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...
Hi everyone! I'm a 39 yo female, weigh 316 lbs, and my optometrist and opthamalagist both suspect that I have PCS.
I have severe anxiety, so waiting for every doctor's appointment is like a nightmare. I have an mri scheduled for Wednesday and I'm terrified they'll find something horrible in my brain.
It all started about 6 months ago, when I was driving down the street and I suddenly was barraged by spots and waves all over my vision. I thought for sure I was going blind. I relaxed and it went away after a few minutes. It was about the same time that I had started going off clonazepam, a tranquilizer which is notorious for having really wicked tapering symptoms, so I assumed that was the culprit, so I just tried to ride it out.
I was diagnosed with papilledema. My eyes have trouble adjusting to light changes, and I often have vision problems when tilting my head. Headaches aren't too frequent, though I sometimes get a dull ache in my head, and mild nauseau. Sometimes I just get a lightheaded feeling and some pain and pressure feelings in and around my eyes.
I noticed a lot of you describe a whooshing in your ears. It sounds to me more like a pulsing in my left ear, and I swear I can feel the pulsing, though maybe that's my regular pulse it's hard to tell.
So it goes from a horrifying fear of going blind to a fear of getting a death sentence, and sometimes i can't calm myself down.
So I was hoping to reach out to people who hopefully have had some similar experiences and maybe any helpful advice....especially on how to deal with the anxiety.
Looking forward to talking to you all!
I have severe anxiety, so waiting for every doctor's appointment is like a nightmare. I have an mri scheduled for Wednesday and I'm terrified they'll find something horrible in my brain.
It all started about 6 months ago, when I was driving down the street and I suddenly was barraged by spots and waves all over my vision. I thought for sure I was going blind. I relaxed and it went away after a few minutes. It was about the same time that I had started going off clonazepam, a tranquilizer which is notorious for having really wicked tapering symptoms, so I assumed that was the culprit, so I just tried to ride it out.
I was diagnosed with papilledema. My eyes have trouble adjusting to light changes, and I often have vision problems when tilting my head. Headaches aren't too frequent, though I sometimes get a dull ache in my head, and mild nauseau. Sometimes I just get a lightheaded feeling and some pain and pressure feelings in and around my eyes.
I noticed a lot of you describe a whooshing in your ears. It sounds to me more like a pulsing in my left ear, and I swear I can feel the pulsing, though maybe that's my regular pulse it's hard to tell.
So it goes from a horrifying fear of going blind to a fear of getting a death sentence, and sometimes i can't calm myself down.
So I was hoping to reach out to people who hopefully have had some similar experiences and maybe any helpful advice....especially on how to deal with the anxiety.
Looking forward to talking to you all!
Anxiety makes this so much rougher to go through doesn't it? Sometimes I wonder if I'm going insane! So sorry you can't get in to the neurologist until August, that wait must be torture! Waiting for the appointments is the worst part for me, I hate not knowing what's gonna happen!
Luckily I got into the neurologist already and she put me on Diamox, which has helped with my vision some...but I still haven't got the MRI done cuz that tunnel thing is too claustrophic for me...can't stand closed in spaces...so hopefully they can find a way to work with me. I have an appointment for my first LP tomorrow, not sure if they'll do it without the MRI, but we'll see, just can't wait to get these initial round of tests out of the way.
I've started exercising and eaing healthier and have lost about 10 pounds, so hopefully it keeps going in the right direction. My neurologist says she thinks the PTC will go away on it's own after I lose 20-30 pounds, so I hope that's right.
Just looking forward to feeling better!
Thanks for responding. I have always kind of suspected that I may have sleep apnea, because I snore and I can only get to sleep on my tummy. I also seem to have trouble breathing when reclined in a chair at a certain angle. So I'm hoping they'll test me for that at some point.
I would def. consider gastric bypass if they mentioned it, but I'm on Title XIX and I don't know if they cover it unless it's absolutely necessary.
I'm definitely putting my vision first, Diamox seems to be helping my vision a lot so far and I'm supposed to double it in a few days, so I'm hopeful that it will keep my vision safe.
Thanks for the advice. You're very sweet!
Would my neurologist refer me for a sleep study or my general doctor?
I was quite obese when this started forr myself as well. I make the same suggestions to everyone here, lifestyle and diet changes are a must and immediate. As your life depends on it, as some old members have lost vision, stroked, and worse. Remember the quote, to thy own self be true, it applies from here on out. You must start with being your own advocate, push nuero, and your nuero opth, get in with an ob/gyn having them check you for polycyctic ovaries. You'll do yourself a favor by covering all disease/conditions that cause secondary IIH.
Diet is a must water is now your best friend, if you drink soda, sweetened drinks, stop now. If you eat grain, stop now, no canned, boxed, preserved foods. Only fresh, homemade food, a good balance of protein, fruits and veggis. Stay away from all aged foods to include cheese, and go low carb, if you must have carbs include a small portion, like gold potatoes baked. Refined food is not our friend, a modified atkins or ketogenic diet kicks ass for me as it forced my body to burn fat for fuel and it straightened out a long time issue I had with hypoglycemia/ non diabetic. I use fasting as well, wake in morning water only and 4 days a week not eating until 1 or 2 pm.
I always suggest to start researching what is being do to our foods, it'll shock ya. Like white table sugar is 60 some oddx percent sucralose, poison!