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

 

Australia's top baby names of 2013

Essential Baby has compiled the data available from government records around the country to bring you the list of Australia's top baby names of 2013.

Sara James: fighting for my daughter

Sara James was a high-profile New York journalist, but it was her own daughter's story which raised the most questions.

Siblings and best of friends

I know we'll have some tense moments. I know there will be arguments. But I also know these two will always have this most beautiful bond.

In defence of mums on the phone

I know news stories always attract a range of opinions, and I know they're a place for people to have an anonymous dig in. However, I also know that this mum bashing has to stop.

Rescue dog Zoey and BFF Jasper star in adorable pics

Photographer, self-professed "crazy dog lady" and mum Grace Chon takes photos of rescue dog Zoey and her 10-month-old son Jasper together. The results are just too cute. See more on Instagram @thegracechon.

Pregnancy essentials for the second and third trimesters

So you're through the first trimester of pregnancy - congratulations! Here are some tips for getting through the next six months as comfortably and happily as possible.

Coles Easter eggs recalled due to presence of tree nuts

An allergic reaction has lead to the urgent recall of a variety of Coles brand Easter eggs.

The ultimate travel stroller: the Mountain Buggy nano

We tried the Mountain Buggy nano and give it an enthusiastic thumbs up. As the ultimate travel stroller, it's practical, has great features, and looks fab, too.

Why I love the small age gap between my kids

Six months after our son turned one, we welcomed son number two into our lives. Yes, the small age gap had been planned - and there are things I love and hate about that small gap.

Parents warned about posting kids' photos online

Parents could be putting their kids at risk by posting images and information online which give away personal details, such as where they go to school and which parks they frequent.

Easter gifts for babies, no chocolate in sight!

If this is your little one?s first Easter you might want to mark the occasion with something a little extra special. Here are 10 Easter gift ideas, which won't harm little teeth.

Mum's the word when it comes to baby news

The arrival of a baby is big news, but friends and family need to understand it is not their news to share.

What?s in your parenting toolbox?

So often as parents, we don?t really talk about our ?parenting toolboxes?. But you need to be aware of what you and your partner are working with, and to decide what does and doesn't fit in your lives.

Classroom pregnancy prank goes viral

An American college professor has had to rethink his strict rule about answering cell phones in class after being the victim of an April Fools' prank that has gone viral.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Win the brand new phil&teds vibe

Check out the good looking new release of the Vibe 3 and the Verve 4-wheeler inline strollers. To celebrate their release, we have a Vibe with double kit to give away.

Baby sleep

From birth to one year and beyond, read about baby sleep, soothing techniques, routines, and sleep school experiences.

Australia's top baby names of 2013

Essential Baby has compiled the data available from government records around the country to bring you the list of Australia's top baby names of 2013.

Video: Dad turns son into action movie hero

Many kids would love to be an action movie hero in real life, but very few will ever be able to see themselves in movies like these.

Toilet training in winter

There?s no need to stop thinking about toilet training just because the temperature is dropping: winter is a good a time as any to start the process.

What do you do all day?

It's the question all new mothers dread. For Kate Fridkis, it's a question that strikes to the heart of what it is to be a woman.

Easter gifts for babies, no chocolate in sight!

If this is your little one?s first Easter you might want to mark the occasion with something a little extra special. Here are 10 Easter gift ideas, which won't harm little teeth.

Video: Baby starts his day with a dance party

Few people start their day the same way this little guy does ? dancing, smiling, and generally having an awesome time.

IKEA announces bed canopy recall

IKEA has recalled its range of bed canopies designed to suspend above children?s beds following reported cases of injuries and entanglement.

 

Free Printable Activities

Keeping little hands busy

Free printable acitivity pages like colouring in, cutting, word finders, mazes, maths activities and puzzles.

 
Advertisement
 
 
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.