Showing posts with label seizure. Show all posts
Showing posts with label seizure. Show all posts

Aug 27, 2009

Good Visit With the Good Doctor

I had a favorable appointment with the Neurologist at Brooke Army Medical Center in San Antonio today. The Neurologist said that my condition is stable, but that I am still 'unfit for duty' and will continue to be so until all this mess is over in June 2013. I'm not sure exactly what his report will say and will not know until it is mailed to my home, at which time I will need to 'concur' or 'nonconcur' with his findings. It will most likely be 'concur.' I then send my response back to the Medical Evaluation Board office in San Antonio and then it gets forwarded to a Physical Evaluation Board which will look at his findings in conjunction with all my past medical records and decide whether I continue to stay on the Temporary Disabled Retired List, be taken off the list and returned to Army Reserve duty (contrary to the Neurologist's findings) or simply be Permanently Retired early. Their decision comes back to me, I have to again 'concur' or 'nonconcur,' and send it back to them. We think that they will simply keep me where I am right now and I'll have to come back in twelve months and do this dance all over again. It is a highly bureaucratic process that we need to go through in order to keep my disability benefits active for continued medical care provided by the government for me and Holly.

I'd love for them to simply Medically Retire me early so all of this can over and done with for the rest of my life, but I think we're going to continue to do this until 2013 when they will hopefully Permanently Retire me and never look back. We'll continue to keep you posted over the coming weeks as the paper flies back and forth from here to San Antonio. Thanks for your prayers.

-roger

Sep 17, 2007

What? A post from Roger?!?

I know… I take long breaks from the blog. Quick catch up: after several months of adjusting my anti-seizure meds, waiting two weeks, doing a blood test to check the levels, finding out that the level s are too low and increasing the meds and waiting two more weeks… I’m finally at a good level. It is supposed to be between eight and ten, I’m at 8.8. I’m not sure what they are measuring, but I’m glad that I don’t have to add any more pills to my daily regimen. Right now I’m taking a minimum of eleven pills per day. But it’s not too big a deal for me. And my right big toe has stopped twitching, so I know that’s a sign that the meds are working. If I can make it through October without having another seizure, I’ll be able to drive again in November!

The weather here is downright fall like now. Lows were in the 40s this past weekend and highs were in the low 70s. Just like I like it! It will warm into the 80s again, but fall is on its way.

I have been doing quite a bit of work for the newspaper here on post. I covered a pretty big event last week that also got national coverage. I don’t need to explain it because these links do:

The Washington Post:
http://www.washingtonpost.com/wp-dyn/content/article/2007/09/14/AR2007091400501.html
http://www.washingtonpost.com/wp-dyn/content/article/2007/09/12/AR2007091202491.html (click the link under gallery to see great pictures)

WUSA9 (CBS) - Be sure to click the link under related video for a great story:
http://www.wusa9.com/rss/local_article.aspx?storyid=62778

NBC Nightly News (MSNBC) - At the ribbon cutting you can see my flash unit and then my head pops up with my square patch of missing hair -- nice:
http://video.msn.com/v/us/msnbc.htm?g=9cf4ea65-ae72-49d8-94fa-9d90a64e5d27&f=00&fg=

Stripe - mine!
http://www.dcmilitary.com/stories/091407/stripe_28052.shtml

I have yet to figure out how to post the paper as it appeared with my photos.

I’m going to be going home on leave for a few days in early October. I got a heck of a deal on military leisure airfare on Continental. I don’t usually fly them, but they were darn cheap. It will be nice to be home for a few days and to spend time with Holly and to see my new niece!

I think that’s about it for this post. I do want to share a video that was shared with me that I only saw tonight. It makes a pretty powerful statement at the end. It won’t be some of y’all’s cup of tea, but I liked it.

Apr 20, 2007

All Day at the Hospital, New Meds

Today was a pretty stress free and straight forward day. I got up, headed to Bethesda NNMC on the metro and saw my Oncologist for my 1130 appointment. It was a fairly easy visit. He had a resident there learning today so I got the help teach strength, balance and memory testing. They do this every few visits just to gauge my level and see if there any differences from last time. I think my strength gets better each time, but the memory stuff stays the same. I'm not getting any younger!

After that, I grabbed a quick bite and then headed to my Neurology appointment. We discussed my last seizure and also talked about the strange twitches going on around my right big toe and the side of my foot. For about two months before the seizure, the activity was so pronounced that I would lay in bed and could feel it. Sometimes it would keep me awake for a while. Then, after I had the seizure, they seem to have slowed down quite a bit. He was interested by this and seemed fairly certain that these were, in fact, tiny focal seizures occurring throughout the day. I thought it was just my brain confused and healing doing that, but that is basically a type of seizure, I guess.

We did more strength testing and he also seemed satisfied with my improvement, but wanted to control the seizures. I am at the maximum dosage for Keppra at 2,000mg per day. He also told me that Keppra is good at controlling generalized seizures, but not so good at focal seizures. I tend to have focal seizures that progress to a generalized seizure. So, he waded through the list of additional medications that he could add and finally ended up at one called Tegretol. I’ll be taking 400mg per day to start. I took my first 200mg tonight and feel okay – a little drowsy – which is a side effect. He said that it also might make my stomach feel upset for the first few days, but it should pass. It’s feeling pretty good so far. The only issue with the Tegretol is that it can increase liver enzymes, so he’ll need to draw levels to make sure that I’m getting enough of the medication into my system and that my liver enzymes don’t increase to a dangerous level. He also wants to do an EEG on Tuesday, just to see what kind of activity by brain is creating. He mentioned that there may be some scar tissue or something else in my brain that is irritating it and causing these seizures. It is apparent that something in the part of my brain that controls my right foot around my big toe is irritated. He said that if I was interested, they might be able to pinpoint it in time, and possibly go back in to remove the irritation. Hmm… we’ll cross that bridge when we get to it. He was also happy that I had an MRI scheduled for later in the afternoon and would use the data from the EEG and MRI to compile the NARSUM for my MEB. He said that he’d have a better idea of what to include in the NARSUM, but was not going to do it until I was stable. That means that next week, WRAMC will only transfer me into their system, I’ll have to move there and then will have ongoing appointments until the doctors think my condition is stable enough to begin the board process. In addition, my doctors don’t want to see me moved to a different location – they would prefer that I stay close to them for my care during the MEB process. My Neurologist said, “Why start you over again with a new doctor? That’s just stupid.” I agree. I hope WRAMC agrees.

After the visit with him, I went down to MRI, and after a short delay due to an emergency MRI, I had my time in the machine and actually fell asleep inside the magnet again. I didn’t have a chance to get a CD of the images because it was after 1800 when I finished, but my Oncologist is going to call me Saturday morning with the results. I’ll pick up a CD on Tuesday when I’m there for the EEG and will try to share them with you.

After the MRI, I high tailed it back to Clarendon and joined up with Amanda, Buddy, Ryan, Zach (John’s brother) and Tamra for dinner to celebrate Tamra’s getting out the Army. We went to The Cheesecake Factory and ate a lot of food and of course, dessert too. Buddy and Amanda gave me a ride home and hung out for a while with me. All in all – another good day. I’m looking forward to a weekend of rest and beautiful weather here in DC. I’ll let you know what my Oncologist says about the scan results tomorrow.

Apr 8, 2007

Seizure #3

Happy Easter everyone.

Roger had another seizure about 1:15 a.m. today. It happened almost like the other two, started at his right foot and traveled up to take over his whole body. We were both asleep and he felt his leg convulsing. He exclaimed he was having a seizure which woke me up. I think he said it twice because I think I thought I was dreaming, but he can't remember how many times he said it. I also wasn't expecting him to have another seizure and being completely asleep meant I wasn't ready. Roger is scared and very disappointed. He is concerned about going to DC by himself next Saturday. He's on the highest therapeutic dose of his anti-seizure medication which the doctors rarely see seizures. And we're both confused by why he had another seizure. He also had two more months and he could start driving again. Now he has to wait until October unless he has another seizure.

He bit his tongue which hurts and is tired and weak especially on his right side. He feels like he is limping a little. The same thing happened each seizure before. He was tired and weak for a few days. He said he felt like he ran a marathon which is technically what his brain did. We just got home from trying out that new church. It was good but I'm looking forward to a regular Sunday message since Easter is always a special message and can be different from the pastor's usual style. Now we are on our way to Roger's parents for Easter dinner.

Would you please pray for healing from the seizures for Roger, for peace and safety while he is in DC and guidance with the Army MEB process? Thank you so much for your prayers.

Jul 17, 2006

The Rest of the Story

Before I give my version of the seizure, I have to give praise to God. He deserves so much praise and thanks. I have to thank him for giving Roger this seizure when he was at home and not at work, on the metro or driving. I have to thank God that I was with him and he was not alone. I have to thank him for this awesome country that cares enough about its citizens to employ paramedics and firefighters 24 hours a day. The paramedics were so professional and caring. And the emergency room staff was great. I also have to thank him for putting seizure information in my life over the past years to prepare me for it and that he kept me calm during the whole event. As I’ve said before, our God is an awesome God.

Next I have to apologize for the length of this post. Unbelievable! Sorry.

Now about this seizure...it was very scary. The feeling of helplessness and fear of not knowing what to do was scary. Next to Roger’s anxiety attacks in the hospital after the surgery, this was the freakiest thing I’ve ever experienced in my life. With Roger’s anxiety attacks, no one could tell me what was happening and what could be done until Cassie got there and went through a night with me. She knew exactly what was going on. That’s how we knew they were anxiety attacks and were able to get him the help he needed. But this was my first seizure and I would have preferred to have been prepared, but Roger neglected to inform me that his last pill was Monday and he could possibly have a seizure. Thank God I noticed on Tuesday and Wednesday that he didn’t have a half pill in our pill organizer. That’s the only reason I knew when asked by the paramedics that he had finished his anti-seizure pills. Don’t you worry, Roger and I have discussed this communication slip. :)

So Roger and I talked for a bit and prayed before we went to sleep Thursday night. I’m usually a very deep sleeper. I can even sleep through most storms. But I woke up because I heard Roger make a loud “ugghh” sound like he usually does when he gets a leg cramp. I looked over at him and saw his arms out in front of him as if reaching towards his leg so I thought he was having a leg cramp. After a couple seconds of watching him and feeling the bed vibrating strongly, I realized it was more than just a leg cramp. I jumped onto my knees beside him and somehow there seemed to be a lot of light to see him and I began asking him questions. As I was asking him questions, I clearly remembering thinking to myself, “make sure he’s breathing, make sure his tongue doesn’t block his airway, make sure if he vomits, he doesn’t choke on his own vomit.” I got no response from him so I jumped off the bed and ran to his side of the bed so I could see him better. His face and body looked as if he was fighting the seizure, but I’m pretty sure he had no control over it and that’s just what happens when you have a seizure because of what’s happening to the brain. I took his pillow out from under his head because his face was pushing into the pillow and I didn’t want him to suffocate.

I continued to talk to Roger and ask him questions. I think I was thinking out loud more than expecting him to respond. Although I probably would have felt a little better if he had responded. I was questioning if and when to call 9-1-1 and what to do and stuff. There were some requests made to God through out all that too. The seizure lasted for about 20-30 seconds, give or take 5-10 seconds. I wasn’t paying attention to how long it lasted, but it wasn’t very long. The seizure stopped and I began to address Roger with the intent of getting a response from him. At first he didn’t move or talk and every time I began a statement his eyes would open very big and then they would immediately begin to close. I was worried he would go unconscious and then he would be in more trouble. I continued to talk to him to keep him awake as he moved his arms away from his body and uttered “Soooo” and immediately collapsed again. He made a couple smacking type moves with his mouth and I thought he was going to vomit. He opened his mouth fairly wide and I heard his jaw pop. A bunch of saliva came out of his mouth but no vomit. I thought there might be permanent damage to his brain and I decided I couldn’t wait anymore. I grabbed Roger’s phone which is always on his night stand and dialed 9-1-1. The operator answered with the usual spill which ends with “what’s your emergency?” I told him that my husband was having a seizure. He asked me for my address and phone number and if it was an apartment building. I answered and he said paramedics were on the way. Then he proceeded to assess the situation. He asked me if Roger was breathing then how his color was. He asked me about Roger’s prior medical condition. Somehow, I was able to stay completely calm, answer all his questions and not ramble on like a crazy lady. “He had a craniotomy on March 3rd for a brain tumor and seven weeks of radiation that ended three weeks ago. Is this his first seizure? This is his first full seizure. He only had small seizures in his right arm before. Does he have any other conditions? No, he’s healthy other than these. What medications is he taking? Keppra, Zyrtec, Naprocyn for back pain only when needed and he took two Aleve last night for a headache.” He asked me if I would be able to let the paramedics in the door and told me to watch Roger and if his condition changed at all to call right back.

I checked on Roger again asking him questions to make him stay awake. I ran to the hamper and grabbed a pair of shorts then ran to the closet and grabbed a t-shirt. I talked to him the whole time so he’d stay awake. Then I proceeded to find the phone number for the front desk downstairs so they would know the paramedics were on the way and assist them in getting in. The number wasn’t in Roger’s phone where I could find it, so I ran to the office and grabbed the folder from Suite America out of the file drawer that had all the numbers in it. It wasn’t in there. I thought, “Duh Holly, you work for Archstone-Smith, you can get the number from the website” as I moved the mouse. The desktop came up and I clicked on IE. I typed archstoneapartments and hit Control-Enter. The site came up and I clicked on Virginia and then Gallery at Virginia Square. But the website was just changed recently and the phone number now listed was the 800 number not the local number. I didn’t want to call it and get some call center in our Denver office.

Then I remembered we got a letter from the community manager about the fire alarm being tested the day before. And since we recycle it was still sitting on the counter in our paper stack. So I ran over and grabbed it and ran into the bedroom to check on Roger thinking I had been gone too long and no telling what state he was in now. I dialed the number as I spoke to Roger to make sure he was conscious. The front desk person answered and I told him that I had called 9-1-1 and the paramedics were on their way. He responded that they were already here and on their way up. I hung up and thought I need to know how long this is happening in case I’m asked. I looked at the time on Roger’s cell phone and it was 1:57 a.m. (The next morning Roger and I looked at his call log and I called 9-1-1 at 1:51 a.m. So only five minutes had passed from the time I dialed 9-1-1 to dialing the front desk at 1:56 a.m.) I ran to the front door to unlock it and propped it open with a Gatorade bottle from the closet across from the door. I ran back to Roger and he seemed to be a little more awake. I kept talking to him and he was very slowly starting to come to. I heard the paramedics say something and the door opening. So I ran to the door, held it open for them and all of their bags and toolboxes as I said he just came to. They asked which way and began to ask me questions.

I went to the bedroom and completely forgot that Roger had no clothes on. As soon as they walked in they pulled the sheet over him. That was a little embarrassing because I didn’t even think about Roger being naked. It never crossed my mind. They asked me to tell them what had happened and asked a lot of very important questions about medications and medical history as they tended to Roger. I didn’t know this but a couple of them were bringing the stretcher and other stuff in and were in the living room moving the coffee table. I think there were five-six of them. One guy was devoted to Roger. One guy assisted him by handing him stuff. They didn’t say much to each other. The assisting guy knew what they other one needed. One guy kept asking me questions as I went back and forth from the dresser to get Roger’s ID to the bathroom cabinet to find his medicine bottles. The guy with Roger was asking Roger if he knew what was going on, where he was, his name, what day of the week it was, etc as he was taking his blood pressure, pulse and other vitals. Roger wasn’t responding very well and looked completely confused and shocked and maybe a little scared so he told Roger he was going to put in an IV to help him. Roger’s face looked like as soon as the needle hit his arm he was going to freak out. So I walked over to the side of the bed and grabbed his hand and held it. He looked at me and I said to him that everything was okay now, he was here to help him and asked him if he understood that. He kind of shook his head at me in agreement and the paramedic asked him if he knew who I was and Roger said my wife. Then the paramedic asked what’s her name and Roger said Holly. So he stuck him with the needle.

I guess he had a bag of saline (I can’t remember.) and he told me it would help him feel better. I asked if the way Roger was behaving was normal and all the paramedics nodded or responded in unison that it was. That made me feel better. Roger began to come to very fast. He began asking questions about what had happened and what was going on. They explained to him that they were going to take him to the emergency room and why. Roger still seemed a little confused, but he was responding faster and clearer. He wanted to know what hospital they were taking him to, if he could put on some clothes and if he could drink some water. They explained that what ever he put on would be taken off anyway for a gown and they’d cover him with a sheet. One medic pulled our sheet off the bed and then one of the guys behind the stretcher said they had one. I said out loud, “Good because I know hospitals and I’d be scared I won’t get my sheet back.” They all laughed in agreement.

One paramedic gave me directions to the hospital and I began to gather clothes for Roger. As they went out the door, one turned back and told me to tell the ER people when I arrived that Roger was in ambulance 104. I ran to grab a bag for the clothes. I thought we might be there a while and grabbed a bottle of water, banana and an apple. I also grabbed the notepad we used at the other hospitals to write stuff down. I knew I’d have stuff to write down. As I was making my way to the elevator, I realized that I couldn’t really remember the directions he gave. And as I was driving out of the garage, I was starting to question if he said ambulance 104 or 140. I was thinking, “Oh crap, I hope I can catch up to them and follow them.” I did not want to have to use the GPS to find the hospital. I wanted to be there when he arrived. I pulled out of the garage driveway and the ambulance was still there. Talk about relief. I followed them to the hospital through red lights, looking all around for cops every time. They drove a normal speed and turned on the sirens only through intersections. I could see Roger sitting on the stretcher. I followed them all the way back to the ambulance dock. I parked in a row of parking spots worried I would get towed, but there were no signs saying no parking. I inquired later and was told since we wouldn’t be there long, it was okay. Of course, the guy gave me a hard time. And when we left the doctor directed us a different way and I explained that I was parked out by the ambulances, the guy that told me it would be okay said, “If it’s not towed” with a sheepish grin.

In the ER, they hooked him up to the machines and I repeated the story, medications and medical history to the doctor. A young lady in civilian clothes got all our insurance information and copies of Roger’s Texas and military ID. The doctor prescribed a 500 mg Keppra and decided to do a CT scan. So Roger was wheeled away. A few minutes later he returned. The nurse brought his Keppra and Roger told her his IV was hurting him because he bent his arm in the ambulance which pushed the plastic needle up farther and bent it. So when they took blood it wouldn’t work so they had to use a butterfly to get blood. It all reminded Roger of all the blood/needle experiences in the hospital. Not fun, especially when they took it out. The doc came back in after a while and told us his CT looked fine and we would be released shortly. Roger asked if he could drink something. The doctor himself got him some cranberry juice and brought it to him. When he returned I asked him a bunch of questions about what to do next time. Roger signed some paperwork. I helped him get dressed and we walked to the truck. He felt a little light headed when he sat in the truck and we sat there for a bit before we drove off after I asked him if he thought we should go back in. He said no and we went home at 4:30 a.m. We were completely wide awake for quite a while. But it gave us time to find the Tricare numbers we needed to make the necessary call so we wouldn’t get charged for going to a civilian hospital and for Roger to send emails to his doctors at Bethesda to give them a heads up that we’d be there later that morning.

We finally laid down to take a cat nap before we headed to Bethesda around 5:30 a.m. Of course, we over slept and didn’t have time to take showers, but only get dressed and drive an hour in rush hour to Bethesda. We made it to the hospital in the nick of time for Roger’s 9:00 a.m. ultrasound to check for testicular cancer which he found out today was negative, but they’d like to see him again in December. After that we met with Dr. Duelge and then Dr. Rosenbaum. We received a lot of good information and it was good to speak with Dr. Rosenbaum probably for the last time in person as he is separating from the Navy. That will be the Navy and the military’s loss because he is a great neurosurgeon. We ate a great lunch at the mess hall and returned home around 3:00 p.m. to rest finally as we were exhausted.

Roger is still shocked that he had a seizure. It’s almost surreal to him. It’s not for me. I will never forget this and I pray we don’t have to experience this again. Thanks for sticking with me on this ride. I hope you enjoyed it and maybe learned something. I sure have.

Jul 16, 2006

First Big Seizure

I haven’t blogged in a while as everything had been going fine. This past Monday I took my last Keppra, or anti-seizure medication. Tuesday, I made contact with NRH and Apria finally picked up my wheelchair. I was hanging on to it, for I don’t know what reason. I also made it into work Monday for a short meeting and to do some paperwork. I also managed to get back there Thursday afternoon for a few hours. Everything was going so well last week as I set off to dream-land Thursday night…

Holly and I hit the sack pretty early… a little after 10pm. We both had a wonderful end to the day, we laid down, prayed together and fell fast asleep. I remember waking up thinking I had a cramp in my leg. It was actually about 2am. I felt my leg get stiff, but then I recall my whole body being stiff. I yelled out, and that’s all I remember. The next thing I knew, the lights were on and our bedroom was filled with men in blue shirts. They were paramedics and I had just regained consciousness after suffering from my first ever general seizure. At first, I didn’t know what was going on. I came to and there were all these people around me – Holly was right there next to me telling me that I had a seizure and that the men were there to help me. I guess I was really out of it – I don’t really even remember them giving me an IV or putting EKG pads all over the front of my upper body. They asked me a bunch of questions that I don’t even remember – I guess I had a hard time coming to grips with what just happened. They moved me over to a stretcher and rolled me out of my room, out of the apartment, down the hall, into the elevator, through the lobby and into a waiting ambulance. I was concerned when we made it into the ambulance because I wasn’t sure where Holly was. But just as we were about to pull away, I looked through the rear window and noticed our truck had pulled up right behind the ambulance… Holly was right behind us.

We made our way to the hospital, Virginia Hospital Center here in Arlington. I know we talked in the ambulance, but again, I can’t remember what we talked about. We got to the hospital and they backed up, just like in the movies, and moved me into a triage bay. The medics handed me off to the nurses and a doctor. They asked me more questions – but again… I’m drawing a blank. Thank God Holly was there to answer all their questions. I do remember that everything seemed to pretty much go by the book. They took some blood and also gave me a head CT. They didn’t find anything abnormal as I am at risk for seizures and I just came off my meds three days earlier. They gave me a Keppra, some Cranberry juice and after about two hours, Holly and I were on our way back home. We went back to sleep around 5:30am. I still don’t remember exactly what happened – all the details are fuzzy, but Holly will fill you in when she blogs about it.

We got back up at 8am as I had an ultrasound at 9am at Bethesda. I had an ultrasound of my testicles and everything was clear. We stopped in to see my Radiation/Oncologist, Dr. Duelge, just to fill him in on what happened the night before. He was surprised to hear it happened, but there was always a chance. Then we made it up to see Dr. Rosenbaum – it sure was good to see him again. We talked to him for about a half hour and he told me that the type of seizure I has seemed very similar to a Jacksonian Seizure (check out the link.) I thought I was having a cramp in my right leg, where the tumor was located in my brain. It moved from there forward and affected the rest of my brain, then I blacked out. He also said that having a seizure like that makes the brain have a week’s worth of activity in about 30 seconds. He suggested that I start talking half a pill of Keppra once a day now. If that keeps the seizures at bay, then we can stay at that dosage. If I have another one in the future, we’ll kick it up to a whole pill a day and see how that goes. On a side note, Dr. Rosenbaum is leaving the Navy, his last day is this Friday. He’s heading to private practice in NC. Best of luck to you in the future Dr. Rosenbaum!

So, that’s about it. After running around all day Friday, we went to the 275th Army Band concert at a local middle school (excellent) and ate out at Costa Verde (excellent Peruvian food) and then I fell asleep hard. I didn’t wake up once all night. Saturday we slept in and then headed out to see the movie Nacho Libre. I thought it was just silly – it did have me laughing the whole way through. If you want to see it, watch a matinee or rent it when it comes out. Then we had dinner with Ryan and Amanda at Café Asia (always good food there) and then we stayed up and played games and just chatted the night away. Today we went to church (duh) and then had lunch at Bertucci’s (very good Italian food.) After that we came home and just vegged out since it’s too warm outside to hang out. This weekend and the coming week are going to be hot. We might hit 100 here… that’s hot for DC!

Tomorrow I have PT and a follow-up appointment with my Urologist. I’m going to have to take it easy at PT since the seizure left my biceps, left ankle and neck sore. I also popped my jaw and can’t open my mouth all the way – it really hurts. I have been popping 800mg pills of Ibuprofen too try to help that get better. Please pray that the seizures don’t come back. I’ll try to get Holly to blog about our experience soon. Have a great day.

Feb 16, 2006

Arm Seizure Update

Hi all-

I wanted to send you a follow up to my last email since I had my MRI this morning. The MRI went well and was fast. It is amazing how fast and how much smaller the machines are these days - but they are still loud! And it is amazing that I had the MRI at a facility 30 miles away from my doc, but he was able to see the results instantly. I guess I should not be surprised - IT is my thang!

My follow-up appointment was scheduled for Mar 2, but the doctor's assistant called me this afternoon and wanted me to come in tomorrow (Fri), but I couldn't - so he's seeing me Tuesday at 8:30am. I guess it kinda freaks me out they he already saw the EEG and MRI and wants me to come in so quickly - my mind is thinking bad negative things. I know I should not jump to conclusions, but for the first time, I am sorta scared. I need prayers for peace (especially since Holly and I are supposed to have fun in NYC this weekend), courage and also prayers for these negative thoughts to leave my head. I just keep telling myself, Lord, you are with me... Heck, for all I know, he might just want to see me quickly to pass on some good news.

I have not had any seizures this week, but had an astounding six last Friday and about three on Saturday. So, are the meds working? Who knows - they sure do make me groggy though. I had to come to work late since I went to my appointment, and man, was it hard staying awake on the subway this morning. I probably looked like I was under the influence of some gooood drugs! Well anyway, have a good weekend... it is supposed to be very cold in NY this weekend. Highs Sunday in the 20's! I'll let you know what the doc says on Tuesday.

-Roger

Feb 9, 2006

Arm Seizures?

Hi everyone,

Sorry for the mass email. I just wanted to share a little about something going on in my life right now. Here's some history first… a few months ago (Nov 05, I think) I experienced a very strange sensation in my right arm. I can't recall exactly what I was doing at the time, but my arm began to convulse on its own. It was highly unusual yet very fascinating. The episode lasted just a few seconds. It happened again soon after that, but I began to notice that, somehow, I knew it was going to start going bezerk. I just had this feeling that came over me and I knew it was coming. The action my arm makes is kind of like the motion your arm would make if you were shaking someone's hand. It moves back and forth, or up and down, about two inches one direction and then two the other. While it's doing its thing, I can't stop it. I have a little control on my hand, but I cannot stop my arm from moving. I'll have an episode maybe once up to three times a day… sometimes back to back days and other times a few days or even a week or more between episodes. I mentioned this to my doctor one day while I was seeing her for back pain, but she thought we should control and treat the back pain first. About a month later, the back pain was better and I had several episodes over a weekend – I decided it would be best to come see her again.

I told the doctor what I have explained to you… she said that it sounds like I am having seizures in my arm. "Seizures?" I thought… I would have never thought to call it that. She also said that my ability to know in advance, that a seizure was coming, is called an aura. I had heard this once before when I explained all of this to a doctor friend of mine, but hearing it again from this doctor made it really sink in. She gave me a referral to a Neurologist and told me to follow up with them.

Feb 1 I went to see a neurologist at Andrews Air Force Base. I met with a student doctor, an AF 2nd Lieutenant, and then met with the attending, an AF Major. The Major pretty much did a lot of the muscle tension and reflex tests that the 2LT did, but he noticed something the 2LT missed, there was a slight over-reaction in the way my right lower arm was reacting to a reflex test. He said that my reaction was quite jumpy and similar to that of a little girl (no jokes here folks.) The left side made a small reaction, the right side a bigger and jumpier reaction. He said that this indicates that my brain is, for some reason, reacting differently with my right arm. And as we all know from biology, the left side of the brain controls the right side of the body. He said that there are many things that could make the brain have a reaction like this: tumor, scar tissue, trauma, or just weird nerves. He said that an MRI would let them see if there is anything visibly affecting my brain. He also said that an electroencephalogram (EEG) could tell them if there is any abnormal brain activity going on. He also prescribed some medication to see if the seizures stop. I have an EEG scheduled for Mon Feb 6 at 10am at Andrews AFB, and I have an MRI scheduled for Thu Feb 16 at Bethesda National Naval Medical Center.

I also started taking my new medication last night, Trileptal. I hear it is a relatively new medication. I read quite a bit about it and it looks like the side effects relate to making one drowsy and such, but I took one last night and I didn't feel too bad. I'm taking one a day at night before bed for five days and then two a day after that. I think the one I'll have to take during the day will affect me more. After all the tests, I'll schedule a follow up appt and they'll tell me what's next.

We don't have a whole lot of time left here in DC. I just hope that they can figure out what's wrong before we have to leave or TX. But I know that once we get there, there will be more tests by the civilian doctors to make sure that they agree with the military doctors' findings.

UPDATE: I wrote the above last Thursday. While writing it, I lost it (or thought I did) because the network flaked out on me and I wasn't able to recover it until Tuesday. So, I went to my EEG appointment on Monday and the test was done with no complications. Unfortunately, I won't get the results until my follow up appointment, which is now scheduled for Mar 2. I'm taking the medication twice a day and it is not presenting any complications during the day - other than making me a bit tired if I don't move around while at work. I haven't had any seizures at all either. Now, I do have a new thing going on though, my left lower eyelid twitches. It does this most of the day, on its own. Nothing seems to trigger it. Apparently, it is called Myokymia. It seems to come on for a while and then go away on its own. I read that it can come on due to excessive alcohol of caffeine (that's not it) or fatigue or stress. I have to admit that we haven't been getting enough sleep and this whole arm thing has me just a little stressed out. Hmm.. there are a lot of things stressing me out these days.. Holly's condition, going back home. I just need to chill out and take everything one step at a time. The twitch is not life threatening, but it sure is dang annoying. Sometimes, it twitches so much my whole eyeball moves. It's like an eye-quake!

Anyway, if you could please pray for healing for Holly and I, wisdom for the doctors, and peace and relief for us from the stresses of our ailments and relocating again, I'd appreciate it.

Thanks for listening and I'll update you soon,

-Roger