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 had symptoms for four months before diagnosis in mid September. The pain was everyday and never let up. After LP I felt great for almost two weeks then constant symptoms until I got put on medication (zonisamide). I slowly started feeling better and then for about a month I felt like I was practically in remission.
Now, I get symptoms all of the sudden out of no where. Pressure in ears first then migraine and eye pain, etc. Sometimes it may last six hours, sometimes two days. Sometimes I'm okay enough to work, sometimes I can't even leave my house. There is no rhyme or reason or pattern or anything.
Most of the postings I see, symptoms last for long periods of time and not just occasion random sessions. Does anyone else just have random bouts from a few hours to a few days and then nothing for a few weeks, etc. I really don't know what to tell my doctor on Monday unless I just read him this posting I suppose.
Now, I get symptoms all of the sudden out of no where. Pressure in ears first then migraine and eye pain, etc. Sometimes it may last six hours, sometimes two days. Sometimes I'm okay enough to work, sometimes I can't even leave my house. There is no rhyme or reason or pattern or anything.
Most of the postings I see, symptoms last for long periods of time and not just occasion random sessions. Does anyone else just have random bouts from a few hours to a few days and then nothing for a few weeks, etc. I really don't know what to tell my doctor on Monday unless I just read him this posting I suppose.
possibilities: chemical exposure (perfume), noise, stress, commotion, MSG, artificial sweeteners, gluten, sleep apnea (some nights worse than others), changes in barometric pressure/altitude.
the problem that may occur if you describe this to your doc, is he might try to say that you have migraines now and that your PTC is treated. I think that is absolute BUNK. but I see people get abused this way. if he insists on this, then ask for a preventive migraine treatment that might also treat PTC. Topamax, if you tolerate it. many of us do well on blood pressure meds, I'm on beta blockers. I find that the stress will spike my BP which will then spike my ICP. so blocking the BP spike can keep ICP more stable. the neuro will have no clue about this but may be fine with using it for what he thinks is migraine. whatever.
notice that most of the ICP triggers are also well known migraine triggers. I think that half the time they are misdiagnosing migraine and a lot of what they think is causing migraine is actually spiking ICP to cause episodic headaches. the headache pattern can be identical, so without confirming that your ICP is normal when you are having a headache, your doc really can't say it's migraine.
I'm going to neuro eye doc tomorrow. I can cope with the spikes so I hope he just leaves me as is. I don't think he will debate with me on if I have PST because he will want me to keep coming in to get my eyes checked and keep me as a patient. He is also a man of few words. My BP is under control right now with meds and I do not like Topamax. I also agree that there are probably a bunch of folks thinking they have chronic migraines who actually have PCT.