Hello everyone. I am new to the support forum, thought I am not newly diagnosed. I had an immediate onset of IIH in June of 2010. The doctors thought I had a blood clot on my brain but that turned out not to be the case. After six days in the hospital I was released with no diagnosis and an incredible headache. The headache has become constant. I call is a headache on a dimmer switch. The intensity seems to get turned up and down based on my stress level and how tired I am. Though for the past 5 weeks, it never seems to be at a low intensity.

I have had 3 lumbar punctures. The first, they did not measure the opening pressure. The second was before diamox (270) and the third was with diamox (180). The most recent tap was about a week ago and did not give me any headache relief. Yet, the doctor said 180 was a normal opening pressure. I have been very fortunate, the eye dr and the neurologist agree that my optic nerves are fine so far. However, I feel like I am having vision difficulties. Like I can't clear my vision when I blink.

So I find myself angry and confused with so many, many unanswered questions. I am trying to lose weight, but that has truly been the story of my life. I went on my first diet when I was 10. If it was easy I would have done it then! I keep telling myself that depriving myself of food is a small thing compared to this constant headache and the fear of losing my vision.

I have two children. My son is a senior in high school and my daughter is 12. I feel like I have missed three years of their lives because of feeling so sick all of the time. I can hardly remember my life before IIH though I do miss feeling "normal".

Well...enough whining for now. I am so happy to have found this forum. I thank those of you who will take the time to read my story and to share your own. Reading about other people who I have so much in common with is such a comfort. Sometimes I really believe no one understand what I am going through. It is nice to find a place where people will understand.
Lee

Hello Lee and

Please, never apologize for feeling the need to vent. We all have been where you are. We understand all to well. Feel free to come on any time and speak your mind. Whether to rant and rave, laugh or cry, ask questions or offer support, you are always welcome here.

We have learned that IIH has so many different symptoms. The only really common factor is the elevated intracranial spinal fluid pressure (ICP). The numbers that you cited are not as high as some, but, 27 cm (270) is considered "high" by the medical community (anything over 25 is high). My pressures were always between 22 and 24, but now that I have a lp shunt, we have found that my body does a lot better when my pressure is closer to 10 to 14 cm. That makes 22 WAY high.

If the last tap did not give you relief, I wonder if the doc saw that your pressure was "normal" and did not draw off any fluid. I also had one tap where the Doc removed only a small amount of fluid to see if I could tell the difference (it's the placebo affect). I noticed, and by was I ticked! I still had to pay for the lp but didn't get the benefits. You may want to check with your doc and see if that was what they did!

I hope you are able to get to feeling better real soon. And if your vision continues to cloud, try to find a neuro-ophthalmologist for a more complete check up.

Hi Lee, welcome to the group!!! You are definitely not alone..we're here to support one another, so no need to ever apologize. Like Linda said we've all been there and completely understand your frustration.

Stress and sleep can definitely affect IIH symptoms, but I'm concerned that you don't seem to be finding any relief. I agree with Linda and would suggest a neuro-ophthalmologist, if you haven't already found one. My eye exams are usally good, but my vision gets blurry as pain increases..sometimes it's like looking through a film of some sort. Weight loss has helped some, but not everyone. Low calorie diets, exercise, and water intake can also affect your symptoms, so make sure you're monitoring your symptoms. A symptom log can be helpful in tracking changes and will give your physician more information. You can find an example in the Useful Guides and Print Outs section.

Another thing to remember is everyone's "normal" is different and it's constantly changing. The ICP scale changes depending on the resource, but it is also different for everyone. I was diagnosed with IIH when my opening pressure was only 20, but symptoms completely went away after LP. Now my shunt is set at 20 because if it goes any lower I get low pressure headaches. You really just have to go by how you feel, which is why the symptom log is helpful.

I'm sorry you've been struggling so long, but hopefully you're on the right track now. If you're not getting results from current physicain, then I'd suggest a second opinion..keep looking until you find an answer or someone hears you.

I encourage you to look through the site and let us know if you have any questions. We'll do our best to help you through this!


Julie

Thank you so much for your kind and helpful responses. It is so helpful to hear from others who are fighting this battle.