It has been a very long time since I have posted anything on here. And I figured it was time for me to share my story.

It has been a year since I was diagnosed with IIH. A year I will not soon forget. Countless LPs, different medications, and many horrid nights were spent shedding tears. It was one of the darkest years of my life so far. Day after day, the headaches, or vision loss were crippling. I did not enjoy much, and I felt myself growing bitter. Towards the world, and everyone in it." Why me" would always dance around in my head. The constant anxiety attacks were brutal. I stopped going anywhere by myself. I was too afraid to do anything. It did not help that the neurologist I was seeing did not hear me, or listen at all. It was a constant battle with her. She would say it was migraine, and I would disagree. Migraines go away with medication...DUHh. By my 6th month of being ill, I wanted to give up, and kill myself. There were many days where I thought about just doing it. Jumping in front of a bus, or hanging myself. At least then my Fiancee would not have to listen to me whine, and cry, and the pain would stop.

And then it hit me, I'm a survivor. I HAD to keep moving forward. I've survived a messy childhood, my teenage angst, and a crazy family. Like hell a disease would make me quit. I was listening to my favorite song. Just wait by Blues Traveler. And a line jumped at me. "There's no such thing as a failure who keeps trying. Coasting to the bottom is the only disgrace". (I urge all who read this to youtube the song).

So I started to see a counselor weekly. Seeing the counselor helped a lot, and my doctor worked diligently in finding me a new neurologist. If I had to go back to my old neurologist I would have let her taste my fist. LOL she was just awful. I was finally taking control. After all, its my life right? why shouldn't I be in total control??

And BINGO! My doctor had found a new neurologist, and a few months later I went in to see him. I seriously think he is an angel sent from heaven!! He gave me more info than I had before, including info on a rather strict diet. It was taken directly from a Japanese research group. They followed this very strict diet of whole, raw foods. And only allowing themselves to have 2 grams of salt a day. And he also told me to watch my vitamin A consumption as well. I had no idea about any of this before. Finally knowledge I could utilize to my advantage.

I started the diet (which wasn't that hard, actually...the prep work sucks but its worth it) and watching how much vitamin A I was getting. That included skin products as well. It took a lot of reading, and many three hour stints at the supermarket trying to figure out what I could and could not have. That meant NO AISLE SHOPPING!! Just fruits, veggies, anything RAW. (I even cut out coffee) And then my skin care products...I decided to take a completely natural approach to everything. No more words I could not say. I started researching products, and shopping at places that have skin care specialists ON the floor. I knew what I needed, and was always prepared. And my skin has never looked better! That is just proof that knowledge is the best medicine out there!!

I also do yoga. Just at home, where I am most comfortable. It has really helped!! I seriously think it also helped save my life. It was low impact enough, so I was able to keep up. And yoga videos are free on youtube!! Now I am able to jog, and do as much as the average joe!!

My last major episode was December 31st, 2012. I had the LP around 10 am, after the doctor decided to try and do it blind, and hit EVERY NERVE possible. Thank goodness for my great flouro team lol. They apologized for the doctors horrid aim, and got it spot on the very first time. Fast forward...I am feeling great. Minor headaches here and there, but no IIH headaches. I am free once again. I am back to work, at a store that does sell fragrances, but they don't bother me like they used to. It feels good to be back in with the rest of humanity, and living my life the way it should be lived. FREE

There are so many I wish to thank for helping me with this success story. The main person is my Fiancee. The poor guy has gone to work after sleeping in a hospital chair for hours, has helped me get dressed, and held my hand through every sunny day, and tsunami we went through. I don't know why he stayed, but the guy deserves an award!! The next is my doctor, and neurologist. It took forever to find people that were on board, and understanding but they were worth the wait.

I have pushed through the pain, and overcome my fears. I have cried, and kept going. I am not about to let an abbreviated disease keep me from reaching for the stars, and going above and beyond with my life. IIH tried, but failed.

I urge all sufferers to NEVER give up, and to keep positive. As soon as you become negative you start to give up, and isolate yourselves from others. You lose half the battle right there. Always remember you are never alone. And always love yourself no matter what. A small victory is still a victory after all <3

Yay!!


can you share more specific info on the diet? do you think it was the diet itself or the weight loss that helped? what are your protein sources? how much weight did you lose to get the effect and is your BMI now normal?
thanks for sharing, your story is absolutely inspirational Jenn!
Deb

What a wonderful update. Thank you so much for sharing your story. I recall those dark hours you were going through. I was so worried for you. Guess you won't have to move down to the US now.
I, too, would like to hear more about your diet. Sounds interestng.

My diet consists of fruits, veggies, and the usual meats. I eat chicken, beef, pork, any type of fish, or shellfish.

I don't aisle shop anymore. If I want tomato sauce, I make my own from pureed tomatoes and spices. I DO NOT have quick meals. Everything takes time to prepare. Its usually about two hours to make supper. But my daily meal plan looks something like this:

breakfast: hemp hearts, or almonds/pumpkin seeds (unsalted). Granola is great too! I also add dried fruit for the fun of it, and dark chocolate sometimes.

Lunch : salad made of ALL fresh veggies. I also have come to love quinoa, or kamut in salads.

Supper: oven baked steak, with salad, steamed veggies on the side, and baked baby potatoes.

It started off as experimenting with food, and limiting starchy foods. But...I found a great pasta in the wheat/gluten free section (I do most of my shopping in those sections...low sodium foods!!). Its a kamut quinoa pasta, or a pasta made of veggies. Its tastier than bleached white pasta and healthier.

Its all about not taking the quick way out for meals. It takes time to prep them but in the end its worth it. Olive oil is my best friend now lol.

I think the diet helped the most. And with the diet came weight loss. My BMI is not normal, but I am doing great as is.

My protein comes from meat, eggs, etc. I just cut out all of the bad. No more chips, soft drinks, margarine (salt free butter is the way to go).

I seriously think everyone who suffers needs to try the diet out. Its all about taking the time to read about what you are eating. And eating fruits and veggies...including things that aren't normally on your grocery list (like leeks, kale, radishes, etc).

Does that clear things up a bit? I can provide recipes if you would like to try some out! I have made them up myself, and you cannot tell that they are salt free. And healthy!!

Thanks for the additional info.
I would love to hear your recipe for spaghetti sauce. I keep trying to do it from scratch but it always tastes like something is missing. I will be looking for the veggie pasta too. Think I need to take a trip to our local Whole Foods store.

That is FANTASTIC!! These are the updates I love to see, and so much for coming and updating on us on your progress. I can see this post is going to help alot of members, and give them a new approach.

Thanks Heidi! I hope everyone can see this post!!

The spaghetti sauce was hard to make...it tastes better with chicken, and because its a basic tomato sauce you can use it on chicken too!

So here goes...note that this can be changed if you don't like any of the ingredients.

8 large tomatoes ripened, and chopped
5 cloves of garlic minced
2 red peppers cubed
2 green peppers, cubed
1.5 onion (I do one white, half of a red onion) diced
8 celery stalks (leaves includes) diced

oil of oregano (about 8 drops)
4 tbsp of extra virgin olive oil
dill to taste
pepper to taste
basil (fresh is best) to taste
1 tsp cilantro chopped finely
3 tbsp parsley
paprika to taste (addsa nice smokey flavor)
a squeeze of fresh lemon juice, plus a pinch of zest
4 tbsp butter
you can add WHITE wine to this as well, I use about 1/2 a cup...or use however much you want.

My secret ingredient is freshly grated parmesan cheese. It CAN be high in sodium so make sure to watch how much you use, if any.

Just remember to try and use fresh herbs. You can use dried though. And add however much you'd like. It's all about playing around with it. And the low sodium diet doesnt have to be bland, but at first it will be a tad different.

But definitely check out a whole foods store. Make quinoa your best friend And hummus! Its great on sandwiches, and chicken too!! Be creative! Just because its a "diet" doesnt mean it has to be boring and blah!