Hello, My Name is Alex Im a 23 year old Women living in California. I was diagnosed with IIH last October. It seems as though it all came so suddenly. But in reality im sure it didn't. I had been seeing spots when I would bend over or get up to fast. It was only in my left eye. So I went to my primary doctor and told him about it. He said it was probably nothing and said it could be something called "floaters". He sent me to an opthamologist. He took a look at my eyes and told me that it could be "pseudo tumor cerebri" or in other terms IIH. He recomended that I get an MRI of my brain to make sure there was no tumor or anything like that. Just like he suspected there was only fluid. He recommended that I go on a diet and lose weight. He said that it was normally in women of child bearing age who are over weight. He took me off birth control because he said the hormones have a big part in it as well. So for the next few months after that I was struggling to lose weight. I wasnt seeing any results. He then recommended that I get a LP. So around November last year is when i had the LP done. My pressure was 30. I had the worst experience. It hurt..even though they numbed the area. I kept saying it hurt..and I felt shooting pain down my legs & into my groin. I have anxiety so of course i started to have a panic attack. They took a small break and went back at it and finally got the tubes they needed. The following day I woke up when the worst head ache I had ever had in my life. I could barley walk. My Husband was all ready at work, So i had to have my sister in law take me to the hospital. They then had to do a blood patch and plug the whole where they had did the LP. The next week after that I was completely bed ridden. I couldnt walk, I couldnt get up to use the restroom or anything. My head felt like it was going to explode. After the head aches finally went away, i still would feel so much pressure when i would bend over, or lift anything. I felt so useless. After the LP he put me on Diamox and had me start seeing a neurologist. The neurologist, i didnt feel was very helpful. He just added more diamox. I did notice a difference when i started taking the Diamox. But my Opthamologist just kept pushing the "weight" issue. All my life i have battled depression. I have seen docotors about my weight, and gone to the gym. I dont see any results. I did lab work to see if there was a reason why im not losing weight..and NOTHING. Im currently trying to get the Lap Band. but im having trouble trying to get approved for it. Six months ago..I got married. Around that time i stopped taking my diamox. I didnt like the way it would make me feel. It made my feet, hands and mouth go numb. i couldnt stand it. The last time i went to the opthamologist was in April. I was supposed to be seen again in June. I havent gone. Im so ashamed of my lack of progress with weight loss, and the medication. I just feel like I was on way to much medication at one time for a 23 year old. Im on anti depressents, two differnt MG's of Diamox and the Neuro put me on an anti seizure medication to stop the head aches. I went through a down word spiral and got severely depressed. Im now getting back to feeling some one normal. But my eyes are getting worse, i can feel severe pressure behind my left eye, and head aches are starting to occur. I finally set up an appointment with the Opthamologist. The soonest they had was next month. Im to return. I have an idea of what he is going to tell me. Im so scared. Im hoping to find support in this community with not only the IIH but also to find the way i need to go to lose the weight i need.
Im sorry for all of the rambling. I just wanted to tell me whole story Thanks for reading.
~ Alex

Alex a very warm welcome to the group. We are so gald you found us and please never aplogise for saying how you feel here, you have a voice and we encourage you to use it.

I am so angry that you have been made to feel so ashamed about your weight that you have been made to feel that you will be judged by your Doctor and are put off seeing him for that reason. You have tried to do what you can to lose weight and as I, and other members know only to well that you need to exercise to do that, but by exercising it makes the IIH worse. That isn't you fault! Also what we aren't often told, is that the medication we are prescribed also tends to cause weight gain. So we end up locked in a viscious cycle.

What I suggest you do up to your appointment is to keep a food diary and eat as healthily as you can. Keep a record of everything you have and weigh yourself every week and note that down too. Also keep a note of how exercise such as walking and cleaning the house affects you. Then when you go to your appointment you will be able to show the Ophthalmologist that you ARE doing something and what the results of it are. I do this myself and have done for many years, which is why they were able to link my weight gain to the medication, steroids and also my PCO's. So I know that doing this works.

We have several log sheets that you will find helpful for symptoms and housework. You can only do what you can do, and as long as you show that you are it will be hard for them to say yhou aren't because you have been thorough enough to keep a record which shows determination. Then you can ask them what they suggest you do as you have done everything you can. See what they suggest, for instance could they help you get help with a LAP band?

After years of banging on about mine this way and showing them these records and my husband also telling them how I've tried everything, they finally have put me on a weightloss programme, and if I am unable to lose it that way they will finally do something more permanent. So please don't give up.

All you can do is eat healthily, cut down on the dairy make sure it's low fat, cut out bread and starchy foods like pizza and pasta.Eat off a smaller plate, drink water before your meals and then you will feel fuller quicker.Avoid fried and greasy foods. Avoid snacking. I'm sure you alread know these things because these are the main things any diet tells you to do. Have you thought of checking out The Biggest Loser Club or their The Biggest Loser Diet? I know that some of their option aren't free but it might help to take a look at what they offer as we all know their success rate is pretty high.

Remember you aren't alone and we are all here for you, and we support you 100%. Please keep us updated.

Heidi