So far I've received ten out of twelve methylprednisolone steroid treatments for, what the doctors at Mayo Clinic believe to be, autoimmune epilepsy.
On May 7th, the day after my last treatment, I'm scheduled to travel back to Mayo to see if there's been any improvement. There've been many set-backs, seizures and the like, but I'm feeling good about what we're going to hear. It could be because our trips to Mayo have been a nice break from our troubles at home in Illinois, and time spent with Sara and my Mom is precious. It may seem silly, but we've been calling our trips up there as our "Mayo vacation".
Both Sara and my Mom have been going through some tough times at work and I think they enjoy the opportunity to spend some quality time together. Now, because it's warmer maybe we'll actually be able to walk outside instead of always using the interconnected tunnels from the clinic to the hotel. Plus, we won't have to literally run from the car to our trips to Target! One thing that we all seem to unanimously despise about Rochester, Minn. is that they don't serve Diet Coke anywhere! I don't mind being poked and prodded, but no Diet Coke? No!
All joking aside, it will be nice to see what side-effects of the steroids will subside in the future. Insomnia has been a big one; it seems I'm always completely exhausted but unable to sleep and I've been pacing the apartment at 3 am. There have been some very scary moments, like last Saturday when I had three seizures in a row while visiting Milwaukee. We just wanted to take a couple days and relax but I guess that just wasn't in the cards. I'd like to say we learn a little more about what's going on with every new seizure but we've been left confused, disheartened and all around frustrated, even angry.
What I'm feeling right now, positive or negative, I'm not going to share because it's all the more frustrating when what I've been feeling turns out to be wrong.
Friday, April 26, 2013
Friday, April 5, 2013
About Last Saturday
Last Friday and Saturday I started a new medication with the hope that it would help my restlessness. Lately, I've had this inner feeling to always be moving, even though I'm totally exhausted.
I started the medication late last week; to be honest with you, I can't remember which day because as soon as I washed the pill down I started having seizures.
It's been almost five years since my first seizure. After the doctors got them under control I had lost a week; amnesia. On Friday and Saturday, the amnesia was back. I only remember things from last week in 30 second intervals, like waking up at 4:30pm, thinking it was 4:30am and asking why my family was here and why the sun was up so early. I don't remember eating, drinking, using the bathroom, showering, or any other normal routine. This is just a case of "over-medicating," but it's deeply disturbing that a little pill the size of my fingertip can color my world black.
I started the medication late last week; to be honest with you, I can't remember which day because as soon as I washed the pill down I started having seizures.
It's been almost five years since my first seizure. After the doctors got them under control I had lost a week; amnesia. On Friday and Saturday, the amnesia was back. I only remember things from last week in 30 second intervals, like waking up at 4:30pm, thinking it was 4:30am and asking why my family was here and why the sun was up so early. I don't remember eating, drinking, using the bathroom, showering, or any other normal routine. This is just a case of "over-medicating," but it's deeply disturbing that a little pill the size of my fingertip can color my world black.
Sunday, March 31, 2013
Day Long Seizure
Last November, I had several very strong seizures while admitted to the Mayo Clinic video-monitoring unit. One of the seizures lasted 9 minutes; to put this in perspective, it takes 5 minutes to cause brain damage.
Today I had one, long, all-day partial seizure. With this one, my personality changed, I hallucinated, heard voices, I argued with my family about trivial things.
Based on today's seizure(s) and the one last Monday the 18th when I called Sara and stood by our window, explaining in gibberish what I was seeing, (I attached below is a link to the audio voice recording I sent Sara.) it's pretty obvious that there's something wrong; something different.
Based on today's seizure(s) and the one last Monday the 18th when I called Sara and stood by our window, explaining in gibberish what I was seeing, (I attached below is a link to the audio voice recording I sent Sara.) it's pretty obvious that there's something wrong; something different.
(I'm heavily into the postictal state, seizure hangover, right now).
I attached a link for you to hear the voice message I left for Sara while having a seizure (could be disturbing to some):
Click: Jeremy's Seizure Voice Message
Click: Jeremy's Seizure Voice Message
Thursday, March 21, 2013
The Wall
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?
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?
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.
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