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 Natasha's Journey To Diagnosis

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natashaevon
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PostSubject: Natasha's Journey To Diagnosis   Wed May 29, 2013 6:48 am

Hello! My name is Natasha and I’m 23 years old. I just graduated from college in December 2012 with Bachelors in Science and majored in Criminal Justice. I was so excited to start looking for a REAL career. I was about ready to start my life, until....
January 5, 2013, I woke up with a stiff neck. I thought that I had just slept on it wrong, so I didn't think anything of it. On January 7, 2013, I had my first migraine. I left work and went to emergency care. They gave me a Toradol shot and some pain medication and sent me home. The next morning, I awoke with another migraine. I had never had migraines before, but the pain was unbearable! The pain medication dulled it to where I could function, but it was codeine, so I was a little loopy. I visited emergency care again later that week because the migraines hadn't stopped. It was all day, every day. Soon, the medicine couldn't mask the pain any longer. My mother decided to come and take me home with her so I could see my primary physician. My doctor suspected that I had meningitis, so I was given strong antibiotics and stronger pain medication. My migraines never got better and I noticed I had blind spots in my vision.

On January 18, 2013, I made an appointment with an eye doctor. After my visual field test, he came into the room and said, “your blind spots are consistent with patients who have pseudotumor cerebri. Do you know what that is?” A knot formed in my stomach and a lump in my throat. I knew EXACTLY what it was. I had a friend in high school, her mom had it. My younger brother had it when he was 12 years old. I remember the stories of the lumbar punctures, the medications, and the doctor appointments. However, he never had migraines, so I didn't know that was a symptom. I said, “yes, I know what that is. Can I go now?” I put my contacts back in and left. It was the most awkward appointment I had ever had. It was a Friday and I knew my PCP wouldn't get back to me until Monday. That whole weekend I spent crying and thinking. “I’m too young for this. I’m not overweight. How can this happen to me? Why was this happening to me?!” On January 23, 2013, I had my lumbar puncture. As I’m sure you all know, not the most comfortable thing in the world. I was scared out of my mind. My opening pressure was 50! He drained a lot of fluid and I was sent home. I began taking Diamox 500mg 3x/day. It was official. I have PTC/IIH. The migraines slowly went away, but my vision wasn't getting better.

I was sent to consult with a neuro-opthamologist in Oklahoma City, OK. He recommended optic nerve sheath fenestration surgery, but could see how afraid I was. I didn't want anyone cutting into my eyes! I made the decision to have the surgery. It was a hard decision to make, but it was the right one. February 26, 2013 was surgery day. I remember crying in the pre-op room. The surgeon took my hand and looked at me and said, “if you don’t want to do this, you don’t have to.” I managed to smile with tears rolling down my cheeks and said, “I didn't drive all this way and get an IV for nothing.” Healing was painful. My eyes hurt for weeks and the scars are visible. I've healed slowly and steadily since then.

Today is May 28, 2013. I have my diagnosis, I've had the surgery, I've taken the pills, and now I’m healing myself from within. I've learned to appreciate life and the people around me more. My mother, brothers and grandmother cared for me for nearly a month. My boyfriend tried to be as supportive as he could. It wasn't easy for him to understand and handle the situation, nor was it easy for him to be away from me for so long. I've begun eating organic foods and naturally raised meats. I've learned to slow down and enjoy the simple things in life. My diagnosis was my wake-up call. I don’t look at it as my illness. I don’t see it as the thing that held me down for months. I see it as my second chance. I love and appreciate the people in my life more than ever. Even though my memory often fails me, I try to make even the smallest things memorable. I know I have so much to be thankful for. It’s only been 5 months, but I've already stopped my Diamox. Tomorrow will be 2 weeks with no medication. I will beat this, just like my little brother did. He is my role model. If he can do it, I can do it. This is MY life. I will not let my IIH get in the way!


Last edited by natashaevon on Wed May 29, 2013 7:04 am; edited 1 time in total (Reason for editing : added the type of surgery I had)
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medmisfit
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PostSubject: Re: Natasha's Journey To Diagnosis   Wed May 29, 2013 3:13 pm

Hi Natasha! Welcome to the group, and thanks for sharing your journey!!! I'm glad that you've been able to keep such a positive outlook and things are working out for you..what an inspiration! When I was first diagnosed I was told that the majority of people diagnosed with PTC/IIH only have one episode, so we'll definitely keep our fingers crossed for you.

Take care,
Julie
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Heidi
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PostSubject: Re: Natasha's Journey To Diagnosis   Wed May 29, 2013 5:01 pm

Hi Natasha and a very warm welcome to our group forums. Reading through your story it struck me what a brave and determined young woman you are, and your attitude to this has been so positive, that I find it very inspiring as I hope our other members will too.
I am so pleased your brother is in remission and I will keep my fingers crossed that you get there too. I was 19 at the start of my IIH journey, but I continued to work and went back to college for two years to get my Business Administration qualifications, so please don't give up on your future with this condition, stay as strong and positive as you are, because a good mental attitude goes along way.
Please keep us updated on your progress, and I look forward to your posts in our Success forum.
Heidi
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Wylee
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PostSubject: Re: Natasha's Journey To Diagnosis   Wed May 29, 2013 5:05 pm

Hello Natasha and welcome2

Wow!! What a wonderful story. You have captured in words what so many of us have felt. Beautifully written. I would love to see it in a magazine. Have you thought about submitting your story? I'm serious. You have managed to express the pain, the fear and the rebirth so well.

I'll be keeping my fingers crossed that your improvements will continue and you'll be able to dig into that new career with great eyesight and pain free.
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natashaevon
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PostSubject: Re: Natasha's Journey To Diagnosis   Thu May 30, 2013 2:29 am

Thank you, everyone! I wish I had found this site months ago. You are all so encouraging and supportive. For those struggling, this is a great support system! I remember feeling so afraid and alone...I didn't have anyone to talk to that understood what I was going through. My younger brother was in college, so I didn't want to distract him from that. It is reassuring to hear that the majority of those diagnosed only have 1 episode. Yes, fingers crossed!
fingers crossed
Publish in a magazine? I wouldn't know where to start, but I'd be willing to do anything to help someone else. Until then, here is where I'll try to help and give encouragement.

Thanks again and best wishes!


-:Natasha:-
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