My Unbelievable Life with Pseudo Tumor Cerebri

06/26/2022

Drs. Need to stop saying this is caused by being overweight. My symptoms do not change with the fluctuations of weight loss and weight gain.

06/26/2022

Does anyone else with a shunt have this happen? I have an LP Shunt and at night I get about 5 full bladders and am p*eing like crazy! Last night I had to p*e like every 10 minutes and my head was pounding. I think it was overly draining CSF.

06/26/2022

03/31/2022

Haven’t had a chance to update on my condition~ so I definitely will later today!

02/17/2022

Received the Pfizer COVID booster yesterday and it is kicking my ass! My arm is sore and heavy, my head is pounding, back and body pain and cold/hot sweats all day 🥺 this is the last vaccine that I take because they make me sick immediately after.

09/15/2021

First visit with Neuro Opthamologist at John’s Hopkins. The beginning of my journey with Johns Hopkins and hopefully they will help with this condition. 😌🤨 This woman is exhausted but fights every day of my life to battle IIH 💙💚

09/04/2021

September Is IIH awareness Month .
" We are in this fight together " 🧠✊💙

Hi My name Is IIH also known as "Pseudotumor Cerebri "

My name Is IIH & I am an Invisible chronic Illness , I am a false brain tumor 🧠 YOU can't see or hear me but your body feels Me . I can attack you anywhere & anyhow I please , I can send you to the ER multiple times & have you get scans of your head , poked in your back to get fluid out of your head , begging for some kind of relief .

I can cause your head to explode & your vision to dim . REMEMBER when you & energy ran around together & had so much fun ? I took energy from you & gave you exhaustion , try to have fun now , I also took sleep from you & in its place gave you brain fog - Confusion & disorientation . I can make you dizzy & sick , fill your ears with constant noise & a whole host of things that noone else believes & oh yeah , I can make you feel anxious & depressed too !

If you have something planned , or are looking forward to a great day , I can take that away too !
You didn't ask for me , BUT I chose you for various reasons , Maybe I chose you for your genes , Maybe it was those pills you took , or the virus you NEVER recoverd from . Anyways , I'm here to stay !
I hear your going to see a doctor who can't get rid of Me - I'm rolling on the floor laughing !

You will have to go to many MANY , doctors until you find one who can help you effectively you will be put on pain pills , sleeping pills told you are suffering from anxiety & depression given pills that make your body tingle all over the place & when they get really desperate they'll drill holes in your head , you'll be told just to loose weight & eat properly I will go away . Told to think positive & most of all NOT taken as seriously as you feel when you cry to the doctor telling them how much pain your in everyday .

Your family & friends & co-workers will listen to you until they just get tierd of hearing about how I make you feel , some of them will say " Remember you can't do the things you used to do 20 years ago , some will talk behind your back saying NOTHING is even wrong with her she looks fine NOT knowing what you feel inside .

In closing ( I hope you keep this part a secret . I guess you already found out , The ONLY place you can get any support & understanding in dealing with me is other people with IIH )

09/01/2021

It’s September!💚💙 Which means it is IIH awareness month!! I was diagnosed with this horrible condition in February 2017 and my life hasn’t been the same since. One day there will be a cure and one day they will be able to recognize this agonizing condition fast enough to make a change! We are warriors and we fight daily!