Intracranial Hypertension is a rare disease. When I first heard this and read about it, two things occurred to me: I felt very alone and I thought it would be nearly impossible to find anyone else with this disease. However, since being diagnosed in 2009, I have discovered exactly how large a rare community can be!I think it is only fair that I start with myself...
Every patient with IH has a face (as we proudly display on our facebook Wall of Hope), but every patient also has a story! Here on The IH Brain Pain Blogs I plan to bring you the stories of those patients who are willing to share them with you.
Ten questions are asked of each volunteer so that you can get a better understanding of how IH plays a unique role in each individual's life. If you have IH, know you are not alone. If you don't have IH, see what it is all about.
1. When were you diagnosed?
I was diagnosed in June 2009. Doctors told me that I most likely had the condition for years before the diagnosis.
2. How old were you?
I was 32 years old.
3. What treatments are you using?
I am currently taking 1500mg of Diamox, down from 2g. I am tapering down in an attempt to be drug-free and able to bear children.
4. What has been working for you (we’ll even take home remedies here!)?
- The Diamox has worked for me and I count myself as grateful for that.
- I had an optic nerve sheath fenestration in August 2009 on my left eye which saved me from going blind.
- I went to a nutritionist and found out I had an intolerance to gluten and dairy. Since eliminating both of them I have experienced two benefits - weight loss and my symptoms were minimized.
- Caffeine works for a quick fix on the beginnings of a headache. If I just need a little more time out and about, I grab a Coke. (I think this works for me because, beyond this I never reallyhave any caffeine.)
In August 2009, I lost my ability to see color and could not even walk without assistance. When I got to my neuro-opthalmologist I was rushed into surgery. I found out that I am a "positive responder" to steroids, which means I can't take them again, because they will ultimately lead me to early glaucoma. I also learned I will most likely get glaucoma one day.
6. How has this disease changed your life?
At first, it stole my driving privileges. At around the same time it made reading hurt a lot. After a year of being more stubborn than I even realized I could be, IH stole my teaching career. I have become less active, less social and a little less "me" because of the disease. Once I realized this was happening, I started working hard to try to change it.
7. What lesson(s) have you learned on this journey?
- First, I can not will myself to feel better, and
- Moving forward does not always equal progress, sometimes you have to slow down, or even STOP, to make sure forward is still the direction that's right for you.
- Friends and family will understand that things will have to change, but they will only understand that when I make it clear. This disease has no bright blinking signs for anyone else to help you out and say, "Hey, Nicole, I think you need to slow down!"
Pay attention to your body and what you put into it. Pay attention to your aches, your pains, the things you explain away as aging, stress, or some other "normal" thing. I am not saying that more people have IH, I am simply saying our bodies are wonderful, miraculous things that are designed to let us know when something is wrong - DON'T IGNORE YOUR BODY'S "CHECK ENGINE" LIGHTS!
9. What one message do you have for fellow IH patients?
If you need to slow down, then slow down. If you think others will not allow this, I challenge you to ask this first: Will YOU allow yourself to slow down? Be real with yourself and your situation, we may not have a cure, but we can all still hope for REMISSION. Slow down, take time and see if you can grasp it!
10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?
- I have a blog Rivera Runs Through It, when I am not writing here on The IH Brain Pain Blogs.
- You can follow me on twitter or DailyStrength under the name riverand.
- I am also on Facebook.
Do you have any other questions or curiosities? Post them in the comments section below!
Tune in next month for our next IH story and don't forget to
spread the word about IH and donate to IHRF when you can!!