I'm still struggling with the idea that I've got a disorder that probably won't ever go away. It took me a long time to come to terms with rhinitis; and that I'd have to be on meds for that for the rest of my life. But, now I've got this condition, it's just past the one year mark and I'm finally starting to get answers to what it is exactly that I've got.
Pseudotumor Cerebri (PTC). Officially, diagnosed and on meds; and continuing to be confirmed. I guess I was hoping someone would say that I didn't have it. Here are a few facts for those of you who might be interested in knowing what's actually going on with me...
Simply put, there is too much cerebrospinal fluid in your head, and there's no place for this fluid to go. (this is me...) The much larger second group develops pseudotumor cerebri and a direct cause cannot be found. The doctors have no idea what causes the primary idiopathic PTC. The disease is frequently chronic in this group and needs long-term treatment.
The common symptoms are
*Headache, dizziness and impaired vision. Headache is often worse on awakening, and can be intensified by coughing, laughing, bending over, crying, and increased physical activity.
*Impaired vision shows up in several ways. It can be visual blurring, brief moments of dimming or loss of vision called transient visual obscurations (this is actually what caused me to go into the doctor to get diagnosed), small specks appearing or vision distortions (items moving up or down).
Blindness can occur.
Other symptoms affecting PTC patients include: shoulder/arm pain, neck pain, memory problems, awkward coordination, muscle weakness, fatigue, back pain, and depression.
Possible symptoms include dizziness, hearing loss, ringing in the ears or noises within the head called tinnitus.
Regarding headaches: a study showed 92% of patients interviewed had headaches; 93% of those with headaches said it was the most severe headache they had ever experienced. The head pain was described as a pulsing headache that kept increasing in intensity. Another description was a "pressure" headache, resembling a percolator. Seventy four percent of those with headaches had it on a daily basis. Can also experience neck stiffness or nausea.
HELL YES! Not only do I get to suffer from headaches (non treatable so far by the way) but I also get to have nasty pain in my neck and back and get dizzy at random. Those are just the ones that have been happening lately. I can't tell you how much this sucks.
Apparently PTC only effect about 12,000 in the US; so YAY ME I picked out a nice rare one. Which means, the cure for something like this is pretty much not anywhere near anyone's mind or microscopes, at least not for a while.
The worst part of this is that I look totally healthy. So, when I complain about anything I get eye rolls, irritation and disbelief. Not to mention noone can tell me why I got diagnosed with this except that maybe I was a little overweight for a short period of time in my life and I'm a woman. Fabulous! Migraines were at least something I could manage; but it's no wonder the migraine meds never worked for me. lol
And now for some good news! PTC can last for months or for years. It can go into remission. For those in remission, PTC can re-occur 5% to 10% of the time. So, keep your fingers crossed for me. It's been a year, and it hasn't gotten any worse, but not any better either. I have my moments of total fear of going blind, but I'm slowly getting used to the idea that I won't ever be completely healthy.
Hooray for great genes!
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