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Idiopathic Intracranial Hypertension Anyone???


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#1 wifey101

Posted 07 December 2006 - 08:28 AM

Hi everyone,

Wondering if anyone on here has Idiopathic Intracranial Hypertension alos known as, Pseudotumor Cerebri, or Benign Intracranial Hypertension.

I have recently been diagnosed and I am pregnant with number 2.

What is your treatment?
Have you had any vision loss?
Have you had a shunt inserted into your brain?
Have you had an Opthamic surgery?

Lots of questions I know, but my mind is spinning, and the thought of going blind is not a pleasant one.

Thanks,

Erin x

#2 wifey101

Posted 22 March 2008 - 09:35 PM

Hi,
I posted the above ages ago....
Just thought I would bump it up as I am having some surgery on Thursday.  cry1.gif

#3 Guest_toobusy_*

Posted 27 March 2008 - 06:54 PM

Sorry - can't help with this, but just wanted to wish you luck for the surgery - which was today!  So, I hope it all went well and the docs explained everything to you.

Kind regards, Regi

#4 wifey101

Posted 31 March 2008 - 09:45 AM

Thanks Regi, all is well.
Have a trendy new haircut, and 25 staples!! LOL

#5 Guest_toobusy_*

Posted 31 March 2008 - 10:22 PM

Glad to hear it...  Hope the haircut suits grin.gif !

Cheers, Regi

#6 hopeful81

Posted 11 April 2008 - 01:43 PM

Hi,

Just saw your post and wanted to say glad it went well.

I have idiopathic intracranial hypotension (ie the opposite to you). I assume you had the shunt inserted?

All the best and a speedy recovery to you.

#7 bevan78

Posted 06 May 2008 - 06:00 PM

My Wife has just been diagnosed with benign intracranial hypertension, I would be interested in chatting / emailing you.

Bevan
Cairns Australia

#8 miss1

Posted 01 June 2008 - 01:40 PM

hi

I have just been diagnosed with this two days ago.

Did you try the medication before you had you shunt inserted?

I would also be interested in talking to you about this because there doesnt seem to be much info out there.

Ta

#9 wifey101

Posted 25 June 2008 - 07:11 AM

Hi Miss1,
Yes I tried Diamox before the shunt. It didn't work!
I was having therapudic LP's every 6 weeks when pregnant with DS2. I was diagnosed at 9 weeks of pregnancy.

My discs became really bad, the shunt was a last resort to save my sight.

The shunt has been fantastic. I feel like a new person, and that I have my life back!!
I'm sorry you have been diagnosed with this. It really is a horrible horrible way to live.
There is not alot of info out there, and I would suggest you do some of your own research and carry it with you. Unfortunately when presenting to CAS the Nurses and Docs have no idea generally about BIH. They just want to give you lots of drugs... which although helps with the pain what you really need is a LP..... they generally put off doing them for as long as possible. (I got to the point where I would direct them where the needle needed to go in!!) wacko.gif
Get a good Neurologist, Neurosurgeon and Opthamologist is my best advice. I don't know where you are but my Neurosurgen is one of the nicest people I have ever met. He changed my world and for that I will be forgever greatful.

Goodluck- Hope Diamox works for you, and you don't have to have a shunt, but if you do it will be fine!! original.gif
x

#10 yasmensmum

Posted 09 September 2009 - 09:24 PM

Hi, i was diagnosed with BIH back in 2000 and have had many things done to try to combat this condition. I am more then happy to help with questions if i can. I along with my doctor have also put together a survey that we are trying to get as many people with BIH to fill out as we can. If you are interested in helping out that would be great. And as soon as i put your info into the survey i will send you a copy of the results. I found that seeing the results of the survey really helped me to understand what this condition does to us and what to expect.
If you can help, i along with many other people would be forever grateful. If you are interested in filling in a survey and receiving the results, please send me an email at yasmensmum@yahoo.com.au and out survey in the subject please.
Thank you in advance.

#11 Sunflower80

Posted 10 March 2010 - 09:53 PM

Hi

This came up as I was doing some research for myself. I am wondering if anyone can give me their thoughts on what I am doing.

I have a seven month old baby and throughout my pregnancy ALL my doctors were expecting the BIH to get worse. And so I waited for that to happen and it didn't! In fact I don't think it has come back. I am considering not returning to my doctors, but am scared that if this goes unchecked that it could get really bad before I notice.

What are your thoughts and does or has anyone set up some kind of support group/Facebook group, it would be so great to be able to talk to people who understand how this feels.

Nat

#12 Just Mel

Posted 21 March 2010 - 12:01 PM

I have just been discharged from my Neuro after shunt surgery in November, my Opthomologist (Sp?) however, won't discharge me as I will need to get my eyes checked every 6-8 months for the rest of my life. Apparently, the eyes will be the first place to start going if the BIH comes back.
I would be inclined to go to the doctors and just keep an eye on it, to be on the safe side, it is not worth risking your sight or anything.
That is great news that it didn't come back when you were pregnant though original.gif

I am in a couple of different facebook groups plus a forum, I will come back later with the links original.gif

#13 Just Mel

Posted 23 March 2010 - 02:51 PM

Okay, found one: http://www.facebook.com/?ref=logo#!/gr...?gid=8200839129

Am still looking for the others, it is really time for me to clean out my bookmarks! LOL

#14 3littlepumpkins

Posted 10 April 2010 - 07:18 PM

hi there sorry just saw this post

i have BIH have had it since april 2005

BIH is so different for each person which sucks when trying to get more information

I really really want to fly to QLD in June but dr says i can but I could have an attack grrr so I have to toss up weather to risk it cause theres no way other than try to find out if I can fly

I am very very thankful since having my lumbar puncture Ive only had a few flare ups

the dr's just put me on a few meds for a few weeks and it seems to settle (pain killers, a sleeping tablet and a tablet to reduce fluid)

I found out I had this after I had a m/c, after the m/c I started going blind in one of my eyes and the migraines where unbearable I was pretty ill when I had the LP

then I fell pregnant with my last baby thankfully I didnt have any major flare ups but the dr's were all waiting for it to happen

Im not on any full time meds (only when i have flare ups) and I am trying very very very hard to lose weight which seems to help but even losing weight the flares up happen because as the dr puts it my body goes into shock grr

my only issues are the constant headaches but drs wont do anything for me until it starts effecting my sight like back in 2005

wifey101- Im so sorry you had to have the op but congrats on it making you feel so much better bet its worth it

#15 Dreamer4

Posted 14 June 2011 - 01:46 PM

Hi there,

I am newly diagnosed with BIH in Nov 2010 and now pregnant. We were just at a point of trying when all the BIH happened.

I have finally found a great Nuero - opthamologist. She does not appear too concerned? I stopped the Diamox.. here's hoping all goes well??

Nervous

#16 hopeful81

Posted 14 June 2011 - 07:02 PM

Just wanted to say all the best Dreamer4!

#17 mumstrosity

Posted 24 June 2011 - 12:58 PM

I was diagnosed in 2006. I recently started an aussie IIH forum, as an extension of a Facebook group I created a year or two ago.

I'd love for you to come join us http://www.intracranialhypertensionaustralia.com


~Liz

#18 elle_t

Posted 06 October 2011 - 04:34 PM

I know this post is old but I also have BIH and would love to chat with others

#19 mummy nicki

Posted 24 November 2011 - 03:04 PM

I too have IH.

Unfortunately for me I was transfered from one hos to another where they dont believe me as they still have not recieved any records or diagnosis even tho it should have been there 15months ago +.  I am on 100mg of mscontin twice daily to deal with the headaches.  My headaches are terrible even tho due to several lumbar puncturs it is no longer affecting my eyesight tho i have perm. damage. My neuro/optha at the new hos told me she wouldnt believe the diagnosis until I had, gotten over my depression(of which i am only depressed due to the condition) got someone else to look after my children, get a minimum of 8hours solid sleep each night, do not work, do not study at uni, and lose more weight and stoped all pain killers.

The weight loss did nothing for me, lost 25kg. Stopped uni. Nothing. and I am not getting rid of my kids infact I am preg with my 3rd. I got over having IH run my life. we were TTC when i was diagnoised and told not to.  I still suffer from breakthru pain, and really dont like being on the mscontin but it was the onlything that allows me to function. I nearly had my children removed from my care due to this illness. I am allergic to diamox, it makes me vomit and vomit and gives me horrid headaches.

I dont know what they will do regarding the mscontin and 3rd trimester as my baby will be born addicted and in withdrawl and it can kill us both in labour. I am hoping they will figure out some sort of pain relief and give me a lumbar puncture in 2nd tri and wean me off the meds and sort out some sort of med I can take for bad days and attacks (tho none of my doctors believe I can have bad days or attacks, it should just get worse and worse, not worse and better and worse again, does anyone else have this??)

My GP reffered me to the high risk pregnancy unit but Ihave heard nothing from them, sorry I got a letter saying they recieved the refferal and someone would look at it at somepoint and get back to me.

IH ruined my life, and I have now decided to take it back. I am going to be a good mother to my children, I am going to fix the problems it has caused financially (i have no idea how) and fix my relationship with my DH.

Unfortunately as I am a public patient I cant pick my specialists and a neurosurgen wont even see me until the b**ch neurologist sends me there. She is going to flip when i go in and tell her that i am pregnant. but she can go to hell, and hopefully pass me on to someone else.

Also I am haivng BAD BAD headaches with this pregnancy and Morning sickness. but not IH headaches if you know what I mean?? has anyone else suffered this?

Any advice for me??

#20 popsicle :)

Posted 24 November 2011 - 03:33 PM

Hi all,
I just saw this topic pop up on the hot topics and thought I'd come in for a read.

I was diagnosed with IIH in Aug/Sept 2008 and I have to say that my experience seems to be alot different.

It started all of a sudden.  I got a really bad headache, dizziness and loss of strength in my left arm.  I went to various drs who all diagnosed me with the flu without the flu, inner ear infection in a pinched nerve in me neck.

2 weeks later and I started to get double vision and vision loss.  After much anst and the drs witnessing my left eye turning inward I was finally admitted to Royal Darwin Hospital (who had never seen it before!).  Just by fluke I managed to come under an awesome professor at Menzies (for whatever reason prob cause the hosp drs had never seen this before).  He got on the phone to 2 awesome drs from Royal Adelaide who diagnosed IIH.

I was in hosp for about 2 weeks and had lumbar punctures every 2 days.  I was sent home on Diamox and told to loose about 10kgs.

Within 3 days  was admitted back to hosp as my left eye had turned in again - more lumbar punctures.  This time the decision was made to send me down to Dr Sandhu and Prof Cromptpn at Royal Adelaide.

As soon as I arrived Dr Sandhu (my saviour!) stuck a camera up into my main blood vessel of my brain told me I as the highest pressure he had seen, he was going to place a stent in the blood vessel to keep it open.

2 days later I went in for my stenting, I came out with no sent as my pressure had increased even more so they couldn't even get in there.

2 days after that prof Crompton performed a fenestration on my left eye to decrease my pressures and I had a real risk of going permanently blind.

1 week later my stent went in without a hassle and I was allowed back home.

I can honestly say it was the most horrific thing I have ever had to encounter, but 3 years later and my eye sight has returned to almost perfect and I haven't had a headache since.

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.

I have since had my first child (under the very careful eye of my ob and Dr Sandhu) and have put on the weight again.  So I made the decision to undergo Lapband Surgery to ensure weightloss.

My surgery is booked in to 18 Jan, so hopefully my IIH doesn't rear its ugly head between now and then.

#21 Jamandcream

Posted 24 November 2011 - 03:45 PM

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.

#22 mummy nicki

Posted 25 November 2011 - 07:49 AM

QUOTE (popsicle :) @ 24/11/2011, 03:33 PM) <{POST_SNAPBACK}>
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.

#23 popsicle :)

Posted 25 November 2011 - 12:26 PM

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.


#24 trillfam

Posted 26 February 2012 - 10:36 PM

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.

#25 muminpain

Posted 16 March 2012 - 01:24 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.






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