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i dont expect anyone to read all of this lol



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

  • 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

  • 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.


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I read it all. I'm sorry you ran ragged for nothing, but you did make some headway at least.

I really feel for you, I lived in seizure solution hell for a long, long time. after being on a laundry list of medications and the nightmares of their side effects. They finally resolved that my myoclonic seizures to be stroke induced epilepsy and put me on topiramate (Topamax). The drug was really intended for migraines but found to be effective for seizures too, so at the guinea pig stage I was, my doctor said could it hurt to try since the side effects are minimal. Pretty cool, I've been seizure free for 5 out of 9 years.

I had a mix of them all too at different times. The good news is, this is an easier fix than our hand and stuff like that,. The neurologist will figure it out, give you something to manage it once and for all, and it will be done.




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Katrina, sorry about your trip that you never got what you wanted, but you got something out of it. We just praying that they will be figureing it out, and then your mind can rest.



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Katrina - i read it all as well - not long at all compared to some of mine __LOL__ anyhow, good researching !! and information is power and you are on the right track !! usually it is the "patient" not the doc who ( in tougher situations like this) finds the solution, but having the "right " doc to help you is another key... you are assembling your keys and you will find a workable solution. maybe not a "cure" but a workable solution.. dans seizures, while they have not completely gone away - are much more controlled - making it a workable solution, but not a cure... and hey after having been to HE-- and back this we can live with... and true every seizure dan has had has been so different from each other , especially now - before he had the full blown grandmal - now they are much smaller and harder to identify.. can seem like a "spell" of illness, not feeling good, dizzy, glazed over , not with it, and staring.... each seizure is so different ( of course the "motherboard" aka. the brain is shorting out) so like when a computer shorts out it is never the same so neither are our brains... that would be way to simple... You are doing great, and dad is certainly doing the best he can trying to help out as well... you and dad are a team - and together you will figure this out..... !!!!

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Katrina: I too read the whole thing. Good job honey. Being your own advocate will certainly pay off. Good job on the research and hopefully this will now get you to the right discipline for some help and much needed relief. Rock on!

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