Hi my name is Deb and I just joined. Back around 2004-2005 I started getting really bad headaches as well as neck and shoulder pain. As I had a stressful job and was a single mother of two teenagers, my primary care doctor and I just put it down to stress. In the early part of 2006 the headache just never went away. Neither did the neck and shoulder pain. One day it seemed to get worse and worse, I saw my primary care and she prescribed migraine medication. I took this but the pain just escalated so I ended up in the Emergency Room. From there that night gets kind of fuzzy. There was an IV with who-knows-what medications and a CT Scan. The pain stayed unbearable. Now came the lumbar puncture to check for meningitis. The opening pressure was sky high. Admit to the hospital, an MRI the next day. Started Diamox and got my diagnosis. I was 46 years old.

I tried going back to work but I have constant headaches, all that changes is the severity. Most days I have neck and shoulder pain. Frequently I am exhausted. I get the whooshing in my ears but luckily no problems at all with my vision. I also find I get dizzy, have memory problems and my ability to deal with stress has almost disappeared. For the most part I manage and have some fairly good days by knowing what I can do, where I can push my limits with the awareness of the price I will pay afterwards. I am on Social Security Disability because of this. But I know nobody gets it. There are people in my life who try very hard, they can be very understanding. But they don't quite get the frustration I feel, how hopeless I sometimes feel,. or why one moment I can seem just fine and snap!, I am in pain and can't cope. How I hate to complain because what's the point? Odds are this is just the way it is. Most of the time I am in a pretty 'up' mood but sometimes I simply can't.

Hello Deb and a very warm welcome to the group, I am so pleased hyou joined us. It must have been very frustrating for you trying to get to the root of what was happening to you. It seems that Doctors are always keen to put our headaches down to stress, because this is a common thread through most IIH sufferers posts.

All the symptoms you describe are the usual with IIH, but I'm relieved that your vision isn't affected. I totally applaud how you are trying to adapt your life by finding your limits and working out what you are capable of doing within these limits. This is something we encourage because in time as you recognise what your body is capable of doing, you can then pace yourself and build up to doing more.

As this is an invisible illness and to boot a rare one that very few people have heard of, they look at you and think you look perfectly OK, which is why they dont get it. In time your daughters will be able to recognise the signs when you have bad days, headaches etc, if they haven't done so already.

We do have lots of helpful booklets on living with IIH and how to explain it to people. There is also an extremely accurate video on youtube that explains what IIH does and feels like. Here is the link and you could send it to people you know and ask them to watch it.What is Intracranial Hypertension?

I also want you to remember you are not alone, you are part of the IIH community and you will be understood and we "get it!" You can ask questions or even have a rant and vent as much as you need to, we WILL listen. You have a voice here and there are people who will understand exactly where you are coming from, because they are having the same experiences.

Heidi

Hi Deb.

Yes we do understand all too well the frustraqtions of dealing with IIH. Can be so difficult to explain. Do check out the pamplets Heidi has made available for us on the site. Very helpful!

Anything we can do to help, feel free to ask.

Hi Deb! Wecome to our group. I know you'll find lots of great info and support around here.

I can relate to what you're saying about trying to get others to understand what you are going through with IIH ... it can be frustrating for me too, trying to help my family members understand what it is like. That's why I'm glad we have this forum where everyone knows what we're talking about in a way that most people cannot grasp. *hugs*