On Monday Dr. Macken and his Fellow Dr. Ericson increased my VNS amperage. It's now on for 7 seconds and off for 11. The magnate was also increased. Because of the increase my voice gets very raspy while the device is on. I actually like this because now I can tell that the VNS is on and working. Before Monday, the amperage was set so low that I could barely feel when it was on and when I swiped the magnate during a seizure it took me four attempts before it helped stop the seizure.
I had, what was going to be a small seizure last night before bed. Sara and I woke up very early yesterday so she could be to work for a morning meeting. Usually when I have a long day like this, I'm bound to have a little problem. When I felt it coming on, I swiped the magnate and it stopped the seizure immediately. I had no postictal feeling, nothing... I just went to bed. Nice.
One bad thing is now that my voice is so raspy every 11 seconds, people have been giving me funny looks when I'm placing an order at a restaurant or anything like that. I think it's funny, but I know what they're thinking... "Get me away from this sick bastard!" It kind of does sound like I have a throat cold or something. Sara and the guys at work are still getting used to it, well so am I. To hear me start a sentence with my normal voice and have it switch over to a 70-year-old smoker voice raises eyebrows.
Overall, I've been feeling ok. Let's just keep it at that for now.
Thursday, December 9, 2010
Monday, December 6, 2010
↑ x2
Today I'm having the VNS set to 0.5 milliamps, up from 0.25 milliamps. Right now my magnate is set to 0.5 milliamps and I was instructed to use the magnate to manually turn on the device everyday so I could get used to the higher amperage before my next office visit. The magnate will also be increased, this time to 1.0 milliamps.
I've been talking to my Case Manager at Cyberonics (the manufacturer of the VNS) and I asked her about some of the positive side effects of the device as they increase the amperage. She said it'll help with daytime fatigue, memory, and verbal skills. Sara and I were talking, kind of jokingly, about how I really need help in all these areas. Irene at Cyberonics said patients feel an improved sense of "well-being."
Obviously I can't complain about these side effects because they are so positive (I wish they helped me lose weight!). Ok, yes, I've slowly been gaining weight, it's most likely the fluctuating depression and complete lose of energy. When clothes I bought just last spring are barely fitting... well, it's disheartening to say the least. To be honest, most people would immediately get down about this or tell themselves that they're going to do something about it, but when I try on a newly ill-fitting piece of clothing I shrug and look for old clothes that used to fit before I was sick. This is horrible. These are the kind of feelings that I'm banking on the device aiding... I'm really putting all my eggs in one basket. My whole thought process is off and I admittedly need help in the psychological arena, but I still think it's scary that I need some sort of Star Trek, futuristic, alien mechanism hooked up to my brain to help with these feelings... and yes, to stop seizures.
I've been talking to my Case Manager at Cyberonics (the manufacturer of the VNS) and I asked her about some of the positive side effects of the device as they increase the amperage. She said it'll help with daytime fatigue, memory, and verbal skills. Sara and I were talking, kind of jokingly, about how I really need help in all these areas. Irene at Cyberonics said patients feel an improved sense of "well-being."
Obviously I can't complain about these side effects because they are so positive (I wish they helped me lose weight!). Ok, yes, I've slowly been gaining weight, it's most likely the fluctuating depression and complete lose of energy. When clothes I bought just last spring are barely fitting... well, it's disheartening to say the least. To be honest, most people would immediately get down about this or tell themselves that they're going to do something about it, but when I try on a newly ill-fitting piece of clothing I shrug and look for old clothes that used to fit before I was sick. This is horrible. These are the kind of feelings that I'm banking on the device aiding... I'm really putting all my eggs in one basket. My whole thought process is off and I admittedly need help in the psychological arena, but I still think it's scary that I need some sort of Star Trek, futuristic, alien mechanism hooked up to my brain to help with these feelings... and yes, to stop seizures.
Friday, December 3, 2010
Four "Shock" Seizure
I had a seizure last night at work. Everyone else left for home and I was there waiting for Sara to pick me up. I started having the numb hand feeling, like the recent strong seizure where I was conscious longer than usual. Once yesterday's seizure started and my right side went numb, I swiped the magnate over my chest to "activate" the VNS device, I had to swipe four times. It gave me a higher dose of amperage to stop or reduce the magnitude of the seizure. It did stop it after a couple of minutes... I knew that the device played a big part in how it all played out because this one had the potential of being a seizure where I lost consciousness and bit my tough, etc. The rough part is that I had to swipe the device four times for help.
I have an appointment with Dr. Macken on Monday to increase the milliamps. I'll mention yesterday's seizure and see if it's possible to increase the amperage for more than what we had planned at our last visit a couple weeks ago. Maybe then I won't have to swipe the magnate over and over like I did last night.
The postictal (seizure hangover) was pretty strong last night, I felt dizzy, tired, nauseous, and weak. As the VNS is increased it's supposed to reduce seizures, and the postictal state. I can't wait.
The VNS is designed for Epilepsy AND Depression which is a perk, of sorts. I've been talking to Sara about what state I'm in, emotionally, and it's probably good that this device can give me a little push through rough patches. I've been telling her that I hate the idea of needing a machine inside of me to make me feel happy, but she referenced people taking medication or having a drink, etc. I agree, but I still would like to know if I'm smiling because I have an implant and not because things are getting better or that I've been having a better day. Creepy thought, right?
I have an appointment with Dr. Macken on Monday to increase the milliamps. I'll mention yesterday's seizure and see if it's possible to increase the amperage for more than what we had planned at our last visit a couple weeks ago. Maybe then I won't have to swipe the magnate over and over like I did last night.
The postictal (seizure hangover) was pretty strong last night, I felt dizzy, tired, nauseous, and weak. As the VNS is increased it's supposed to reduce seizures, and the postictal state. I can't wait.
The VNS is designed for Epilepsy AND Depression which is a perk, of sorts. I've been talking to Sara about what state I'm in, emotionally, and it's probably good that this device can give me a little push through rough patches. I've been telling her that I hate the idea of needing a machine inside of me to make me feel happy, but she referenced people taking medication or having a drink, etc. I agree, but I still would like to know if I'm smiling because I have an implant and not because things are getting better or that I've been having a better day. Creepy thought, right?
Tuesday, November 30, 2010
It Works
Well, the VNS works. I felt a seizure starting yesterday so I swiped the magnate over the device, it gave me an extra dose of electricity to the Vegus Nerve and on to my brain and it stopped the seizure. I'm pretty impressed. They're upping the amperage for the device next Monday and the magnate amperage will double as well. I'm very lucky to have found a way to feel a little bit of control over the seizures. I was skeptical and very very nervous to have it turned on at first, but now it's somewhat of a parlor trick. I was a hit at Thanksgiving with my family, they all wanted to hear what my voice sounded like when I used the magnate and doubled the dosage. Right now the dosage is so low that my voice doesn't change but as they add amperage I'll have a very hoarse voice with a rapid twitter, kind of like you would hear when a taser goes off... "tick, tick, tick, tick." This goes on for about 7 seconds right now but will end up being on for 30 seconds and off for 5 minutes, unless I use the magnate to manually turn on the device during a seizure.
What's funny is that in the instructions it says that I can manually turn off the device if I hold the magnate over my chest for more than a minute. They reference singing or giving a speech... I got a little laugh. It might be a while before I'm ready to show off my pipes.
All-in-all things could be better. I was reading a friends blog and she listed what she was thankful for and it really got me thinking. There are a lot of question marks in my life right now... health, work, family. I do have a lot to be thankful for but I just don't have the energy to list them like she did. What I think about now is if tomorrow I'll have my job or if I'll live in a different city... will I be at this hospital or this hospital and for what? Happy isn't in my vocabulary right now. I know I'm thankful but one can have the world and not be happy... and likewise someone can be happy and have nothing.
I was telling Sara that I have absolutely no energy. She suggested, and has been pushing exercise but I can adamantly tell you it's not stress. It's much deeper than just stress. Obviously, stress is a part of life and has been firmly gaining ground but... I'm reluctant to say it... there are morbid thoughts lurking. I know that this usually means there's a side-effect of the medication making it's way into my psyche. I've seen this pop up very strongly in the past and when this happens there has to be a change in my mix of medication. This time it's manageable but just managing the side-effect is a huge task. Managing takes energy, strength not to let it in and fool me into taking drastic measures. The ability to keep up the facade of someone that's not having problems to my family and co-workers takes energy. The kind of energy I'm talking about is perseverance... it's been two and a half years... the soles of my shoes are worn down and I'm tripping over myself.
What's funny is that in the instructions it says that I can manually turn off the device if I hold the magnate over my chest for more than a minute. They reference singing or giving a speech... I got a little laugh. It might be a while before I'm ready to show off my pipes.
All-in-all things could be better. I was reading a friends blog and she listed what she was thankful for and it really got me thinking. There are a lot of question marks in my life right now... health, work, family. I do have a lot to be thankful for but I just don't have the energy to list them like she did. What I think about now is if tomorrow I'll have my job or if I'll live in a different city... will I be at this hospital or this hospital and for what? Happy isn't in my vocabulary right now. I know I'm thankful but one can have the world and not be happy... and likewise someone can be happy and have nothing.
I was telling Sara that I have absolutely no energy. She suggested, and has been pushing exercise but I can adamantly tell you it's not stress. It's much deeper than just stress. Obviously, stress is a part of life and has been firmly gaining ground but... I'm reluctant to say it... there are morbid thoughts lurking. I know that this usually means there's a side-effect of the medication making it's way into my psyche. I've seen this pop up very strongly in the past and when this happens there has to be a change in my mix of medication. This time it's manageable but just managing the side-effect is a huge task. Managing takes energy, strength not to let it in and fool me into taking drastic measures. The ability to keep up the facade of someone that's not having problems to my family and co-workers takes energy. The kind of energy I'm talking about is perseverance... it's been two and a half years... the soles of my shoes are worn down and I'm tripping over myself.
Tuesday, November 23, 2010
On
Well, I'm "on"
I had never been so nervous in my life. Well, maybe before the wedding, but a different kind of nervousness. I was sweating with a shaky voice before Dr. Macken came in. The nurse who took my vitals even mentioned my heart-rate which was sort of embarrassing.
Macken came in, checked out my scars (which was the first time an actual doctor has seen them) and started the steps to turn on the device. He gave me a wand that looked sort of like a big remote control and told me to find the device and place the wand over it. The wand was connected to a device with a screen that he used to control the milliamps I was receiving per "shock." I'm on .25 but I'll get up to about 3.0 apparently... upping the milliamps slightly per visit. I barely feel it right now, it just feels like a tug on the left side of my neck. I have a magnate that I can wave over the device if I'm having a seizure that ups the "shock" to .5 milliamps. This ampage makes me cough and my voice changes considerably, very hoarse. At the next appointment in two weeks the "shock" will be .5 so I'm supposed to use the magnate everyday to get used to the larger milliamp.
Sleeping was ok last night. Admittedly, I drank a little, though that's not recommended. It helped me forget the day and the appointments to come. I DO NOT recommend using alcohol for this purpose. It's a bad habit but I just couldn't help myself. Stupid.
****
I'm writing for myself now.
I've been very depressed this last year and it's escalated each day, especially this past couple months. I've been doing things like drinking and eating horribly... I've gained about 15 pounds... clothes are starting to not fit, etc. It's really like I don't care. Every facet of life in Illinois and health have been deteriorating. Everyone has been telling me, "it could be a lot worse" or "think about what you have", I know these facts. It could be a lot worse, I know we're trying our best to make things better but my attitude and quality of life is at it's lowest. I know I'm an experiment and now every time the device turns on I'll be reminded of that fact. Thank god it's not cancer, thank god it's not my heart or kidney or liver. It's my brain and let me just say that the brain is the only organ that can play tricks on you. It makes you smile when you're not happy, it makes you cry when your not sad, it makes you lonely when you're surrounded by loved ones and it makes you wish for a disease where people could give you answers to your questions. I've had very dark times so far and I know what it feels like to think morbid thoughts. I know when they're medicine related... you feel out of control and say things you don't really mean... desperate, horrible things. I feel very much in control of my thoughts lately... so they're not 100% medicine related... (maybe amplified by a couple of percentage points).
I wait for the day to end while thinking of a way I can end it.
I had never been so nervous in my life. Well, maybe before the wedding, but a different kind of nervousness. I was sweating with a shaky voice before Dr. Macken came in. The nurse who took my vitals even mentioned my heart-rate which was sort of embarrassing.
Macken came in, checked out my scars (which was the first time an actual doctor has seen them) and started the steps to turn on the device. He gave me a wand that looked sort of like a big remote control and told me to find the device and place the wand over it. The wand was connected to a device with a screen that he used to control the milliamps I was receiving per "shock." I'm on .25 but I'll get up to about 3.0 apparently... upping the milliamps slightly per visit. I barely feel it right now, it just feels like a tug on the left side of my neck. I have a magnate that I can wave over the device if I'm having a seizure that ups the "shock" to .5 milliamps. This ampage makes me cough and my voice changes considerably, very hoarse. At the next appointment in two weeks the "shock" will be .5 so I'm supposed to use the magnate everyday to get used to the larger milliamp.
Sleeping was ok last night. Admittedly, I drank a little, though that's not recommended. It helped me forget the day and the appointments to come. I DO NOT recommend using alcohol for this purpose. It's a bad habit but I just couldn't help myself. Stupid.
****
I'm writing for myself now.
I've been very depressed this last year and it's escalated each day, especially this past couple months. I've been doing things like drinking and eating horribly... I've gained about 15 pounds... clothes are starting to not fit, etc. It's really like I don't care. Every facet of life in Illinois and health have been deteriorating. Everyone has been telling me, "it could be a lot worse" or "think about what you have", I know these facts. It could be a lot worse, I know we're trying our best to make things better but my attitude and quality of life is at it's lowest. I know I'm an experiment and now every time the device turns on I'll be reminded of that fact. Thank god it's not cancer, thank god it's not my heart or kidney or liver. It's my brain and let me just say that the brain is the only organ that can play tricks on you. It makes you smile when you're not happy, it makes you cry when your not sad, it makes you lonely when you're surrounded by loved ones and it makes you wish for a disease where people could give you answers to your questions. I've had very dark times so far and I know what it feels like to think morbid thoughts. I know when they're medicine related... you feel out of control and say things you don't really mean... desperate, horrible things. I feel very much in control of my thoughts lately... so they're not 100% medicine related... (maybe amplified by a couple of percentage points).
I wait for the day to end while thinking of a way I can end it.
Monday, November 22, 2010
3:30pm
I had kind of a disturbing morning... not really related to this blog, just thinking too much.
Today at 3:30pm I meet with Dr. Macken to turn on the device. I'm pretty nervous. Not for the appointment, but for the first couple days and first couple months after it's on. It'll hopefully help in the end, but it's a foreign object... I'll leave it at that.
Today at 3:30pm I meet with Dr. Macken to turn on the device. I'm pretty nervous. Not for the appointment, but for the first couple days and first couple months after it's on. It'll hopefully help in the end, but it's a foreign object... I'll leave it at that.
Thursday, November 18, 2010
Today
So when I first had Encephalitis in August of 2008 I was on an IV for a week or two and lost 40 pounds. I don't recommend that diet but it was a "perk" of sorts. In the months following I ate very healthy, not even diet soda and I was limiting my food intake. I thought it was easy to live like this, after all I couldn't really have caffeine or alcohol or anything that one would consider a vice because I felt like it would give me a seizure. I was very, very careful.
(Just had a small seizure)
I've had two spaces in time where I didn't have a seizure so I was able to drive, but now I haven't driven since February of 2010. Since then I've had one or two seizures a month. Some where I stay conscious and some where I pass out. Those obviously are the more serious seizures and I need help afterwards. I don't remember much and can't understand english; I feel very confused.
Since then I've backslid. By "backslide" I mean I've started eating worse, drinking diet soda, coffee (caffeine) and have been known to have a few alcoholic drinks. I've gained back 10-12 lbs. and really feel too depressed to do anything about it. It could be the medication or just mood but for me to get into a routine to lose the weight would be a task.
Life isn't too rewarding. I told Sara that my two favorite parts of my day are seeing her when she picks me up from work and when I kiss her goodnight, adjusting the covers and taking that final breath before I fall asleep. Again, it could be medication but if I had to guess I'd say it's 30-40% medication and the other percentage would be our situation here in Illinois. It could be the feeling of dependence on friends and Sara for transportation, constant bad news from doctors (mostly NO news), actually looking forward to surgeries. The smell of NW Hospital comforts me and I wish I could stay.
The hospital is my vacation. I basically take my vacation days and hitch a ride to the city with my favorite girl to where nurses and doctors serve me, constantly asking if I'm ok and if there's anything I need. Food is brought to me, there's TV and movies to watch all night if I want, pre-warmed blankets. I could name 100 more perks. The only thing that I have to tolerate is getting shots twice a day and possibly having a seizure (which I worry about at home anyway). Loyola and NW Hospital have been the only escapes from monotony that I've had in many years.
When opening the box for the VNS device I had implanted two weeks ago there are two magnets used for switching on the device automatically if I'm having a seizure and two instruction manuals. One for patients with Epilepsy and the other manual is for patients with Depression. The device is known to improve the mood, memory skills and productivity of it's users. Yippy! I need a machine in my chest to make me somewhat normal. I've said to Sara that I want to know if she notices anything different in my behavior once they turn on the device... good or bad, I want to know. I've been binging a bit for the last couple weeks, basically since the surgery. My guess is that I'm banking on the device improving my mood and helping me control my urge to eat or drink or over-indulging in any way.
My two biggest fears are that I stay the same, gain a bunch of weight and basically feel like I have no control over myself (like now) and the other is becoming a semi-cyborg with a creepy fake smile. There's got to be a happy middle. There's got to be.
(Just had a small seizure)
I've had two spaces in time where I didn't have a seizure so I was able to drive, but now I haven't driven since February of 2010. Since then I've had one or two seizures a month. Some where I stay conscious and some where I pass out. Those obviously are the more serious seizures and I need help afterwards. I don't remember much and can't understand english; I feel very confused.
Since then I've backslid. By "backslide" I mean I've started eating worse, drinking diet soda, coffee (caffeine) and have been known to have a few alcoholic drinks. I've gained back 10-12 lbs. and really feel too depressed to do anything about it. It could be the medication or just mood but for me to get into a routine to lose the weight would be a task.
Life isn't too rewarding. I told Sara that my two favorite parts of my day are seeing her when she picks me up from work and when I kiss her goodnight, adjusting the covers and taking that final breath before I fall asleep. Again, it could be medication but if I had to guess I'd say it's 30-40% medication and the other percentage would be our situation here in Illinois. It could be the feeling of dependence on friends and Sara for transportation, constant bad news from doctors (mostly NO news), actually looking forward to surgeries. The smell of NW Hospital comforts me and I wish I could stay.
The hospital is my vacation. I basically take my vacation days and hitch a ride to the city with my favorite girl to where nurses and doctors serve me, constantly asking if I'm ok and if there's anything I need. Food is brought to me, there's TV and movies to watch all night if I want, pre-warmed blankets. I could name 100 more perks. The only thing that I have to tolerate is getting shots twice a day and possibly having a seizure (which I worry about at home anyway). Loyola and NW Hospital have been the only escapes from monotony that I've had in many years.
When opening the box for the VNS device I had implanted two weeks ago there are two magnets used for switching on the device automatically if I'm having a seizure and two instruction manuals. One for patients with Epilepsy and the other manual is for patients with Depression. The device is known to improve the mood, memory skills and productivity of it's users. Yippy! I need a machine in my chest to make me somewhat normal. I've said to Sara that I want to know if she notices anything different in my behavior once they turn on the device... good or bad, I want to know. I've been binging a bit for the last couple weeks, basically since the surgery. My guess is that I'm banking on the device improving my mood and helping me control my urge to eat or drink or over-indulging in any way.
My two biggest fears are that I stay the same, gain a bunch of weight and basically feel like I have no control over myself (like now) and the other is becoming a semi-cyborg with a creepy fake smile. There's got to be a happy middle. There's got to be.
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