Hellooooo Internets.
In honor of the recent State of the Union Address and the fact that it's been 18 weeks since my last post, I bring you...
The State of the Beamer Address
and it's not all together a pretty state.
I've moved. Still work at Comcast. Still single. Still have a wonderful niece and nephew I love to pieces. My brother is great now that I no longer live with him. My car is back up and running. Life should be good.
Or so you would think.
On October 16 of last year I left work with the worst migraine I'd had in years. I took myself to urgent care, they gave me a shot of Imitrex and sent me home with a prescription for some migraine wonder drug. Take one. Repeat in one hour if still in pain. Do not take more then three in one day, or more than 6 in one 7 day period.
Obviously when I was still in pain after taking the third pill, I knew this wasn't the wonder drug for me. Not only that, I woke up still in pain the next day.
In one month I went through five visits to the ER/doctor's office and four so called "wonder" migraine drugs at $20 a pop before someone finally handed me a prescription for Percocet and gave me a referral for a neurologist and an MRI. Did I mention that I was in pain every day?
The first MRI never happened due to my severe claustrophobia, despite a prescription for Xanax. I persevered through my second, open, MRI and the radiologist said it was clean. Good news, no tumors. Bad news, still no idea what was causing the headaches.
I finally got in to see the neurologist on the day after Christmas and learned a couple things.
1. I would not be able to pass a field sobriety test if pulled over - even if I was sober.
a. I can not walk a straight line without falling over when taking a step with my left foot.
b. I can not touch the tip of my finger to my nose with my eyes closed.
2. The MRI wasn't as clean as the radiologist had thought.
The good news is, still no tumors. The bad news, lots of swelling.
My neurologist, who has no bed side manner and didn't bother to explain a damn thing about what was going on, but is damn good at what he does gave me a referral to an opthomologist for further testing and ANOTHER migraine wonder drug that actually works.
I got in to see the opthomologist just after the new year. So, imagine, if you will, it's January 2nd. I have had a headache every day since October 16, 2007. I have also missed over 100 hours of work and used all the sick time I'm going to get until October 1, 2008. I have no idea why I'm being seen by an opthomologist because my neurologist who happens to be one of the best at Kaiser, has failed to inform me - presumably because of his lack of bedside manner.
Eventually, after having my eyes completely and totally more dilated than they have ever been before, my opthomologist made it all clear to me. My neurologist saw something in my MRI that made him think I have this rare disease, in order to diagnose me the opthomologist had to find that I had swelling of the optic nerve - which she did.
Immediately I'm being swooped into this room to have pictures taken of my optic nerve while my pupils were open wide and saying ahh. And then I'm swooped into this room to be scheduled for further tests. She hands me this slip of paper saying;
"this is what we think you have - Pseudotumor Cerebri. Please follow up with your neurologist's nurse, they'll want to do an lumbar puncture. It's imperative you comply with medical advice and stay on schedule with your visits (I have to see her every 6 weeks) if you want to get this under control."
The nurse called me later that day before I had a chance to call her, and I had the LP the next day. Which might I just say - ouch. I am so not looking forward to my next one, or the one after that.
I still don't have an actual diagnosis, but it's starting to look more and more that it is in fact PTC, also known as Idiopathic Intercranial Hypertension. The pain is caused because there is a build up of pressure cause by too much cerebral spinal fluid building up and not draining. So far I'm being treated with Lasix, but it's not really working. Sometimes I have this unbelievable pain/pressure building up at the base of my skull - feels like someones shoved their fist up there, and yes, I realize that gives a whole new meaning to the term fisting - and then it shifts down to the base of my spine. Then it shifts again. It's like a see-saw. If they can't get control of pressure with diuretics, or repeated spinal taps, I may need to have a shunt surgically implanted to help drain the fluid. I may also need surgery to repair damage on my optic nerves caused by the pressure being put on them.
I haven't worked a full week since this whole thing started - Thank you FMLA. Because of you, I still have a job. I have a desk in a dark corner of my cube farm - doctor's order's - and sun glasses to wear when the light gets too bright. I also have a flat screen monitor - also doctor's orders - which is all that not easy to come by in my department. I hate that I'm in pain all the the time, and it scares me to death when I wake up and can't see out of half of my right eye, or when I start to see double on my drive home.
This disease is so rare that it only effects 20 in every 100,000. Mostly overweight women in their childbearing years. Which is funny when you consider I recently lost fifty pounds - most of which I've put back on thanks to one of the migraine wonder drugs I am finally getting off of. Obviously, it's important I lose weight along with staying on all my meds.
So. The good news is this isn't fatal. The bad news is I may go blind. But as my roommate said when I told him "yay, dog"
So, How're Y'all doing?
The State of the Beamer Address
and it's not all together a pretty state.
I've moved. Still work at Comcast. Still single. Still have a wonderful niece and nephew I love to pieces. My brother is great now that I no longer live with him. My car is back up and running. Life should be good.
Or so you would think.
On October 16 of last year I left work with the worst migraine I'd had in years. I took myself to urgent care, they gave me a shot of Imitrex and sent me home with a prescription for some migraine wonder drug. Take one. Repeat in one hour if still in pain. Do not take more then three in one day, or more than 6 in one 7 day period.
Obviously when I was still in pain after taking the third pill, I knew this wasn't the wonder drug for me. Not only that, I woke up still in pain the next day.
In one month I went through five visits to the ER/doctor's office and four so called "wonder" migraine drugs at $20 a pop before someone finally handed me a prescription for Percocet and gave me a referral for a neurologist and an MRI. Did I mention that I was in pain every day?
The first MRI never happened due to my severe claustrophobia, despite a prescription for Xanax. I persevered through my second, open, MRI and the radiologist said it was clean. Good news, no tumors. Bad news, still no idea what was causing the headaches.
I finally got in to see the neurologist on the day after Christmas and learned a couple things.
1. I would not be able to pass a field sobriety test if pulled over - even if I was sober.
a. I can not walk a straight line without falling over when taking a step with my left foot.
b. I can not touch the tip of my finger to my nose with my eyes closed.
2. The MRI wasn't as clean as the radiologist had thought.
The good news is, still no tumors. The bad news, lots of swelling.
My neurologist, who has no bed side manner and didn't bother to explain a damn thing about what was going on, but is damn good at what he does gave me a referral to an opthomologist for further testing and ANOTHER migraine wonder drug that actually works.
I got in to see the opthomologist just after the new year. So, imagine, if you will, it's January 2nd. I have had a headache every day since October 16, 2007. I have also missed over 100 hours of work and used all the sick time I'm going to get until October 1, 2008. I have no idea why I'm being seen by an opthomologist because my neurologist who happens to be one of the best at Kaiser, has failed to inform me - presumably because of his lack of bedside manner.
Eventually, after having my eyes completely and totally more dilated than they have ever been before, my opthomologist made it all clear to me. My neurologist saw something in my MRI that made him think I have this rare disease, in order to diagnose me the opthomologist had to find that I had swelling of the optic nerve - which she did.
Immediately I'm being swooped into this room to have pictures taken of my optic nerve while my pupils were open wide and saying ahh. And then I'm swooped into this room to be scheduled for further tests. She hands me this slip of paper saying;
"this is what we think you have - Pseudotumor Cerebri. Please follow up with your neurologist's nurse, they'll want to do an lumbar puncture. It's imperative you comply with medical advice and stay on schedule with your visits (I have to see her every 6 weeks) if you want to get this under control."
The nurse called me later that day before I had a chance to call her, and I had the LP the next day. Which might I just say - ouch. I am so not looking forward to my next one, or the one after that.
I still don't have an actual diagnosis, but it's starting to look more and more that it is in fact PTC, also known as Idiopathic Intercranial Hypertension. The pain is caused because there is a build up of pressure cause by too much cerebral spinal fluid building up and not draining. So far I'm being treated with Lasix, but it's not really working. Sometimes I have this unbelievable pain/pressure building up at the base of my skull - feels like someones shoved their fist up there, and yes, I realize that gives a whole new meaning to the term fisting - and then it shifts down to the base of my spine. Then it shifts again. It's like a see-saw. If they can't get control of pressure with diuretics, or repeated spinal taps, I may need to have a shunt surgically implanted to help drain the fluid. I may also need surgery to repair damage on my optic nerves caused by the pressure being put on them.
I haven't worked a full week since this whole thing started - Thank you FMLA. Because of you, I still have a job. I have a desk in a dark corner of my cube farm - doctor's order's - and sun glasses to wear when the light gets too bright. I also have a flat screen monitor - also doctor's orders - which is all that not easy to come by in my department. I hate that I'm in pain all the the time, and it scares me to death when I wake up and can't see out of half of my right eye, or when I start to see double on my drive home.
This disease is so rare that it only effects 20 in every 100,000. Mostly overweight women in their childbearing years. Which is funny when you consider I recently lost fifty pounds - most of which I've put back on thanks to one of the migraine wonder drugs I am finally getting off of. Obviously, it's important I lose weight along with staying on all my meds.
So. The good news is this isn't fatal. The bad news is I may go blind. But as my roommate said when I told him "yay, dog"
So, How're Y'all doing?