's tearful reaction to pregnancy news goes viral

After 17 years of trying, this man had given up hope of having a family.

Claire Danes: acting out postnatal depression was difficult

Actress Claire Danes found it difficult pretending to have postnatal depression in Homeland, as she had just become a new mother herself.

The moment a 92-year-old meets her great grandaughter

It's a heart-warming photo this family will treasure forever.

How to prepare for breastfeeding when you're still pregnant

While every woman's breastfeeding journey is different, many hurdles are shared. Knowing what to expect will enable you to make informed decisions if - or when - you meet challenges along the way.

Sneak peek: new Love Mae bamboo dinnerware designs

We do love ourselves some brand new designs in tried and true products. The renowned bamboo dinnerware from Love Mae has just had several more members join the family, in addition to a brand new website.

Mum who killed paedophile gets reduced sentence

A mother-of-five who killed a paedophile has had her jail sentence reduced by a judge who described her case as a "truly exceptional" one.

Sneak peek: Geleeo self-cooling pram & high chair liners

We just spotted Geleeo, a brand new self-cooling pram liner you can buy in time for summer.

Toddler's silent debate with mum about naptime

He might not utter a single word - but this toddler is having a great debate with his mother about nap time.



Can't decide?

Check out the Essential Baby Names section for some inspiration

Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.