Back in July, I started getting a stiff neck and constant headaches. -actually thought I gave myself whiplash from hitting the breaks a little too hard one day, well I guess that theory was wrong! Shortly after, I started to have little vision "episodes" where everything would go dark for a few seconds and they come back- kind of like when you are watching a fade scene on tv. I found it rather amusing. How was I supposed to know it meant I had a rare neurological disorder? After a week of being in constant pain from the headache both my eyes blacked out, I felt tingling in the back of my head, was disoriented and I just felt kind of wierd, ok, truth be told, I thought I was having a stroke! I went to the hospital and after a clear CT scan was given 2 doses of IV migraine meds (which did help with the headache) and sent on my way.

After a week of more visual episodes, I finally called my optometrist and made an appointment. Once she looked in my eyes, she said that I had a serious problem and would be referring me to an ophthalmologist. She didn’t have too many answers to my questions ( which was why she was sending me to another Dr), and said the office would call me with the apt. A few days later, she said she was forgetting about the ophthalmologist, and would be sending to me to a neuro- ophthalmologist in another city. Lucky me!

The next week ( Wednesday) I trekked off to the eye institute to have a field vision test, then was to meet the neuro just after. Went through all the standard eye tests, then he told me that I had several haemorrhages in my left eye and that it was much worse than my right, and that I would need to have an emergency MRI and LP. WHAT? It kind of threw me. An apt was made for the MRI later that evening ( I wonder who they bumped for me) and I was told they would call me then next day about the LP. My hubby and I decided to just get a hotel room rather than drive all the way back home. The neuro gave me his card with IIH written on the back so I could look it up. He said it was usually found in overweight women (which I am), and that sometimes the MRI shows a blockage in which case he would put a stent in, he mentioned something about shunting, but I didn’t understand cause I was a bit overwhelmed by that point , and then he told me it would be helpful to lose weight. I would have to take some time off work (I thought that he meant just for the tests and follow up visit, how naive of me!) I was given a prescription for acetazolamide ( to start after the LP) told to go back to the eye institute for pictures and they would call me about the LP. I would not be seeing him again until next Tuesday but I was to call him with any concerns. (he is semi-retired and only works in the office 2 days a week). If that all sounded kind of confusing they I have accurately described my first visit with the neuro!

The next day was my LP. It wouldn’t have been that bad if they didn’t jab the needle into bone a couple of times, ouch! Opening pressure was 40, they brought it down to 19. I wasn’t expecting to be so tired after, I was thinking they drained some of the life out of me along with the CSF.

My second visit to the neuro, there were less haemorrhages but no change in swelling, I was told not to do, well anything. No lifting, no quick movements, no exercise except for slow walking, nothing that will get my heart rate up ( poor hubby). My last visit, there was less swelling, but I’m still not out of the woods yet. He said the 1st month is critical and that eyesight can go quickly. I am to call right away if there is any change in my vision and he will put a stent in right away ( apparently I have a partial blockage, but Im not sure of what, will have to ask again and get hubby to take notes this time). My next visit is tomorrow, I hope there is more improvement; I really want to get back to work.
I went to the neuro feeling pretty healthy (as long as you ignore the weird spontaneous blindness) but after a day or so of being on meds, and since, I have felt like a sick person. I have little energy and need to sleep often (I started needing to nap before being diagnosed, but didn’t relate it to the vision issues) I wake up feeling nauseous some days, my hands and feet tingle most of the time, the headache comes back periodically, and sometimes behind my eyes hurt. It almost feels like I am going backwards, but I am trying to keep in good humour to get me through.

Hello Jenny and a very warm welcome to the group. From reading your post you have been through a lot and of course you're overwhelmed. I'm sure it's been very frightening for you and having to contend with the side effects from the Diamox, which is very common. If they get too much for you to deal with, have a word with your Neuro about an alternative IIH medication. Sometimes the side effects can settle down.

Don't give up hope of going back to work, as it's early days yet with the medication, which usually helps all those horrible symptoms very effectively. As for a possible stent it sounds like they think you have a blockage and that could be the cause. Hopefully the medication helps.

We have lots of helpful booklets for you and they cover a multitude of things we experience with IIH. There are also booklets from our Partner Organisation the Brain and Spine Foundation.

It does take some time coming to terms with IIH, especially as it changes your life in so many ways, and you have to find a way to adapt to doing things a bit differently, by doing so you can reclaim your life in a significant way. It's not uncommon to have periods of feeling low and depressed, and you're keeping your sense of humour is a very good start.

It also helps to keep your family and friends informed about IIH, so give them as much information as you can, because this will help them to support and understand you better. It's an invisible illness so it's often misunderstood because you dont necessarily look sick. Which is why they need the information to realise that although they cant see you have this condition, they will understand when you become disorientated, forget things, become clumsy etc.

The main thing is to take each day as it comes, and pace yourself. It is better to do little and often than to not be able to do anything at all. Always remember the illness doesn't define who you are, it is merely a part of you, and with tweaks here and there, you will be able to have a fairly decent quality of life.

Please feel free to ask as many questions of us as you need, and we have a chatbox where you can ask to chat to any of the team or members. IT is only for members so it is private. We are here to help and support you, you aren't alone.

Heidi

Heidi, for your support! This is a wonderful site. I have spent several hours reading over the info on here.

I got great news from the Neuro yesterday! He said that I am over the hump and that the swelling has improved. I am allowed to slowly stard doing stuff again, and I can drive again. He was going to make a 2 week rather than 1 week appointment, but because his is away then, I dont have to see him again for 3 weeks. I can also start to reduce my meds form 6 /day to 5 in another week.

Hello Jenny, and welcome to the forum. And congrats on the good news!! cheer

Take things slowly, feel better, and hopefully you'll be back on track again soon.

You may want to ask your doc about the Diamox ER caps if you are bothered by the tingling. The side effects are milder on the extended release caps than on the regular tablets. I find the nausea is less too.