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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Just diagnosed

Tiffany143
Tiffany143

Hello, all...


The past two weeks have been pretty crazy to cap off the past year or so...I’d been progressively getting worse and worse headaches and even worse problems with dizziness/vision loss. About a year ago I went to my PCP to tell them I’d been having troubles working out because I’d get dizzy and light headed. She told me I was probably just sensitive to being warm... Okay. So I went on, trying to do my best to keep myself cool while working out. Dizziness got worse. Vision loss started to be a problem. I though maybe I wasn’t eating right beefier working out or eating too soon...anything to explain the issue.


Well, being 28 and not having vision insurance it didn’t cross my mind to go to the optometrist, but my mother made me go two weeks ago and low and behold both my optic nerves were severely swollen. So much so that the eye doctor personally called an ophthalmologist to make me an appointment immediately. So next morning I go to see him. Have a few tests done...he orders an MRI, an MRV, and a spinal tap, all to take place in the coming week. 


The MRI and MRV were clear of tumors and any blood clots...so that’s the good news. I had the spinal tap on Monday and the hospital had me met with a neurologist the very next day because my pressure level was at 40mmHg...didn’t sound terrible until they told me what my normal should be (between 10 and 20)...


So, the neurologist started me on Diamox immediately. I’ve been on it for four days...


I’m not sure yet if I’m still having a bad reaction to the spinal tap or if this has moved into side effects from the medication, but I have had a SPLITTING migraine all week, haven’t been able to stand or sit up, even slightly reclined, for very long without getting nauseous along with a splitting headache and the only relief I get is if I’m laying completely horizontally with a pillow under my head.


I’m currently on the floor at work in the back room with all the lights off because I was having a panic attack about almost throwing up...


I was told the pain is from my brain relaxing after being under so much pressure for so long but what am I supposed do if I can’t even function long enough to be at work. 


Thanks for reading...I’m just scared and I’m angry that no one took me seriously when I brought this up a year ago. It wouldn’t have been as bad as it is now if something was done about it when I told the doctor something didn’t feel right... 

Mrs_Hill
Mrs_Hill
You are not alone! It will take some time for your body to adjust to the medications. But know and understand that medications are just a bandaid and your fluid can possibly build back up. I’m on diamox and topamax twice a day. The combination of both seem to help but side effects are horrible. Suppressing appetite, nothing carbonated, tingling toes, but headaches are minimal. I just had my second spinal tap as your read. After your first spinal tap I would have suggested 48-72 hours of bed rest. Your probably experiencing a bad spinal headache. Hope this helps. Get rest and try to lay on your stomach more than anything. It helped me a lot. I wished someone would have listen to me as well my vision and hearing is awful. We have to do something to spread awareness. But only we can do it, non sufferers don’t understand.
nlemay
nlemay
New user here just found this site today! I wish I could’ve read this sooner sounds like you need a blood patch. Hope you’re feeling better!
bays_1116
bays_1116
Hi Tiffany, I also was just diagnosed a few weeks ago. It is new and scary for me as well. I just had my first spinal tap today and will start on diamox next week. My opening pressure was 33 and they drained me down to 20 (which is still on the high side of normal). My pulsatile tinnitus hasn't gone away like I was hoping for it too. What side effects did you experience from the Diamox? I'm not sure what to expect. And did that help the PT at all?
Tiffany143
Tiffany143
Hey! It’s been a month since my spinal tap and I definitely had a spinal headache. It lasted about 7-8 days before it let up. I’m feeling better from that at least but the diamox side effects aren’t ideal...

I was put on 500mg by my neurologist to start with right after my spinal tap. After a month of being on it I’ve definitely experienced the side effects...

I’ve had loss of appetite and have lost about 17 pounds already.

I was having really bad nausea but I started taking CBD gummies about two weeks ago and it’s greatly helped ease the nausea so at least now I can eat when I feel like it instead of being nauseous AND not hungry.

I have tingling really bad. I get it in my hands and feet mostly but also my face sometimes. It’s about 10x worse than if my foot had fallen asleep... really weird.

I’ve had a bit of confusion with words, not being able to remember what (simple) word I want to use, and slow to come to thoughts.

I get dry mouth even though I drink quite a bit of water...still probably not as much as I could but with this dry mouth I probably drink more than I was.

I get slight ringing in my ears. It’s not constant and it comes and goes...still annoying and loud.

And I’m sooo tiiired. All the time. I’m not sure if this is specifically related to just the Diamox or my diagnosis cause I was already tired most of the time before.

I’ve also just had my one month check in with the neurologist to discuss how I’ve been feeling and side effects I’ve been experiencing to determine where I’m at...he doesn’t think the 500mg I’ve been on has helped much so I’ve actually been increased to 750 in the past couple days...I’ll have to see if the side effects get any more intense with the increase but I’m hoping it at least helps the headaches I’m still getting from the IIH around my eyes and throbbing in my head if I exert myself AT ALL. Walking up a slight incline. That’s a no. Picking up my fat cat. That’s also a no. Anything that strains me in any way and I get a headache
valmarsh
valmarsh
Hi everyone! I am not sure if this helps with everyone but drinking a glass of OJ EVERYDAY will help with the tingly hands and feet!!! My ophthalmologist recommended it actually and it works for me! If I miss just 2 days of OJ the tingly comes back full force.