Beating a Rare Disease

psychRN83 · February 2013

Four years ago I was diagnosed with intracranial hypertension. It is a rare disease that causes increased intracranial pressure, extreme pressure headaches, vision loss, nausea, and ringing in the ears. For many the only treatment is brain surgery to place a shunt that helps relieve pressure by removing fluid to other parts of the body. Some people respond to weight loss since the disease commonly affects overweight women in their childbearing years. Two weeks ago my neurologist formally stated i was in remission and took me off my medication. 50 pounds gone= rare painful disease beaten into submission. Four years ago i did nothing but lay on the couch in the dark in constant pain and go to work three days a week. Now, i exercise three times a week, went back to school for my RN, my BSN, and now my MSN. I got a promotion at work. I play with my daughter more and walk my dogs everyday. I have told very few people about my remission from intracranial hypertension because it still even amazes me. I still have a lot of weight to lose but this journey wasn't about numbers or fitting into a bathing suit. It was about increasing my quality of life and winning a battle so many have lost. This journey has showed me that I can beat any obstacle and so can you!!!!!

228lrt · February 2013

Incredible wonderful story-congratulations for your hard work. Fantastic reward! Keep it up.

benol1 · February 2013

Congratulations psychRN, you are a real inspiration!

chljlleal · February 2013

That's brilliant well done!

JULIEdance · February 2013

Awesome! Congratulations and good luck on your journey! :-)

SyntonicGarden · February 2013

I applaud your strength, courage, and determination. Way to go and congrats on kicking butt!!

Squashypig · February 2013

A fantastic NSV if ever I heard one!! Congratulations and long may the improvements continue for you. Thanks for sharing :flowerforyou: :drinker:

Dauntlessness · February 2013

Its weird how that works huh? People just accept the medical issues they have, they are irreversible and that they will have to deal with them the rest of their lives. That was me 3 years ago. Its incredible how much weight loss has an impact on all of your health and not just the way you look.

DiannaMoorer · February 2013

So awesome!! :drinker: :flowerforyou: :happy:

Weebs628 · February 2013

Amazing how weight can contribute to health issues like that! Congratulations for beating it!

sharonKay65 · February 2013

Good for You that is wonderful, I also have some health issues that I have dealt with and when they caused me to quit working. I was in so much pain, every day was a struggle!!! I was to the point I was getting depressed and quite honestly just giving up. Now that I have made some changes for the better, it has not caused my diseases to go away, ( I don't think there is a cure, and the damage that has already been done to my body is irreversible) However, that doesn't mean that I can't do every thing in my power to manage them and hopefully stop anymore damage, and to actually improve my quality of life. I really think, I got to the point I was so tired of being in so much pain, that I realized I had 2 choices, one I could just accept what my life had become and not make any changes, or two I could do anything and everything to try and get healthier and manage these diseases a whole lot better than I have done in the past. I figured If I did nothing, I maybe had a few years left at best. I took on the mindset of I am going to get healthier and beat the odds.... or I am going to die trying! I am already starting to show some improvement, and my Doctor is very pleased that I have started making these changes. Once again, I am starting to feel optimistic about the future, and I no longer feel like I am just sitting around waiting to die. Sometimes, losing weight is so much more than just looking better. For me, that is obviously one of the reasons, but even more than that making these changes will hopefully allow me to have many more wonderful years. I wish you only the best of health and success!

smurfaggie07 · February 2013

I've got IH too, so thanks for posting this success story. Hopefully when I lose the weight I'll go into remission, after having this for 8 years.

psychRN83 · February 2013

Thanks everyone for the support. Sharon Kay I admire your courage as well. Overcoming chronic pain is a huge struggle for the mind and body. I am glad u are making these changes and feeling better about your life!

Smurf- I hope so too!! I hated every moment of IH. I am not sure what your doc has u on but I also hated Diamox. It made me sick to my stomach and made my legs and feet tingle so painfully i would get up and pace for hours at night. It was better than losing my eyesight though. I recently bought a nutribullet and started making smoothies with veggies and fruits that have natural anti inflammatory properties. I swear it helped my headaches.

Beating a Rare Disease

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