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Am I now Epilepsy over 1 event
Ok so it's a LONG story, Nov.Dec I had a bad toothache so I self treated it, then mid Dec I kept smelling odd smells like oil,gas so I looked it up and it was tied to infection, so I got on a video web dr portal and got antibiotics till I could get in to see my dentist, Jan came and they pulled toothout all good now. So In Feb I went to dr just to make sure all good, and they took my blood pressure and realized it was high, they sent me home with high bp meds take that evening at 6-7pm, and when i woke up the next day before 7am i took another, Norvsac, well I wasn't given instructions or didn't pay attention and that time frame was too close together, my bp at dr's office was 192/80 after dose that night it went up to 200/118, but i felt fine. The next morning I woke up it was 162/91 at 7am, then 157/109 at 8am, at 10:33 I was taking a break laying down as I was getting up I sat up felt weird, so I was able to test my wife I feel weird and when I stood up, I guess I either passed out or seized this is where the story begins.... My daughter who was here 12yrs heard the loudest bang every so by the time she came out it was about a minute or so she sees me laying on the floor tries to wake me up and can't, she immediately calls her mom on facetime (mom see's dad just passed out but unresponsive) so daughter calls 911 and states I think my dad is having a seziure. When I fell I hit chin first on this solid wooden table on one side of my face you could see scratch and bruise which i hit chin first smacked down that caused me to bite my tongue, on the same side, immediately turn swells up turn pitch black.. paramedics get here I wake up and freak out try to get them off me, as my wife steps into the picture and tells me to stop they are treating me, they hook up their wires and carry me out on stretcher im awake at this point confused as to what happened. In the ambulance they ask me question, I was able to answer them. At hospital they run CT Scan , EKG, everything looked good, but because my 12year old daughter said I had a seizure they put me on 500mg that night and my nightmare began.. Keppra took it on 2/19 the following day 500mg am, 500mg pm, 3 days later of being on 1000mg I kept having weird panic attacks, weird feelings, that came with a weird smell of sweetness or flower like smells, they kept adding more and more keppra to me, and sideeffects were getting more and more intense. on 3/4 eeg was done, being on 1500mg and still getting these sideeffects they detected frequency on 3/13 I wasn't able to take the mid dose because they added 3 doses and i would take them AM/AFTERNOON/PM - so I skipped the afternoon dose and i was fine. on 3/18 i saw a 2nd Neuro because the first one was like "ahhh just keep adding if he has more of these attacks" , like a whatever moment, so now 3/19 i'm taking 2000mg twice a day.
Now i was getting panick attacks racing heart beat and scared like I was about to die moments. I couldn't get an MRI done because I had fragements in my chest, but noone was wanting to accept that the bloodpressure medication was the cause of this whole nightmare. Finally after 27 days of this high dose I said enough is enough i can't handle this and asked to be tapper off by my Neuro, she was not on board, but because I wanted to be off she just said ok tapper 500 every 4 days, no schedule, no time frame of what dose to do, just every 4 days.. My research said that was aggressive so we started a slow tapper of 250mg either am/pm for 5days, and it was working we got down to 750mg, My Mistake WAS on day 2 of those dose I was excited it was working so I jumped ahead and did a taper cutting it 3days shorter than schedule and it caused a seizure during sleep. My wife woke me up 10-15mins after and I was freaked out as to why they were sitting up and just staring at me at 12am and not asleep. She told me what happened and I took the missing dose for the night. This happened 5/7 and it's 5/13 still on 750 for 2 weeks to stabilize my brain before returning to tapper now only doing 125mg for 7days, my question is why even after given them all the facts that I found Kaiser still wants me on antiseizure meds. My memory and feeling of that first time in Feb. was all real I was able to recall that memory until Keppra entered my bloodstream and has been taking away all my short term, on day 3 of Feb event I couldnt recall anyting from that time, this provoked seizure on 5/7 I still can recall events before that day, on that day, and days after. HELP how can I be tied to seizure meds at this point, They put me on Keppra so fast I didn't have time to review any side effects, How is it that a normal person no issues in life gets put on this drug and a druggie that has an addiction does not get antiseize meds. My life on this drug is the worst. I've gotten tested at Cerebral Health outside Kaiser the diagnosed me with Syncope, but because my EEG picked up activity even when proven with facts on MD portals that Keppra will cause activity in your EEG for people that do not need to be on noone will listen.
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Hi @rachelp76 ,
Ok stay calm. You first mentioned your daughter called 911 because she’s certain you had a seizure. What made her so certain? Did she witness something? She came in after she heard the bang, so she didn’t know what happened before the fall. From your description, it seemed the doctor prescribed you the medication based on what you were certain you had and that certainty, not based on the description on what actually happened.
Your high blood medication also surprisingly didn’t bring your blood pressure down. You were on it when you passed out?
Cheers,
Louis
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2 ReactionsYes she called 911 because she didn't know what else to do, as far as seizure she said that's all she knew, but she didn't see him shake was wans't stiff, she saw the blood in his mouth from the injury he took as he fell, now I was 210lbs at the time and I'm only 5'7". I also have sleep apena along with syncope which causes you to faint I was diagnosed with it after being on bp meds. My bp meds did bring it down too fast since they are design to be taken 24hours apart, i took took them within a 12hr window, yes I took bp meds that evening and when I woke up the next day before 7am.
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1 Reaction@rachelp76
First, your daughter, faced with a medical emergency she didn’t know how to handle, in my opinion did a good thing by calling 911. Seizures are scary to have yourself and to see in someone else. I say this as a person with epilepsy.
I think the standard definition of epilepsy includes having unprovoked seizures. Was your presumed first seizure caused by the medication overdose? If so, it was provoked and possibly does not fit the standard epilepsy narrative. Has this possibility been thoroughly investigated?
Finally, I mentioned that I am a person with epilepsy. I developed it after a brain tumor removal almost 10 years ago. I’ve taken Keppra for those years and have heard of some side effects but never have experienced anything personally. However if you’re one of the unlucky ones and need an AED, Keppra is only one of a number of anti epileptic drugs. I suggest that you should ask your neurologist about exploring other possible drugs, if needed.
Finally even if you have developed epilepsy, you are not
your epilepsy. Because it’s a brain thing, we get confused. If we break a leg we are not the broken leg, we are simply someone with a broken leg. Even if you have developed epilepsy, you are still you, just with a medical complication. Best wishes going forward.
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3 ReactionsHi,
You mentioned you had a bad toothache in Dec and started smelling things, which you believed to be an infection. You then consulted a web doctor, who then prescribed you antibiotics. . After that you got you tooth plucked. Was it at the dentist clinic they took your Bp and realized it to be high?
Cheers,
Louis
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1 Reactionno last i checked i've had several teeth pulled well maybe 2-3 back teeth they never checked my bp pressure. I went to my pc to make sure he can tell me that the infection was gone, pc office checked my bp pressure.
Hi @rachelp76
Welcome to our group at Connect!
I'm sorry to hear what you've been going through these past months.
I've had temporal lobe epilepsy since my teenage years, being only diagnosed at almost my fifties, when my seizures became more evident. Weird smells are very common in some types of epilepsy, indicating that the person is having an aura — what's now known as a focal aware seizure — which can serve as a warning sign before a larger seizure occurs. I'm on Keppra today and it's been the best AED (anti-epileptic drug) I've tried after having tried others that brought me many side effects and/or worsened my seizures. As @methel has well pointed out here, there are many more AEDs out there. Even two people with the same kind of epilepsy can have very different reactions to the same AED. As my current doctor says, every patient is unique.
Once I was diagnosed with epilepsy in 2019, I had some frustrating care with some neurologists I've seen, just like you have experienced yourself. But I didn't give up — I kept searching for a second, third, and even fourth opinion, until I found a doctor who would really care for me and my epilepsy.
Have you already received a diagnosis of the kind of epilepsy you have from your current neurologist? Has she tried to change Keppra for another AED?
If you're not feeling well cared for by your current doctor, look for other opinions. Don't give up!
Sending you much strength!
Chris
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1 ReactionHi @rachelp76 again
Sharing with you a link that details the symptoms of an aura.
- Focal Preserved Consciousness Seizures (Simple Partial Seizures)
Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-preserved-consciousness-seizures
Besides weird smells, do you remember having any other symptoms during your episodes that were diagnosed as seizures?
Chris
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1 Reaction@rachelp76
Ah, sorry for the misunderstanding. I guess many were piecing the events together. I surprised you have no known drug allergy. Did your daughter at that time know what a seizure look like? It seemed she only saw you on the floor unconscious and immediately assumed you had a seizure. It’s great she acted quick to call 911.
Cheers,
Louis
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1 Reaction@santosha
as my dose increased up to 2000mg i was getting sensation of scared moments that would over come me, with racing heart, I was able to shake those off but they were gettin strong, just feeling like scared not like a boo scared like something major is about to happen type of scared. AS i started my taper, those weird feelings vanished, now all i'm left with is jammed emotions that make me wanna cry and it's a lump feeling in my throat so i try and cough it away but they are just sitting in my throat for no reason like i want to cry.
thank you for that, i just can't imagine that after taking 2 blood pressure meds within a 12 hour window as a mistake i am now considered epilipsey and on anti seizure meds, and every little symptom i would feel they kept increasing, noone would listen that what if these meds are messing me up because im not epilisey, it doesn't make sense, how they shoved me on keppra which isn't an easy drug to wean off of. How does a drug attic get rescure meds if he seizes and doesn't get put on anti seizure meds, but me that perhaps fainted or have syncope they shove anti seizure meds at me. I'm one to research and i read the studies they perform on 2 groups , 1 epilipsey and 1 normal, the normal group ended up developing sides effects like the ones i have, I bring all those to Neuro but she seems kind and is understanding i think , i just dont know if they mis diagnosed me and now are afraid of law suit, i just want off these meds.