[Sunflower80]

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

[Just Mel]

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

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

[Just Mel]

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

[3littlepumpkins]

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

[Dreamer4]

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

[hopeful81]

Just wanted to say all the best Dreamer4!

[mumstrosity]

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

[elle_t]

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

[mummy nicki]

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??

[popsicle :)]

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.