CagedBird

Stroke Survivor - female
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  1. CagedBird

    Back from UNC

    By CagedBird,

    Thank you guys! Well I went to UNC Chapel Hill on Friday. My bestfriend (my cousin) went with me and stayed the entire weekend so that was nice. When my dad came to get her, he brought my brother with him so he stayed with me for a day or 2 then my dad came back and stayed with me the last 2 days. Everything was really nice. The food was great and the nurses were very nice. I mostly watched tv and read a book.
     
    Well the good news is I know that majority of the time I am not having seizures. I am having panic and anxiety attacks. The whole time I would keep pressing the button because I felt weird/scared/dizzy/light headed. but nothing ever happened. I tried sleep depriving myself at night. I tried thinking about the weird feeling but it was just so hard since I had not had a seizure in 3 weeks.
     
    Finally on Tuesday, they took me off my keppra completely. (They had been slowly decreasing it.) I had not had a bowel movement since last Wednesday so I asked for a suppository. Still, its hard to use the bathroom when you have a nurse standing right in front of you. I called my favorite nurse and she took me to the bathroom. I like her because she stood on the other side of the door and turned the tv up for me so I wouldnt feel so awkward. I was really trying to use the bathroom when I just knew I was having a seizure so I told her "Im having a seizure." After that all I remember is feeling like I was falling off the toilet (but I know I wasnt because there were arm rest on both sides of me and my nurse rushed in as soon as I told her I was having the seizure. Later on she told me I didn't know who she was. I bit my tongue during the seizure and I threw up in my mouth some.
     
    A few hours later my dad was there and I was back in bed. I felt like my arm was about to start jerking so I told him "its happening again." After that I don't remember anything but my dad said he went to get the nurses, they asked me questions, showed me pictures, and I asked my dad why he was crying. I don't remember any of that. I had a horrible headache that night so they gave me tylenol and I slept good.
     
     
    The doctor said I had generalized tonic clonic seizures. They start in the temporal lobe where my AVM was at and spread to the frontal lobe (my AVM hemorrhaged from the temporal to frontal lobe). I did an MRI and I have to go back in a month. The only explanation the doctor gave me was the brain damage. When I asked why the seizures came back after being seizure free for so long, she said it could just be me growing up and hormones. I keep telling myself Im not going to have a seizure but since I just had those 2 days ago, the fear is so fresh in my mind. I keep touching my arm to make sure its not about to start jerking. My thighs, stomach, and triceps are sore on top of my left arm feeling weird. But the good news (I guess) is Im not having tiny seizures. All those times I get scared, feel weird, lightheaded, etc those are most likely anxiety or panic attacks. I pressed the button during those times but they didnt show up on the EEG or EKG monitor.
     
    I go back to my psychiatrist and therapist next week so I hope that will help wth my anxiety/panic. Since I only had 2 seizures ast month, I am hopeful that between me taking the mini pill to balance my hormones, taking the clonazepam twice a day, and taking my keppra every 12 hours, I will stay seizure free. Oh yeah I am moving into my new place this weekend. I will take pictures
  2. CagedBird

    the idle mind

    By CagedBird,

    Thank you guys so much for your comments. I signed my lease today and got my power turned on. The apartment is huge. My last apartments were 650-700 sq ft at the most. This one is 975 sq ft. I wish I could've got excited today but I was so worried about the EEG still. I am so ready to decorate my new place and live my seizure free life! This EEG thing just worries me because Im scared they will take me off my medicine like last time which will mess things up after I've been doing so good. Im also scared because I think I am going to be sleep deprived during the EEG and ever since I started the clonazepam in September, sleep has been my favorite thing to do because I have no more seizures and nightmares and no worries or anxieties while sleep.
     
    I know its all in my head. Earlier I was watching a tv show on my laptop and I felt the slightest weird feeling so I immediately shut my laptop. I tried to call someone on the phone or text someone then I wanted to cry when I couldnt reach anyone at that moment so I went in the kitchen and ate some pizza. It kept my mind occupied and I forgot all about the weird feeling. When I was in college, I knew I was seizure free. I never thought about seizures besides taking keppra everyday. I didnt even know what it felt like to have a seizure. I enjoyed that "weird feeling" I would get back then when doing something exciting or going somewhere different. I stayed busy and anytime I wasnt busy, I enjoyed just relaxing. Now whenever I do something fun, I get scared to feel excited and when I have nothing to do I immediately try to find something to do. Its really hard to explain but I know its anxiety and just the fact that the feeling of having a seizure is so fresh in my mind.
     
    I am thankful I did not have a seizure today and I hope I do not have one tonight or tomorrow before I get to the hospital. I will not be bringing my laptop so I will not be able to update you guys until I get back. I really do hope that the EEG goes well. I also hope that I can get rid of this fear and anxiety. I hate freaking out every time I cant find someone to talk to or having to stop what Im doing and think about something else every time I feel "different". Wish me luck at UNC. I guess I will be back by Tuesday
  3. CagedBird
    I love you guys thank you so much for your support. I have so much more I've been wanting to share with you guys but I guess I get scared that Im going to jinx myself with the good news plus sometimes I don't like thinking about the bad stuff I write about because it triggers those feelings.
    Well my great news is today will make it 2 weeks that I have been seizure free (knock on wood). I don't know if its the hormone (birth control), the fact that I cut back on the keppra, the fact that I've been taking the keppra every 12 hours instead of just twice a day, or the fact that I started taking the clonazepam twice a day but I have not had any seizures.
     
    Panic Attacks
    However, the last 2 days I had what I think were panic attacks. I have been so worried about this video EEG I have on Friday. I think about it everyday even though I try not to. This is the week I think Im ovulating so I have been super scared since the seizures happen the most during that week. I keep thinking what if I have one before Friday then cant have one while Im there like last time in September when I had the big one at work the day before the EEG? What is it going to feel like when I have the seizure? I want to have one this time so it wont be another wasted trip but Im so scared because I dont want to feel the seizure again.
     
    On Monday around 7:30 I was trying to keep my mind busy watching tv, listening to music, and playing a game online at the same time and I started to feel weird. I sat up on my bed and told myself I was okay but then I started feeling really sick like I was going to faint. I started yelling "daddy" in a really deep voice (I have a soft voice) and I just rolled over on my bed. Then it stopped. My heart was racing and I had to use the bathroom a lot. I thought I was going to throw up. I dont know if this was a seizure but my medicine stopped it from getting worse or if it was just a panic attack.
    Then yesterday I was just trying to stay busy to keep from thinking about it since it was 7:30 again. I called my dad to see where he was at. I notice these things only happen in the evening. When I lived in Charlotte they used to only happen in my sleep or as soon as I woke up in the morning but now they only happen between like 4 and 8 pm. So I started to get scared because I called my dad and he didnt answer so I called my cousin and she didnt answer so I got really scared that what if I have a seizure? I tried to breathe and say "Im okay" but then I said "Im not okay." I called my dad still no answer. So I just laid back and waited for the seizure to happen but nothing happened. My arm didnt feel weird. I didnt have a headache and besides feeling really annoyed, I felt back to normal pretty quickly. I guess it was just panic and paranoia
     
    Moving out
    Well my other great news is that I got my apartment. The landlord wants me to move in Friday but of course I have to go to UNC I am excited about moving though. I have a 2 bedroom so I will have my own office to do my work from home stuff. There is a neighborhood park with a walking trail and picnic tables. I can see myself going there a lot taking a walk or reading a book. We also have little gazebos throughout the neighborhood I can sit and read in. I am really looking forward to it. Since I have not had any seizures lately and havent had any in my sleep at all since September, Im not scared to move. I think it will be nice to have my own space again. Instead of being stuck in this room looking at the walls, thinking of seizures, and feeling like a depressed high schooler again with no job, no transportation, and no social life, I will finally have a change of scenery. Not only do I have lot of opportunities to go outside but Im looking forward to cooking and just feeling independent again. I wont have a full time job to keep me busy but I also wont have the commute or the stress and anxiety that came with it.
  4. CagedBird
    Today I went back to my family doctor. I have been going to him since I was in 3rd grade but I had not been to him for about 2 years while I had moved away. I usually dont like him. He always seemed kind of slow to me and I never trusted him I guess because for the longest he diagnosed me with everything he could think of accept seizures and ever suggested a brain scan. It took me having the grand mal and being transported to UNC to finally find out what was going on.
     
    So yeah I was not really looking forward to seeing him but I woke up this morning and said today was going to be a wonderful day and it was. My appointment with him was like a breath of fresh air. My dad paid my brother to chauffeur me around today and my doctor filled out my forms to ride the disabled van here so I shouldnt have any transportation issues if my license gets suspended. Anyway it was just so refreshing talking to him. I explained the change in seizures to him and he too said that the seizures I have been having lately sound like keppra seizures. Who knew too much medicine could cause more seizures? Go figure.
    He also agreed that I should not even think about Abilify and he told me I probably don't need xanax if Im taking the klonapin twice a day now because xanax and klonapin are in the same medicine group but klonapin is also anti-seizure.
     
    Lastly I told him I was scared to go back to the surgery doctor because he wants to put me to sleep and look up my butt to see whats causing the constipation even though I've changed my diet. Im scared to be put to sleep because I dont want to have another seizure and I remember almost having a seizure in November 2012 when I got a suprascapular injection in my shoulder which is the day the seizures started. Well my doctor today agreed that I probably dont need to be put to sleep, Im probably only constipated again since I started the iron pill, and I would be better off taking a fiber supplement than the lactulose laxative and amitiza the surgeon prescribed.
     
    So today was a success. I finally had a more productive doctor appointment and didnt leave with a bunch of prescriptions and questions
  5. CagedBird

    the pressure's off

    By CagedBird,

    I wanted to add more to my last entry but I didnt want it to get too long so I decided to write another one. I appreciate your comments. Oh yeah I wanted to make a correction. I am taking 1500 mg a day again not 1750. The last time the neurologist switched me to 1500 he put me on 750 mg twice a day. This time he just told me to chop up my 500 mg tablets and take 1 and a half twice a day. I had a anxiety attack after taking my meds this morning. I had to sit down and put my head down but after I took my clonazepam I felt better really relaxed.
     
    After I left the doctor yesterday, I applied for an income based apartment. The ladies at the office were really nice and showed me the vacant handicap accessible apartment. Once my application gets approved I can move. I will only be about 15 minutes from my dad and not even 5 minutes from my best friend (my cousin.) I am excited about moving back to my own place and being able to sit in my living room again instead of laying in my bed all the time worrying about seizures. I feel very hopeful that this new medication regimen will help and my EEG in April will bring answers and more successful treatment this time.
     
    You guys really helped me with your comments. When I moved to Charlotte I became spiritual but not religious. I was raised that anything that wasnt evangelical christianity was the devil so I became really interested in learning about other religions when I found out there are other faiths that still worship God. Life was really good. I was not worried about burning in hell for every sin and feeling guilty and ashamed for not being the best christian everyday. I viewed God as a loving spirit. I believed in positive thinking. I got everything I wanted. I wouldnt say I "spoke it into existence" but I did speak as if I already had everything I wanted and I got it. I decided to go back to this way of thinking. Instead of begging God for everything I want, I decided to just follow Philippians 4:6 "Be anxious for nothing but in everything with prayer and supplication let your request be made known to God."
     
    I have been speaking positively all day and my arm has not been feeling so weird. The only times I thought I would have a seizure is when I thought about having a seizure. I dont feel like I have to make deals with God or beg him to make me seizure free. Today I was actually able to focus on other things. Its so easy to complain when things are going bad but we usually forget to just realize and be thankful for the good. So today I am thankful that my arm wasnt feeling weird every second, I felt peace today instead of worry, and I was able to lay in my bed without thinking i was going to have a seizure every second. I hope I can keep this mood up no matter what happens.
  6. CagedBird
    I saw my therapist this morning then talked to my neurologist. My neurologist is such a quack. He never knows anything. I asked him if it is okay for me to start the abilify even though it says ask your doctor if you have seizures. He said any medication that messes with your brain can cause seizures. I think I am NOT going to start the abilify. My mood is crappy but lately its only been cause of the seizures and taking more keppra. I told him my seizures have gotten worse since I increased the keppra. I used to only have them at night, now I walk around fearful with anxiety all day because they happen in the day too. He told me to cut back on the keppra.
     
    I really don't trust him though. He increased me from 1000 a day to 1500 mg a day but I was still having seizures so he increased it from 1500 to 2000 mg a day. When I told him the increase from 1500 to 2000 mg a day wasnt helping and was only making my mood worse a few months ago, he was quick to write me out a prescription to go back to 1000 mg a day but I stuck to the 2000 mg because I was still driving. So why did today he told me not to jump from 2000 to 1000? Today he told me to chop my pills in half and cut down to 1750. He really scares me especially when he said my seizures couldve gotten worse because of the increase in keppra. I just wanted to shoot myself in the head. But now I am going to cut back to 1750 mg of keppra, take the clonazepam twice a day since its helped keep me seizure free at night, and I might try xanax for anxiety but Im not messing with that Abilify.
     
    My therapist told me to read a book called The Pressure's Off. She said I've been exposed to so many different beliefs about God that I have this distorted view of who God is. She's trying to get me to understand that God doesn't punish me with seizures when I do bad and there's no amount of good I can do to make him bless me. I just don't understand whats the point in praying if God is going to do what he wants anyway? The Bible says "delight yourself in the Lord and he will give you the desires of your heart." Well I praise God, delight myself in him, pray, so I thought he would give me the desires of my heart but I guess I shouldve known better since I still cant move my hand and have been praying for that since 2001.
     
    My paranoid schizophrenic mother came to visit over the weekend and she kept asking me what was wrong. She was really annoying me and I was already annoyed because I could not lay down on my bed without feeling like I was going to have a seizure any minute. I heard her annoying my brother and I guess he talked back to her in a rude tone. I heard her say "Keep talking to me like that and God is going to do you how he's doing Katrina." She basically said God is punishing me. In one of my bible study groups, they were talking about suffering and they said be happy when you suffer because that means God is getting his glory and he has a purpose for you. One of my old co-workers told me to read the book of Job but I already read it and I think its stupid. The devil was looking for someone's life to ruin and God told him to go after Job. I can't have a loving relationship with a God like that and I dont understand what a lot of the christians tell me so I really just need some time to figure God out for myself. Its seems like the more I do to get closer to Him, the worser my life gets
  7. CagedBird

    just tired

    By CagedBird,

    the good
    Well as I said yesterday, I had been feeling pretty good. This morning I felt even better because I drove myself to the doctor in the rain then stopped at the pharmacy on my way home! I have been thanking God every night, every morning, and throughout the day. It felt so good to drive my car again. I had not drove in 2 weeks. Its been tough because I get invited to a lot of christian events but I live so far away from that side of town. I hate asking for a ride especially from people I dont know that well and my dad gets an attitude when I ask him to drop me off somewhere then pick me up (unless its a doctors appointment). So I was really looking forward to going to my bible studies this weekend, church, getting my hair done, etc but now its out of the question.
     
    the bad
    Well about 3 hours ago my cousin called to ask me for directions. As I was giving her the directions my arm started to feel tingly like it had been feeling since the last seizure. I tried to ignore it so I sat up on my bed and kept talking but I did not want to have a seizure and she not know so I told her I was having a seizure and she hung up and called my dad. My left arm started jerking like crazy and it felt like I was falling off my bed. I woke up to my dad sitting on my bed crying. He told me when he came in my room it was like I was sitting on the side of the bed but my head had fell between the head of my bed and my nightstand so he laid me on the floor.
     
    I remember feeling like I was falling but I also remember dreaming. I woke up hysterical. My left arm is sore but doesnt feel tingly and my left knee is sore. I have a headache and feel really tired but Im scared to fall asleep. I was really upset, scared, and sad that my dad took my driving privileges away. I also feel hopeless about moving out and like I wasted time and money buying furniture and trying for the work at home position.
     
    I am trying to look at the positives though. Im still thankful for 10 days of no seizures, driving safely today, and the fact that my cousin had just called me and my dad was here to rescue me when it happened. I havent given up on my hormone theory. I was taking the mini-pill for 5 years. I stopped taking it around spring and didnt start having seizures until November. I figured it would take time to build back up in my system but I hoped it would start working right away
     
    Also I finished the 2nd part to Joyce Meyer Positive Thoughts book. Her 12 thoughts are: (SPOILER ALERT)
    I can do whatever I need to do in life through Christ
    God loves me unconditionally
    I will not live in fear
    I am difficult to offend
    I love people and I enjoy helping them
    I trust God completely: There is no need to worry
    I am content and emotionally stable
    God meets all of my needs abundantly
    I pursue peace with God, myself, and others
    I live in the present and enjoy each moment
    I am disciplined and self-controlled
    I put God first in my life

    I did not too much care for the substance of the 2nd half of the book but I could definitely benefit in repeating every one of these thoughts (some more than others) so Im glad I read it. Just hope I can belleve it and apply it. Thanks for your support everyone.
  8. CagedBird
    Today I seen the psychiatrist and yesterday I talked to the therapist. The psychiatrist wanted me to take Xanax for my anxiety but I told him I'd rather try the therapy sessions instead of being on more medication. I told him that the side effects for Abilify say to consult your doctor before taking it if you have seizures so he told me to wait to start it until I see my neurologist again.
     
    He also told me to take my clonazepam twice a day. I love the clonazepam because it helps me fall asleep and usually stay sleep with no seizures. I used to be so afraid to fall asleep, wake up from nightmares, and wake up on the floor from seizures. I have not had very many nightmares (parasomnias) since starting the clonazepam and moving home and I only had that 1 seizure in my sleep a few weeks ago since September. I kind of want to take the clonazepam twice a day too since it relaxes me and I almost never have seizure after taking it every night, but at the same time it makes me so tired I do not want to be a walking zombie especially if I start working again. I wish I still had faith in keppra. It sucks that it doesnt seem to make a difference in controlling the seizures.
     
    I have been seizure and panic attack free for officially 10 days now YAY! I made a post on the forum but no one responded so I guess no one can relate. Basically I still have headaches sometimes but I havent had any panic attacks (dizzy, nauseous, heart beating fast). The only thing I have is this tingly feeling in my arm. The soreness in my shoulder is starting to go away but ever since the seizure I constantly feel this tingly in my arm. Like before I could not feel anything on that arm but now I constantly feel my sleeve rubbing against it and Im constantly moving it to make sure its not stiffening up or about to start jerking for another seizure. I believe in my mind that I am seizure free and Im glad I somehow got feeling back in my arm again. I just wish it didnt take a seizure to give me this feeling because instead of being excited, I get scared because I keep getting flashbacks of that day.
     
    Spiritually, things are not so good. I believe in God and I do believe everyone's prayers for me worked. But at the same time I feel scared of Him. The other day I was invited to church but I didn't go because I thought well the devil might make something bad happen to me if I go worship God. Then I was scared not to go because I thought well God is going to punish me if I don't go out of fear of the devil. I dont want to feel so superstitious when it comes to God and blessings and curses but I don't want to do anything that could make God take away my blessing. Also I keep getting really happy and too excited then I have to calm myself down because I think I will make myself have a seizure or I think something bad is bound to happen since I feel so great but I am working on my pessimism with my therapist.
     
    Other than that though my life is good. I passed all of my preliminary training for the work at home company. I was so excited when I went out and bought my headset today. I continue training tomorrow. My dad took me around to look at some income-based housing and today I bought a sofa and loveseat I really wanted. It gets tough laying in bed all day with no one to talk to while my few friends are at work. Its so much easier to think of bad stuff, worry, and give myself panic attacks when Im just laying here all day staring at the walls trying to find things to do to make time pass so it felt really good to be out of my room all day and prepare for when I move out.
  9. CagedBird
    I didn't realize how messed up I had been feeling wow. Since I moved back home altogether I had been feeling kind of down about my situation but I was still going to church, going to the gym, and just spending time with family to keep from feeling completely depressed. It wasn't until today that I realized how depressed I was. I mean in the past 3 weeks I have pretty much had 4 partial seizures and 2 tonic clonic seizures.
    I have not got in my car in almost 2 weeks and it seems like even when I try to get closer to God, he just lets more bad things happen. I had a seizure while watching a sermon online on the day I was registered to attend a singles conference at church. It doesnt help that my dad is always complaining about money so I feel like I am a burden moving back here and I have to sit in my room instead of going out because he doesnt want me to drive but he has to work to make money so he cant take me places unless its really important.
     
    So yeah I did not realize how crappy I was feeling. I'd forgot how it felt to be content. I look back and think how could I ever complain about only using 1 hand? At least I didnt have to worry about seizures! I think back to my wonderful years of college, the best years of my life and I didnt even realize my seizures were under control. I cant imagine what it would have been like to try to get through college with seizures and anxiety/panic attacks. I definitely would not have accomplished so much. So I thank God for blessing me to be seizure free for so long. I didnt realize what a blessing it was. Like I said my seizures as a child I would just blank out so they were not as scary.
     
    I also thought about driving. God allowed me to be seizure free long enough to get my license. If I wouldve never moved back home who knows I couldve had a seizure and got in an accident driving around Charlotte. If I would've never moved back home I wouldve still been working full time and not had the time to really think about the seizures and do the research. Really up until last fall I thought I just had parasomnias like my neurologist said but it wasnt until last week that I thought well what changed after I moved to Charlotte? If seizures can be caused by stress and lack of sleep, how was I seizure free the whole time I was in college? And thats when it hit me. I had NO idea my seizures were related to my hormones, progestin has an inhibitory effect on seizures, and I pretty much put myself through a progestin withdrawal when I stopped taking it in 2012.
     
    Its like wow everything seems so clear when you dont have the cloud of depression blocking you from seeing the light. Its almost scary to feel good. I started my hormone tonight because I want to get it in my system right away. (I'm celibate so I hate calling it birth control.) I keep having that thought lingering like dont get too excited. but right now I am just trying to believe all of those prayers for me have been answered and I am officially seizure free. God I wont complain anymore. I always say this about other people but it really is crazy how you don't realize how good you have it until something bad happens.
     
    Everything is not perfect. Birth control is not an anti-seizure medicine and my neuro and ob-gyn didnt even diagnose me with catamenial epilepsy so I know they are not going to be supportive of me taking the mini pill again for reasons other than birth control but it worked for me before so I believe it can work again and Im not planning on having children anytime soon so taking a pill every day does not bother me
     
    Tomorrow I start my training for the work at home job for the disabled and I think Im going to at least apply to that administrative job just to say I gave it a shot. I am so thankful I can feel hopeful again. Thank you guys for your support.
  10. CagedBird

    changing directions

    By CagedBird,

    I am going to see my gynecologist right now. I cant believe this. At first I thought it was just a theory but now I am absolutely positively sure. As I said in my last entry I was seizure free the whole time I was on the mini pill and the seizures came back right after I moved and quit taking the pill.The hormone in the mini pill actually helps seizures. My theory is that I have always had catamenial epilepsy but the mini pill helped it for all those years and I didnt even realize it.
     
    After I stopped taking the pill my estrogen level went back up (higher estrogen triggers seizures) and the seizures started. Looking at epilepsy.com I see about 3 categories of women: 1) women with epilepsy who started having seizures again when their hormones went crazy around menopause 2) women who started having seizures after they stopped the progestin based birth control (my category) and 3) women who started having seizures after they started an estrogen based birth control (higher estrogen increases seizures). So I am thoroughly convinced this all has to do with my hormones and I just pray my gynecologist will put me back on the mini pill and I will be back seizure free.
     
    I feel like I am having anxiety attacks more than anything so I cant wait until I go back to the psychiatrist next week. Every time my left arm tingles (which is does all day) I think oh no its about to start jerking. Every time I realize Im staring into space or think about what Im doing I start to feel lightheaded. I just want to get out of this bed. I just want to get out of this room.
     
    I really wanted to go apply for some jobs today. I found 2 dream jobs that I know I am qualified for (both administrative 1 in the sheriff office, 1 in a school library). I did my resume and cover letter but then I decided not to apply. I want to work, I need benefits, I want to have a great career job and I hate passing up these great opportunities. but I know I have a lot going on right now. Instead of applying to those jobs, I am going to look into the work-from-home jobs with NTI. I have a orientation with them on Friday and it is customer service work from home positions for people that get SSDI which is good for me because my SSDI just got reinstated yesterday.
     
    So this is not what I wanted but it will do. I am just going to pray that I can get back on the hormones which will make me seizure free again and I will be able to move out and work from home while getting SSDI until I am seizure free and can work full time again.
  11. CagedBird
    I went to see the therapist today. She wants me to come back next week. We only talked for about 45 minutes and I feel like I barely scratched the surface but I know she can't fix my life. My goals I made today are to work on my fear, get control of my anxiety, and find a productive outlet for my depression I guess. All of these are very hard.
     
    As for the fear and anxiety, I am constantly scared that I am going to have a seizure. As I said in one of my last entries, I feel EVERYTHING in these seizures. When I was a kid I rarely had seizures and when I did they were just nausea headache dizziness for a few minutes then I was fine. Post stroke I had them maybe once a year but I would just pass out. It was scary waking up from it and it would take a while for me to feel normal again because it felt like I'd been sleep for a very long time. Now what makes these seizures so horrible is I am aware the whole time its happening and cant control my body or get help.
    I already try to breathe and talk myself out of it which is what the therapist told me to keep doing.
     
    Trying to find something to do with my life is hard too. I keep finding jobs I want to apply for but they are full time. I cant hang out with my christian groups as much since my dad doesnt want me driving anymore. My therapist wants me to get out my room more even just sitting outside since being in my room triggers the seizures/anxiety attacks whatever. But Im just scared that doing things I dont usually do and being in different environments will just trigger that "weird" feeling and what if I have a seizure and fall on the porch or hit my head on our back deck. At least when Im in the house people can hear me and I have carpet.
     
    Im always calling my dad to see where he is and leaving my door open now. I really hate being here. I just feel like Im not myself. Whenever Im not dizzy, Im feeling immense fear/anxiety or feeling de ja vu. It is like mental torture and I would not wish it on my worst enemy. Well I hope therapy will help me with the "chronic depression" and panic attacks.
     
    As for the seizures, even though my gynecologist said birth control and seizures are not related, there are so many women all over the internet that have experienced seizures after stopping birth control. There is research that progestin can suppress seizures while estrogen can make seizures worse. I was on progestin (the mini pill) for the whole 5 years that I was seizure free. I am not saying this is the cure but the fact that every month I have a seizure before or after my cycle and I was seizure free the whole time on birth control, makes me want to at least give it a try.
  12. CagedBird

    the worst seizure

    By CagedBird,

    So about 3 hours ago, I had the worst seizure ever. Im guessing it was grand mal. I was laying down watching a sermon on my laptop (trying to be encouraged) when suddenly my left arm started rising up, my head turned to the left, and my body turned to the right. My brother was the only one home but he was in his room with his door shut. I thought he would hear me especially when my laptop fell off my bed and hit the floor. All I could do was jerk uncontrollably to my left side. The next thing I remember is turning my tv on because I wanted the noise to stop. I forgot the noise (the sermon) was coming from my laptop. After remembering the noise was coming from my laptop, I turned the tv back off and closed up my laptop. I called my dad and he said he was on his way home. When he got here I was in tears telling him what happened and he was in tears listening.
    My arm and fingers are still sore but my headache is going away. My dad is going to take me to church and my friend is going to pick me up. Im kind of scared to go but Im even more scared to just lay here worrying about it. Im pretty sure this seizure was due to my menstrual cycle. I really wish my gynecologist would put me back on birth control-the only time in my life I was completely seizure free.
  13. CagedBird
    I am just going to be raw and honest right now. I honestly feel like dying. It may just be hormones but I really feel like Im living hell on earth. Sure I have food, clothes, and shelter. I also have money in the bank. I just got my income tax return and my settlement from my accident. But I have no peace. This whole week has just been torture. I don't like blogging when I am PMSing or extremely upset because I don't want to be debbie downer all the time but I just don't know what else to do right now.
     
    God
    After my last entry I was feeling okay. I thought maybe you guys are right, maybe it was just a nightmare. I hung out with my family over the weekend and went to church. Then this week I decided to give up Twitter for Lent. I check twitter all day everyday to take my mind off the anxiety and depression and boredom while everyone is at work all day. But I felt like I was wasting my time and wanted to spend more time getting close to God and reading my Bible and christian books. I feel like this was a mistake now. Every time I try to get closer to God and read my Bible more, I end up with more questions and researching the history of man-made religions like christianity.
     
    I am scared because I think God punished me with the seizures for losing my faith. It all started when I desired a closeness with God and all the rules from religion and unwelcomed feeling I got from church pushed me away from typical church but I still desired a closeness to God. The seizures started around the time I began looking at other monotheistic religions like Judaism and Islam. They continued when I discovered everything was made up by men and I decided to be "spiritual, but not religious." One day I came to the conclusion I needed God to heal me from the seizures so I re-joined church and trusted God to heal me. The seizures continued. But I thought maybe this is just the devil trying to make me give up on God altogether?
     
    When I moved back home I was convinced the seizures would go away. I gave up everything and decided to go home and get closer to God. After all what profit a man to gain the whole world if he lose his soul right? So I gave up the world and came home to find my soul. So why did the seizures continue? I usually dont write about spiritual thoughts because I have a separate spiritual journal and I dont like my personal spiritual warfare on the internet since so many look up to my testimony but theres a reason Im typing all of this...
    Yesterday I was looking at different christian denominations. all my life I was taught Baptist is the only way and anything else (even catholics) are going to hell. So as an adult now I like to just learn about what other people believe and the history of it. I spent hours reading blogs, forums, and looking at youtube about different religions, christian denominations, and atheism.
     
    This made me really scared. Looking at the stuff on atheism reminded me of when I questioned my faith after learning the origin of christianity, the bible, etc. I started to question again. Should I believe in God? Why hasnt he healed me? Why is he torturing me? If God loves me why does he allow me to have these devastating seizures? If I didnt believe in God would he make me have more seizures? My computer started dying and I was feeling really scared so I got up to go take my medicine and get ready for bed.
     
    another seizure
    I walked in the kitchen and I felt really scared. Instead of going to the refrigerator to get my water I had to sit down at the table because I thought I was going to fall. I felt even more weird where I was sitting because I was just staring at the floor so I walked over to where I usually sit when I eat. I was shaking. I wanted to put my head down but I thought I might fall out my chair if I moved. I felt like something had control of my brain, all I could do was look around, I was shaking. I started yelling for my dad but his door was shut and it was pouring raining so he could not hear me. I yelled his name at least 5 times as loud as I could. Finally I felt okay so I walked back to my room. I couldnt stop shaking for the rest of the night and I still have a headache this morning.
     
    My point
    These seizures are different. They are more like nightmares and I guess panic attacks. The reason I mentioned lent is because I really thought I could help myself by not wasting time on twitter all day but really I've just been laying in bed in this quiet room staring at the walls. I just dont feel like reading all day and with the anxiety that I was bound to have a seizure this week since I was pmsing, I've just needed a distraction. I mention my whole spill about God because sometimes it really does feel like I have demons or whatever and sometimes I really don't understand why God is punishing me. When I had seizures as a child they barely happened. When they did happen I would just get a really bad headache feel dizzy and nauseous then it would go away and I feel sleepy but okay. After the stroke, I only had about 3 seizures (2002-2005) and I usually felt them coming. I would always blank out and the scariest part was waking up not knowing what happened but usually the next day I felt back to normal. I never remembered shaking, jerking, headaches, immense fear, and anxiety.
     
    So I guess what Im saying is its harder to pray and believe God because these "seizures" are so bad. My dad said when I had the nightmare last week, I was tossing from side to side on my bed and moaning in pain. In the past I would have no recollection of this but I remember the horrible feeling of yelling for help in my head and nothing coming out of my mouth. I remember trying to turn to my side because something was pushing me to the opposite side. These are not just seizures (at least not the ones Im used to) and I dont understand why God started these attacks on me and keeps letting them happen even when I try to forget all the bad and put my trust in him, serving him.
     
    Neurologist appointment
    I went to UNC Chapel Hill yesterday where I had my brain surgeries. It was a waste. I didnt even see a real neurologist. I saw a nurse practitioner. She wants me to get a sleep deprived EEG. She told me not to drive. She told me I can take the Abilify (but Im not going to start it yet since they are going to take me off my medicines for the EEG in a few weeks). We talked about Vimpat but she agreed that is can make you dizzy so yeah I stick with my decision not to start that. She said we can talk about the VNS if we determine that what Im having is epileptic seizures. I explained everything to her and she said it sounds like epilepsy but it also could be psychogenic non epileptic seizures (duh) and VNS is pretty much a last option since the implant is permanent. Honestly I think what I had as a kid and what I had after the stroke were seizures. I dont think what I've experienced this year so far have been seizures. but what do I know?
     
    oh yeah
    Since I cant drive anymore, I couldnt go to the acupuncture center today. My dad didnt see the point in taking me (Nobody believes I will get any better) and now I have no ride to the singles conference at church this weekend so I guess God doesnt care about the non refundable registration fee and my desire to get closer to him even when hes making me suffer. I see my therapist Monday so my next blog will definitely not be this long. Just had so much on my mind.
  14. CagedBird
    My week got a little better. I cannot remember what I did on Tuesday and Wednesday right now but yesterday was pretty good. I woke up and went to the gym for yoga. We worked on hips and abs so it was a workout. I did the nustep machine for 20 minutes before yoga. Tried to get my most out of my last day. Before I left, I asked my instructor if he knew anyone that does acupuncture. Another lady heard me and told me about an acupuncturist who was trained in Korea I think. Im going to check him out. I know the effects are only temporary but I really dont want to go back to my botox doctor. After the gym I treated myself to lunch then did some shopping. It made me appreciate the perks of not having a full time job. Yesterday I started my blog grateful I'd gone a week without a seizure and just talking about my easy going day.
     
    Well the reason I cant remember what happened Tuesday or Wednesday is because it is 4am and an hour ago I woke up from a seizure. My dad and brother were in my room and I was crying. He told me what happened. He said he heard me making noises and came to my room but I asked him why was he in my room and told him I was okay. So he shut my door but he heard more noises like moaning so he came back in. I dont remember any of that. My brother said I was talking out my head not making any sense like I was still dreaming and I kept kicking my feet. Later I remembered having the seizure in my sleep laying on my left side feeling like someone was pushing me over and I was pushing back while my left side was tingly and jerking and I was trying to scream for help.
     
    My left arm and wrist is still very sore I guess from the muscle contractions but luckily I sleep next to the wall so instead of ending up on the floor I just woke up in the middle of the bed. My dad says he doesnt think I was having a seizure because "its like I was awake but sleep at the same time". I think I just was experiencing the psychosis the psychiatrist diagnosed me with that comes after the seizure by the time he walked in my room and I started talking to him.
     
    Basically I am just frustrated with these seizures. I have not had a seizure in my sleep since I started he klonapin in september. I know its effectiveness is only temporary so I hope it is not wearing off. I pray every day and night and take the time throughout the day to thank God for no seizures and for keeping me safe while driving and out in public. I know I cant let this one incident ruin my good day. It just seems like every time I catch a break and try to look on the positive side, something bad happens. Since the Abilify is an antipsychotic and I was diagnosed with epileptic psychosis, I am thinking about starting it but I am going to wait until I see the epilepsy doctor at UNC next week first.
  15. CagedBird
    Well this entry is not about seizures or depression. Its about the same thing I have been blogging about since 2007-my left side. It seems like everyone has got better except me and I am the one who's been like this for the longest. Yesterday I went to the hospital to see my mom. I went to the chapel and prayed. I gave thanks that Im not in the hospital anymore. I was in that very same hospital after my stroke. I am thankful and I have come a long way since then as far as walking. I mean when I was there I could hardly sit up on the side of the bed by myself. Yesterday I walked around the whole hospital by myself!
     
    BUT I felt kind of discouraged praying. I was there praying for my mom and I felt like why should I keep praying when I've already prayed and she's still sick? I told God its hard to pray for my future when things from my past have not changed. I know "faith is the substance of things hoped for and evidence of things unseen" I try to have faith but its hard when you pray for the same thing for years.
     
    I have been having a lot of pain on my left side. Under my arm it hurts, my shoulder hurts, and my wrist REALLY hurts. I try doing my exercises but they dont help anymore. I stretch my wrist just for it to flop down again. I wear my splint for hours and it keeps my fingers lose but it does not stretch my wrist. My e-stim machine doesnt even work for some reason. It turns on but it doesn't move my fingers anymore and the electrical shocks hurt my arm. I tried new electrodes, I tried moving the electrodes around, and tried turning the intensity down but no luck.
     
    I found out about serial casting but after calling around, nobody here does it. I don't want to go back to my old pain management doctor because he does not believe in me. My medicaid finally gets switched over to my county next month so I am going to go back to my primary doctor and ask to be referred to a different pain management doctor and different therapy center.
     
    For the month of March I have a lot of appointments
    epilepsy doctor,
    primary doctor,
    psychiatrist,
    therapist,
    surgery doctor for my next colonoscopy (my mom had colon cancer so I have to get a colonoscopy every 5 years, and even on my high fiber, lots of water, vegetarian diet Im still constipated everyday so I'm always paranoid)
     
    So I will probably be blogging a lot next month with all the appointments
  16. CagedBird

    Trying to be positive

    By CagedBird,

    Thanks everyone for your comments. They really give me a lot to think about.
    Wednesday on my way to the doctor, I had a panic attack while I was driving. My appointment was at 8:25 so I left early so i could dodge rush hour traffic but ended up getting stuck in rush hour and school traffic. I got to the office parking lot but I was in the wrong parking lot and it was a dead end. I figured I would just find a parking spot and just turn around but there were no empty spaces. I decided I would just have to back up the hill until I could find an empty space I could pull into and back up.
     
    So I put the car in reverse and I was steering it back up the hill as best I could while watching for anyone that might pull up behind me or start pulling out from the parking spots on the sides of me and thats when it happened. I started to feel strange. I was not shaking, I didnt feel nauseous, and my heart wasnt beating fast but I knew something was wrong. I put the car in park and just sat there. I started to talk to myself wondering if I should call someone or let someone in the parking lot know what was happening. Then it stopped. Once I calmed down, I finished backing up, found a parking spot, pulled in, backed out, drove to the right parking lot and went to my appointment.
     
    For the rest of the day I kept feeling flashes of dizziness. It continued yesterday and today. It feels like someone just took a picture of me with a flash on, like my brain just blinks off for a second. Its really annoying. Yesterday I went to cancel my gym membership. I felt so bad because I like exercising, doing yoga, and getting out the house. But until my SSDI gets reinstated Im trying to cut out unnecessary expenses and with the dizziness I have been too afraid to drive on days that I did want to go. (I have to take 2 of the busiest roads in the city to get there.)
     
    So after I left there, I went to the pharmacy because I thought my baclofen was ready. When I got there the pharmacist said she had Abilify for me. I told her I did not want it. She tried to convince me, it is ok, those side effects are really rare, and the company is just required by law to list everything in the commercial. I still didnt get it but I was feeling so low i was thinking about starting the samples.
     
    After I left the pharmacy I decided to just stay home because the dizziness was just too much. Then I got the call that my paranoid schizophrenic mom had tried to attack some of my family members and was at the mental hospital. I just could not stand to be alone in this room with so much on my mind so I went to a friend's house for Bible study. I am really glad I went. I vented to her about everything and I am thankful I made the 45 minute drive to her house in 5:30 traffic safely. I felt like I couldnt take any more stress but once I got home from her house I was just thankful to be home safe and that none of the dizziness turned into seizures.
     
    I started reading Joyce Meyer's Power Thoughts today and here are some notes I wrote so far
    Start telling myself "I realize that life is not perfect but with God's help, I am going to be stable even through the storms of life."
    Trials are temporary. It will get better.
    Learn not to respond to trials with anxiety and fear. Don't think excessively about problems.
    Keep things in perspective. Have power over my circumstances instead of letting them have power over me.
    Stop being so pessimistic. Forget Murphy's Law. Tell myself "If anything good will happen to anyone, it will happen to me!"
    Look at things as a whole. Stop dwelling on the negatives so much that I overlook the positives.
    Overcome bad thoughts with good thoughts. Speak the opposite of what Im feeling (i.g when Im feeling fearful, tell myself I am courageous.)
    Don't focus so much on trying not to think bad thoughts. Instead just think good thoughts
    Renew my mind every day with a 10-minute thought session about things bothering me, my anxieties, and fears

    I really like this book. I hope I can actually apply it so I can change my pessmistic depressing thought patterns.
     
    Oh yeah my gynecologist said that research shows that birth control pills metabolizes seizure medicine so I could have more seizures on birth control. I wasnt taking real birth control before. I was only taking a mini-pill due to my history of stroke but she told me it still probably wont help. I was feeling so hopeless when I left there but I am just going to try and be positive that my break through is coming
  17. 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
  18. CagedBird
    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.
  19. CagedBird

    I miss my old life

    By CagedBird,

    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
  20. CagedBird

    seizure triggers

    By CagedBird,

    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.
  21. CagedBird
    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
  22. CagedBird
    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.
  23. CagedBird
    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 :-)
  24. CagedBird

    good days

    By CagedBird,

    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.
  25. CagedBird

    going to the gym

    By CagedBird,

    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.