People call me Kristy. I was diagnosed with IIH in July of this year. I had been suffering from headaches for many years but over the last few I stopped talking about it. Tired of doctors brushing off my concerns and throwing prescriptions at me to keep me quiet as well having family and friends tell me that "everyone gets headaches". As a former sufferer of Anorexia Nervosa they were often pushed on to my eating disorder, I would be told that if I ate then my headache would go away, or that it was a symptom of dehydration. I knew deep down this to not be true. Also as a former nurse I knew what it looks like when people show up at the ER with "headaches", it's usually another word for "drug seeker".

How the diagnoses came to be.... One afternoon I phoned my husband at work and told him I wasn't feeling so hot. I was having some heart problems and just wanted to let him know in case I needed him to come home early. I told him if it didn't settle in a few hours then I would need to go get looked at. Having a previous cardiac history we weren't really panicked, just more alert to the situation. When he arrived home a few hours later my heart rate was in the 160"s at rest so off to the ER we went. I was rushed into the back and hooked up to all the monitors. The doc came in and informed me of some good news, my heart was in a regular rhythm, so it wasn't because of cardiac issues this was happening. But what was causing it? He proceeded to order a lot of blood work. An hour later he came in to inform me that all my electrolytes were critically low and needed to be replaced immediately. Next question, How has your diet been? For the first time I got to say "I have been eating disorder free now for 15 months", so it couldn't be blamed on that, he was going to HAVE to do more investigation. After 5 hrs he was off shift and transferred my care to another ER doc. This was a blessing (not that he wasn't an excellent doctor, just a new set of eyes). The 2nd doc came in and did NOT like what he was seeing. He ordered some more blood work and then told me it was showing that I had a massive infection somewhere. I didn't feel sick like that though. Next question, "are you experiencing any pain anywhere?".... well yes I have this wicked headache. Thinking it may be menengitis he consulted the internest who then consulted the neurologist.

Neurologist decided to do an LP. She did something I had never seen done or heard of in my 10 years as a nurse. Neither had the nurse assisting her, she checked my opening pressure. It was music to my ears when she stated "oh Kristy, I know exactly why you have a headache" then asked if I had been having them for a while. I was admitted that night for 8 days to rebalance my electrolytes as well to start me on the course of treatment for IIH. Had my CT and MRI done to rule out any other diagnosis and started on some pretty heavy pain meds.

Since the diagnosis my friends and families attitudes have changed drastically regarding my headaches. My husband found himself laughing when one of his employees called in sick because he had a "bit of a headache", his responce was "you don't know what a headache is". I am doing what I can now to learn as much as I can on IIH as well as the treatments used and also thankful to have found a support system for those of us who suffer from it. Who would have figured twitter would have opened up a whole new world for me.

Ok, so that's pretty much it.......

Hi Kristy, and welcome to the forum. So glad you have found this wonderful website. Lots of good people who are "in the know" here, mostly because they too have IIH. I have been diagnosed with Secondary IH, a little different than your type.
As you read about the site, you can learn what has and hasn't worked for others, just to give you some ideas of what may be in store for you. I hope that your pressure can be kept down through meds alone, and that the meds don't bother you too much! That would be great.
And yes, the main thing now is that you are among friends here. Nice meeting you!

Hello Kristy, my angel

Sounds like you've been having a tough time eh!! X I

Some peoples attitudes are all wrong aren't they but you've found us now xx

A very warm welcome to the group Kristy. Unfortunately you have been on the familiar journey of diagnosis known to us all for IIH. You have certainly be on quite a rollercoaster ride and you seem to at least have a knowledgebale Neurologist, which always helps.

I'm think it's par for the course the way people react either positively or negatively when you tell them what your condition is, more so if they have never heard of it before and your condition isn't a visual one, which makes you look perfectly fine to them. Hopefully that will change the more information they have and take time to familiarise themselves what is happening to you. We have helpul booklets which can help you with aspects of this.

You are among lots of friends here who will listen, support and most of all understand what you are going through, and will be able to tell you what they have found to help them. Hopefully this with the information we provide and useful advice, you will have all you need to cope with the IIH and make you feel less alone.

Heidi