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Hi all,

I have no diagnosis of seizures, but have an appointment with my GP on the 27th. I'm a relatively healthy 26 year old female (white if that has anything to do with anything not sure?).

I've had two 'episodes' that we know of that seem like seizures. The first happened at the mid-end of Jan. I don't remember it much, but what I do remember is mostly from people who have seen it. The Jan one happened as such:

Laying in bed, started with my one hand jerking. Eventually my whole body began to convulse. I would 'calm down' just to start another attack. I wasn't responsive but kept managing out 'help me'. The EMT's were convinced it was because of medications or drugs (my roommate had smoked up some pot and smelt of it terribly. Ugh).

We went to the hospital where they brushed it off as dehydration. No bloodwork, no EEG, nothing. Just drink water and get out of the ER.

The second happened two days ago. I remember more of it, but still foggy. Once again the rest is covered by someone who saw and told me.

I went upstairs because I had to use the washroom. After finishing my task I went into the hall where I felt weak, so weak I ended up on the floor. I felt so nauseous that I managed to drag myself to the toilet but couldn't barf. Then black. I remember hearing my kitten meow a lot and I whispered "Navi get help". When I came back my fiancee was over me worried because I was on the floor. She said I didn't convulse, but I wasn't responsive, very VERY limp. My body just wouldn't cooperate. She got me to the bed, and I was tired, but it hurt over my left eyebrow and into my temple. We went to the ER they ran heart tests, and did some blood work and more urine work. I was having a hard time breathing, my chest was heavy and it was painful, so they gave me some inhalers. The first dr was going to send me to a neurologist because I couldn't open my eyes and they wouldn't focus or follow him.

The second doctor in the morning (held over night for observation) felt I didn't need it because I was awake and alert, although very VERY exhausted.

I went home.

Sometime in the evening I started to feel those symptoms again, and told my fiancee to keep talking to me, to keep me from losing it. My head hurt and I was feeling sick again. She recorded my symptoms. I was dizzy, disorientated, dry mouth with lots of saliva, thirsty, and generally out of it. I came back quickly enough.

This morning I'm shakey but more of myself. We are going to tell the GP about this. But what does it sound like to you? My friend who has Epilepsy, said it sounded like some sort of seizure, but not the types he gets. Does it to you? I'm scared to have another.

Both times I kept control of my bladder, and my bowels. Because I didn't bite my tongue somehow when I convulsed the EMTs in the first time figured I was faking, or doing it on purpose. Do all convulsions mean you have to bite your tongue?! Arg. So confused.

Thanks for listening.

Lessa
 
Welcome to CWE, Lessa. I'm sorry to hear about your situation.

No, not all seizures involve biting your tongue. I've had E for 49 years and never bit my tongue, lost my bladder or bowels.

Something is definitely not right, but going to your GP and, hopefully, then to a specialist for closer testing is definitely in order!

There are great people on this board each with different experiences during their seizures, so I will let them tell you - or you can read older posts to see what their situations are.
 
Hi Lessa, welcome to CWE!

Some of the things you describe (jerking, nausea, fainting) can be seizure-related, but it's tough to say for sure if that's what's going on. But we are not doctors here, so it's very important that you share all of your symptoms with your GP, and push to be referred to a neurologist or other specialist (such as cardiologist) to help figure out what's going on.

There are many kinds of seizures, including ones where there is zero loss of consciousness. Even with the most familiar kind (called grand mal or tonic-clonic), a person doesn't always bite their tongue or become incontinent. It can happen, but if it doesn't it's not a sign that someone is "faking". The EMTs who saw you seem to have limited knowledge of seizure disorders.

You might want to check out these links:
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
http://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures
to learn about different seizure types and symptoms.

Before you see your GP, it's a good idea to make detailed notes about any unusual symptoms in your recent and more distant health history. The GP may ask about your family's medical history as well. Also try and note down any particular details about the moments, days, and weeks preceding your episodes. Were you under any particular stress? Unusually fatigued? Unusual diet? etc.

Best,
Nakamova
 
Thank you both for your suggestions. I will add if there was any unusual changes with diet, etc.

I know none of you are doctors, I was merely wondering if someone had similar symptoms, as I feel alone. My fiancee is worried and even has someone checking up on me and I honestly feel like my little world of independence is crashing down. I know she's doing it out of love and care and I appreciate it. I'm just scared =(
 
Lessa,
Hang in there! Ten days seems like a long time to wait for you GP appt, but worry won't help anything. I have found that being emotionally stressed makes my epilepsy worse.

I completely understand the crashing world. I used to be able to drive because my E was totally controlled, then over the last 10 years, things started changing (menopause) and 2 years ago I had to stop. It was/is a bummer! But I'm slowly learning to accept my changed life, and at the same time I hold hope that my seizures will be controlled again and driving will become a part of my life.

So, yes, things are shaky and change is scary, but I'm hoping your doctors will be able to diagnose the cause of these, and you will be able to continue living your life as you knew it!

:hugs:
 
Thanks Pink. We went to the ER because I was having those weird...seizure things where I lay on the floor unconcious and floppy. In the waiting room I ended up seizing and having a full blow flailing and making horrible noises. One nurse put her finger between my collar bones hard and like pushed on my traecha which managed to stop the seizing because I literally could not breathe anymore and my body went from one type of "OMG OMG OMG" to the next. I'm bruised and battered.

They have given me a temporary diganosis of seizure disorders. And have told me I can't do much without supervision. No medications as they need to do an EEG and I'm having a heart monitor hooked up and going to see a neurologist. My CT scan came back clean with no tumors thankfully, so whatever is making me seize...still a mystery.
 
There is nothing like "performing" in front of medical personnel to finally be taken seriously! So sorry you had to get bruised and battered in the process.

I'm so glad they are doing something for you, and that they have giving you the green light to go to the neurologist instead of first the GP and then waiting for the appointment for the neurologist. I hope they expedited your appointment, also? When is it?
 
They sent it as an emergency, don't know the time someone will call me. So its a game of wait and see, continuing to have episodes. Sometimes I just stare off, sometimes I fall on my face an lay there. Sometimes I 'preform' the whole thing. Sucks. The DR in the er was like "how do you know it was a seizure in the waiting room"

When apparently there were like a million people around me cause I was flailing. Someone grabbed between my collar bone and pressed hard (a nurse?) and it kind of brought me to? But it hurts like hell now. Is that something that is normal for them to do?!
 
When apparently there were like a million people around me cause I was flailing. Someone grabbed between my collar bone and pressed hard (a nurse?) and it kind of brought me to? But it hurts like hell now. Is that something that is normal for them to do?!

Not for me when I've had TC seizures, flailing all over like that after 911 has been called. I've never heard of a nurse or any professional grabbing between one's collar bone and pressing during a seizure. One should never do that during a seizure. It could cause more damage.

From webmd.com:
How to help during a seizure
Protect the person from injury.
-Keep him or her from falling if you can, or try to guide the person gently to the floor.

-Try to move furniture or other objects that might injure the person during the seizure.

-If the person is having a seizure and is on the ground when you arrive, try to position the person on his or her side so that fluid can leak out of the mouth. But be careful not to apply too much pressure to the body.

-Do not force anything, including your fingers, into the person's mouth. Putting something in the person's mouth may cause injuries to him or her, such as chipped teeth or a fractured jaw. You could also get bitten.

-Do not try to hold down or move the person. This can cause injury, such as a dislocated shoulder.
 
I'm out of the hopsital, they're still running tests and the doctor is convinced is not epilepsy because I don't always pee my pants, but she sent me home with a script for ativan and topomax ( think thats the name). Glad to be home.

EDIT: not topomax is tegretol CR
 
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the doctor is convinced is not epilepsy because I don't always pee my pants
. Doctor is clearly ignorant about epilepsy. I've had quite a few tonic-clonics (grand mal seizures), and I only peed myself the very first time. Many people never do. And of course there are all the other kinds of epileptic seizures where you don't lose consciousness at all. Hang in there, and find a good neuro or epileptologist when you can.
 
I'm going to, I have my fiancee writing down what I need, so we can direct the conversation with my doctor. We want this solved, and solved as SOON as humanly possible.
 
Going to the neurologist on the 6th of august i'm so excited i'm capslocking this beast!
 
I agree with Nakamova. Any neurologist who thinks one does "xyz" during EVERY seizure needs to go back to school.

Glad to hear you're continuing on for that second opinion.
 
I had a similar experience lessa. My seizures don't fit into any one category. I get stiff all over and sore. I also get lightheaded and feel like I'm going to faint. My gp thought I had a heart problem, so I was on a 48 hr monitor for that. When that came back clean, my parents and I told my gp that we thought my episodes were seizures. She immediately dismissed the idea just because I wasn't having absence seizures or tonic clonics. So I got sent to rheumatology. The dr ran more tests, and said he agreed with us on the seizure diagnosis. So back to my gp we went. Finally talked her into sending me to neurology. One 24 hr EEG later and the best dr in the state of Texas, I had a diagnosis. According to the dr, most neuros wouldn't have noticed my seizures on the EEG because they were so well hidden. My dr looked at every page of my EEG to diagnose me. I'm so glad he did! After I was discharged, I was fine for about a week and then my seizures changed and I was back in the same room in the emu even! That EEG was a three day EEG. Dr said I was fine, this was a different dr. I was sent home, and was seeing a nurse practitioner because my dr was so busy. Then just recently my family moved up to washington state, and I have my first appt with my new neuro in a week. I'm curious how she'll handle it! Sorry this is so long.
 
Sorry for the delay, we were out of internet for a while there.

They have decided that my seizures are PNES seizures. =(
 
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