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...
Ok, so I'm having some anxiety and I need you guys to talk me off the ledge. Just some background, I was diagnosed 2 years ago. I am on 2000mgs of Diamox and I have responded very well to the medication. Since diagnosis, I have had two pretty big flare-ups in the past 2 years. The first time was a year ago. At that time I had a CT scan which was normal and then a spinal tap, and my Diamox was increased from 1500mg to 2000mg. My symptoms remained pretty well managed until about 4 weeks ago when I started having the worst headaches I've had. Last Wednesday I had an LP and I felt immediate relief (despite the low pressure headache that started right after). At that tap my OP was 40 which is the highest it's ever been and perplexing since I'm on such a high dosage of Diamox. My neuro had no answers since nothing else has changed in my life or with my medications and just had me continue with my current dosage and let's wait and see. But, he also said that maybe we should do another MRI since it had been a couple of years.
So, now I'm freaking out. I can't help be afraid that I have a "real" brain tumor or some other structural problem. I keep telling myself that if it was a brain tumor they would've caught it since I've had an MRI, MRV and a CT scan. Plus, the treatment has worked indicating that this is your standard IIH. But, I"m still scared.
Plus, I think my "headaches" are different than most. It's not really a headache. It's more of a shooting pain in the back of my head and neck that is extremely painful and makes me cringe and tense up. It throbs, but is positional in nature. It mostly happens when I lay down. And, it's very specific in that it's always on the right side, back of the head and down the right, back side of my neck. When I had my low pressure headache it was very specific to my neck as well, not so much my head. Does anyone else have symptoms like this?
I have been managing really well with this diagnosis for the past couple of years, but all of the sudden I'm totally freaked out and very scared.
So, now I'm freaking out. I can't help be afraid that I have a "real" brain tumor or some other structural problem. I keep telling myself that if it was a brain tumor they would've caught it since I've had an MRI, MRV and a CT scan. Plus, the treatment has worked indicating that this is your standard IIH. But, I"m still scared.
Plus, I think my "headaches" are different than most. It's not really a headache. It's more of a shooting pain in the back of my head and neck that is extremely painful and makes me cringe and tense up. It throbs, but is positional in nature. It mostly happens when I lay down. And, it's very specific in that it's always on the right side, back of the head and down the right, back side of my neck. When I had my low pressure headache it was very specific to my neck as well, not so much my head. Does anyone else have symptoms like this?
I have been managing really well with this diagnosis for the past couple of years, but all of the sudden I'm totally freaked out and very scared.
I will offer you all I know. It's seems that as time goes on our condition worsens, sometimes more quickly for some than others. That might explain the higher OP, or it could have been the particual time of day or moment. Since our CSF fluctuates so many times during the day, it is possible that that caught it when it was higher.
As far as your headaches, I personally do not believe you have a brain tumor, but it could be an underlying condition that is making your OP worse. I had a mild Chiari malformation, it technically was not considered Chairi because it wasn't a standard size. It usually has to be at least 5mm, but mine happened to be 3mm. Chiari and PTC have over lapping symptoms. My IH was induced by the Chiari. So I actually never had IIH, in fact I may no longer have IH at all.
So, my point is that there may be something that is affecting your pressures and your doctors may not know what it is yet. It almost sounds like migraines except for the positional part. In which case it sounds more like IH. I suffered with two different headaches. Headaches that were on the top and sides of my head and another type at the back of my head, neck and upper back.
Have they done blood tests to rule out other possible conditions? It may be good to just get a follow up to make sure you head is still normal.
You are not freaking out btw, it's normal to feel anxious about the unknown. It's not fun waiting in pain or for answers, let alone both. sorry you have been feeling worse lately and I hope your doctors are able to at least Eli ate what it is not. Although, it would be better if they did know what it was.
Hugs to you and my prayers are with you.
Mallory