Hi Everyone So, I am newly diagnosed with IIH and I have a lot of questions. I have read so many stories of people suffering with their symptoms that I feel very lucky. I went to the optometrist on my 31st birthday last month to get contacts....a little treat to myself. I have worn glasses since I was a teen so I have had regular eye check ups. My last one was about 2.5 years ago. When they dilated my eyes the optometrist kept looking back and forth and finally said that something wasn't right with my optic nerves and he would like to do some additional testing. I said, sure why not. They did multiple tests, took some pictures, etc. My visual field test showed an increased blind spot and so the doctor asked if i would mind meeting with their neuro opthamologist. Again, I thought why not. There starts the drama :( After some more testing and looking in my eyes the neuro opthamologist diagnosed me with papilledema. He also did an ultrasound that same day to rule out pseudo papilledema and buried drusen. Happy B-day to me! He started talking about possible brain tumors and pseudo tumor cerebri and ordered an mri. I had to wait almost a week for my mri. I won't lie...I did a lot of crying during that week. I have two children and I was scared that i was going to have a brain tumor. Luckily my mri was normal, with the exception of an empty sella. So I was referred to a neurologist next. After visiting with the neuro they decided to do the spinal tap to confirm iih. My opening pressure was 430. This was two days ago and yesterday I was started on Diamox.
So, a little about myself. I am 31, overweight (with a ton of weight gained over past 8 years...a lot of yo yo weight..up and down). I do get headaches but nothing that i couldn't handle with a couple of extra strength excedrin. Over the past 4 months I have noticed my headaches don't go away like they used to and sometimes last for 2 days. I don't have any blurry vision but I do suffer from unexplained nausea and extreme fatigue.
And here is my problem. I am still convinced there is nothing wrong with me. I have been told that I need to fix this and I can't let it go...but I don't feel overly sick. Does anyone else feel like this? I know this medicine can cause side effects and I feel like I am going to make myself feel sicker. Is 430 even that high of a pressure? I am not trying to underplay it because I have read your stories and everyone has so many more symptoms than me....I keep telling myself maybe it was a mistake. Maybe the dr misdiagnosed the papilledema and maybe the empty sella has always been like that and maybe the person doing the lumbar puncture made a mistake...lol wishful thinking??? Well thats my story! Thanks for listening

please don't be in denial about this. you already have evidence of vision loss and a significant effect on your pituitary. are they going to send you to an endocrinologist for testing? maybe the weight gain is partly related to the hormonal issue you must have from this?? anyway, 430 is quite high, it's almost double what mine was, and I have been completely disabled by mine. I don't have eye problems, although I did have "ocular migraine" that went away after I started CPAP. your vision is at risk if you do nothing. I don't know how to explain why your symptoms don't seem to you to be as bad as ours, but from what you describe, they ARE. headaches that don't go away, nausea and extreme fatigue are typical symptoms of IIH. what I have noticed is that people with IIH have suffered so much that it is almost normal to them, they are quite stoic. so this may explain your perspective. but you definitely need to do something to reduce your pressure, at least to the point it takes the pressure off your optic nerves.

thanks for joining us here and I hope that we can help you make sense of all this. I know it is quite a shock and hard to wrap your mind around. disbelief is one of the stages of grief..... I'm sorry you will be having to deal with this, but we are always here to listen and help you sort things out.
Deb

Thank you Deb I know in my mind that I am in denial but I have always been pretty healthy so it has been difficult to wrap my mind around it. I think the shock of finding out so suddenly is what has me so confused. I appreciate the support. I have a very loving and supportive family but I think it will help to talk to people who have experienced some of the same things as me. So, again thanks!
Have they been able to help your help your symptoms, besides the ocular migraines?

Hello aprout22 and

As you continue to read our intros, I suspect you will see that your case really isn't so terribly different than the rest of us. About the only thing we have in common is abnormal spinal fluid pressure :roll:

"Normal" spinal fluid pressure is read as between 10 and 20 cm of water. Your reading, of 43, is undeniably high. Elevated CSFP can cause permanent damage to your eyesight. So, please, do listen to your docs and do whatever you can to get your pressure under control. THAT is the hard part. So much of getting to that point is trial and error. We highly recommend that you keep a daily medicine/symptom log to keep track of what works, what not so much, what makes your symptoms worse, better, etc.

I hope that your mild symptoms continue as such. That would be really, really sweet!

It is extremely hard at the beginning to accept that you can't function the way you used to, and that you have to make changes. You want to be normal for your children and by denying to yourself anything is wrong, you are also denying to your children. This is our first instinct when we have
children, to shelter them from things like this so they won’t be affected. The thing is you can't hide it indefinitely from them or yourself. You don't have to give them the details, but explain that Mummy has a headache and needs some quiet or a rest.

My daughter has grown up with my IIH, and when she was 4 and aware things weren't right, I got her a nurses outfit and doctors bag, and when I was ill, we would make a game of it, and she would play nurse. I also let her watch casualty and children’s hospital which was on at the time, because I was a single parent and had to take her with me for my LP's. I didn't want her to be scared of hospitals. It wasn't until she was 12 and I needed a shunt that she realised I had anything wrong with me.

You must accept that you have this condition so that you can learn to live with it, and make the changes you need in order to function. Start with keeping a symptom log it will not only help you but your doctor. Keep a Task Manager log so that you can breakdown your tasks in to more manageable tasks, by teaching you how much you are capable of doing, and how much
time you are able to comfortably spend on them.

These are things I taught myself when I was first diagnosed back in 1989, before internet and online support groups, and when no one could tell me anything much about it. By doing these I was able to stay ahead of my IIH, and it enabled me to go back to college and to then work full time for the NHS.

I was like you at first, in total panic because my daughter was a baby, but I knew I had to get on with things for her, she was my light at the end of the tunnel when I felt down, which is why I began using these logs. Give yourself a little time to let it sink in, read through the stories here, and the information, especially the success stories. You can get through all
this and we will help you all we can. You're not alone.

Thank you guys. It seems like keeping a symptom log would be good start. My next worry is that I feel like I am reading too much into everything now lol. I have had a headache since yesterday, but not a bad one. Probably only a 3 on the pain scale. Should I only put symptoms that I think are related? I am concentrating so much on my headaches all of a sudden that I am probably giving myself one lol

Have a read of our A-Z of headaches common with IIH sufferers. You may notice you experience headaches around your time of the month and with the weather. Also activity can bring on headache.

I haven't checked out that section yet. that will be my next stop

Since it isn't crystal clear just what are symptoms of IH, I would jot down everything. In time, they may get weeded out, but sometimes it's the little things that we don't associate that the docs do and are able to figure out what is going on. I went for years not telling my doc about my big toe hurting. After all, how crazy is it that the only pain is on one big toe!! Then I learned about gout!! Boy, did I feel like a fool. I would write down everything....
the weather, what activities were done, what you ate. The more info for the docs the better.