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...
Hello again! I wanted to write a bit more about myself and my diagnosis diagnosis. Last July I was diagnosed with IIH with an LP, MRI and after a visit to the eye doctor that showed Papilledema. Since July 2017 I’ve had 5 lumbar punctures and a spinal blood patch. I don’t consider my self over weight, but have gained about 20lbs since I got married 3 years ago. I’m 35, 5’6, 155lbs. The past year my life change completely after my diagnosis. I can’t take Diomax because I’m allergic to it and want to have babies, but after my last LP I went for a second opinion and they saw a very low grade Chiari Malformation that may or may not be link to the IH. The only option I was left with after all the LPs and not being able to take the meds is the VP shunt, I also had a Lumbar Drainage for 3 days to test out if the shunt would work and most of my symptoms did go away. I’m reaching out to this group because I want to chat and meet people with this condition. I want to be a mother so badly and feel normal. Mostly I want to talk to talk to someone that knows and understands the way I feel with this invisible disease. Anybody out there? Thank you in advance.
I'm so sorry to hear about your diagnosis. what symptoms have you had? I had mainly brain fog and headaches, but never had papilledema. but the brain fog is pretty miserable. IIH can present like chronic fatigue. these problems just get worse as we get older. after age 40 a lot of people tend to have problems, not just IIHers. I got better with jaw surgery but I still have a lot of issues and I am chronically exhausted. I had 2 kids after age 40 and I am now a single parent with no family support. I would say that if you have a large extended family that can help you if you are ill when your kids are young (well, really, for the entire 18 years), then you might survive having kids with this diagnosis. but I would not recommend it, personally. hopefully you will be one of those people who gets better with a shunt and can go right back to life. I would wait to see how it goes after the shunt, before you make any big life changes.
I am allergic to Sulfa although I was not to Diamox. but I could not tolerate the sedative side effects. my problem was mainly caused by my sleep apnea. so the jaw surgery put me into remission. but it's important to know that most humans have sleep apnea and even small amounts of sleep apnea can cause intracranial pressure to rise, and sleep apnea gets worse as we age, particularly after age 40. and during pregnancy. my IIH came on during my second pregnancy, and I have to wonder if I would have gotten as sick as I did if I had not gotten pregnant again. pregnancy can trigger it. and pushing during labor is relatively contraindicated with IIH.