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Old 02-14-2019, 07:22 AM
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Trying to cope slight vent


Hello, community seems like my seizures have now switch still not sure if I'm having seizures or not I've been convulsive seizure free for 8 months now but now it seems like something else has raised its head. History 3 MIRs 1 Cat Scan 4 EEGs 2 sleep studies too many blood test to count Heart and lung test all normal.

Now I go into this mode of extream fear and the smell you get when you're scared I smell that then I can't think straight and when someone is asking me a question I say outrages things or say things that are weird or I just can't remember my family name I can still do things like type my password into my phone but I can't think its just foggy this last only a few seconds or mins most are saying I might be having simple partial seizures. This is so stressful because It tends to only happen when I think about my past or I'm with stressful people which makes me think I might be doing all this myself (Nonepileptic Seizures).

Then I tend to think maybe its the medication they started me on Dilantin then moved me to 250mg of Keppra then Carbamazepine I had 2 seizures they up the Keppra to 1000mg then 2500mg then 3000mg they pumped me with everything all it did was made me still was have seizures. 2016 I had 17 in 2017 I had 5 in 2018 3 I couldn't take the side effects of the Keppra it was making me have the strength and rage of the hulk and anxiety waking up can't remember my name. I lowered it to 500mg after my last seizure and trouble the medication got me into last year. That decision has me now seizure convulsion free but having these spells what you call them.

Sometimes I really think its the Keppra doing this, my first time in the hospital that leads up to this wasn't because of seizure it was because of a blackout they started me on all this seizure medication as a precaution which always has it in the back of my head that maybe this seizure medication is what causing all this stuff in the first place. I was happy because I've been convulsive free but now I have this to worry about when these episodes happening its like I'm losing my mind I don't feel like I'm in my body but I can still see it feel like I'm in 3rd person

I'm exhausted when I told the doctor about this he didn't really listen he told me my MRI looks perfect my brain is normal my EEG was normal all of my blood tests have been extremely normal if you look at the number and the number they gage it by its usually that number which makes all this even weirder. Then he said I need to up my dosage back up and gave me Zoloft and rushed out the office to another patient I can't fault him too much the neurology clinic here kinda busy. I didn't take the Zoloft. I'm just embarrassed because I did these episodes in front of company ive had twice this year.

I talked to my primary care doctor shes trying to get me to another neurology but I talked to a clinic close they said they rarely take my insurance so its really up the doctor in the meantime Im just on a wait and deal with this. Sorry if this a long rant I live alone cant drive dont really have many people to talk to about this and when I do they never understand

Last edited by Hereforq; 02-14-2019 at 07:25 AM.
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Old 02-14-2019, 05:15 PM
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Quote :
Now I go into this mode of extreme fear and the smell you get when you're scared I smell that then I can't think straight and when someone is asking me a question I say outrages things or say things that are weird or I just can't remember my family name I can still do things like type my password into my phone but I can't think its just foggy this last only a few seconds or mins
These sound like classic partial seizures, or possible migraines. The fact that you can't control what you say points to a neurological cause, and it's a shame that you can't get your neurologist to pay closer attention.

Quote :
Then he said I need to up my dosage back up and gave me Zoloft and rushed out the office to another patient I can't fault him too much the neurology clinic here kinda busy. I didn't take the Zoloft.
You were right not to take the Zoloft, at least not without some concern -- it can be a seizure trigger for some people with epilepsy! Your doc should have explained this and cautioned you, or prescribed something different altogether.
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Old 02-14-2019, 06:22 PM
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Originally Posted by Nakamova View Post:
These sound like classic partial seizures or possible migraines. The fact that you can't control what you say points to a neurological cause, and it's a shame that you can't get your neurologist to pay closer attention.

You were right not to take the Zoloft, at least not without some concern -- it can be a seizure trigger for some people with epilepsy! Your doc should have explained this and cautioned you, or prescribed something different altogether.
If I'm having partial seizures guess I must just face it, huh I just don't get it through my seizure have went through so much. First I was convulsing everywhere then I see this poster on the wall where they say if you laugh during a seizure its Gelastic and Dacrystic Seizures then suddenly I was laughing before all of my seizures head turning left and flapping everywhere. Then now I've moved to these type of seizure where I go into this fear 3rd person type of stuff and babbling I'm so frustrated with this
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Old 02-14-2019, 06:41 PM
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Hi Hereforg,

From what I have studied and what you have described you may be having simple partial seizures which are leading into Gelastic and Dacrystic seizures. I have the same problem with simple partial seizures leading into either absence or complex partial seizures for me. Just like you I was on Keppra and the drug increased my seizures like crazy so my neurologist got me off the drug and put me on vimpat. I also use cbd oil (medical marijuana) and that has helped me a lot.
Years ago my neurologist told me I had a scar on the right temporal lobe that was triggering seizures then I went in for surgery to reduce my seizures and that's when the Dr. found damage so deep in my brain that not a single test showed anything and this could be what's going on with you. Ask your Dr. to do a spect scan, pet scan and a wada test on you if you haven't had any of these tests done these tests show a lot more detail. I wish you the best of luck and May God Bless You!

Sue

Last edited by Porkette; 02-15-2019 at 06:17 PM.
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