Friday, November 4, 2011

November's IH Story: Kim Aponte-Ortiz

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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.
 November's IH Story: Kim Aponte-Ortiz

1. When were you diagnosed?

2. How old were you?

3. What treatments are you using?
A large dose of magnesium and vitamin b, Antivert, and weight loss surgery.

4. What has been working for you (we’ll even take home remedies here!)?

Diamox was working for me. It lessened the headaches and made me active again!

5. What complications, if any, have you experienced?

All the not-so-wonderful side effects of diamox! Then I started getting intense stomach cramps whenever I took it followed by vomiting. I ended up in the hospital a few times because it was so bad and I ended up getting dehydrated. One doctor kept telling me it was a stomach virus and I finally said, "It's not. You need to do blood work." The diamox ended up causing my liver enzymes to get really high and enlarged my liver.

I was put on topomax which made me sick to my stomach!
6. How has this disease changed your life?

I have always had headaches/migraines, dizziness and ear issues and the nausea but never really did anything until this year when they got really bad. I was miserable and had trouble sleeping at night because all I heard was whooshing sounds in my ear. I work with young children and this effects me everyday because it causes even more pain when the kids cry or scream. It changed me emotionally because I always knew something was wrong but the doctors kept telling me different things. It makes me wonder what if this was caught years ago? It makes me question everything.

In a weird way I feel that having IH has somewhat helped me. I now know who I can trust and count on and those that I can not. It was recommended to me that I should have weight loss surgery to try and avoid getting a shunt. While I do not think weight loss surgery will help relieve my symptoms I agreed on the surgery. This will be a life changing surgery and I feel that it is the right choice. I have always been overweight and most recently obese but I have always enjoyed exercising and working out. I am just not loosing weight like I should be. My symptoms from IH make it even harder for me to exercise because who can exercise when they feel dizzy and feel like vomiting and have a splitting headache on top of it.

It has also made me more aware of my health. Having IH I need to make sure that I am staying up to date with current visits to my PCP, nuero and nuero-opthamologist. Before this diagnoses I thought i was just having symptoms of really bad allergies. I went to a few different ents and even had allergy reducing surgery. This did not help at all so I made another appointment to see a different ent. This doctor actually listened to what I was saying and told me to go right across the hall and make an appointment with the eye doctor. The next day I was at the eye doctor and discovered this.
7. What lesson(s) have you learned on this journey?

The biggest thing I learned is to stand up for myself and to be my own advocate. I also learned that I have really amazing friends.I learned that some doctors care way more then others. I also learned that although I feel very alone at times that I am not.
8. What one message do you have for people not aware of IH?

People with IH might not look sick on the outside but it doesn't mean they aren't. Many people think it's just a headache but it's really not it's so much more! People do not understand what people with IH are going through. I once had someone tell me that they did not understand why I was crying because it wasn't like I was dying.

9. What one message do you have for fellow IH patients?
To never give up! To believe in and stand up for yourself. Doctors might have the education and experience but they do not know you or your body. If something doesn't seem right make them believe it or find a new doctor. Join a support group there are a few on facebook and they really help!

10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?

Fellow IH-ers: How can you relate to Kim's story?
What message would you like to send back to her?
Much thanks to Kim for sharing her IH story.

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