Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Brain & Nervous System
/ Pseudotumor Cerebri Support Group

Loss of sigh,dimox,and Lumbar puncture

Clowe4560
Clowe4560

Hello i'm a happy bubbly 17 year old girl who just started her senior year and was hit with a tornado of hospital vists and medications I started having problems with vision with my sight 8/14 and went and had my eyes looked at and the eye doctor said I lost all my visual feild, I was scared thinking I was never going to be able to see the person I loved or my future child so the eye doctor refered me to an neurologist but my appt was to far away and after a few days of having extreme headaches my mom took me to the childrens hostipal and there I was examined by nuermous doctors then I was addmitted so they could run test on me from blood to lumbar puncture to see the pressure in my brain and it came back to be over 50 and they took the pressure down to 28 instead of under 20 for the reason they couldnt lower it all the way that they took so much and they started me on diamox and that stuff knocks you out basically. I'm all new to this and don't know how to feel i'm trying to stay positive about all of this but it's getting really hard. Does anyone have any advice?

Ih8PTC
Ih8PTC
I’m so sorry that you have to deal with this especially at such a young age. If your optic nerves are so swollen from the pressure your vision may come back once the pressure is down. Diamox is a medication that makes you feel so awful and it sometimes doesn’t work for everybody, but Please keep taking it because you won’t know if it works for YOU unless you follow your doctors orders. Diamox is a miracle medication for some. I was on 2000mg a day and it depleted me, but I didn’t want a shunt or to go blind. I was so grateful it worked, but it took a while. I was on it for 5 years. I still see my Neuro-Ophthalmologist yearly and must keep my weight under control. I also exercise. You will feel bad from the medication so make sure they are checking you labs regularly (complete blood count and metabolic panel for electrolytes). The medication can drop your Potassium and that will make you feel so much worse! You really have to advocate for yourself because in reality there is not enough research on this condition and the doctors don’t know how we feel. Good luck, I hope you feel better soon!
ldgrenier
ldgrenier
Hey I’m also 17 I have been having insane headache sence I was 15. It was only until I got a spinal tap that I was diagnosed with IIH also so I totally get it! For me I have been working really hard with my neurologist, to find a medication that works for me. Before I agree to anything though I like to look into it a little,because one time he put me on this medication but it had really bad side effects. Good luck it get better, slowly, but it does!
Mrs_Hill
Mrs_Hill
I’m 27. I was just diagnosed in March, but was missed diagnosed since I was 15. I know it may all seem a bit scary to you right now, but consider yourself lucky that our rare condition is becoming more known about. I’m legally blind. My vision is 20/400+ in both eyes and they could never understand until now why my eyes were deteriorating without any reason. They never checked for papiledema or anything. I wish you all the best. The best advice I can give you is to take your medicine correctly. Be sure it won’t add to your symptoms. It will be hard as a teenager, but you can do it!