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 workplace isn't always a friendly place for pregnant women. Yet working women inclined to conceal a pregnancy from prying coworkers may be better off opening up and carrying on, according to a new study.
To celebrate Mother's Day this year we are giving you the chance to win one of five great prizes simply by telling us your story.
There is so much pressure about having a baby who sleeps 'all night' , it's no wonder you worry about your baby if she wakes in the night.
What makes some names have comebacks while others silently fade into oblivion? A few factors come into play.
Dads can have many reasons for not wanting their partners to breastfeed their baby, but both parents should learn more about it before making a final decision.
Most new mums would recoil at the thought, but Sarah Stage has shared a post-pregnancy selfie just four days after giving birth.
If you're a new mum and feeling ignored by the older mum/the old hand/the has-been, please know, it's not you, it's me. Blame the last child parenting fatigue.
Having a new baby isn't tiring - it can be downright exhausting.
I was on a high. I'd done it all by myself with no help from anyone.
We're big fans of kids' birthday parties - but this is one bash we're glad we didn't get an invite to.
Everybody loves a bargain - including the Duchess of Cambridge.
A lengthy note put on the window of a fish & chip shop has gone viral due to the writer's serious doubts about the romance of travel.
Pregnant women are under pressure to do all the "right things" to have a healthy child. It results in women feeling judged about their decisions.
Giving your child a sibling when you don't want to have another baby can be a complex issue.
The mother of missing toddler William Tyrrell says she has a vision that somebody "picked him up and moved him on ... that's the only way ... to explain for him not to be there".
Most 23-year-old blokes spend their hard earned cash on fun times with mates or romantic dinners with their girlfriend, but not Tommy Connolly.
The first all-female quintuplets born in the United States were delivered last week, at 28 weeks and two days.
He may be less than a week old, but baby James Hunter has already helped his model mum silence her critics.
A recent Reddit thread has revealed some of the more creative names in the world.
A US woman awakened this week from a four-month-long coma that doctors had feared would be permanent and learned that she had given birth to a baby boy, according to her family.
Posting a lot of baby photos doesn't make you a bad person. It may make your Facebook feed a little irritating, but it doesn't make you a bad person.
It's time to shift the focus off what dads aren’t doing and shine it on what they are.
If you're only just joining the modern cloth nappy movement, or would like to spruce up your collection, we have to introduce you to Designer Bums.
When you’ve just had a baby, having sex isn’t usually top priority. In fact, for a lot of women it rates about as appealing as changing another dirty nappy.
Is it acceptable to use these car parking spots when pregnant? How many of us would admit to doing it?
Fertility doctors have described their "most extraordinary case" - creating a healthy baby from sperm taken 48 hours after a man had died.
Sign up to receive 30 amazing tips and ideas for play with baby during the month of April and submit a picture or tip on our social wall for a chance to win an amazing Fisher-Price prize pack.
Top 5 Articles
You have less than a week left to win your child one of five Fisher-Price toy packs valued at over $600 each - hurry, enter today!
Let’s keep talking about these issues and not allow them to be put into a neat little box that’s labelled ‘Fix childcare and everything is solved’.
When trolls felt the need to comment on 35-year-old singer-songwriter Pink's weight, her answer was an awesome ode to body love.
A national chain of fertility clinics is offering egg donors a $5000 payment to cover their expenses, a first for Australia which is raising concerns the money could act as an inducement.
Australian officials could do nothing to stop an Australian couple from abandoning their baby son, born through surrogacy in India, after they decided they did not want to bring him to Australia.
Individual choice works for haircuts and handbags, but not for preventing infectious diseases that kill kids.
If there is one thing Leilani Rogers knows about childbirth, it is that no two deliveries are ever the same.
Note to self: less sewing, more life. Not the party dress, but the party. The toddler, as usual, has it all figured out.
In 1965, Zella Jackson-Price was told her premature baby girl had died shortly after birth.
New research suggests that taking specific pregnancy probiotics could be the answer to a range of common pregnancy side effects.
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.
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.
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.
Last week to submit a picture of your baby at play for your chance to win. Visit the Play Wall to view our recent entries.