CagedBird

Thanks for your comments. I commented back on my last entry. Right now I do not know what to do. Yesterday I was about to go to the bank but as soon as I walked into the kitchen (to get to the garage) I felt weird for a quick second. I sat down and focused on my breathing and I felt fine. but I still got my dad to drive me because I was feeling anxiety. This morning I had my appointment with the psychiatrist. My dad had told me he had to work so I would have to drive myself. I was feeling anxiety so I began texting my cousin about yesterday and how I was scared to drive to the psychiatrist because I was afraid talking about the attacks may trigger one then I wouldnt be able to drive home. As I was texting her, it happened. I felt nauseous, I got hot and sweaty, my heart started beated fast, I felt dizzy like I was going to faint. Then it just stopped. I finished the text as I was still trembling. Luckily my dad did not have to work after all so he took me. I did not like the meeting with the psychiatrist. I told him about my brain surgeries, stroke, PBA, seizures, my mom being paranoid schizophrenic, and my history of depression and mood changes. I do not think the 30 minutes we talked was enough for him to make a sound decision on what I should do. He pulled out the DSM and I read the description of what happens during a panic attack. I had like everything on the list. I also explained the seizures to him though and how I did not know if they were panic attacks or seizures. He believes Im having both. He used some big word to describe the reason I would "sleep walk" and be out of it after the seizure. He asked me about Lamictal. He is the 3rd neurologist to recommend lamictal to me. I am just scared to take it since it made me feel like I was trapped in a nightmare when I tried it back in 2011. I know I couldve just had a bad reaction and it may have been temporary. I just never want to feel that feeling again. So the psychiatrist put me on abilify and told me to take it at night with my clonapin. I immediately was thinking heck no. Abilify is the commercial that everyone jokes about with the long list of horrible side effects. He said the only side effect is restlessness in 1% of cases but if I take it with the clonapin that should counteract it. I still felt uneasy about it and when I came home and researched I found that abilify is an anti-psychotic drug. He did say something about some kind of psychosis I was experiencing with the seizures but I thought he was prescribing the abilify for my mood changes and depression. Im not psychotic. As I was watching Youtube videos on Abilify, it happened again. At first I felt weird but I tried to ignore it. Then it felt like something was taking over my body. My heart started pounding, my limbs started moving, my eyes got wide, and something made me lay back. I tried to yell for my dad because I was scared I might fall off my bed if I reached for my phone. This one lasted a little bit longer than the one this morning. I really thought I was about to start having a full seizure. I just laid here for a while until my heart beat went back to normal. Do you guys think I should try the Abilify? Im scared. Do you think I should try the Lamictal again since the keppra is clearly not working? The Lamictal could treat the seizures and help my mood whereas the keppra is contributing to my depression and not stopping the seizures anymore. I just dont know what to do. Tomorrow Im going to the gynecologist to see about birth control again. It seems like the only time Im seizure free is when Im on my period so maybe the pills will help since they trick your body into thinking its that time of month and I stayed seizure free all the years I was on it before. I dont know

I always get scared when things are going good because I know something bad is coming my way so I can't get too comfortable with the good life. My dad was just saying this same exact thing today. He is the biggest pessimist I know and his negativity wears me down. Lately he had been acting very hateful and moody because of money issues and my brother quit his job so that put more bills on my dad. I felt really sad and upset like I am just a burden on my dad since I moved back here and living with two depressed negative people (my dad and brother) does not help me at all. I prayed a lot though and things have got a little better in the last couple of days. I still want to move out. I miss cooking my own meals and laying on my couch in my living room watching tv. I miss having my own space feeling independent. I hate being stuck in this room. My dad finally told me he's feeling better today and my brother actually talked to me about how he was feeling so God answered my prayers. Now Im just praying he answers my prayers for a job and apartment. I REALLY miss working and I know I need income to move out and get my own place again. SSA stopped my disability check this month because they needed proof that I was not working anymore and unfortunately I had just paid off 1 of my student loans so I have been running low on cash which makes me wish I had a job even more! The good news is I just got my settlement from my accident back in October so Im waiting on that check to come through the mail! I was snowed in last week so I missed yoga but I finally got out this weekend. I hung out with my bestfriend, I went to church, and I picked up some books and movies from the library. I am very thankful when I can go a whole week with no seizures. Im also very thankful when I can burn a whole tank of gas driving all around town in this congested city and avoid accidents. It seems like drivers always want to cut me off from my left side where I have no vision. I thank God every time I get to where Im going. I just pray things stay okay for a while. I needed this break from misery. Thanks for your encouraging comments.

I went to the neurologist yesterday. Of course the appointment was pointless. He does not want to see me again until I see the epileptologist. I asked him about the seizures and hormones. His only comment was to try to schedule another EEG when I think Im about to get my period so there can be a better chance of me having a seizure. I asked him if he thinks I should just go ahead and get the VNS but he said we need to make sure these are seizures first. He then asked me if I wanted to start vimpat (the seizure med the neurologist in charlotte was going to start me on). I was like I thought you just said you dont even think Im having real seizures? No I dont want to try another seizure medicine! I hate this guy. The only reason he doesnt think Im having seizures is because I always feel them coming and according to him seizures are supposed to be sudden. I am very thankful everyday that I am seizure free and every night that I am seizure/parasomnia free. I always thank God when I get to where Im going and return home that I didnt have a seizure behind the wheel. Today I went back to yoga. It was cancelled last week because of the snow. I did my exercise routine before and after yoga. My instructor is so nice. It felt good rolling around stretching and discovering things I didnt know I could do. Unfortunately I just wish I could live a normal life. I know there's no such thing as normal. but really I miss having my own apartment, making my own money, feeling independent. Watching daytime tv and going to the gym is great. but finding out SSA suspended my Disability with no warning, getting another Medicaid review through the mail, and getting a letter that I need to reapply for food stamps is just annoying. Sure I had days where I didnt want to be at work and I knew I didnt want to make a career out of what I was doing. But I dont want to live in poverty just because doctors are too lazy to fix whats going on in my brain. I worked so hard in work and at school to make sure I would always have the opportunity to get a job and be independent. Its just not fair that I dont have that option right now. I feel so worthless

Yesterday I did not have another seizure but I did have a headache the whole day. I finally took some pain pills and it helped the headache go away. Unfortunately, today it feels like I have been having seizures all day. I keep getting eye twitches and thinking a seizure is going to happen. This morning I was watching tv and during the commercial break I looked at my phone and started to feel really weird. I tried to calm myself down and pray to God but I knew I was having the seizure. I felt my food come up my throat, I got really hot and fidgety, and it felt like i was dreaming and dizzy. It was over in less than a minute. (The show was still on commercial break when I went back to watching tv). I used to just think these were anxiety attacks but ever since I found out about all the different types of epilepsy, Im not so sure. I know caffeine is a trigger. I always feel jittery and out of it when I drink coffee. At first I feel extremely happy but then I just feel scared and get anxiety like I have too much energy but Im extremely tired at the same time. The only soda I drink is sprite which has no caffeine. I usually just drink water. Yesterday I felt extremely depressed. I was thinking about dying all day but I did not want to kill myself. I just felt so frustrated because I felt like I tried so hard to succeed in life always overcoming obstacles and doing whatever it took to get what I wanted. but this seizure thing just has me feeling defeated. I cant spend any amount of money or do any amount of exercise to fix it. Im so used to doing my research and finding treatment for the stroke stuff or just working hard and making goals for career/school stuff but this epilepsy thing has ruined my life and makes me not want to live. I cant be happy living in fear. If I cant work and cant drive, Im stuck laying in bed either reading watching tv or looking at the computer which is when 99% of the seizures have occurred. I thought about my menstrual cycle and I think I have catamenial epilepsy. I looked back through my old calendars and old blogs. Unfortunately I didnt keep a great count of my menstrual cycle and a lot of times I didnt mention the "complex partial" seizures because I thought they were just anxiety attacks since they were so quick and I remembered everything. But looking back over the past 9 months, I noticed there were at least 5 months when I had a seizure a couple days before or the day my period started or right around the time after it ended. This month will make 6 out of the past 10 months and really it can be 6 out of 9 because I was seizure free the month of August. At first I thought maybe this is just coincidence but I think I am going to look more into it. I took birth control pills for 4 years because I used to get really sick (diarrhea, vomiting, sleep all day, etc) in high school during that time of month so my gynecologist gave me a mini pill which I took during college and it did wonders! No sickness. I did not like the dangers of taking the pill though and I noticed once I quit eating meat for good in 2012 I no longer had sickness during that time of month because I did not have that animal flesh in my system so I quit the birth control. I know like duh I had a stroke, brain damage, etc but how is it that I went all of my college and 2 years post grad seizure free but seizures have returned since I quit birth control and 6 out of the past 9 months that I tracked have included seizures during ovulation? I think there could be a correlation here. I go see my neurologist tomorrow and I am going to ask my gynecologist if I should get back on the mini pill when I go see her next week. I just really need some hope. Thank you guys for your comments. I know I complain about the same things but its nice to look through my old blogs and read advice I can use anytime.

thanks for reading. I go back to the neurologist Wednesday so am going to share this with him

I spent the weekend with my family. On Saturday night I went out to dinner with my brother, sister in law, and niece. Yesterday I went to church with my cousin and her 3 kids. It was the church I used to go to since I was a baby and the church I was baptized at but I had not been since high school. I enjoyed it though. Everyone remembered me and made me feel really welcomed. They knew me before the stroke, prayed for me through the surgeries, and I remember getting a standing ovation the day I walked back into church with my cane My church story I quit going before I started this blog so I dont think I really talked about church much. My mom has paranoid schizophrenia but she wasnt diagnosed until around 2006-2007. Prior to that we had always been really involved in church. My mom even got a ministers license and was church secretary. After my stroke, my mom would always tell me I had demons in me and tell me I had an attitude if I was not smiling during church. She would force me to stand up during songs and during the sermon then get mad at me for not wanting to praise God for all he had done for me. After she literally tried to beat and choke the demons out of me when I was 14 and severely depressed, I came to live with my dad. My first week of high school I was sexually assaulted and after running away from home I had to see a psychologist who didnt help and just sent bills. All of this kind of snow balled into me hating God and leaving my church after my mom left around 2005. Of course I had gone to other churches since then but I was not active in any because it just did not feel like home. Lately I had been wanting to get involved in church again to volunteer my time and find my purpose but a lot of the christians I know and churches I went to would make me feel just like my mom did. Telling me the seizures were demons and telling me to praise God if Im thankful causing me to feel bad that I cannot clap and awkwardly raising my hand just to look like I was praising God like everyone else. Well when I went back to my home church yesterday it was like a breath of fresh air. I could finally just sit there without my mom nagging. I think I will rejoin. With all I've gone through I really need a spiritual advisor because honestly sometimes I feel like God is not out there. I also was really involved in everything before and there are a lot of ministries to join since it is a missionary church so I think it will help me feel not so bad about not being able to work. The good After driving to church and driving to get some food, I drove to my aunt and uncle's house to visit and talk with my cousin that I had went to church with. Her and I have a connection because she has sickle cell so she knows whats its like to not be able to work plus her husband left her a few years ago since she stayed sick so much so she know what its like to have guys not want to be with you cause of your disability. It was nice to talk to her yesterday. I think we motivate each other. After that I drove from the far west side of the county to the far east side to pick up my other cousin (my best friend) and take her to the super bowl party my dad's side of the family was having. It was really nice. They stay in a huge house so it made me feel good to go up and down the steps without falling and of course my family fixed my food and brought food to me that I could not carry up the stairs without me having to ask or feel helpless. After the game I drove my cousin back home then drove back to my house back on the west side. The bad After taking my medicine I was on the phone talking to my cousin. I started to feel weird but I tried to ignore it and keep talking. But I couldnt say what I was thinking. I told her "I feel really weird." but I dont think she understood what type of weird I meant. I started to feel dizzy and nauseous like I could feel my food coming up. I did not want to have a seizure while she was on the phone and not know so I told her "I think Im having a seizure." I heard her say she was going to call my dad so I hung up and just laid here. My dad ran in my room and asked if I was okay. I told him yeah I just felt weird. I called my cousin back and we finished our conversation. My body kept shaking like I was freezing cold but I felt okay. I guess I was just a little shook up. It just made me kind of sad. When my dad came to check on me he said he doesnt want me to drive anymore because this is happening too frequently. I had such a great day. If I cant drive I will have to ask my dad to take me everywhere and since hes so antisocial that means me having to get dropped off and picked up anytime I want to be around other people. Im glad the seizure waited until I was in bed and not while I was out having fun or driving. I just thought that was a rotten way to end my weekend because its like Im trying so hard to get out and enjoy myself but the stupid seizure keep reminding me its too dangerous to go anywhere or do anything so I need to just lay in bed and wait for the seizures. It took me forever to fall asleep because I was so scared and not sleepy. Ever since I started taking the dissolving .25 mg tablet instead of the .5 pill with water last week I only sleep for about 4 hours before I wake up. I kept waking up lastnight. One time I felt my arm jump and the motion woke me up. Another time I woke up and stayed up for a hour because I was just scared and not sleepy. I know life isnt supposed to be perfect but jeez its like everytime things are going good and Im content, something happens to mess it all up and make me pessimistic about the future

miss you fred. I understand you need a break though. Im glad you have pastor and wife to help you through this

I got my toenail cut down because it was infected last year. Between wearing "flats" with no socks and the seizure I had that knocked me off my bed and hurt my foot, my toenail had turned black and was loose. I took some fungus pills for it but it took a very long time to grow out and I think it might still be a little bit there. I worry about my other toenails since they stay curled and I cannot move them. Dan is lucky to have you

Congrats Asha. You are so positive. Thank you for you're support here on the board. I hope you enjoy your day

Warning: This is a very long entry. I've done some research and this is like my notes Yesterday my dad and I went all the way to Duke Neurology of Raleigh only to find out we had been scheduled at the wrong place. I was really looking forward to getting some answers so after I sat there and gave my whole medical history to the neurologist, I was kind of irritated when he informed me that he is a neuromuscular doctor and has no training in seizures. My dad and I came all the way back home, went straight to my neurologist office and let them have it. It was a waste of time, money, and gas all because multiple people set up the referral with the wrong hospital and wrong doctor. A couple good things did come from our this situation though. I was able to go to the psychiatrist next door and set up my appointment (since they never called me) and now my neurologist is going to try to send me to Chapel Hill (which is where all my brain surgeries were done) to see an epileptologist. This situation also motivated me to do more research. Yesterday the neurologist in Raleigh told me there is hope for me and what Im going through can be treated. He also expressed that it is more complex to treat since I had the removal of part of my brain, the hemorrhage, and the stroke leaving scarred tissue on the brain so its not just one issue we are working with. When I was explaining my previous seizures I used so much detail and told him everything I remembered that he does not believe these are seizures either. So now its the ER doctors, my primary doctor, my neurologist, and the neurologists in Charlotte that all believe some of these episodes are not seizures. I am glad I go back to my neurologist next week. I have done my own research. Both the neurologist in Raleigh and my neurologist dont understand why the neurologists in Charlotte put me on clonazepam. They expressed that it is not effective for long term treatment of seizures, can cause suicidal thoughts, and can cause withdrawal symptoms like more seizures and addiction if I stop . This is why my dad asked the neurologist to decrease me to .25 mg from .5 mg. Well I like clonazepam. I usually get sleepy long before I take my medicine so I am not dependent on it and I have not woke up on the floor next to my bed since I started it in September so I think it is helping. I also think the neurologist in Charlotte gave it to me not for seizures but for anxiety and REM sleep disorder which can all seem like the same things. REM sleep disorder can come from withdrawal from anti-depressants. As I looked back through my old entries I noticed that the nightmares started after I started the zoloft in 2012 and I began acting out my dreams around the time I abruptly stopped taking the zoloft after getting it increased. The night my friend stayed with me last summer, I dont believe that was a seizure. I believe it was a sleep disorder. I did not fall off the bed or get hurt, I got off the bed, got back on the bed, talked to him, walked to the bathroom etc all while I was sleep and have no memory of it. When I had the EEG done, the only thing they found was a surge of electricity in my brain when I woke up during a nap because I felt my arm jerk. Now what I do not like about clonazepam is the fact that like they said it decreases in effectiveness over time, it doesnt really treat seizures, and it can make things worse if I stop it. So I decided I think I am going to get the VNS after all. I said I wasnt going to get it because I wasnt having seizures anymore but the seizure I had 2 weeks ago reminded me that I need more treatment. I also thought maybe Im not havin seizures at all or Im not having the type of seizures that VNS treats but after doing some research on seizures I realized I have experienced different types of seizures generalized myoclonic- These are the ones I had at work and in the grocery store when my body was jerking and I lost consciousness absence- these are the ones I would have when waking up in the mornings. I couldnt talk. All I could do is stare at the clock then I would look at the clock again and realize time had passed tonic clonic- these were kind of like the myclonic where my arm would rise up or I would suddenly fall before the jerking started simple motor- these are the ones I had when it felt like somebody was pushing my head to the side psychological-this is characterized by memory or emotional disturbance which explains why i always wake up crying and saying "Im scared." and "They're going to take my license." complex partial-these are the ones I thought were anxiety attacks. These seizures are characterized by fidgeting and involuntary but coordinated movements. These are the ones when Im laying in bed and i start to feel dizzy and nauseous. I start to just move constantly and touch my face and all my movements feel so pointless but its like I dont know what else to do So it seems like the seizures are from the stroke since they are mostly partial and the times they were generalized, they still started out partial so they would actually go into the partial with secondary generalization category. Now I know there is a seizure explanation for what I have experienced and I more than likely experienced REM sleep disorder and anxiety in my sleep. So I am going to try the VNS after all and see if the psychiatrist can prescribe something for the sleep issue for when the clonazepam starts to wear off. Hopefully I can solve the sleep issue just through psychotherapy instead of more medication though.

Yesterday my arm was feeling weird. I had a headache the entire day and my arm just felt weird. It felt the way it feels before I have a seizure. When I have a seizure most of the time I can remember my arm (the affected one) moving uncontrollably. Either it suddenly starts to rise up or it starts jerking like Im trying to hit someone but something is pushing my arm back down. I was pretty scared all day but I eventually fell asleep. Well today I swear I had my wrist support on all day. My arm just felt irritated. Im so used to it being bent that it has never really bothered me but for some reason it is starting to bother me! I was in the store with my dad and I told him "look my arm is straight." It was like it was painful for my arm to be bent like it usually is. Even as my dad and I sat at the waffle house for breakfast, I tried to straighten my arm out under the table. As we rode in the car my arm kept feeling tingly and I kept straightening it. I looked at my wrist and I didnt have to try to straighten it because it was already resting semi-straight on my thigh. When I got back home I realized I did not have my wrist support on all day. This is not good of course because that means my wrist has been bent all day BUT it also means I have been straightening my elbow all day even with my wrist and fingers contracted which is something that has always been near impossible and caused painful spasms before. Earlier when I took off my jacket and realized I didnt have on my wrist support, I tried to straighten my wrist by thinking about it. I could not believe it when my thumb and fingers opened a little as I twisted my forearm to turn my palm up. I cried for a second because I was so happy. Its like the e-stim, exercising, wearing the splint, and using my hand everyday is finally working. Im not playing the piano like kathy spencer but I have movement AND Im using my arm everyday. It is a great feeling and I think this is only the beginning :-)

Thanks you guys. exercise really does help. I went back to the gym this morning. The guy that did my assessment spoke to me and remembered my name. Seniors Yoga really made me feel good about myself. My instructor helped me a lot and told me to be patient and put me in a pose I could hold when the class did exercises that were too difficult for me. One lady told me I did a really good job and she thought I did a great job just being there and trying. :-) One of the things we did was visualize our movements after we did them. The lady that commended me on my effort shared a phrase that she used to tell her students. It went something like "If you can perceive it, believe you can achieve it. Basically if you think you can, you can! I did some things I did not know I could do. I tried to keep the rolled up towel in my hand with my wrist support on. After yoga, I did my workout plan. My favorite thing to do is the nustep machine since it straightens my arm all the way. I also like working on side stepping over the hurdles and stepping up and standing on 1 foot because it really helps with my balance. I seen a man walking the indoor track with a big plastic AFO like the one I used to wear. There was a lady walking behind him with a crutch. She told me he had 2 strokes. He was walking really slow and his hand was in a fist. It just made me realize wow I have come really far. To think that I used to be like him and now today I am rolling on the floor without my brace doing yoga really made me feel accomplished. I also drove around more today. I stopped by campus and hung out with a friend from college (which is on the other side of town). I know I complain a lot when bad things happen so I just wanted to make this entry because I am very thankful that I slept peacefully through the night, made progress at the gym, and drove around today without getting in an accident. Its so easy to vent and complain when things go wrong but a lot of things went right today so I am thankful that my life is not 1 big nightmare even though it feels like it sometimes.

Thanks for all of your support. I will try to go through my blog post and see if I can find anything that seems to be repeating. Its always so hard to remember dreams and things that happen in the middle of the night so Im glad I blogged a lot of times it happened. My memory has been extremely bad since last week when I passed out/slept walked/whatever. I literally feel like I am repeating myself when I talk on the phone because I cant remember who I talked to and what I told them about. I have to look through my call log on my phone just to remember if I just called someone or not. It's no fun at all. I returned my books to the library. Im just too scared to focus on reading. I tore the page in a book last week when I passed out. I have my own nook but my anxiety keeps me from really being able to enjoy the books I own. So I've just mainly been watching tv. I went to the gym yesterday for my fitness assessment. Everything was good-my cholesterol, heart rate, blood pressure, etc. I explained to the exercise physiologist that I'd had a stroke. He was really nice. He told me I could retrain my brain to use my left side and he gave me a workout plan that will strengthen my arms, core, and legs. He also suggested the warm water pool classes in addition to the senior yoga classes and "stretch & breathe" classes I have gone to. It sucks that I am paying out of pocket but I think it will be worth it. I feel in control of my body and Im not confined to a PT room with a couple of sessions. I have a whole health plex I can use anytime I want with licensed physiologist there to help and I dont need a doctor's order or a round of botox in my arm just to go. I like that a lot of the people there are older and have some type of disability too. I really think I will make progress. I've decided to go 2-3 times a week and try the warm water therapy classes once I feel safe being in water. It is really hard sitting home all day, being afraid every time I drive, and pretty much putting my career and independent life on hold while my peers go on with their lives so Im hoping this gym routine will give me purpose and make a good change. I notice I dont feel so depressed on the days that I go work out and use my arm around the house.

I woke up at 3am. I remember people talking to me and me being in a hospital so I thought I just woke up from a dream but I also remember waking up scared because something was pushing my body. I felt really off balanced but my stomach hurted really bad so i walked to the bathroom. nothing happened so I laid back down and although I was still scared eventually I fell back asleep. I woke up again around 9am. I started looking at tv when I started to feel really hot and my heart started beating really fast. I felt dizzy and nauseous. I knew I could not yell for my dad so I sat up to go get him but something pushed me back down on the bed and my head hit the pillow. I called my dad from my cell phone and he came in here. I felt normal again. Unfortunately, I have been having twitches of dizziness all day. They feel just like they're about to turn into a seizure but I will just get a flash then it goes away. Ever since I woke up this morning, my pinky finger hurts, I scratched my leg, and my tongue is sore from where I must have bit it. Seizures? Panic attacks? Demons? Seems like everyone has a theory but no one has any answers. I have an appointment with Duke neurology next week. I hope they have some answers and treatment for me. I've already quit my job, gave up my apartment, and moved back home. This condition has me scared to drive or to go anywhere but worst of all Im scared to lay in my own bed, scared to rest, scared to sleep, scared to read a book. These passive activities seem to trigger the condition. Woe is me. Thanks for all your support.

Thursday my dad made me stay home all day. I told him one like that had not happened since I was at work in September so it probably wont happen again for another couple of months but he still wanted me to rest so I did. Yesterday though I had to get out. Laying in bed is the scariest and probably gives me more panic attacks than anything since the "seizures" were always in my sleep and the dizziness always happens when Im laying down on the computer or reading a book. So I got my dad to drop me off at the gym. I went to Senior Yoga first. The instructor was really nice and he helped me do the poses and told me when to just rest until the next easier pose. It was tougher than I expected! The back of my thighs, abs, back, and arms were feeling the stretches! but I was proud of myself at doing the exercise and using my left arm on the floor without my brace. I think the class will be good for building my confidence into leaning to my weaker side more. I went to a Senior Strength class but it was a little more fast paced ad the instructor did not seem too personable. plus we were in the basketball gym and a lot of the exercises were standing up. so I didnt want to risk falling on that hard floor so I sat out. I met a new friend. His name is Billy. He was really helpful showing my the machines, adjusting them for me, and he even got me a pair of headphones so I could listen to the mini tv on the machines. Such nice people I got a great work out. Later I took a walk through the park with a friend from college. Through all the driving exercising, and everything I did yesterday I felt fine. But not this morning. I woke up begging God to help me and my leg was shaking. I don't remember why. I think I though I was about to have a seizure. Its like my body woke up before my brain or something. Soon I calmed down and started to read a book. Thats when it happened again. Something took over me. My heart started beating fast, I was scared and hot. I thought it could be a seizure so I rolled to my side and called me dad but he did not answer. I stared in space until I felt okay. Im trying so hard to live a normal life. Im trying to find out what is going on with me. but its really hard. Its hard when all of the doctors are playing a guessing game. Its hard when waking up in the morning feels like waking up from death. Its hard when you live in fear every time you leave the house but your brain mainly only goes crazy when your laying down resting in bed. I just wish I had answers so I could treat this thing and live a semi-normal life

Thanks nancy. I remember weening myself off the baclofen before I moved to Charlotte at the end of 2012. When trying to qualify for the bioness, I was recommended to get back on it so I did. It seems like these things started when I restarted the baclofen and stopped the zoloft since it wasnt helping my depression. Not saying the drugs are causing it but I do think you could have a valid point. I also wanted to add that yesterday I did not do any strenuous exercise, I did not do electrical stimulation on my arm, and I was feeling really great, so I can't blame stress or burnout. I also had prunes and non fat sugar free yogurt for breakfast and a vegetarian sandwich with an orange for lunch. I had drank 2-3 bottles of water before the seizure thing happened so I cant blame my diet.

Things were going pretty good. Today I went to the gym and signed up for a membership. Its a gym that the hospital owns so they also have OTs PTs and personal trainers. I especially like that they offer group classes like chair yoga and senior exercise classes so it will be easier for me to keep up with the group. I was having a good day. I treated myself to a restaurant I've never been to for lunch then came home to finish reading a business book. and thats when it happened. as i was laying down reading I felt my left arm start to rise up. I tried to push it back down but I knew it was a seizure. I tried to put my book down but tore the page. I tried to yell for help but I guess I was just thinking it and could not talk. It felt like I was dreaming while I was sleep. I was talking to strangers and just random things happening. Then I realized I was sitting on my bed crying hysterically and my dad and brother were talking to me. I didn't know what was going on and I was terrified. I kept saying "They're going to take my license" which I always say once I realize I've had a seizure. My dad put my shoes on me and decided to take me to the emergency room because my dad says I was staring and my eyes were really wide plus I was really out of it. Once we got to the emergency room parking lot I started to remember what I wrote in the last paragraph plus the parking lot was full so we went back home. but my dad told me more. He said I walked into the the kitchen and he seen me walking past his room but I was walking strange. Then he heard a boom and he found me laying on the kitchen floor just staring into space and not responding. He said its like I was sleep walking. I don't understand how I got to the kitchen. It is on the other side of the house and I had to step down a step from my hallway then up a step into the kitchen. How did I do all of this without wearing my brace and no memory of it? I guess my dad helped me back to my room. The last time I fell without my brace when I was 14, I sprained my ankle. Im glad I did not sprain it today. My left side is sore but my headache is going away, My dad does not think I had a seizure and none of the neurologist or ER doctors think what Im having are seizures. I just wish I knew what it was. Now I feel scared to drive, work out at the gym, and take on the responsibility of starting a business which was my only hope after quitting my job. I just dont understand

I am feeling good today so decided to write a quick blog and spare you guys the long drawn out entries of the good bad and ugly in my life. For some reason the psychiatrist still has not called to schedule my appointment. I've been calling my neurologist every week for the past month. So today I seen the hematologist. He put me back on iron pills but I don't think I really need them. My hemoglobin is at 11.6 and the normal level is 12. He is going to check my blood for everything and call me if something is wrong. I know I have something going on psychologically but I just wanted to rule out if there is anything else going on. When I was little before we found out about the AVM, my doctor thought I had hypoglycemia. Since my neurologist doesn't think Im having real seizures, I just want to see if there is something else causing the random attacks. I went to the rec center on Saturday. My friend I've known since my stroke helped me. I walked the treadmill for 20 minutes and she helped me with the big machines. I dont know what they are called. I did the one where you pull the bar down, the one where you pull the bars in, and the one where you push the bars up. My knee was kind of sore after the treadmill. Then I got a spasm on like the inside of my arm so I went home lol. I was glad to have my friend there to help me put my fingers around the bars and to help push until I felt confident for her to let go and let me do it. I was trying to figure out how I can exercise and go to the gym by myself. I know I need to strengthen my triceps and not my biceps but thats about all I know. Then today I discovered there is a Select Physical Therapy in the same building as my hematologist! Select Physical Therapy was where I went in Charlotte. I had been feeling kind of lost because i dont want to go back to my pessimist pain management doctor who is only going to refer me to the pessimist OTs and PTs at the outpatient rehab at the hospital. But now that I know there is a Select Physical Therapy here I am definitely going to fight to get back in there as soon as my medicaid gets switched over and I get a new PCP. I went back to the library today and sometimes I really don't miss it. As I dropped books into the drop box, I thought about how I used to have to push that heavy cart outside in the cold and rain grab all of the books, cds, and movies out of one cart put them in the other cart then push the cart back in the library only to take them all out of the cart, check them in one by one, and sort them in the book trucks all with one hand of course. Boy do I not miss that! After the doctor I went out to lunch with my dad. I could never do that in Charlotte. It was nice. I came home to read some more and work on my business plan. I am starting to see the silver lining of me moving back home and I am glad Im not bogged down by depression right now so I can actually feel optimism. i finally have more time to focus on getting my left side better and finding the career for me.

Hey I am not a caregiver but I do admire your strength. I wish I had someone who cared about me as much as you do your family. You are so strong and caring. Your blog caught my attention in the beginning because I miss work sometimes too. I was so great at school and being a student so after I graduated it was like well what do I do now? I understand how you feel about work too. With all of my doctor appointments and therapy sessions I just could not work up to my fullest potential as an employee. I miss my team of co-workers. I didnt love my job but I loved being able to say I had one. I miss the jokes and life lessons I learned from co-workers and regular customers. I have a degree in criminal justice but I definitely cant do any law enforcement work so once I decided I didnt want to pursue higher education my 4.0 gpa in criminal justice and sociology pretty much became useless. Its easy to say just go volunteer or pick up a new hobby but I understand how you feel when you're so busy you cant commit to volunteering and you have to have the free time and passion to start a new hobby. Well just want to say again you are strong and really appreciated. I guess your purpose right now is to be a caregiver and homemaker instead of employee.

It is always hard to write in this blog. Some days I am feeling so low and other days I feel wonderful. Of course it is easier for me to blog when Im depressed because when everyone is at work too busy to listen to me, the blog is always here for me to vent. Then I try to write at times like this when Im feeling normal so the blog becomes crazy long. Sorry! I wish I could say 2014 had a great start but sadly i can't. It was January 2 I believe when I had another "attack". I was laying in bed as always and started to feel weird. Although I tried to talk to myself to stay calm and insist that I was not going to have a seizure, I really felt like my body would start jerking and I would fall off the bed any minute. I felt immense fear and wanted to cry. My left arm and leg felt like they were jumping but I could not tell because I was under a blanket. I could not stop moving. Every time it happens I feel like Im drugged up or something like I touch my face move my legs. I just do whatever because its such a horrible feeling and I dont know how to make it go away. My vision became blurry and I felt like i was dreaming. my heart started pounding. I started sweating and I felt nauseous. It felt like my eyes were opened really wide so I closed them and continued to lay down until the feeling went away. It lasted maybe a minute total. Im still waiting on the psychologist to set up my appointment. I have scheduled a trip to the hematologist next Monday to check my blood. Im just curious at to if there is something going on in my body and Im actually having panic attacks because I think they are seizures. Later that day I had a breakdown. I was out of medicine and my doctor kept giving me the run around and putting me on hold. I had been constipated all week and I was just really not feeling well. I was also pretty sad that I had to experience the "seizure" so soon into the new year. I had an attitude which caused me to get into a fuss with my dad which ended in him scolding me for being such a "hateful" person. and I was frustrated that I could not do my own hair which had not been washed in over a month. I could not stop crying and wanting to die. I know it was just a bunch of petty things but I just felt so frustrated and wanted everything to go away. I ended up taking 2 norco (the pain pills I got after I got hit by the car.) They made me feel so much better and after my nap, the (psychological) pain was gone. I read a book, made some goals, and felt back to normal. I dont take the pills every day but when I just cant stop thinking about death I take 1 or 2 to help me calm down. They always work. Other than that I have been enjoying my self. I got a bunch of books from the library to help me find my purpose and maybe start a home business. I love to just get in my car and go. I went to the movies with my cousins on Saturday after finally finding someone to do my hair. Just being out or around family is such a great distraction and makes me appreciate being here and not having to work 40 hours a week just to pay bills and live alone in my 1 bedroom apartment. I also enjoy being able to take my time exercising. I have learned to moved my wrist when turning the door knob and twist my arm a little so my bent finger actually hits the light switch instead of my balled up fist. I achieved all of my goals in 2013 (my promotion, got in no car accidents, started using my left hand, got my e-stim unit, got a new brace for my hand and leg, etc). My only goal for 2014 is to continue my 2013 goals. The only difference is instead of going for a promotion, I am taking this free time to really figure out what my purpose is and what I want to do as a career. I love the work from home entrepreneur books. They are very motivating.

How could I possibly feel sad? I havent had any seizures or nightmares in my sleep. I get out and drive to visit family and friends everyday. I dont have to worry about working 40 hours a week just for all of my money to go to bills. I can go wherever I want, do whatever I want, whenever I want. But Im still sad. When Im not hanging out with family and friends, I am just sitting in my room. All of my friends work during the day so I have no one to talk to. When Im too tired to go anywhere and have exercised, I get so bored staring at my laptop screen until the battery dies then watch tv until that gets boring then read a book until I cant focus. My brother moved and my dad works a part time driving job and when he is in town he's always out doing something or working on the yard so it is very lonely being here. I try my best to go out as much as possible but by the time everyone is off work, its dark, traffic is crazy and the depression has lessened. I just feel so worthless. Between Thanksgiving and Christmas, family and friends of family have constantly asked "So what are you doing now that you're back? Do you miss Charlotte? Are you back in school?" I remember my last day at work when I was holding my sadness in the whole day. Then my co-worker asked me what I was going to do when I got back home. "Nothing" I replied trying to swallow the lump in my throat. Are you going to work? No. Going back to school? No. Well what are you going to do?" "Nothing." was my final reply as I buried my head in my arms on the table and cried like a baby. I know they dont mean any harm. My co-worker did not even know I was quitting so Im sure she was not aware of my medical situation. But here back home my dad must have told everyone I wanted to come back home. He told them I needed a break and was tired of working. It is hard to explain to everyone that: I had seizures. No one could understand why. I got hit by a car. My work performance dropped. I got my medication increased and new medications that made me dizzy and tired. After having a seizure at work I started having more anxiety attacks that I would have another. I was scared to take the bus after getting hit as a pedestrian but scared to drive everywhere not knowing when the seizures would occur. It wasnt safe for me to continue living by myself with the seizures since I would fall off my bed in my sleep and could fall just walking around at any time and have a seizure. My performance was dropping so much at work but I could not quit because then I would have no money to pay bills. So I moved back home. Yeah I guess it is easier for my dad to just say I got tired and wanted to come home. It just makes me feel like such a bum. Everyone is working and married with kids and living a normal life. I graduated college with a perfect GPA, got a Army civilian medal of achievement, and got promoted after only 6 months at my first real job but nobody cares. All of my accomplishments feel pointless. Im not doing anything with my life. I try to make plans for the future but even when things were perfect in Charlotte the seizures ruined everything. Its like my cousin with sickle cell. Even though she looks healthy and she wants to accomplish goals, she cant stop her body from getting sick. I just feel like whats the point in me being here. Why did God bring me back here with no plan or purpose? Laying in bed feels like Im just wasting my time when I could be working on something amazing. but what? I dont know what I want to do with my life. I worked so hard interning for the Army's recruitment program for students with disabilities. but all my hard work was for nothing since they are on a hiring freeze. When Im alone and have no one to talk to, I cant block out these thoughts and I just need something to make me feel happy. I eat sweets, I listen to music, I try to find something funny on tv, any form of entertainment, but sometimes I just cant make the feeling go away. I wish the psychologist would hurry up and schedule my appointment. I feel like I can only feel 2 extremes: 1.) happiness where I feel like Im dreaming and Im having so much fun until I become aware then have to calm myself down because I think Im going to have a seizure or 2.) a heaviness a sadness where I feel like all good things have come to an end and Im just wasting away being here so I might as well die.

i took a 2 hour nap after this blog and after I woke up it happened again. Here I am laying in bed at 1am trying to listen to music and do passive web surfing to not focus on it and it happened again! Im shaking all over and afraid to fall asleep

I was laying in bed looking at my laptop when I started to get a weird feeling. I immediately started to pray out loud. As I prayed I tried to breathe slowly to calm myself down thinking maybe its just a panic attack. but no, it wasnt. Everything became blurry. I let my laptop slide off my lap onto the bed. I reached for my phone but I was so nauseous that I thought I might throw up if I tried to call my dad. Im home by myself. I looked at my bedroom door but it was just blurry. I lay back down and just held my head. My limbs were trembling. It felt like I was not in control of my body. I just closed my eyes until I felt normal again. I just touched the left side of my face and felt a tear. Did I have a seizure? Lastnight I was in the kitchen drinking a soda. I got up to throw the bottle away but before I could stand, I felt weird. All I could do was stare. I was aware of everything going on around me and I even read a text that I got on my phone but I was afraid to stand up. I did feel a tingling in my left foot. I had to look at it to know that it was there. It like I became aware that my left side is still partially paralyzed. I took some deep breaths and when I felt okay, I got up, threw my trash away and came to my room to talk on the phone. No nausea, no shaking, no blurred vision. Was this just dizziness from my medicine? A panic attack? I was going to ween myself down on the keppra back to what i was on before but like i said in my other entry, I am afraid I will have a grand mal so I have not changed back. I am still taking the 1000 mg in the morning and 1000 at night. I looked up panic attacks and was convinced that majority of the time I am just having a panic or anxiety attack when I randomly feel dizzy then it goes away. My neurologist is convinced that I am not having seizures at all and everything is psychological. I know I have anxiety, depression, and parasomnias but its like every situation is different. Sometimes I can take deep breaths and Im fine. sometimes I cant talk at all. Sometimes I feel like Im moving in slow motion, sometimes I wake up feeling like Ive been fighting and my limbs have been all twisted up, sometimes I feel tingling in my limbs, sometime I have spasms and jerks. Sometimes my heart beats extremely fast. Sometimes it beats so slow I think im going to pass out. Sometimes I stare into space. Sometimes I cant open my eyes. Sometimes I fall asleep. sometimes I stay conscious. Its all very frustrating because my neurologist says when you have a seizure you dont see it coming. but for me i nearly always see it coming. If Im sleeping, it wakes me up and happens. When Im awake I immediately break my focus and do something to stop it from happening. I guess my neurologist think this is just anxiety since I feel it coming but I think its more. (by the way, I had just eaten an egg white sandwich with cheddar spinach and tomatoes then took my medicine before this happened so there was plenty of protein (Im vegetarian) and medicine in my system before this happened.)

I woke up yesterday morning, fell back asleep despite my fear, and woke up again. No nightmares! I woke up Thursday morning and this morning. No seizures! Its such a blessing to just get a good nights rest. Every morning that I wake up and realize I didnt have any parasomnias or seizures, Im just so happy. No accidents I am also grateful for God keeping me safe when I drive. I did not drive much when I lived here before. As some of you know I just got my license 2 years ago and got in 2 accidents the first year, then an accident last year. When I lived here before I was either only driving back and forth to work because I was scared to go anywhere else or I was riding with someone else after totaling my first 2 cars. So even though I got a lot of experience living in Charlotte, I am learning the Fayetteville roads all over. Although its a smaller city, it is a lot of traffic and where I live there are not many street lights so driving can be very scary especially at night. But Im grateful that December 5th marked a whole year I have not got in a car accident. Its a lot to be thankful for considering I've done all of my driving this past year as a newcomer and inexperienced driver in Charlotte (the largest city in NC). I just pray God continues to protect me because Fayetteville has grown so much because of Ft. Bragg but I dont want to fear driving. No seizures I am not worried about the seizures right now. Today I was in Wal Mart with my mom and I just felt weak, dizzy, light headed, and tired. My mouth was so dry and I kept feeling dizzy. Maybe the doctor is right and I do have anxiety attacks. As soon as we left the checkout station and headed to the car I felt fine. I know the increase in keppra has affected my mood a lot. I've already blogged about the mood changes but right now I think Im going to keep taking it and maybe the side effects will wear off. I just dont want to risk having a seizure again if I go back to the old dosage and so far I have not had any seizures (only nightmares I guess and anxiety attacks) since being on the newest dosage. Even though I remember having the staring ones when I woke up a few times, I have not had any grand mals that had me waking up on the floor or waking up my body sore like Ive been fighting all night.(These were happening on the lower dosage). I hope working with the psychologist can help the anxiety, parasomnias, and mood changes because right now I feel safer on the higher dosage when I look back and compare to how things were on the lower dosage. Using my left hand About a month ago, I made a post in lighter sides of stroke about making progress. I feel like my progress with my hand is the one thing keeping me from being extremely depressed. This year I have made so much progress! I am doing my exercises every morning, wearing the splint everyday, and using my hand more and more. Today I hugged both of my parents and squeezed them using both arms! I had not done that in years. I heard my dad bragging on the phone to a relative about me explaining how I use my hand a lot more now. I was feeling confident so I showed him what else I could do. I wrapped my fingers around the heavy wooden kitchen chair and using only my left arm, pulled the chair out from the table! My mom says my arm is getting bigger too. She said one time it was looking smaller than my other arm. She also noticed how my fingers do not dig into my palms like they used too. I am so very grateful for this blessing. My next goal is to get better at opening the door without using my good hand. I also bought a 2 pound weight and plan to mimic drinking from a glass so I can begin drinking from my water bottle using my left hand. All Ive wanted since 2001 was to use my left hand so I thank God even though problems have been added in my life, instead of dwelling on what I cant do, now I can look at the list of things i CAN do that I couldnt do before. Keeping my faith By the way, I began attending a Catholic church and I love it. Nothing at all against Protestants. I am not catholic. It just feels good to be able to worship through prayer and song without someone yelling at me to clap if I love the Lord or shout if I want my blessing or do a praise dance if I have anything to be thankful for. Most of all I dont have anyone telling me Im not praising God enough, I dont have enough faith, or an evangelical pastor pushing me to the floor to rebuke the evil spirits in me. I finally dont feel condemned or guilty in church. Sorry this is so long. I am wide awake from coffee and just wanted to write while my mood is good

Thanks everyone. I still have faith and pray. Im just kind of frustated which the church and churchy people