I was 12 when I got iih in the 90s.. then it can make when i was 36 Long remission.. then came back all of a sudden. Wish they would research more for us who have iih

As someone who was diagnosed with IIH (I prefer to call it pseudotumor cerebri) in July 2019, it was definitely scary going through this and feeling alone. I’m still terrified that it’s going to sit and suddenly get worse, but I’ve been doing well and my eyes have been continually improving since my lumbar puncture while only taking half the usual dose (my medication made me feel incredibly sick). It has been nice seeing this covered a little more over this year and I hope some awareness can be spread. That summer was one of the hardest things I have had to go through. So much fear, depression, and anxiety came along with it. This is a difficult condition to manage at times but, although it sounds cheesy, we are all strong.

@meenakshijat2855

Жыл бұрын

Hey I'm having the same issue from last 1month and doctor said my optic nerve swelling beacuse of it and also my vision goes down after taking medicine my swelling of optic nerve reduced but vision didn't recover and I'm depressed because of that so please suggest me what can I do now waiting for vision to recover through medicine or going to other doctors even I'm can't able to sleep at night from last 1month beacuse of getting fear of become blind 😭😭

Am so sorry to hear that but god is there with you always have lots of faith you will go thru this ok Love you bb girl

Thank you for posting this was very helpful

I had this at 12 years old. Was declared legally blind. Children's hospital did wonders.

I got this when I was 12 and only 85 lbs; my condition was overlooked and I lost 80% of my vision in one and100% in the another eye. I have met alot of people with pseudotumor cerebri yet they were treated before vision loss. it is good to see more educational awareness building and helping

@Sunshine-vz2on

3 жыл бұрын

Bless you I hope you’re ok

I have had pseudo tumor cerbri 3 times. I had a build up of spinal fluid squeezing my brain. Causing my eyes to get stuck in my head in crazy positions. And I was at risk for going completely blind. They gave me spinal taps and caffeine as well as diuretics. To release the inner cranial pressure. I was told big women can get it its more of a thing we on get though men have been known to experience it but its far more rare in men.

I just found out I may have a pseudotumor TODAY. I’ve had headaches since I was 12 years old. I also started wearing glasses that same year. The doctors I saw today were very vague as too what was going on and they did not give me any insight into how sever this is. Thank you for this video. I needed some knowledge to help calm these nerves. Tomorrow I have an MRI scheduled for first thing in the morning. I’m in Little Rock, AR.

@ileryon4019

3 жыл бұрын

Update?

@forevercapturedbykaty

3 жыл бұрын

@@ileryon4019 MRI confirmed grade 4 in both eyes. Lumbar puncture was performed. They diagnosed me with an idiopathic pseudotumor. They started me on 2000 mg of diamox. I constantly feel sick to my stomach. Like I am on a boat. My balance is off. My DR. doesn't seem to believe that the medicine or the pseudotumor are causing these issues. The ringing in my ears is annoying. I barely get sleep even though I take 75mg of amitriptyline per night.... I have been trying to get in to see another doctor but it is really hard to find confident doctors in this field, might have to do with the small little state I live in.

@notabiologist7162

2 жыл бұрын

@@forevercapturedbykaty - Nausea & dizziness are symptoms of iih. Find a new doctor.

@forevercapturedbykaty

2 жыл бұрын

@@notabiologist7162 After another a cerebral angiogram was done they found that two veins are partially collapsed. I will have to have a stint placed.

@notabiologist7162

2 жыл бұрын

@@forevercapturedbykaty - I’m glad to hear they found that out! I will pray for your recovery, although I’m sure you will do fine. God bless you! 🙏🏻❤️😋

My mom was diagnosed in 2003 with idiopathic intracranial hypertension following several surgeries including Optic Nerve Sheath Fenestration. Her headaches have permanently gone but her vision loss still exists today. Other than the vision loss, she is perfectly active person but her day to day life has become miserable due to vision loss. This video gives me hope that she may see the world again (She can recognize bright light and shadows sometimes). Anything anyone can share with me I would so appreciate.

@meenakshijat2855

Жыл бұрын

Is your mother completely blind or have poor vision please reply me i have same problem from last 1month and just 18year old

I got this too. Got a shunt 10 days ago otherwise i would of been blind soon. I hate this illness. Nothing worse then a sickness that cant be cured

@iamdradjuayayra

4 жыл бұрын

I was diagnosed yesterday...I am up seeing flashing lights and my head is pounding. I will begin seeing specialist this week.

@wolvecry9374

4 жыл бұрын

@@iamdradjuayayra thats good. Without the shunt i would of been blind

@iamdradjuayayra

4 жыл бұрын

I was told to stay on the meds that I know have minimal fluid on my brain??? My eyesight is still awful and I'm having headaches daily? I was hospitalized for 3 days...I want second opinion your eyesight is nothing to play with. I go see an opthamologist next week on the 6th. This is a disease I wish on noone.

@abuwadie3

4 жыл бұрын

wolve cry how long were you dealing with it? Did you have pappiledema? How severe was it ? Did the shunt bring your vision back to normal!

@wolvecry9374

4 жыл бұрын

@@abuwadie3 hi. I got my first diagnosis in june 2019 shunt in nov 2019. Yes really bad papilladema almost went blind. Its not back to normal but better.

My son’s neurologist doesn’t even know what this is!!! He is 36, not overweight, and has had horrible head intracranial pressure headaches all the time, since he had Covid in January, and now it’s May! He has eye issues, and a “loop” in his head, was diagnosed with mold toxicity and then Lyme co-infections, Bartonella amd Babesia. He does have forward head posture, and I was taking him to an upper cervical chiropractor, but he’s too sick to go, and I’m chronically ill and in pain as well. How can a neurologist not know what this is???

Is there a way to repair the vision loss ?

Great video!

👏👏👏👍👍👍

That white noise in the background is really annoying

is there a cure?

@educip-institutodeeducacao6773

4 жыл бұрын

@Tee Crowbey how come?

@educip-institutodeeducacao6773

4 жыл бұрын

@Tee Crowbey How come? what medicine are you taking?

@bonitonastylish

4 жыл бұрын

Tee Crowbey why are using Gabapentin? Have you found a cure yet? I have papilladema stage 1 - I’m off Diamox for months now.. I feel better but still have those daily headaches & tension. I’m not sure if the surgery is the solution... please update!

@missmochi2774

4 жыл бұрын

There is no known cure but there is medication and surgeries which can decrease the pressure and pain.

muscle relaxants like clonazepam lower the tinnitus

This is very bad disease :(

This is my problem!!! Pleeeease help me! I’m in Texas but will travel wherever I need to go to get help. I have a headache/pressure everyday. I’ve also had migraines forever as well but I’ve done tons of research for this pressure problem and I know this is exactly what I have happening to me. I know my triggers for My migraines so I can pretty much control them but this pressure when I lay down is awful and nothing helps. Please let me know where I can email or call. I need help. 😢😢🙏🏻🙏🏻