Hi everybody, I'm Carolyn (mostly known as Caz) and I was diagnosed with IIH a few weeks ago. 

I have actually been quite lucky on my journey so far: we now know (in hindsight) that although I have had some subclinical signs of raised ICP for probably a year or so now, once my papilloedema kicked in, I was diagnosed pretty quickly thanks to my fabulous mum, who is an orthoptist. When I presented to my GP with my concerns, I was dismissed as having a sinus infection (even though I didn't have a runny nose!) and she said that's what was causing pressure in my ears and head, so she sent me home with some nasal spray for allergies. When I spoke to my mum and told her my thoughts and that I was concerned I might have IIH, especially with the eye symptoms I was having, she told me to go and see an optometrist instead of a GP and tell them that I thought I had papilloedema. I did so after work that day, and although the optometrist was initially skeptical (I know medical professionals HATE it when patients consult with Dr Google and attempt to diagnose themselves - I work for a bunch of them :lol:) it turned out I was right and he sent me straight over to the eye hospital that night. The next day I had an MRI + contrast to rule out thrombosis or tumor, and then I was given the diagnosis of IIH and started on Diamox. They attempted to give me an LP the following week at the hospital, but after 9 attempts they gave up. I have now seen my own neurologist and I am waiting for him to organise an ultrasound guided LP with the radiology department at his hospital. My ophthalmologist is fortunately the doctor who my mother works with, so I am able to see him reasonably regularly and stay in contact, and as of yet my visual fields look pretty good and the papilleodema is said to be quite moderate. 

So far, I am struggling with work. I had a week off whilst all of this was occurring, and I felt like I had started getting better, but now that I'm back at work full time, I am finding my pressures feel almost as bad as they did when I was diagnosed and the pain is back much of the time, as is the tinnitus (plus the glorious tingly side effects from the Diamox). I find myself getting frustrated at work, because I work in a psychiatric hospital and when all the patients keep coming up to me going "Ohh, you're looking better, how are you feeling?" I kinda just have to smile and nod and say some sort of pleasantry, even though what I am really thinking is "Actually, I feel like crap and I'm in a lot of pain!"   

My Diamox has just been upped to 250mg 3x a day, so I am hoping the extra tablet will make a difference. I have no idea when my LP will go ahead, which is a bit frustrating. I am also finding that I feel quite out of breath when standing up and moving around - is that a normal IIH thing? Or perhaps related to the Diamox? I was also recently started on Coversyl because my GP is concerned my blood pressure is too high, so I wonder if that might be interacting with the Diamox... ohh, it's all too hard! 

On the plus side, since all of this started, I have lost 9.1 kilos/20 pounds so far!dance

Hi Carolyn, welcome to the group! And, congratulations on the weight loss!!! Yes, some days it is all WAY too hard, but it seems like you've kept a positive attitude..it definitely makes a difference!

Stress and activity can increase symptoms, so I'm not surprised you have more difficulty since you returned to work. The Diamox could definitely be causing some of your symptoms. If they get worse or don't improve after awhile, talk to your doctor about other options. I'm actually surprised they kept you on it, if concerned about blood pressure..make sure they're monitoring it closely!

Take a look around the site..maybe start in Useful Guides and Print Outs for ideas on how to manage symptoms and talk to folks about IIH. Let us know if you have any questions and we'll do our best to help you find an answer.

Take care,
Julie

Hi Carolyn

Not sure I can answer your questions, but wanted to say hello and much respect for the 9 attempts at the LP.  I recently had 7 attempts (I was willing to carry on but they weren't), then went for a guided one.  At which the much more experienced radiologist went straight in, first time, without even needing the scan in place.  I hope you get yours soon and it is smoothly done.

Thanks Julie and minnie, it's so nice to have a bunch of fellow IIHers to mix with!  

minnie, I had very similar experience. I got my lumbar puncture done today at the hospital. It was a guided one, and it was miraculous - I was lying there bracing myself for the inevitable pain when the doctor told me we were all done, and I could have jumped up and kissed him! I didn't feel a thing, it was brilliant.  

My pressure was 24, so it confirmed the IIH I think, though I do need to wait for the results of the screening of the CSF first. I am feeling much better now than the last time I posted. Although I still have tinnitus, visual symptoms, head pressure etc the pain has really eased off and I gather that's a huge part of successful management. My blood pressure today at the hospital was quite good too, so I think that they finally have the right balance of Diamox to Coversyl; it was hovering between 115/75 and 120/80.

Anyhoo, that's all from me for now. Thanks so much to you all for the welcome and I look forward to getting to know you over the course of all of our journeys. xxoo 

Hi Caz and a warm welcome to the group. I know what you mean about work it's really difficult trying to find a balance when no one is very understanding. Put together a booklet using these pages Information to give people to explain IIH 

In our new booklet that will be published and printed this year, fantastically written by Victoria Taylor she advises that you also write your own documents. She recommends you divide it in to sections of Good and Bad days and to explain in detail your symptoms and how they make you feel. Make it clear descriptive and precise. Then you have two booklets to give people that need to know about your IIH. Keep an original so that you can make copies when you need to, and add to if necessary.

Congratualtions on losing weight, and don't be disheartened by others. Once you give them your documents it is up to them to read them and be understanding. Ear plugs can help with the tinnitus, and here is the link to Australian Hearing who will be able to give you advice and help.

Thanks Heidi, the documents in your link are brilliant - I'm going to print out a bunch of them when I get to work tomorrow. 

Hello Caz and welcome to the forum.
Sounds like you have lucked out and have found a good group to care for you.  
I hope that your current meds will keep your pressure under control.  It doesn't happen often, but it does happen. Keeping fingers crossed for you.