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...
I was diagnosed with pseudotumor cerebri less than a week ago. I've cried plenty, wanted to cry yesterday but I think I'm out of tears. My doctor put me on a medication to help reduce the pressure, but it lowers the blood pressure and I have scary low blood pressure as it is. I was concerned about that, and started my first dose this past Sunday and ended up in the emergency room with an allergic reaction.
On top of that, I'm in the process of confirming POTS and ileitis. I'm scared, and I feel overwhelmed, and I'm not sleeping well.
IIH/PTC can be caused by obstructive sleep apnea, especially in men. (It is also associated with a low testosterone in men) OSA causes trouble sleeping. If you have OSA, it may be that you can get significant movement on your ICP by treating the OSA. But make sure they use BiPAP and not CPAP because the expiratory pressure with CPAP is also a Valsalva. BiPAP is much better tolerated in IIH. I did not tolerate it at all, and had jaw surgery which put me into remission. Btw testosterone supplementation can make OSA worse so this must be managed before adding T. I'm just assuming you are male due to your username??
If I don't respond, send me a PM. I recently got back in my home after being evacuated from a fire, and I've been on a bit of overwhelm myself. Although while this site used to send me an email when I got a PM, I'm not sure it does that anymore. will check my settings again. They changed this site a few years ago and it hasn't been the same since.
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I’m female, but a fan of dad jokes, and has a tough time coming up with a name, haha.. I was surprised to hear about crying and increasing pressure, which is unfortunate because that’s what I feel like doing again. Last night, my vision in my right eye got very cloudy and at one point there was a large black spot in the center of it. This happened while I was driving. I was hoping it had something to do with my contacts so I cleaned them and rinsed my eyes out. This morning, it is still hazy and I feel nauseated and dizzy. Everything feels so hopeless right now.
I hope your docs can help you get a handle on all of this. Please don't give up hope. There is something about increased ICP that makes us feel like this. Make sure they fully investigate any possible secondary causes. Also in my family we find that eating gluten makes ICP worse. There is some evidence that gluten can make the blood brain barrier leaky, which would increase swelling. Hang in there!
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