- CASE FILE
I was diagnosed with IIH in October 2018. I am 41 years old and a single mom to a 13 year old daughter.
ABOUT THIS CASE FILE
I was diagnosed with Ideopathic Intercranial Hypertension (IIH) aka Psuedotumor Cerebri in October 2018. This is a rare disease and there is no cure. So I have all the symptoms of a brain tumor but no brain tumor. My skull keeps filling up with cerebral spinal fluid but is not being absorbed or draining. So it continually puts pressure on the brain and eyes. You can't die from this but you can lose your sight. So, I had went to the eye doctor to get my yearly eye check. I always pay out of pocket the extra $30.00 to not get dilated and get the eye scans. When the dr. came in she said I had a papilledema behind my right eye. She referred me to a neuro-opthomologyst. Which I had some field tests then sent to have MRI/MRV to rule out brain tumors. Then I had an ultrasound on both eyes. All my tests came out fine there were no tumors. *(Now only thing previous to this diagnosis is I have HPV in which I have had a leep procedure done, as I had some cancer cells show up on my cervix. I have my tubes tied. I am over weight. Other then that I have been heathy.)* So next step was lumbar puncture aka spinal tap. So I had that done and from what the doctor told me normal opening pressure is around 10, my opening pressure was 33. So that is when I was diagnosed positive for IIH. So now I have a Neurologist, a endocrinologist and a PCP that I go do regularly. I have had a total of 2 spinal taps so far, but my neurologist is talking about a shunt. Which consists of drilling a hole in my skull and running a tube into my stomach to drain the csf. I am just going to stick with the spinal taps. I am constantly searching the internet for research studies being done and I send them to my doctors. I have to be my own advocate because no one else is going to do it. I am on Diamox, topiramate, folic acid, zoloft, vitamin D, and baclofen. Before I went to the eye doctor in October I would get headaches but I have a high pain tolerance, I guess. Now since then, I cant make my bed without getting out of breathe, the sun is my enemy, loudness is my worse enemy, I am always in pain in my entire body, the 10 minute showers I took turned into 30 minute showers because it hurt so much to raise my arms for too long to wash my hair i would have to rest. I ended up cutting all my hair off because i couldn't handle it any more. I have to take showers at night otherwise i waste too much energy in the morning. Luckily i have a desk job otherwise i wouldn't have a job as i cant stand up for too long because it hurts. If i push myself too much i will be in bed for days be cause my body wont move. My hands and feet are always tingling. I am constantly tired yet when I go to bed I always wake up every couple hours. I am never hungry I am always thirsty I haven't drank any sodas in a year as they taste like metal now. I only drink water or lemonade yet maybe pee 3 times a day. I am over weight yet I dont eat a ton of food as I'm not supposed to eat anything with vitamin a or thiamine in it as that is supposed to give you a worse headache so i never know what to eat. I never remember thing, horrible brainfog. I had to hire some to clean my 850 sq ft apartment because I cant even do that. I also have to have my groceries delivered. I went to the grocery store, got dow 2 aisles and had to leave. I couldnt walk anymore, I was so out of breathe and in so much pain. I went out to my car and cried. I am 41 years old!!!! I really think this has to do with hormones, chemical and additives in our foods and our gut. Oh and I am a single mom of a 13 year old daughter. She tries to be understanding, but I feel horrible that she has to suffer with me. Sometimes I just cry because less then a year ago I was fine. I feel like I am living in this body capsule of hell. I hope that even if I'm not picked, that some with this disease will be. I am so tired. This is an invisible disease that is rare and chronic and so painful. Please help. Thank you ❤?