[Jamandcream]

I finally got diagnosed this year after much fluffing around of doctors for a couple of years. I am on diamox and got told to lose weight and haven't had a headache since. My eye sight hasnt seemed to get any worse, maybe a little better if anything.

I only have it in one eye though. My left eye is the only one affected which apparently is uncommon but can happen.

[mummy nicki]

Is anyone else stented? If not why not? I am finding that my procedures don't seem to be the norm and I am wondering why as it seem to have worked for me.

Hi there,
I am not stented as I am fighting with my neuro/eye doc. I was diagnosed about 3.5years ago at the Mater hospital in brisbane after seeing a private eye doctor who sent me there as I could not afford the tests he wanted me to have (cat scan, mri, lumbar puncture). Originally my normal optometrist sent me to the private eye (lol) as I was having double vision badly and my eye was turning in slightly (so not as bad as yours), prior to that I had been struggling with vicious migraines for a couple of years (so probably the pressure building). The mater was good, they kept me in, drugged me up (which did not work) and gave me a lumbar puncture which measured the pressure so high that it was higher then what they can actually measure. they sent me home after this with an appt to see the opthamologist (?? think thats how you spell it) as he had the most dealings with IH. He was an a*se. Treated me like utter sh*t. I left every appt with him crying, and tho I have had vision changes still over the years (I had near on perfect vision and now it sucks but nothing major apparently) they didnt consider the IH to be rearing its head, except I was at my doctors all the time complaining of migraine or in there vomiting and extreme pain and my DH having had to leave work to come get me and the kids and my GP would sedate me basically, and Id be out for 24hours which usually helped although I did not like being out like that so I fought it as much as possible or I would have been there for that much more often.

The Mater Eye doc reffered me to a neurosurgen at the Princess Alexandra Hospital saying they didnt have one at the mater for a shunt to drain the excess fluid into my bladder or tummy and I would then basically pee it out (I later found out the mater does he was just getting rid of me, as now his clinic doesnt exist tho only to me cos I was demanding something be done to get my life back as it was costing me a fortune and I nearly lost my kids cos I was barely able to look after myself let alone them.) However when I got to the PA hos, they did not have any record of me and none of my charts from the mater. They didnt believe me. My GP sent a refferal to the neuro/opthamologists at the PA to see if they could help cos they were the better docs with more knowledge and they were the ppl who literally said "you dont have anything wrong with you, you are just a drug addict" (as my doc put me on mscontin to help deal with the majority of the pain as the headache never left, just varied in intensity. MSCONTIN is what saved my kids and my life as I was sucidal cos my life consisted of pain and the inability to do anything for myself let alone my kids. after saying many other things in a horrible nasty way I left their clinic and burst into tears as I had be so hopeful that I was finally going to see someone to help me.

I dont like being a huge amount of painkillers. I know I am physically addicted as I get withdrawl symtoms like pain etc when I forget a tablet but not until hours after Iforgot it. If I ever became emotionally addicted My DH would drag me to the GP and demand they do something about it as it is the one thing I have made him promise to do that and to look after the kids if I ever do somthing stupid (which I wont now). So I am stuck waiting til Jan 2012 to see the b**ch again at the PA and I cant wait to tell her that I am pregnant here is my records from the mater, go eff yourself.

I made a decison to not let the IH control me and my familys lives any longer. I did a lot of research and we decided to have another baby and just let the medical mob deal with it after the fact as they would never agree to TTC. The first month we tried we fell pregnant which is amazing, as I have ENDO and PCOS and I have a high miscarriage history but I am now 6weeks and 3days and hopeful.


Popsicle I believe you had a worse case then mine, and from all my research this is half the problem, that there is not enough medical study and research to tell us why there are so many variations to everyones personal story. Also I believe you were lucky to have gotten ppl who were interested and researching it so they knew what they could do to save you all these sorts of problems. I wish you the best of luck. And I hope to god someone will help me oneday.

[popsicle :)]

Oh Mummy Nicki no words can describe how I am feeling after I read your story!

I do know that during my stay at Royal Adelaide I had numerous training and qualified neuros and opthamologists come talk to me and look at me for their studies. At the time I remember thinking "I know I'm unique, but really do I have to be this unique! hahahaha.

I can not praise the service and compassion I received from everyone at the Royal Adelaide enough.

In a way I am lucky that I do live in a small place like Darwin. Although our medical system is a bit to be desired sometimes, I do take comfort in knowing that if something is really wrong with you they will just stick you on a plane to the people that do know, whether it be Adelaide, Sydney or Melbourne.

I know I am very lucky to have got the drs I have and they took my condition very seriously. Just prior to my stenting my blood vessel in my brain was completely blocked off, so maybe I had no other option but to be stented.

I still contact Dr Sandhu with questions and advice and he is ALWAYS happy to talk to me and takes the time to email me answers. He really is so so so good.

I really don't know how I would have coped if he was nasty or didn't believe me. That must be so frustrating for you.

I really do hope that you find someone who does take you and your IH seriously.

[trillfam]

Wow MN - that is really sad to see the way you have been treated. My 17 year old daughter was diagnosed last week. We were sent from an optometrist appointment directly to an eye specialist. Within 24 hours we were at a clinic at the RBH with CT scan etc done and her booked in for LP.

We had absolutely no idea that there was anything wrong with my daughter, just that she had been getting a few more than usual headaches at school and we thought she may need glasses. Although the whole thing was quite harrowing I cannot say enough good things about the staff at Royal Brisbane Hospital. They were wonderful and informative the whole way through. There was no messing around with a diagnosis - obviously ruled out all the nasty stuff (tumours, bleeds etc) first then did the LP - allowed me to stay with her throughout all procedures and tests. She is home now and pretty much back t normal. Whilst I know you cannot 'hospital shop'I really hope that your experience will improve and that things will get sorted.

[muminpain]

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.

[muminpain]

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.

[Butterfly*77]

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.