hi everybody i'm new to this whole area and pretty much terrified. I went to my opticians and was referred to the hospital for a check up and before I knew it I was in a hospital bed. I had a lumber puncture (OUCH!!!!!!) and had a definite diagnosis of IIH. Due to the extreme uselessness of doctors i have been given very little information, fortunatly my aunt also suffers from IIH and has been able to fill in a few gaps so any information would be amazing

So hello everybody and its very nice to meet you

A very warm welcome Amel , I'm so pleased you've joined us. I still find it unbelieveable that there are Doctors who still don't have the faintest idea about IIH. It isn't much different now to when I was diagnosed in 1989. You would think that with the speed medicine moves and the internet, that they would be more uptodate.

I'm sorry your Aunt has IIH, but so pleased that at least you've had someone who understands and was able to give you some information. We've lots of information and helpful booklets, and our members are very supportive and friendly, as you will see. Don't be afraid to ask any questions in the Group Huddle, you can even have a rant in there because we're all here to listen so to speak. We like you to have a voice here.

If you have any problems with anything you can PM any of the Moderators or Admin Team.

Heidi

Hi Amel! *big hugs* Welcome to the group! I'm so glad you've found us, and I know you'll find lots of information and support here.

I know it's scary when you're first diagnosed and are just so unsure of what to expect. This site is a wealth of information and experiences of our members ... the "Useful Guides and Printouts" section is a great place to start. And just let us know what questions you have, we'll all be happy to help as much as we can.

I'm guessing from your intro message that the optician noticed the swelling of your optic nerves (papilledema) and referred you for evaluation at the hospital. Were you noticing any symptoms prior to the optician finding it? Are you dealing with pain, nausea, visual changes, whooshing sounds in your ears?

What treatment are you receiving now? Are you on Diamox? I was diagnosed in November 2009 and have done well on Diamox since then.

It's interesting that your aunt has IIH too ... how is she doing? How long has she had it?

Sorry to bombard you with bunches of questions! Just hoping to understand your situation better. Again, welcome to the group. And I look forward to getting to know you better here on the forums. Stay strong! *hugs*

Hi Amel and

That is truely a gift that your Aunt can help you through this process. So often the family members have no clue what the person is going through. I am sure she will be very helpful. And us too! We are not medical people, just regular folk who have had the chance meeting with IIH.

Thank you so much for such lovely warm greetings i'm so chuffed I happened upon this site and I will definitely recommend it to anyone I come across with the disorder. BananasMom I had been dealing with all those things since I was a very young child but I just thought it was normal and so I just ignored it, also I have never actually heard of IIH until I was diagnosed, I have also experience blackouts since I was 14 but again I ignored it. My eye test was just a routine check up, I had an accident on my eye when i was 6 or 7 where i was stabbed in the eye with a pen so i attributed a lot of my symptoms to that, but fortunatly the optician took a much closer look at me than previous opticians and it was her who started the process. The medicine i am on is called Acetasolomide and i was on 1000mgs but now im on 750mgs and i must say i feel much worse now that i did before i went into hospital but im assuming that is because i have only just started treatment.

My aunt is getting on okay she was diagnosed much earlier but because there is so little information her condition was left to deteriorate and she wound up contracting bells palsy. She is okay now though and has almost all of the movement back in her face thankfully, and now she is on a small dose of medicine to control it.

I know the pressure in your head is supposed to be 14 but mine came out as over 50 and hers was over 70 so were very fortunate to have been caught in time, and i also understand it is very rare to have two people related with the same condition.

I think everything that your doing here is amazing and i would love to help raise awareness in any way i can =] and thanks again for your warm welcome I hope everyone is well and happy and i have a bucket load of questions to unload on you all so i will apologise in advance

all the best

Amel

Amel, interesting that your pressures have been so high, but one thing we have learned is that there is no magic number as to what is normal!! Most medical folk will say that anything above 25 is for certain, and between 20 and 25 is borderline, but what is "high" for one is "low" for someone else. Makes things even more confusing, especially for those who get stuck with docs who refuse to think outside of the box.
I wonder if the BP that your aunt had was really Ramsay Hunt Syndrome (Shingles of the ear), like me!?! It is unusal to stay on any kinds of meds after the fact for BP but not for RHS (caused by the zoster virus).

By the way, Acetazolamide is the same thing as Diamox (generic version). If you are feeling worse it may mean that you need to go back up on the Aceta.. I have tried many times to decrease and even go off of it, but my symptoms come creeping back so I am just staying on it for awhile.

What other treatment are you doing?

Hi Amel, sorry my welcome is late..just wanted to say a quick hello and let you know we're glad you're here! Feel free to ask any questions you like..the Group Huddle is a great section for questions and rants. We'll help you the best we can!

Take care,
Julie

Wylee: the meds she is on is for her IIH but they took so long to get their finger out and get her sorted but she is fine now =] she was hospitalised for a few days but is back to her old self and i have a check up at the end of the month so i will mention that , it just seems for every step forward your thrown back by ten =[ and at the moment that is the only treatment im on.

thanks again everyone for your kind messages