Just got my member card stamped-pretty sure I want out

[melissajg]

Hello everyone, I’m new, scared, kind of freaking out, don’t feel like I have anywhere to turn. My seizure story- 32 year old female, on vacation with my family to Disney. I have zero medical history of anything related to seizures, I am diabetic. We paid for parking, everything was fine, I was taking pictures of Disney sign, talking on Bluetooth with my sister who was driving behind us. In my memory we paid for parking and then 20 seconds later or so I started having the seizure but my family tells me it was more like 2 minutes but they thought I was just being quiet. The last thing I remember is feeling like someone had attached fishing line to the right upper side of my face and started tugging. I think I remember thinking to myself "something is wrong" and I was trying to say that out loud to my husband but I guess it just came out as a horrible noise and then I started convulsing. It lasted around 2 or 3 minutes so they say and then I just went still. I was very shallowing breathing. My family of course was freaking out, they got a parking attendant to radio for 911. There happened to be a Dr behind us in line and she came to the car. She reclined my seat and tipped my head and I started breathing better. She said I had a weak pulse. I woke up and I remember her face, she asked me the year and I could only come up with "2000....." and she asked me the president and I said "Trump" that's my last memory of the next few hours. The ambulance came and they say I walked to the stretcher with the EMTs help. Once they got me in I had another seizure and went into respiratory failure. It lasted 3 minutes. They got me to the ER and when transferring off the stretcher I had a third seizure. They gave me a medicine to stop the seizure. I have sleep apnea, they believe that medicine reacted with my sleep apnea and I stopped breathing. They had to intubate me. I fought them, everytime my twilighting came up some I tried to hit people and pull out all my tubes and wires. They had to restrain me. I woke up 7 hours later in the ICU. I was aware then but its been a week now and Im losing those memories. They did a cat scan which was clear, brain MRI without contrast that was clear and a EEG that was clear. They put me on Keppra and sent me home 2 days later and told me to find a neurologist. We drove home from Florida to Pennsylvania the day after I got out of the hospital. I hardly remember anything of the rest of that week. I find text conversations on my phone the next day with friends that I have no memory of having. I was in a lot of muscle pain, my back felt worse than anything I have ever experienced. I felt like I pulled evey muscle in my body. I also had zero appetite. We got home Thursday, by Friday morning I felt like there was an elephant on my chest, they took me back to the ER and they found double pneumonia. I was admitted back into the hospital to treat the pneumonia. They think I aspirated during a seizure and caused the pneumonia or it was caused from being on the ventilator. I was also very dehydrated which caused my kidney function to be elevated. They wanted to repeat the MRI with contrast but couldn't with my kidney levels. I got a neurologist and he basically told me we'll probably never know why. They repeated MRI without contrast and it was normal again. I feel very dazed. I can't focus. I can't remember things I'm told. I'm really irritated by eveything, I was much ruder to the nurses during my second hospital stay than I would normally act. I'm scared. My memory is very important to me and I feel like I'm being half erased every night. If all my tests come back clear, how will I know if this will ever happen again. Now I can't drive for 6 months according to State law but how can I ever feel safe driving again. I'm scared to even be alone really, I stopped breathing, had I been alone would I of woken up after them ?


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[Porkette]

Hi melissajg,

Welcome to the forum! I'm sorry to hear that you had a seizure while on vacation. I've had seizures for 46 yrs. one thing that could be triggering the seizures is the sleep apnea. I had to have a sleep study test done and my Dr. found I was having seizures in my sleep. Also if there's any problem with the heart that can trigger seizures, but the 2 main things that trigger seizures is stress and lack of sleep. I have heard rumor that sometimes a diabetic can have seizures but I don't know how true that is. You should ask your Dr. to do a wada test on you this will pinpoint the cause of your seizures. Sometimes a person may have seizures but nothing will show on the tests and that's because the damage is to deep in the brain. Hormones changing can sometimes play a big role in having seizures especially in women. Get a calendar and start keeping track of any seizures write down what time they happen and the type of seizure it is, by doing this the Dr. may see a pattern in your seizures. I always have them the 3rd week of the month.
I was on Keppra for about 1 month and I had to go off the drug because the drug gave me such a rude attitude I couldn't stand it. Now I take vimpat and that has reduced my seizures a lot along with taking 2 Tablespoons of apple cider vinegar with mother in it. I started that to lose weight but since then my seizures have been cut in half.
Also take note if you are using a cell phone or you are around others using a cell phone I noticed I was having more seizures when people were using cell phones and I found out I was cell phone sensitive which means the frequency of the cell phone can trigger seizures for me. I wish you the best of luck and May God Bless You!

Sue

 

[melissajg]

Thanks Sue for the reply. This is alot of information to take in. I just hope I get some answers, I really hate when I can't understand things and have details. It looks like I'll have to get used to not understanding why everything happens.


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[gymrat827]

cheer up, i had a seizure on my bachelor party. It happens

Keppra made me nuts too. I have a terrible memory, from seizures, meds, time in the ER/ICU/Neurology floor, etc.

Ill tell you if you are ever in the hospital, do not allow the docs to put you on Ativan........That will wipe out 5-8 years of your memory.

You will drive again once you are able and 6 months seizure free. Ive had two seizures while driving too.

One i hit / tapped a woman in front of me doing 2mph...... She let me just pay her to have a body shop touch up her car.

the other i started to feel odd and pulled over.

Just think of what you are going to do long term, how you will fight/handle this & what other health issues may contribute to your seizures.

GL

 

[Porkette]

Hi melissajg,

Take my word it took me a long time to understand epilepsy and why I would blank out and not remember things. I did learn that if I ate to many carbs and starch foods that would trigger seizures for me. Basically when a person is having a seizure what is happening is there's to much electrical activity in the brain which fires up the neurons and in turn causes the seizure. When I was a kid I would be very confused after I came out of the seizure and want to sleep for 2 hrs. if not longer and I didn't remember anything after the seizure was over. Since the surgery I don't feel that tired and I don't get headaches anymore and the seizures are a lot less severe but I still blank out and don't remember anything for a few seconds. Start taking note of the weather and if there's a low pressure sometimes the weather will trigger a seizure for some people because the air is more heavy and in turn that can effect a persons hormones and then the seizure happens. Another thing that can sometimes cause a seizure is to much of a electromagnetic field (ex. when the moon comes out some times a person will have a seizure but this is rare) A lot of it has to do with lack of sleep and stress. Start eating a high fat diet called the ketogenic diet it's for people with epilepsy and it helps reduce seizures. You can speak to a local dietician or your family Dr. about it. Wishing you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hey Melissa, welcome to CWE! (We're a pretty great group, though yeah, no-one wants to be a member).

Everything you've experienced is pretty normal for a first-time tonic-clonic seizure: You feel crappy, you can't eat, your back muscles feel like one giant bruise, the medication they give you makes you feel lousy, and everything seems scary and confusing.

What can help with all of this is information. Ask a lot of questions! Coming here is a good start.

1. It's important to see a neurologist (ideally and epileptologist) to get a better sense of what's going on, and what your options are for medications and treatment. Keppra is known to make people angry and moody. It's often given as a first line drug when someone presents with new seizures, because you can get up to working dose quickly. But there are many other epilepsy meds out there, and the neuro can talk about them with you if the Keppra continues to be problematic.

2. It's possible that your seizure was a one-off (even though you had multiple seizures, this would be considered a single event since they are new-onset). It can happen -- maybe stressors related to your diabetes or apnea played a role. Or perhaps dehydration and fatigue were factors. But it's tough to know for sure, which is why it's important to stay off the road for the required time period, and keep taking anti-seizure meds. If you remain seizure-free for 6 months to a year, your neuro can discuss options for tapering off meds, if that's your choice. Hopefully you'll never have another seizure!

3. The majority of people with epilepsy never discover the primary cause (that is to say, what made you more vulnerable to having a seizure). Which sucks. But then you move on. It can help to look at secondary causes (the triggers that might have brought on the specific seizures on that day at Disney). For instance: Epilepsy has a higher co-occurrence with sleep apnea. You might want to ask your epileptologist about scheduling an overnight EEG/sleep study. (Even though you already had a negative EEG, a longer EEG or a sleep-deprived one can be more likely to produce results).

4. Be gentle with yourself. Not only can seizures be physically debilitating, but with any new health issue it can be emotionally tough too.

Best,
Nakamova

 

[resaebiunne]

Uhh, Nakamova, she didn't have ONE seizure. She had several. And pneumonia. And kepprage.

Welcome to CWE melissajg!

You did indeed have a wake up call alright. I fractured and dislocated my right shoulder due to a fall from a tonic clonic and wound up having surgery. I was unconcious and alone in my apartment that I had just moved into for nearly 1.5 days before I could call out for help. Others have told me I'm lucky to be alive.

You're starting out on a long path of finding the right doctor, medications, and all the other joys that come with this mess. Ugh.

 

[Nakamova]

Uhh, Nakamova, she didn't have ONE seizure. She had several.

Yup, I'm aware, and certainly not minimizing everything Melissa went through. However, for new onset seizures, ALL the seizures you have in that first chunk are considered one "event", not the two events that are the basis for an epilepsy diagnosis.

My first seizures came in two stages in the first 24 hours -- and were considered a single event. My epilepsy diagnosis didn't become definitive until 1) an EEG that showed classic interictal brainwaves patterns for epilepsy, and 2) a second seizure 6 months later.

 

[melissajg]

Day by day things are falling into manageable areas more. Its good to be out of the hospital. I still feel like general crap but I think that has a lot to do with the pneumonia and kidney function. I got some massages and that has helped my sore back. Food still doesn't taste good. I have had zero appetite but I do force myself to eat some but it just seems like nothing tastes actually good. It doesn't taste bad it just doesn't taste good.

I guess what upsets me the most is part of my personality, I've always liked all the details and understanding everything. I can't understand this. I can't measure and time it. Maybe it was just a one occurance and that would be great but I won't know that until it happens again and we know it wasn't a one occurance. I should be back at work next week. Not sure how that will go since most days I still feel like Im walking around in a full fog but I have to go back.

Sorry to my customers that I speak to on the phone because I'm guessing there be a lot of empty space where I can't find my words. Did anyone deal with that before seizures? I had told my doctor months ago I was having problems getting my words out sometimes. She called it aphasia, but she thought it was related to my sleep apnea and the amount of sleep I got the night before. Id say Ive been dealing with it for a year. At work I've been known to just hang up on some people that I called because even though I know the general message in my head that I need to say I can't find the specific words to get started.


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[Nakamova]

Sorry to my customers that I speak to on the phone because I'm guessing there be a lot of empty space where I can't find my words. Did anyone deal with that before seizures? I had told my doctor months ago I was having problems getting my words out sometimes. She called it aphasia, but she thought it was related to my sleep apnea and the amount of sleep I got the night before.

The speech problems could definitely be a kind of partial seizure. And it could also be related to your sleep apnea (since there's a connection between apnea and seizures). Another reason to ask about getting an overnight sleep study done.

There was a single instance of something like that (that I can remember) that occurred a few years before my tonic-clonic seizures hit. I was speaking to someone and then lost a few milliseconds of the conversation, as if the on-off switch in my brain had been flipped. I know now that it's a kind of absence seizure. Since the advent of my big tonic-clonic seizures, it's a happened a few more times, and it's been an indication that my med dose is too low.

 

[gymrat827]

Day by day things are falling into manageable areas more. Its good to be out of the hospital. I still feel like general crap but I think that has a lot to do with the pneumonia and kidney function. I got some massages and that has helped my sore back. Food still doesn't taste good. I have had zero appetite but I do force myself to eat some but it just seems like nothing tastes actually good. It doesn't taste bad it just doesn't taste good.

I guess what upsets me the most is part of my personality, I've always liked all the details and understanding everything. I can't understand this. I can't measure and time it. Maybe it was just a one occurance and that would be great but I won't know that until it happens again and we know it wasn't a one occurance. I should be back at work next week. Not sure how that will go since most days I still feel like Im walking around in a full fog but I have to go back.

Sorry to my customers that I speak to on the phone because I'm guessing there be a lot of empty space where I can't find my words. Did anyone deal with that before seizures? I had told my doctor months ago I was having problems getting my words out sometimes. She called it aphasia, but she thought it was related to my sleep apnea and the amount of sleep I got the night before. Id say Ive been dealing with it for a year. At work I've been known to just hang up on some people that I called because even though I know the general message in my head that I need to say I can't find the specific words to get started.


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my seizures come from my insomnia & stress. I am in sales as well, your searching for words will get better each day.

If you continue to have seizures, this speech issue will get better....much better.

 

[melissajg]

If you continue to have seizures, this speech issue will get better....much better.[/QUOTE]


What do you mean it will get better?




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[gymrat827]

your dealing with it for your first time.

Once i got accustom to going to the ER, being in there 18hrs and leaving.....Things got better for me.

It was no longer my first rodeo, i knew what to expect and what would happen. This is more what i mean.

 

[Sabbo]

Hello & welcome to the forum. I've had simple partial seizures since childhood, which weren't diagnosed until I was 14--after I suddenly had 2 or 3 tonic clonics. Now, I get complex partials as well. Those began about 18 years ago. I've taken every AED out there. I'm allergic to many & I still get breakthroughs despite being on high doses of Topamax (400mg/day) & Zonisamide (300mg/day).

 

[gymrat827]

of Topamax (400mg/day) & Zonisamide (300mg/day).

i hated those two drugs so much.

One makes you not eat and all and the other knocks you out.

Not an ideal combo, but i suppose the ones im on arent the best side effect wise either.

 

[Sabbo]

I was taking Vimpat (400mg/day) with the Topamax until last year. I had to switch because our insurance changed, & I'd have to pay over $1800/month out of pocket to remain on it.

 

[melissajg]

Anybody on Keppra and feel like they had no appetite? I just could care less to eat or drink. Which doesn't bode well for getting over dehydration and I'm diabetic so I can't just not eat.


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[valeriedl]

I had my first seizure about 15 years ago when I was 27. Luckily (if that's the right way to word it) they knew I had epilepsy right from the start. They have no idea what caused it though. They couldn't stop me from seizing so I had to be put in a coma for almost a month. When I came out of it I'd lost nearly 10 years of memory. There were still some things up there but not much. I had no clue who the guy I'd been dating for 3 years was. I had tattoos that I didn't know I had. I'd forget things that happened just a few minutes ago and my dad told me that he just kept giving me my 'Get well cards' to read over and over again because it was like they were all new to me.

At first I'd forget things that just happened days to hours before the seizure. Now it's things that might have happened a few months to a few years ago. We'll hear a band on the radio and I'll ask my husband if we'd ever seen them and he'll tell me that we did - twice sometimes. One of the things that drove my husband crazy was that I couldn't remember President Reagan had died, and we'd watched his funeral on tv. Ten years after he died a lot of things came on tv about him and every time they did I'd ask him if Reagan was dead. He thought I was joking at first but then he realized I was serious, it went on for about 2 years.

I have a ton of trouble with words. I know what the word is, I can describe what the word is but the actual word just won't come out. It's like playing a guessing game a lot of the time. I had been having trouble with my freezer once so I called the company to see if I could get things figured out. When I was talking to the man on the phone I just couldn't think of the word 'freezer'. I told him it was the "really cold" part of the refrigerator. I'd tripped over the cat while I was on the phone and said "oops". He asked me if I was ok. I could not think of the word 'cat' so I told him it was 'the little furry thing with a tail'.

I'd been on one med, can't remember what it was (imagine that) that I just wound't eat. My mom had to force me to eat things. I called the neuro to let him know and he took me off of it. After he did I started eating normal again. All people act differently to different meds so it's something you might want to talk to your dr about.

When I'm home alone my husband will text me every so often. I text him when it's med time to let him know I've took it. If I don't text him or reply to a text he'll call, because I might not have heard the phone beep, and if I don't answer the phone he'll call someone else to check on me to make sure I'm ok.

I live in Pennsylvania too, the Pittsburgh area, and if you don't mind me asking who is your dr is? You can PM me if you want.

 

[Sabbo]

My simple partials never caused any real problems. I started having a lot of these problems after I began having complex partial seizures about 18 years ago. Apparently, it was the meds. Topamax, which I take 400mg/daily, causes short term memory problems & word loss issues. Everyone has dubbed it "Dopamax"