This is the happiest post I'll ever make here. It's been a few weeks in the making as a few of you know from knowing me IRL, but I just had it confirmed on Friday and I've been coming off a very nasty medication since then soooo I hadn't posted here yet.
My PTC (intracranial hypertension) is in remission.
I've had ten years of hell, and I can't tell you how happy that makes me. My optic nerves have minimal swelling. I was still having head pain (but nothing in the 'kill me now' level)...but that's subsiding as well [and they do not think it's PTC head pain] and I think it will turn out to be yet another shitty side effect of the high dosage of diamox I had to take.
Another side effect for me was severe muscle weakness. My back and neck were also constantly hard as a rock from near constant muscle spasms that muscle relaxors didn't do too much for...except for the ones that they REALLY didn't want me taking more than a day or three. That is ALSO going away.
As are the hand palsy I'd get and a bunch of other fucking problems that just sucked but didn't suck more than going blind
I'm sitting here after doing some work typing this up...drinking a diet cherry coke. I missed that more than I could ever express to you. I couldn't drink soda because another shitty side effect made carbonation taste horribly metallic. I may have to try beer again!
I didn't believe I was going into remission when they first thought I was. When they said yep it's confirmed...I still was afraid the other shoe would drop. I still am a little bit...but I feel better than I have in 10 years.
I couldn't sleep well last night, because I didn't hurt. Yup, nothing ached at all and it was weird. Wonderfully weird.
I wanted to say a big thank you to this community and many of the individuals in it. This illness has been a fucking hell the last 10 years. The internet kept me from going completely insane
Gaming and the people I've met through gaming allowed me to social interact during times that I couldn't physically do more than get out of bed some days.
So what now? Oh, I've got lots to do. =) I'm resuming biking (almost) immediately, my spouse had to dig 'em out. I have an appointment with my GP doc on rebuilding muscle that was lost and now that my muscles will work correctly, coming up with a safe way to get back to what I used to do. Pretty much the people who know me are worried I'll start running miles tomorrow or something and kill myself (I feel like I could...but I seriously can't...not yet
).
My professional life is such that I ended up in an employment situation to work around my illness. I no longer need to do that. But I'm finding I enjoy what I do and it's paying the bills. That's about as much as I'll get into that area of my life here...but something I started as a 'well...I don't have too many options in this economy' is now something I'm enjoying enough to continue with for now.
Getting back to my old self, travel, getting a million and one projects done that had to be put off 'cause I physically couldn't get it done or felt like shit trying...oh yeah.
I'll still be around Lanys, after all what else would I do to fuck off time while working odd hours
I gave up WoW the end of last year over no time, and looks like I won't be returning any time soon. The graphics outside are pretty fucking cool.
As far as 'relapse'...yeah the PTC can flair up again. That's possible. For many people once it goes into remission...that's it. I hope that's me. But I have chronic/severe and it took 10 fucking years to get a single remission so who knows? My docs are staying on top of it for flair ups. I can't control that, so I'm not going to worry about it. I'm just going to enjoy the shit out of now.
OH one final thing which is funny and not a biggie. So I had some vision loss left eye. Turns out to be something on the retina, TOTALLY unrelated. Anyway might be a scar that happened (they can just happen without any real injury you'd notice), or a mole (mole?! wtf) or even odd fluid build up (like a teeny cyst I guess?). Anyhoo I'm seeing a retina specialist on 9/11, where they'll shoot me full o' dye and figure out what the fuck it is and what they can do. But...it's NOT PTC. So yay! And it will probably be treatable in some fashion. Yeah it's one more thing, but it's a fixable unrelated thing so it's not a big whoop. Other than that shit, my vision is great. But it makes my left eye see weird and it's annoying. Right eye is perfect, left will be once this is fixed.
10 years of high pressure...and there's NO PERM. DAMAGE to my optic nerves, despite repeated episodes of vision loss. Fuck yeah! I rolled a natural 20 on that!
Anyway, I'm happier than I could ever express. And I'll be even happier next week once the diamox is all out of my fucking system hee!
Thanks again to all of you. Well, most of you. Some of you made my head want to explode!
But seriously...I'm overjoyed and I wouldn't be here without you guys.
/happy dance
I still use PTC) have shunts and swear by them. So I'm not shitting over it as an option.