I took an inventory of the medications that I'm putting into my body and we're at nine; not including the steroid treatments on Mondays. With all of these chemicals floating around, I've obviously been experiencing a wide variety of side effects. On Monday I finally hit the "wall."
On Monday night, after I wrote my last post I had a very strong seizure. This one was especially unsetting because, while I was unconscious, I was walking around my bedroom, I approached our windows and called Sara who was in the next room with her aunt. I left a rambling message about the street and then my voice stuttered until I hung up.
I don't know what to say about this but I know I have to share because I'm genuinely afraid of where things seem to be going. Standing next to windows while having a seizure? How can this get any more disturbing?
Thursday, March 21, 2013
Monday, March 18, 2013
Sleep and Mania
I've been trying to utilize this blog more and more because I believe it's a good outlet for me to document and organize my thoughts, but also to communicate to interested parties that I wouldn't normally have the strength to talk to on a one-on-one basis. I have a therapist and our sessions are very tough for me to get through, so I can't imagine talking to family in-person about these issues.
An update:
Today I had my fifth week of steroid treatments. Everything went completely as planned, which is a very odd feeling in my world. The interesting thing about these treatments is the paradox between sleep and mania. For about 17 hours a day I'm completely exhausted but my brain is moving a mile a minute and I cannot relax.
An example would be my renewed interest in music. I sit in front of my newly acquired collection of cassette tapes and I can't decide on what to listen to, and by the time I put in a cassette, I've already changed my mind. And if I do start listening to an album, I'm 75% asleep while it's playing. Then there's the perfect six hours a day where everything is perfect. Sara's home, we're cooking dinner or watching a movie. I'm awake, alert but totally relaxed. I mentioned this to Sara yesterday, "I wish I could feel how I'm feeling right now... all the time."
To be honest, the time I spend writing falls in this six hour window when everything is just perfect.
An update:
Today I had my fifth week of steroid treatments. Everything went completely as planned, which is a very odd feeling in my world. The interesting thing about these treatments is the paradox between sleep and mania. For about 17 hours a day I'm completely exhausted but my brain is moving a mile a minute and I cannot relax.
An example would be my renewed interest in music. I sit in front of my newly acquired collection of cassette tapes and I can't decide on what to listen to, and by the time I put in a cassette, I've already changed my mind. And if I do start listening to an album, I'm 75% asleep while it's playing. Then there's the perfect six hours a day where everything is perfect. Sara's home, we're cooking dinner or watching a movie. I'm awake, alert but totally relaxed. I mentioned this to Sara yesterday, "I wish I could feel how I'm feeling right now... all the time."
To be honest, the time I spend writing falls in this six hour window when everything is just perfect.
Tuesday, March 12, 2013
Sleep -- Music
I barely slept on Sunday night in anticipation of my steroid treatment on Monday. I get nervous like something's going to go wrong; that's just me, I've always been that way.
In general, I haven't been sleeping well, maybe 4-5 hours a night with an hour during the day. Today has been completely different, but really, exactly the same. Last night I got 2-3 hours and this afternoon I only could muster up 45 minutes!
I'm happy to report that there was no seizure yesterday, but with little sleep, the risk gets higher and higher with each hour.
--
On a different note, I've been trying to find a hobby. That's kind of a funny sentence to write. Pre-epilepsy, I was really interested in photography, but for some reason or another that passion has yet to re-emerge.
I've always had a love for music but it's flew under the radar. I just assumed that it was a given, "music... yes." I mentioned to Sara that I was going to really explore my passion for music, (paying special attention to the term passion, just having a fair interest in music isn't going to be enough to keep my attention).
I'm also getting kind of nostalgic by picking up cassette tapes along with traditional digital media. Online, you can pick up a used cassette for as little as a dollar and not only is it nice to be expecting something in the mail, it's like I'm looking through old photos to connect me with my past. It's healthy and really, very refreshing to hold a cassette and hear the play button pop when the tape needs to be turned. Generation X... the cassette generation.
In general, I haven't been sleeping well, maybe 4-5 hours a night with an hour during the day. Today has been completely different, but really, exactly the same. Last night I got 2-3 hours and this afternoon I only could muster up 45 minutes!
I'm happy to report that there was no seizure yesterday, but with little sleep, the risk gets higher and higher with each hour.
--
On a different note, I've been trying to find a hobby. That's kind of a funny sentence to write. Pre-epilepsy, I was really interested in photography, but for some reason or another that passion has yet to re-emerge.
I've always had a love for music but it's flew under the radar. I just assumed that it was a given, "music... yes." I mentioned to Sara that I was going to really explore my passion for music, (paying special attention to the term passion, just having a fair interest in music isn't going to be enough to keep my attention).
I'm also getting kind of nostalgic by picking up cassette tapes along with traditional digital media. Online, you can pick up a used cassette for as little as a dollar and not only is it nice to be expecting something in the mail, it's like I'm looking through old photos to connect me with my past. It's healthy and really, very refreshing to hold a cassette and hear the play button pop when the tape needs to be turned. Generation X... the cassette generation.
Sunday, March 10, 2013
360° in 24 Hours
I mentioned in Friday's post that all the positive energy that I have could be sucked out in an instant; well that's what a seizure is! I had a seizure that night, the kind where I lose consciousness. It was painful and confusing, but after a good sleep and some heavy drugs, I woke up with the same positive attitude as Friday.
If you permit me, I'd like to elaborate on the details of the seizure. After a could days, I start to put together images of a seizure into usable memories.
Sara and I were driving back home from a doctors appointment; it was already dark. We were nearing our neighborhood (a little town center), when I immediately tasted play-doh and didn't recognize anything around me... only Sara. To say I didn't recognize anything is not to say I didn't have a deep understanding of where I was, which is the case. It's more like everything around me is now a different color, lights are in different places and my south-facing windows and now facing north. Odd, right?
My VNS has made it so I only lose consciousness in the most extreme cases. In this case, I don't remember Sara driving from the parking lot to the front of our building to help me upstairs. After I was home, I was having little seizures over and over for about 30 minutes. I took two Ativan and everything slowed down and eventually came back into focus.
After all of this, a smile is back on my face. Saturday night Sara decided to take me to a movie premier/screening of "Somebody Up There Likes Me" with Nick Offerman (Ron on Parks and Recreation). The Q&A section of the night was great, he is hilarious. Then she took me to a restaurant where I had the best reuben sandwich possibly conceived by man (sorry mom!). To top it off, we got home, glued ourselves to the couch and watched Justin Timberlake on SNL. It was a big F-U to my brain, basically saying that I don't have time for this shit... I have a life to live.
If you permit me, I'd like to elaborate on the details of the seizure. After a could days, I start to put together images of a seizure into usable memories.
Sara and I were driving back home from a doctors appointment; it was already dark. We were nearing our neighborhood (a little town center), when I immediately tasted play-doh and didn't recognize anything around me... only Sara. To say I didn't recognize anything is not to say I didn't have a deep understanding of where I was, which is the case. It's more like everything around me is now a different color, lights are in different places and my south-facing windows and now facing north. Odd, right?
My VNS has made it so I only lose consciousness in the most extreme cases. In this case, I don't remember Sara driving from the parking lot to the front of our building to help me upstairs. After I was home, I was having little seizures over and over for about 30 minutes. I took two Ativan and everything slowed down and eventually came back into focus.
After all of this, a smile is back on my face. Saturday night Sara decided to take me to a movie premier/screening of "Somebody Up There Likes Me" with Nick Offerman (Ron on Parks and Recreation). The Q&A section of the night was great, he is hilarious. Then she took me to a restaurant where I had the best reuben sandwich possibly conceived by man (sorry mom!). To top it off, we got home, glued ourselves to the couch and watched Justin Timberlake on SNL. It was a big F-U to my brain, basically saying that I don't have time for this shit... I have a life to live.
Friday, March 8, 2013
Wow
W-o-w.
After my three treatments at NW and first two home treatments of the methylprednisolone IV, I've had a roller coaster ride. Everything from over-sleep to insomnia, euphoria to depression and several "new" seizures (meaning they've been more predictable but extremely emotional). I'm taking it pretty well, but it's definitely a weird experience.
A little set back has been the high blood sugar that the steroids create, so I'm on a couple diabetes medications. In all, I've been taking care of it ok.
Tomorrow, I could pull a complete 180, but for now I'm enjoying the success concerning mood, which is something I take very serious.
With nine more weeks of treatments, we'll see if there's a dim light and the end of a very dark tunnel.
After my three treatments at NW and first two home treatments of the methylprednisolone IV, I've had a roller coaster ride. Everything from over-sleep to insomnia, euphoria to depression and several "new" seizures (meaning they've been more predictable but extremely emotional). I'm taking it pretty well, but it's definitely a weird experience.
A little set back has been the high blood sugar that the steroids create, so I'm on a couple diabetes medications. In all, I've been taking care of it ok.
Tomorrow, I could pull a complete 180, but for now I'm enjoying the success concerning mood, which is something I take very serious.
With nine more weeks of treatments, we'll see if there's a dim light and the end of a very dark tunnel.
Thursday, February 14, 2013
A Tough Sell to a Stubborn Bastard
I've been absent for quite awhile for a number of reasons. Reasons I'll try to explain.
I received a semi-diagnosis from Mayo Clinic in regards to my seizures. In medical terms: "Voltage-gated potassium complex antibodies with possible autoimmune encephalopathy." It's a relatively rare disorder involving an antibody in my blood attacking healthy brain cells... Autoimmune Epilepsy.
They're going to start an IV methylprednisolone trial next week at Northwestern Memorial. I'll have the first three treatments while admitted to the Video-monitored EEG unit at NW, then once a week for twelve weeks a nurse will visit my house to administer the treatments. After the twelve weeks, I'll go back to Mayo to see if there has been any improvement. Improvement will primarily be gauged by a pretty horrifying psychological test... the first one I did back in December was just a disaster.
Going back to last year, I can say there was a lot of lost time. I spent my Thanksgiving, Christmas and New Years having my body scanned, blood drained, spine tapped, and psyche picked apart. I understand that it's a essential, but it's physically very painful and emotionally devistating.
I'm still having seizures and they're getting stronger and stronger. I know the VNS in my chest is helping slow down a seizure when it starts, but lately all it's been doing is keeping me awake long enough to feel how truly painful they are.
The title of this post pays tribute to those who've pushed me to document this experience, not only for me, but for others in the future that these posts could help.
I received a semi-diagnosis from Mayo Clinic in regards to my seizures. In medical terms: "Voltage-gated potassium complex antibodies with possible autoimmune encephalopathy." It's a relatively rare disorder involving an antibody in my blood attacking healthy brain cells... Autoimmune Epilepsy.
They're going to start an IV methylprednisolone trial next week at Northwestern Memorial. I'll have the first three treatments while admitted to the Video-monitored EEG unit at NW, then once a week for twelve weeks a nurse will visit my house to administer the treatments. After the twelve weeks, I'll go back to Mayo to see if there has been any improvement. Improvement will primarily be gauged by a pretty horrifying psychological test... the first one I did back in December was just a disaster.
Going back to last year, I can say there was a lot of lost time. I spent my Thanksgiving, Christmas and New Years having my body scanned, blood drained, spine tapped, and psyche picked apart. I understand that it's a essential, but it's physically very painful and emotionally devistating.
I'm still having seizures and they're getting stronger and stronger. I know the VNS in my chest is helping slow down a seizure when it starts, but lately all it's been doing is keeping me awake long enough to feel how truly painful they are.
The title of this post pays tribute to those who've pushed me to document this experience, not only for me, but for others in the future that these posts could help.
Friday, November 9, 2012
Mayo Clinic Journal: Part One
Mayo Clinic journal part one. November 5-8, 2012.
It has taken my family awhile to urge me toward Mayo Clinic. I've been trying to trick myself into thinking that I didn't need this and the path I was taking was going to pan out somehow; this turned out not to be the case. Since August I have been trying not to be over-stimulated, as to not agitate my emotions and seizures. I've been off Facebook, blogging, even watching the news in fear of these outlets causing me to overflow.
Last week I laid next to Sara with my face in a pillow and agreed to seek treatment at Mayo. She worked to get me in and was resoundingly successful.
---
At Mayo, it's interesting because the hospital in connected to shopping malls and hotels via underground tunnels and skyways. I kept mentioning to nurses and doctors that I missed being outside to breathe fresh air; they would smile and reassure me that the weather was much better inside. We were there four nights and we got out only a couple times; we went to Target to buy new clothes for the next day (and the next) we didn't expect on being there.
---
I had two MRI's done while at Mayo. If you've never had an MRI, it's best for me to say "they're not so bad," even though they do take a bit of strength to get through. I'm slid into a tunnel while wearing a floppy hospital gown and paper socks with ear plugs installed. They tried to make me as comfortable as possible with foam wedges to support my back and head, (these also reduced movement on my part).
I closed my eyes loosely and tried to envision myself somewhere peaceful while the machine pulsed and whined for close to an hour. At first I saw myself walking along a hilly, wooded path that would open up to meadows of sheep or cows, but once the thought of my body being held down in the MRI, I began to feel anxious and afraid. This meant I should instead imagine myself somewhere without movement, watching a play or looking out a window on a train ride. That's exactly what I did; I saw myself sitting in a leather bench seat looking out a train window while crossing a huge bridge over a river. I saw the sheep on a hill and I noticed the grass looking bright green in comparison to the brown trees that were ready for winter. There were little towns in the distance and just before I could ask myself where the train was taking me, the technician was sliding me out of the machine. All I could do was smile.
---
(More soon)
It has taken my family awhile to urge me toward Mayo Clinic. I've been trying to trick myself into thinking that I didn't need this and the path I was taking was going to pan out somehow; this turned out not to be the case. Since August I have been trying not to be over-stimulated, as to not agitate my emotions and seizures. I've been off Facebook, blogging, even watching the news in fear of these outlets causing me to overflow.
Last week I laid next to Sara with my face in a pillow and agreed to seek treatment at Mayo. She worked to get me in and was resoundingly successful.
---
At Mayo, it's interesting because the hospital in connected to shopping malls and hotels via underground tunnels and skyways. I kept mentioning to nurses and doctors that I missed being outside to breathe fresh air; they would smile and reassure me that the weather was much better inside. We were there four nights and we got out only a couple times; we went to Target to buy new clothes for the next day (and the next) we didn't expect on being there.
---
I had two MRI's done while at Mayo. If you've never had an MRI, it's best for me to say "they're not so bad," even though they do take a bit of strength to get through. I'm slid into a tunnel while wearing a floppy hospital gown and paper socks with ear plugs installed. They tried to make me as comfortable as possible with foam wedges to support my back and head, (these also reduced movement on my part).
I closed my eyes loosely and tried to envision myself somewhere peaceful while the machine pulsed and whined for close to an hour. At first I saw myself walking along a hilly, wooded path that would open up to meadows of sheep or cows, but once the thought of my body being held down in the MRI, I began to feel anxious and afraid. This meant I should instead imagine myself somewhere without movement, watching a play or looking out a window on a train ride. That's exactly what I did; I saw myself sitting in a leather bench seat looking out a train window while crossing a huge bridge over a river. I saw the sheep on a hill and I noticed the grass looking bright green in comparison to the brown trees that were ready for winter. There were little towns in the distance and just before I could ask myself where the train was taking me, the technician was sliding me out of the machine. All I could do was smile.
---
(More soon)
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