SEPTEMBER is IIH/PTC AWARENESS MONTH-I was dx in Jan 2016 with IIH. After trying to get Doctors to listen to me from 2004-2016. I now have bilateral transverse sinus stents, not a shunt. I am thankful for being allowed to share this Blog by Soulja Girl, with you all. I hope it explains what Idiopathic Intracranial Hypertension is, as well as explaining what Chiari Malformation is. (It has nothing to do with high blood pressure, just in case you are wondering.) IIH/PTC and Chiari Malformation are both debilitating diseases/conditions. Many people who have one or the other, or both, experience severe headaches, vision changes, blindness, speech issues and other neuro changes. This blog is wonderful for providing awareness and information on both IIH and Chiari.
With IIH/PTC the brain “thinks” it has a large brain tumor so it sends all the CSF it can to itself. In order for it to try to protect itself when in reality, there is not a tumor. There is no known cause of IIH/ Idiopathic-meaing unknown. And, there are limited treatment options, no cure. Some do go into a sort of remission but this is almost as rare as IIH/PTC. A person who has IIH/PTC has all the symptoms of a large brain tumor without the tumor.( insert Arnold Schwarzenegger’s “It’s not a tumor” jokes, now!)
If you made it this far, you might be wondering what this has to do with Book reviews. Am I correct? The reasons I am bringing my story up now are:
1. September is IIH/PTC awareness month.
2. I love to read and write, have since I was a child. IIH makes it more difficut for me to read a book, review it, write, and comprehen what I read or write. It also has an effect on how my brain processes speech of others, my own speech, and memory. But I try not to let it stop me. I read and write at a much slower pace now. Hope this helps someone who might be going through something similar.
5 things you can do to help someone with IIH:
1. Be supportive, be there, don’t allow my pain to scare you away.
2. Be thoughtful sometime we goes days with out eating, or bathing because we just do not have the energy- kindly make us a meal or offer to help us clean our house.
3. Do not become angry when we struggle, constant pain drains you physically and emotionally. We do our best and we become angry at our own self because we cant do what we need to by our self we don’t need your anger on top of it
4. Tell us how proud of us your are, pick us up emotionally, living inside a broken shell is not easy especially when your body wants to keep attacking you. Help us be our own hero.
5. Give us love, we need that the most, we struggle…
View original post 2,050 more words