Chiari Online Support Group

Is there ways to cope with chiair and pseudotumor

Hello, where can I start well I was diagnose with chiair malformation and pseudotumor cerebri. I was working as a nursing assistant till I had sick. I had to make the decision to stop because I didn't want anything to happen to my clients. I have a one year son who I miss even though he is living with me it hard to deal with everyday life. I forget a lot, I have real bad headache to the point I can't walk it hurts for me to move my speech sound like I been drinking, I dent my car while I was trying to park due to vision just a lot. I had a mental Illness but that's because I been rape in my passed but every time I see a doctor they use my mental illness as a excuse like I don't know what I am feeling. My husband my mama my mother in law my son plus people who comes to my house see me in this pain so how can I be telling a lie. I had the surgery back in 2005 took diamox but it wasn't helping. I change doctor because I move to another state. Now it seem like no one cares but I keep fighting. Right now I am not working but will try to go back because we need the money. They told me to lose weight I lost 60 pounds and seem like I am getting worst than better. One doctor told me that the doctor who did my surgery didn't know what he was doing but my mom we got 6 doctors before we did the surgery and they look at the test and said the same thing. I was even told have I been taken my Meds because I don't know what I am talking about even was told I am crazy.....How do you all cope with this I am 26 and miss my baby growing due to this illness please help.....Thanks so much

i took 30 years for me to get a diagnosis...it is tough to say the least! I was a workaholic and my last "bought" of the disease left me unable to work on the same month became a member of the law society - before that I changed jobs to accommodate my ongoing and forever increasing limitations...I only dissapointed myself by trying to do something I could no longer do...maybe you should try to reinvent yourself...though I went from laour work to law, I still cannot do that due to illness because I cannot sit straight up or stand for any real time...I suffered from anxiety and depression as a result...but it only made me stronger...I took my education and work experiences as well as my personal ones and help others to adapt and overcome...in a nutshell, don't let it stop you from living...these things happen because there is a purpose for us elsewhere :) I am here to chat anytime HUGS & LUCK to you and your family

Hi. Ayli. Before I was diagnosed with Chiari I was diagnosed with pseudotumor cerebri. I had been dealing with the headaches then, just began teaching and was raising an infant by myself. I didnt know what was going on. All I knew is that I had to get through it to take care of my son. The headaches would come from nowhere!! That was 10yrs ago. Fast forward. .now Ive been diagnosed with Chiari, still teaching and my son is teenager. I still have the headaches but different ones. .he knows and understand when I hafta lie down because of it. Your baby can feed off your energy. .so stay positive. Do what you can when you can with your baby. Have someone come over and sit with the baby while you rest…because I know the pain can take alot from you. But most of all just breathe!!
I was your age when all this was happening to me and Im texting you now.!!
You can do this! ! Be strong and of good courage!
Blue

Thank you both for sharing with me and sorry for the late reply. I have been sick but I’m back stronger than ever. I will not let the illness define me I define myself. Hope you all is doing well…