Three weeks ago I went in for my two year eye test (as i wear reading glasses) i went to a different Optometrist this time, who suggested he do an Xray at the back of my eyes etc....The Xrays showed that my Optic Nerves on both eyes where swollen. He did a field test and showed loss of peripheral vision, who then made an appointment with an Ophthamolgist....the very next day after seeing my Opthamologist , he booked me in to see a Neurologist - I was deemed and emergency case.
So next week, im off to have an MRI and a Lumbar Puncture.....my neurologist, believes is IIH - so ive joined this group for support and to have since found out that there is no cure or cause, hopefully this site will help with support knowing im not alone.


for reading

Maree

Absolutely! I've found a lot of support and helpful information here. Diagnosis can be a very overwhelming process, but it sounds like you've at least had contact w/ professionals familiar w/ IIH. Good luck w/ your tests and keep us posted!!!

Julie

Ugghhh just had my MRI scan - wow never had one before! now to wait for results, hopefully they dont find anything (like tumour) cause OMG that would be devastating news. So if they are clear then im off for a lumber puncture on thursday and neurologist friday for results....another long week ahead.

hope everyone is well x

Yeah, MRI's can be grueling..I tend to request the open MRI's b/c they're not as confining. I'm also not sure where you'll being having your LP, but I've found that I have a better experience if I request no students or residents. You have every right to request someone that knows what they're doing. If it is IIH, hopefully you'll find some relief once they drain a little fluid. Hang in there!!

Julie

Hi Maree and a warm to the group. I know how you feel when you're first told you have IIH and you're relieved it's nothing more sinister like a tumour, and then to be told, " But there's no cure", that on top of all the tests is overwhelming, and I'm sure like I was at the time, you don't know how to feel about it all.

I agree with Julie, you should insist on your LP being done by someone with experience of doing them, it does make it less stressful knowing that they have done them many times before.

Hopefully once it's a firm diagnosis of IIH, and they put you on the right medication and treatment plan, you can start getting your life back together again, and of course, we will be here to help you and support you, as well as answer any questions you might have, and even for when you need to come and have a good old rant about it all.

Keep positive and strong

hi all, had my lp - was actually a breeze, done under xray....had headache afterwards, but slept it off....pressure was 26 and went down to 23 so now off to neurologist tmrw morning...

I'm so glad your LP went well. I'll keep my fingers crossed for the Neurologist tomorrow for you. Let us know how you get on

errr sufferring from major LP headaches. day 3 and still no relief....how long with they last?

The best way to cope with a low pressure headache, is to stay laid flat, plenty of fluid and some painkillers. If the pain gets worse or continues, get in touch with your doctor so that he can arrange for something more effective or do a Blood Patch

Hope this helps

Thnks Heidi also will start Diamox monday morning. 1/2 tab twice a day for the 1st week then up it to 2 tablets twice a day there after....not looking forward to the side effects

OMIGOSH - just had a blood patch and i feel better already - unbelievable....now to tacke the Diamox tablets which i started on today

I'm so glad you're feeling better keep us posted on how you get on with the Diamox.

Well im on half dose this week, 250mg then up it to 500mg next monday....the excruciating headaches are gone now have lots of pain behind my eyes errr not sure if this is normal

Wouldn't like to speculate but if it continues go an see your doctor

been to see my GP she suggested 1 tablet of panadiene forte with 1 tablet of panadol, after 4 hours the pain has subsided

tomorrow is another day

Oh fantastic!! I hope that it keeps up for you.

Maree, I'm so glad you're finding some relief..hopefully this will be a good combination for you!

Thank you so much - still have mild pain behind my eyes, left a message for my neurologist, still waiting for a call back :( started Diamox 1/2 strength - this coming monday will be on full dose 500mg per day....apart from pins and needles in feet (with a burning sensation) esp thru the nite I also feel very lathargic, but thats part of it i guess till i get used to it....so far i cant complain, have mild headaches, but after my LP headaches all other pain is pretty managable.
thanks for you support, hope everyone is feeling ok, i know its hard

Glad you're starting to feel moderately better, hopefully the side effects will settle down, keep us posted on your outcome with your Neurologist.