Pseudotumor Cerebri | Ashley's Story

To anyone reading this and being diagnosed, don’t lose hope and know that things can get better. I was diagnosed with this on November 2019 after my eye doctor noticed I had a swollen optic nerve. I was lucky: I didn’t have headaches but sometimes during the day I would lose my peripheral eyesight for a couple of second. I’ve done an MRI (they discovered that my cerebellar tonsils aren’t exactly as they should be which it’s pretty common for those having PC) and after being diagnosed with pseudo tumor, I’ve been told to take diuretics . After taking the first pill my momentary visual loss disappeared and never came back. 3 months afterwards I was told that I had improved so much that I didn’t need any kind of medications anymore. Things went well, I know it’s not the case for anyone, unfortunately. Hope this helped someone being less scared and more hopeful

I was diagnosed with IIH in September of 2018. It was a very severe case, with my opening pressure being greater than 55. I was losing a significant amount of vision, so I had optic nerve fenestrations in both of my eyes almost immediately after my diagnosis (for those who don't know, basically they cut a window on the sheath of your optic nerve so the fluid can drain instead of causing continual pressure on your optic nerves). I was also placed on an extremely high dose of acetazolamide/Diamox. It's now January of 2020, and I have nearly tapered off the meds completely. In fact, the plan is to no longer be taking meds within the next few weeks. Although I am living with permanent vision loss, I would say I'm a success story and that there is hope!

On a early morning I woke up with severe eye pain, I work with ophthalmologists so I decided to get my eyes checked. After all the tests we noticed that my optic nerve was swollen, got sent for a MRI. I was completely scared the doctor wanted to know what was going in my brain & what was putting pressure on my optic nerves. Long story short 2 days before I was supposed to go in for the MRI I had a TIA (small stroke) got rushed to the hospital, turns out the TIA was caused by all of this 😓. Got sent for the MRI at the emergency room, later diagnosed with pseudotumor cerebri (IIH) at the age of 22!. Got a lumbar puncture with a pressure level of 38. I’ve currently lost 30lbs & doing much better 🙏🏻 GOD IS GOOD

We need more awareness. I have been diagnosed since 2008 and I'm fighting hard to keep what freedoms I have left. So many people are left with the wrong answers, trouble with medication, no jobs, blindness, not being able to work, etc. This disease is chronic, rare, and destructive. We all need help and fast.

This disease is debilitating. Thankfully mine is treated with medication (Diamox) and I only have very minor headaches a few times every month. Before, I couldn’t even open my eyes the headaches and pain were so bad. Multiple doctors at major university medical research hospitals looked over me saying I was fine, until a very young neurologist at a small clinic in South Dakota literally saved me. So grateful.

I'm an unusual case, I've been diagnosed with pseudotumor cerebri, though I'm a male and a young teen. (woman are 9 times more likely to get it) (plus it's around the ages of 30 and so) I've encountered many of these symptoms, especially with headaches behind my eyes. I hope everyone else with this condition makes a full recovery from it and doesn't lose any significant amount of vision :)

I got diagnosed with this many years ago. I’m far from obese. And so far no one has told me or made us aware of how this occurs. Especially in those who are not obese.

I guess I'm one of the lucky few that caught it very early. My symptoms just were severe headaches with vomiting, but not the vision lost. I got the fluid drained and put in diuretics. It hasn't come back, and it has been 8 years.

I'm crying. I know how this girl feels. This disease took everything away from me. My school, my friends, my social life, etc. I can't even count how many times I've been to the ER screaming, crying, begging for relief. I was diagnosed in January 2014 after experiencing the symptoms as early as September 2013.

Ick, i had this my last year of highschool. It was taken care of with a few spinal taps and some diuretics, I am so glad my mom kept taking me back to the hospital and advocating for me.

I am grateful for thjs video, because so little is still known even aftet 9yrs of this illness ... I noticed back in 2017 my vision was not being corrected with regular eye doctor visits. At the time one kind optician told me see a specialist and even wrote a referral but I lost my insurance and couldn't afford it. Finally got insurance again in 2019 and it wasnt until 2021 in my birthday month I got to see a specialist, cus of covid-19 and finally last month, I was seen by Hopkins. A miracle in itself, to be seen and properly diagnosed. I take comfort in the comments as well as this video, as she is not overweight. It's hard explaining to ppl. Reading up I see steroids can lead to this and I have had to have meds with high doses of steroids for nerve pains. I am here in the comments gleaning support, prayers and encouragement as I start my own journey to beating PTC /IIH. Grateful for my family's prayers, support and understanding. I will beat this and return to update. I now have to take the Diamox because me results are not looking good, and I already have serious vision challenges. So I wanted to know if anyone ever developed kidney stones or the blood challenges? I was also told, severally lose weight and I feel like whilst that's a solution, it's ONE solution. As I've come to read in the comments, some get told that and left alone, when the situation worsens. I am down to 1 meal a day and the weight comes on quickly but goes off slowly, so I discovered it's more than just losing weight, there are foods that trigger PTC or spinal fluid build up. Is there anyone who has any diet recommendations that worked?

Hey ladies, I’m late to this but I just want to say god bless all of you who had to deal with this while working, raising children and managing households, women are so strong, I am struggling to keep it together and I don’t have children and I’m blessed to not have to work, any tips would be so greatly appreciated

loving all the accents of all these doctors.

I have this same conversation had my shunt placed 2005 and im so blessed and rhankful God has blessed me to be here today

I was just diagnosed with this a few months ago, I have vision loss, blurry vision, constant headaches and migraines, pain behind the eyes, dizziness etc. I’ve been having these symptoms for over ten years with no answers and thankfully FINALLY an amazing eye doctor found out I have this condition. Going to get a stunt put in, in two months!

I have this, and I'm actually glad that there's a video about it not trying to force that the condition is about overweight people. It's actually made me cry, I live in the UK and nobody seems to get cared for like this. I would love to be seen by someone like this about my IIH, but I don't have money to

I have this as well. I was diagnosed September 2019 and was put on diamox. It saved my vision and I went 4 months without medication and any issues before it came back. I go to Wake Forest Baptist Health. They are a leading facility in the treatment of IIH like Johns Hopkins. If you can travel, it’s totally worth it! I just had an angiogram and found out my left transverse sinus is aplastic (it failed to develop normally) and my right venous sinuses are large and my blood drains through the right side. I also have stenosis on the right side which is the cause of my increased pressure. I will be undergoing stent surgery soon and I hope it helps. Good luck to everyone out there going through this too!

I was diagnosed with IIH 4years ago but we haven't that much to afford that expensive surgery.. now I'm just on my own... god bless you everyone... Last wrds: please don't take anything for granted ❤

I have had this disease for 3 years. I could not walk, headaches that kept me in bed. I was incontinent, my ears had a swooshing sound and I was legally blind and had 6 nerve palsy. I had a VP shunt surgery, but sometimes I still feel uneasy and my memory is not what it use to be. However, I am glad to have my vision back.

I know how she feels, it all began to happen to me at 13 and ruined my life, my diagnosis changed every 4 months until I finally got to this diagnosis. It was the scariest thing I’ve ever experienced. It’s 3 years later and whilst nothing has improved I’ve learned to managed. Im hoping not to get a shunt. Even if the medication I’m taking isn’t working. Crossing my fingers