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Neurologist and OT visit


CagedBird

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I was not trying to be rude. I just felt like my last post was about me expressing myself, my name, how I feel. Some of the comments just were not what I was expecting. I know we are all in this together and I appreciate the support I get from you guys since I dont get it anywhere else. The pep talks just aren't needed sometimes. When my brain chemistry is going wacky and I cant pull myself out of the dumps, I blog/post here because its an outlet for me to express myself when no one else (family) understands but sometimes you guys say the same things I would hear from my family or co-workers people who are on the outside looking in and when my brain chemistry is being wacky it makes it hard for me to really receive that advice as beneficial and sometimes makes me feel worse.

 

Anyway all is well. Just wanted to clear that up. I appreciate you all and thank you for your support.

 

Seizures

I seen the neurologist here on Wednesday. It was perfect because he works in the epilepsy center but he also does sleep medicine. After explaining to the nurse, the resident in training, and the neurologist my whole medical history since I remember the seizures starting in 2nd grade, no one knew what is wrong with me. Its very hard to explain to someone how your brain feels especially when you're sleep half the time you experience it. The neurologist wants to do an EEG. I have to come to the hospital for about 3 days so they can monitor my brain waves while I sleep 2 nights. They are going to cut back my keppra to trigger the seizure (oh joy). I did get a couple questions answered.

 

  • Diet does not really affect my body's response to keppra. Some seizure medicines are affected by diet but not keppra. So that explains why nothing happened after I ate a nothing for dinner but had a seizure the morning following the night I went out to the buffet for dinner.
  • The dizziness sounds like auras to the neurologist. I heard about these before but have to do more research.
  • If I do have any side effects from the keppra it will occur a few hours after taking my medicine (not randomly throughout the day).
  • Keppra can worsen depression. Lamictal is a seizure medicine that helps mood. HOWEVER I am pretty sure lamictal is the the seizure medicine my neuro from Fayetteville switched me to when my wbc count was low. Remember the day I got dizzy in the car riding with my mom and couldnt stop crying because I felt like I was in an underwater dream the whole rest of the day? yeah no thanks. I'd rather be depressed than deal with the affects of switching to that medicine again.
  • My e-stim machine is not causing the seizures so Im free to go back to doing it twice a day

 

 

OT

After I left the epilepsy/sleep center I went to OT. I explained to my new OT the lack of support and pessimism I have gotten from my OT pain management doc and insurance co back home. Hopefully she understands the umportance of keeping me motivated and not putting me down. I got a bit of bad news. She told me some of the contractions in my arm are permanent. The tendons have shortened permanently so my left side will never be like my right side again BUT Im young so I have time to make it better instead of letting it get worse.

 

I believe moving and getting a fresh start has definitely helped. I no longer have to get agonizing botox just for insurance to approve 20 sessions of OT which consisted of me laying on the mat stretching for 45 mins while my OT works with 5 other patients and only pays me attention when shes reminding me I wont get better than this while stretching me to tears and making my tone worse. Here people actually have hope for me and I have so many alternatives (acupunctture, yoga, etc) that I didnt have in my hometown.

 

My goal for therapy is just to normalize my arm and wrist by decreasing the tone. My fingers are so lose and I have e-stim for that. I feel like decreasing the tone in my wrist and arm is not only a easier goal than say "oh i wanna move my hand" but it will also be more visible wen I see how much my elbow has gotten straight and slowly straighten my wrist back.

I am going to be doing therapy twice a week at 7am before work. I feel hopeful I can achieve my goal of straightening my elbow more even if I have to get an air splint and wear it at home while Im laying down. Therapy with her felt so good. She felt like a true friend. The slow stretches felt really good. Instead of feeling like my muscles were being stretched out, it felt like they'd been clenched for so long and could finally relax. I look forward to working with her.

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Katrina, I have never experienced you as rude. Truth is, sometimes we just feel awful (whether we are caregivers or survivors) and this forum should be a place where we can let it all hang out. Where else? I'm so glad you continue to stick with us all and keep reminding us of how you feel. Honestly, I can't imagine what it must have been like for you to go through adolescence and early adulthood with stroke recovery at the forefront. Very few survivors have had that experience.

 

I am really happy you are getting an EEG--the 3 day kind. I think this is what you've been needing to get some answers as to what is going on with those seizure-type episodes. I sure hope the test reveals some answers for you. This has been going on long enough and has a serious impact on your wellbeing. I'm so glad you're finding some medical folks who seem to be in your corner. You need that.

 

Keppra seems to be one of those meds that does wonders for some and creates havoc in others. My husband has been on Keppra since his seizures began and it has been good for him. No Keppra rage, no increased depression, and his seizures have been under control for some time now.

 

Take care, Katrina. You have a lot to be proud of. ~~Donna

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Katrina :

 

if my comments to your post ever hurt you than I am really sorry that's never my intention, I know when you are depressed one forgets to look at the good things in their life & that's what I try to do to remind you of your accomplishments. and just wanted to let you know how proud I am of you. I know no one can understand others journey since we have not walked minute in your shoe, but I know this for sure that in life every one has some struggles in their life & God is providing us strength & resources to overcome those. happiness is a choice & state of mind is my form belief.

 

Asha

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Katrina, I wish you nothing but the best as do most of the people that post comments on your blog. I know as a caregiver for so many years that most advice is not helpful but sometimes something that I read as unhelpful does help some time down the track. I hope you find that when you reread your older blogs.

 

The seizures seem to be a puzzle even to those who are supposedly specialists in the field. I know with Ray's seizures I could manage to get him conscious where the nurses could not. I know after a seizure all he wanted to do was sleep. I know that seizures don't seem to have a pattern so why he had a seizure on one day and not on another never seemed to have a logical answer. I know some seizure medicationss give you side effects that are really intrusive and make your life a misery.

 

What I DON'T know is how it feels to have a seizure so I wouldn't presume to give you any advice except for general advice, eat well, get enough sleep, exercise as much as you are able to. Apart from that remember we are your friends and will be your supporters for as long as you need us to be. (((hugs))).

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Ditto - with everything else said--- my only maybe helpful comment is in reference to lamictal.. dan had keppra rage -- ( depression ) and lamictal was his new drug ... but if your old doc didnt script and titrate you correctly it can be a very dangerous drug.. the climb up to optimal doseage is SLOW with that drug... it took Dan almost a year to get to his optimal dosage ..... not advice just thought , As Sue said- never know in the future what might be helpful.. And agreed about seizures when i spoke with dans nuerologist cause i have seen so many different seizures -- all grandmal , but lots of different presentations... and she ( the neurologist) said every seizure can be different... and that has certainly been my experience with dans...

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