[JerseyTee]

Hello, First off my name is Tiffani and i just turned 30 a few weeks ago.. And i have been having this problem ever since i was in 8th grade going into highschool.. I remember the first time it happened to me.. It was the middle of the night and i remember waking up and making this very strange noise and didnt have a clue what was going on.. I felt a tingling sensation and my cheek started to shake and i drooled abit.. My tongue had the same feeling and i remember biting it..
I didnt think too much about it, but the following night , same exact thing.. I had told my mom, but it was very hard to describe and she thought i was having nightmares or night terrors.. As the days went on, it had gotten worse. They would start happening during the day. I would start to drool, and my tongue would go numb and my cheek would shake and almost like my cheek would pull to the left side of my face and thats how it would start, and would last about 30 seconds to a minute.

I could not talk while it was happening, and i remember i would try and hide it from anyone i was around because i felt embarrassed and could not talk. They would come and go. Finally after a few weeks to a month, i was in the bathroom and felt the feeling coming on. I remember looking at myself in the mirror as it was happening and my whole side of my face was pulled, numb, i was drooling and it was shaking.
My mother was calling me for something and i couldnt talk or answer her back. When she came in the bathroom, she actually was able to see what was going on. I was rushed to the hospital, and they ran all different tests. They checked for epilepsy, bells palsy, mini strokes, seizures. They did all neurological testing and everything came back negative. I remember the doctor had given me Hydralazine because it is a muscle relaxant and helps hypertention.
I had taken the medication for about a month maybe and just remember being very very tired from it, but they Finally went away !! YEARS went by and never happened after that. Sometimes i would get alittle nervous because i would almost get that feeling but i somewhat had controlled myself and pretty much stopped it from happening. So For about 11 years i was FINE. Then in 2006 it happened again.. And this time they would last longer and became much worse.

I immediately had told my mother and i went back on the Atarax(hydralazine) but they didnt go away. This time they would be so bad at night that it would last about a minute and i was seizing so bad that if i tried to get out of bed, i would fall and lose conciousness. Back to the hospital, all tests done again. Neurological tests again and nothing.
But they were mostly happening as i was just about to dose off or as i was waking up. VERY VERY scary and strange. I had one so bad in the car, luckily i was in the back with my mom, and i was tired and was about to dose off. I sat up, looked at my mom and all i remember her saying to me "Are you going to have a bad one" . Next thing i knew i was sitting in the car, at the time had no clue what happened.
Noticed we were on the side of the road. I saw my mom on the opposite side of the guardrail and she was crying and throwing up.. For a minute, i thought she was car sick and we had to pull over. Then i guess i came out of my daze and noticed someone had a rag on my forehead and asking if i was ok.
Didnt even know there was an emt on one side of me and a State trooper on the other. Finally after a few minutes i realized i must have had a bad seizure and lost conciousness. This one was the worst of them all. I was out for the count. My aunt had told me that i was pretty much blue in the face, and i guess between me seizing and passing out,, i had lost oxygen and she was giving me cpr. I do not remember ANY of this.
Once again, rushed to Another hospital and All tests done. I had gotten an EEG, EKG, Ct Scan, 24 hr EEG, Everything. And they couldnt find anything. So since 2006, this has been happening. But ive learned to pretty much get myself out of them, and keep myself calm during it so i dont pass out. Im so used to them that i can actually HEAR everything going on during it, but i see nothing.
My ex boyfriend would tell me what i looked like and i always thought my eyes were closed because i couldnt see, but he said they were pretty much open, but i would go into a Seizure. To this day, my doctors have NO Clue as to why they are happening, especially at night time or as im waking up. I dont get them everyday, but often enough to the point that i am now on a forum and talking to people about them because i REALLY want to know if anyone out there has similar episodes. I DO infact suffer from very bad Anxiety
. I always worried as a child, i guess a little more than most have. And i still do. I have tried all different seizure medications, but nothing was helping me. I am on anxiety medicine because this is the ONLY thing the doctors can rule out. They say that it is a form of an anxiety attack. And YES, i have gotten them during the day, but like i said i can almost control them and stop them from happening.

Im guessing thats why they come on so bad at night or as im waking up because i cannot fully control them right away. But, last night well early this morning rather, i had 3 or 4 of them. Ive had as much as almost 10 in a few hours. Alot of people look at me like im Crazy, especially some of the doctors ive been to. They try and tell me that there is no way they can be seizures because you cant control a seizure and you dont remember what happens during them, but i keep telling them that i INFACT know when they are going to come on, i hear everything, and work myself out of it.

I am VERY VERY sorry if i am explaining too much, but PLEASE, i am so scared, embarrassed, and do not know what to do anymore. So some of the doctors that ive seen were obnoxious and would tell me i am wrong and they are not seizures but to me, they are. I go into a shake, my tongue starts going crazy, i start drooling, and my hand and face gets tingly and my hand curls up and i get very tightened. I never saw myself have one and just by talking about this, it is making me nervous and anxious.
My conclusion to this is that i am infact having very bad Anxiety attacks, and they actually put me into a seizure. But why at night or waking up the most??? This changed my life big time. I dont like sleeping at someone elses house. I will NOT take a nap or dose off anywhere unless i am home and in my room. I almost feel better being alone because the more i hear people get nervous, the longer it takes for me to come out of them. They diagnosed me with pseudo seizures and very bad anxiety.
If i dont take my medicine, i start to get that feeling in my arm and mouth. And ive been on anxiety medicine for years now. If i go without it, i go into a seizure no matter where, what time, whatever mood im in .. I could have a great day, yet come night time or waking up i will have them. So even when im not feeling anxious or worried, they happen . BUT, they do happen alot more often when i am anxious. I cant drink too much caffeine . I will sometimes have a very light cup of coffee when i wake up, but for the most part i stay away from all of it.. To answer anyones question if you are still baring with me, NO i am not on drugs or alcohol .. YES, i do occasionally have a drink or two, but it actually seems to calm me down and i feel relaxed.

I just choose not to drink all of the time and only on occasion. As far as drugs go, i have experimented with them. I Can NOT smoke pot because it gets my heart racing and i get that feeling very quickly. I was taking pain medication because of an injury and even when i stopped taking that, they would still happen. So i just dont know anymore. I would just like to know if anyone experienced this or knows of it or heard of someone having them. Im at the point where it is really annoying, scared to go to sleep, and i dont like to fall asleep someone else, esp in front of people i dont feel comfortable with.

I am actually going to be spending a few days with a friend at the end of the month, and im so embarrassed because i dont want them to see me have them, but i cant keep from living my life over it ..

PLEASE, i dont talk too much about my problems, but i really need to know if anyone can relate to me and if there is anything they can recommend me doing. I will do whatever it takes. Like i said, it really seems to be anxiety and my nerves, but im almost at the point that ive tried everything and nothing helps . Would Really appreciate a feedback, and im SO SORRY that this is so long of a message. I just wanted to make sure i explained everything and exactly how i feel . I am going to try and copy and paste this as a new forum and maybe others can help me out as well .. Thank you SO much to anyone who took the time to read, and would appreciate it if you could help me out . Thanks again , Tiffani

I seizured when I quit alcohol (in a medical rehab, fortunately), & the drug category of muscle relaxers tend to make me seizure (except Skelaxin, it's been safe for me).

You've done a great job writing everything down. This is an important document to have. I'd suggest that you use what you have here as a 1st draft & work it up into something more polished. You can use this with new medical people you encounter.

NeuroTalk is a wonderful place for information-gathering and for friend-gathering. You'll meet people who will share their stories, telling you about when they were where you now are. Others are where you're headed. If you stick around, you may end up closer to 1 or 2 of these folks than that person you think of now as your BFF.

Or just drop in for a virtual now & then!

See you've met some of the folks. Stop by the Seizures Disorder Forum: http://neurotalk.psychcentral.com/forum11.html

Also look around the anxieties forum too if you like: http://neurotalk.psychcentral.com/forum50.html

Take good care, Tifani. Happy belated birthday. Let's see whther this third decade can't be the charmed one for you, okay?

[Dmom3005]

Tiffany

Seizures are seizures, no matter what kind.

You are doing a great job, working with them.

You are so right, you need to live your life. Its very easy to let them
take over your life. But don't if you do they win.


My 19 year old, Lives his life with them too. He has since he was
6. He too can tell when they are coming. He knows soemtimes what
is happening.

He can't stop them, and honestly I'm not so sure its that you can
stop them. But that they are stopping, and it feels like you are controlling
them.

Donna

[Concussed Scientist]

Thanks for posting your story, Tiffani.

I don't have seizures. I had a brain injury. But I have noticed that falling asleep and waking up are particularly difficult times for me, as if the brain is doing something difficult at this point that comes naturally for someone with a normal brain but can cause things to go wrong if you have a problem. So, I can see that a problem might manifest itself at this point rather than at other times.

What sort of injury did you have? Might that be relevant? I presume that your seizures predate the injury and were not caused by it. However, if you had a brain injury I can imagine that that would make things worse.

Did they do a sleep test when you had your neurological testing? I had an EEG done and I had to relax as if I were going to sleep at one point. Perhaps if you were to do this some abnormalities might be seen that are not there in your normal waking state.

It is interesting that you can sense when you have a seizure coming on and sometimes manage to control it. Is that something that you could work on and gain even more control? Apparently there are companion dogs that warn someone when they are going to have a seizure. So, dogs can obviously sense something. Perhaps you have that sensitivity also.

Good luck with your problem Tiffani. I am sorry that I have not been of much help.

Concussed Scientist