The "proper" name for pseudotumor cerebri (PTC) is Idiopathic Intercranial Hypertension (IIH) but basically in simplist terms, I'm creating more cerebral spinal fluid (CSF) - our old friend from Chiari days - than is being absorbed by my brain or is being allowed to flow out of my brain, so my good ole brain is acting like there is a tumor up there, but there is none. Hence the term 'pseudo' so that's what I'm going to call it. More specifically, Paris, the Pseudotumor, after Paris Hilton.
The past few days I've been doing a shit ton of research to see what all of this means (because why the hell would Doctors actually sit down and take the time to explain this anymore when of course everything on the internet is true). It is rare and not much is known about it (of course) but there is some relationship with Chiari patients but more research is needed.
What I have found is that there is ultimately one really bad outcome of PTC - blindness. So I will be seeing a neuro-opthmologist (NO) soon to watch out for that. I'm pretty sure they are just making up types of doctors now. But this would explain why my eyes have felt totally shitty for awhile. I hate light and they are always incredibly sore, whether wearing glasses or contacts.
So, not so bad. Except the symptom that's been my biggest problem, the headaches, well they're not going away. Ever. Those days I want to hire a headsman to cut off my head aren't going anywhere. I am going to have a headache everyday that will vary in intensity. I'll have good days. I'll have bad days. My head is a pressure cooker.
I get to play Drug Roulette to find which drugs will help lower some of the pressure, get repeated spinal taps, take other medication to counter the side effects of the other drugs, meanwhile the headaches are here to stay.
The other option is surgery to put a shunt in which, based off some of the support group boards I've been reading are even less effective and more troublesome.
Seriously. I'm so fucking pissed off right now.
You've got to be fucking kidding me. Chiari, which is no fucking picnic, and now PTC!!!! And there is really know way, as far as I can tell, to attribute which symptom to which. Oh and in the meantime I also had a couple other abnormal other results from the LP that no one is really that interested in finding out about.
Well I'm determined not to let PTC control my life. Chiari hasn't. I can freaking live in pain, hell I've been dealing with depression for how freaking long now, I've dealt with the physical so far. I've been trying to research information about natural or lifestyle changes to help with the symptoms. Only thing I've seen has been about weight loss bc this seems to target the obese. I've been working on that but I need to include more physical activity. I am going to work with a friend to see if there are any good foods to eat when one has migraines, see if that helps.
It's going to be slow but I'm just tired of this.
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