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 guys. :)
I was diagnosed about five years ago but was pretty much cured with a spinal tap and routine Diamox. My headaches disappeared and I haven't even needed glasses. But, the pressure headaches started back again for the first time in years and I'm scared it's coming back. Is it common to come back more than once?
Since then, I've had some other weird symptoms.. I have pain and weakness literally ever but it's been blamed on a syrinx and a tethered spinal cord. (But the syrinx hasn't caused headaches in the past, just neck and shoulder pain.) So it could be from that but I don't see why they would start now. Also: I've apparently had severe iron deficiency anemia that's gone undiagnosed for years. And I have a stomach ulcer so I haven't been able to take the iron pills. :/ I read online where that could actually cause pseudotumor. It seems like a plausible answer, though, because I've always been an extremely unlikely candidate for it. I'm 15 and average weight - I'm active and eat pretty healthy.
Does anyone have any advice? I'd really appreciate it. This whole thing is freaking me out.
I was diagnosed about five years ago but was pretty much cured with a spinal tap and routine Diamox. My headaches disappeared and I haven't even needed glasses. But, the pressure headaches started back again for the first time in years and I'm scared it's coming back. Is it common to come back more than once?
Since then, I've had some other weird symptoms.. I have pain and weakness literally ever but it's been blamed on a syrinx and a tethered spinal cord. (But the syrinx hasn't caused headaches in the past, just neck and shoulder pain.) So it could be from that but I don't see why they would start now. Also: I've apparently had severe iron deficiency anemia that's gone undiagnosed for years. And I have a stomach ulcer so I haven't been able to take the iron pills. :/ I read online where that could actually cause pseudotumor. It seems like a plausible answer, though, because I've always been an extremely unlikely candidate for it. I'm 15 and average weight - I'm active and eat pretty healthy.
Does anyone have any advice? I'd really appreciate it. This whole thing is freaking me out.
It is very common to have IH return, unfortunately. When it goes away, it often means you are in remission but not cured. I do not have a syrnix, but I have Arnold Chiari Malformation. For me, the Chiari caused the IH; my CSF flow was being obstructed causing a build up of fluid in my head. Often times symptoms can get worse over time, which may explain why you are having headaches again. Initially I was diagnosed with just IH. It took a year before they considered that I had Chiari. I have suffered from IH headaches (feels like a vice around my head), Chiari headaches (pain at the back of my head and base of skull), neck pain and back pain. I understand it is very frustrating to feel so good and think you are done with this terrible disease to only have it come back and disrupt you life and make you uncomfortable.
Have they considered a mild Chiari Malformation? Have you had any surgeries to help the tethered cord or syrnix?
Sorry I don't have any wonderful answers for you, I wish I did. Just wanted to post and give you some support. I'm 18 years old, so I understand the part of being young and suffering.
Hugs to you Emily. Hope you are having a good weekend.
Mallory
I had a tethered cord release surgery to stop the progression of symptoms but there was already a lot of irreversible damage done. As for the syrinx, unfortunately it's too long to drain but I'm working on getting the pain managed right now.
I'm sorry you have this problem.
A syrinx (syringomyelia) is more likely to cause the symptoms you have before IH would.
The cord syrinx I'm sure you know may know is a very dangerous condition to have.
Forget about the IH for now.
Discuss with your doctor A.S.A.P. about methods for getting your anemia under control, it is VERY important and some types of anemia such as those with a long term B-12 deficiency can be directly related to cord damage.
I am so sorry you have irreversible damage. Nothing is worse than being told the pain will never go completely away. Since Feburary of this year I have been dealing with chronic upper back pain. I went to the ER just last week because the pain had escalated. I am very fortunate that there is nothing serious going on in my back, but the doctors are not sure why or what is causing my pain. I cannot image what you have been through these past few years. I hope they are able to find something that will help manage your pain so that you can live as comfortably as possible. I know I am in e process of finding things that work for the pain.
I am glad you have joined our support group and hope you will find comfort knowing that there are others on here who understand (or at least to the best of our ability).