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

Tiffani,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. I too have epilepsy and have had it ever since I was 10. There were a lot of things I have not been about to do in life but I have learn to live with it. There are a great number of things to do. It sounds like you have what the call Auras which you think you having one coming on. As you have I was unable to speak, what I was going though I could form the words but unable to speak. If you are out in the heat of the day it will cause one, so limit your time in the heat. One other thing to watch out for is flashing lights like in a theater coming out toward you, this could cause a seizure. If you take a vitamin B12 this help you out. You might go to see a Epileptologist, doctor which specialist in Epilepsy which you will find at a medical school.

I have been able since my epileptologist to not have seizures. I did have a surgery and after surgery I haven't had one, which I am very thankful.

Again welcome, looking forward to seeing you around. If any guestions feel free to ask. My thoughts and prayers are with you.

Darlene

Hello & welcome Tiffani,
I added some spacing to your post for easier reading for all the members here.

Hi Tiffani,

Welcome to the forum! Darlene is 100% correct start taking vitamin B12 and see an Epileptologist. When you are having the seizures before you go to sleep and get up in the morning these are called Myoclonic seizures. I had them for awhile and they were a pain them my Epileptologist put me on the drug vimpat and I haven't had a single one since then. Lack of sleep and stress are 2 of the main things that can trigger seizures for a person. Another thing that can trigger seizures is hormonal changes each month. That was the time I had the most seizures. When you can tell you are going to have a seizure this is an aura seizure like Darlene mentioned and sometimes people call it a simple partial seizure. The moment you get the feeling you are going to have a aura seizure tighten up the muscles in your body and make you hands into tight fists for a few seconds this can often stop the seizure. My Dr. told me to do this back in the 1970's when I first began to have seizures and it has worked great. You might have a sleep disorder like sleep apnea that is triggering seizures. Tell your Dr. to do a sleep study on you. Also have your Dr. do a DNA test on you to find out what seizure medication will work the best for you with the least side effects. I had a DNA test done a few yrs. ago and they found out I was drug resistant so I'm on a special diet that cuts down my seizures called the ketogenic diet. The diet is high in fat but low in carbs and starch foods. I build up ketones in my system and this in turn reduces the seizures. I wish you the best of luck and May God Bless You!

Sue

Thankyou guys, it really helped me figure out alot .. im sorry, but im still not sure how to reply the correct way so everyone that helped me can see me write this back. But you guys are exactly on point .. I do get an aura feeling coming on before i have my seizures.. And pokette, You are right on the money as to when i can feel myself getting the aura feeling , i do the same EXACT thing .. i tighten up my muscles into a fist and i squeeze really really hard and pretty much prevent me from having them, and for the most part it works .. I was just more concerned with the having them at night and waking up .. NEver understood, why it would be happening so frequently during those times .. Ive been dealing with this for half my life, and i know exactly all the feelings and things that trigger it .. But some of my doctors dont believe that people that have seizures can remember or hear whats going on and EVEN force myself out of them .. they think im crazy, but i keep telling them that this is how i get rid of them and when they happen during the night or waking up, its almost like i cant control it because at that point, all my muscles are relaxed, and they happen so fast, i dont even have a minute to alert someone or try and work my way out of them.. But, im very ver glad that you guys know where im coming from .. It is a very very big pain in the *** .. more frustrationg than anything.. im not too scared, but more ebarrassed if it were to happen in front of someone .. That is a crappy feeling .. And i just dont need anyone freaking out because i can hear them, and it makes me have them longer becuase i get so anxious when people get upset ..
I did have all neurological testing done though, so thats why it was confusing me .. i had the 24 hour eeg, sleep apnea testing done, and of course i didnt have a seizure the night the they did it .. so no doctor has ever seen my having them.. But i definitely go into one because my cheek startsts to twitch, arm goes numb, and i feel it coming on 30 seconds before so i dont have much time to tell anyone .. It has gotten so bad that im afraid to take my one dog out .. she is overweight and if i start to panic, its very hard for me to just ru upstairs with her . But, the way you guys secribed it, makes so much more sense and i can relate to you guys .. it does suck the life outta me when i have real bad ones in the morning, and i have too wait home, relaxi and until i feel better .. i just really want them to stop .. i know nerves play a major part, and they are most likely from anxiety issues, but i did not know vitamin b 12 helps with that .. Thankyou . I have my doctors tomorrw and im gong to mention to him .. See only thing, ive had every test done, but im not sure if i had an epilepsy test done or seen a specialist in that field .. bright lights do get me nervous and tingly, and DEF lack of sleep, anxiety, and hormones play a huge roll .. i am going to tell my doctor everything tomorrow and see if he can work something out with me .. I really appreciate alll your feedback and help and will be sure to check in with you guys tomorrow after the doctor .. I just want to make them go away .. OHH, SUE... can i ask you? what type of surgury did you go for to make them stop because i will do what ever it takes to get rid of these episodes, even if they calmed down to once every month or so i would take it over having them sometimes 4 to5 times a day and night ..
I will write more tomorrow, im very tired and hope to get some good sleep with no seizures .. thankyou all again for writing and welcoming me into the forum. i Feel very comfortable here and it makes me feel better that other people have the same problems .. good night everyone , i will be in touch tomorrow .. thx again .. Tiffani

im not sure if i got to respond . but you guys helped me alot . im tired and going to go to sleep . but everything makes sense .. just cant figure how to respond back to you .. i will talk more tomorrow .. thankyou all again

Hi Tiffani,

I hope all goes well for you at the Dr. I personally would get a 2nd opinion if your Dr. doesn't feel you are having sz. In regards to the surgery the first surgery I had done was a special test called a veeg (video e.e.g.) but instead of placing the electrodes on my head they drilled 7 holes in my head and placed electrodes in different areas of my head so they could pinpoint the main area that was triggering my sz. This is seldom done only in hard cases. You should ask your Dr. to do a veeg on you where you are in the hospital for a few days but the electrodes would be on the top of your head like a regular e.e.g. and you are on camera around the clock except when you are in the restroom by doing this the Dr. will have the sz. on video as well as see the spiking in your brain when you have a sz. The last surgery I had done only reduced my sz. but it was a great help to me and that was ultra sound brain surgery. I had to stay awake for most of the surgery except for when they cut into my head. The reason a person has to stay awake is because the Drs. are doing tests on you to make sure you can still feel, read and talk. I used to have over 300 sz. a yr. but the surgery reduced my sz. so I have had only 171 sz, at the most in one yr. and that was because I was under a lot of family stress at the time. What's even better now is the gamma knife surgey and it's a lot safer Drs. use high frequency radio waves and wipe out the brain damage. In many cases the person can go home the same day as they had surgery unless they us to much radiation then you have to stay overnight. This form of surgery is also used for people who have had brain tumors. I'm looking into having this surgery done in the future. Here's wishing you well and May God Bless You!

Sue

My thoughts and prayers are with you at the doctor's office. Before going sit down and write the actions you are going through, this will help out. It is pretty smart to get a second append for this condition. I went a great number of years before I met a neuro and he lead me the right way. Please keep us informed on you.

Darlene

I posted to you in the welcome thread.

But I'm Donna and My son Derrick has the seizures.

He has had seizures since he was 6. and he is now 20.

Tiffany, he can remember all parts of a seizure, and he can
do things during a seizure. He also can carry on a conversation
that makes sense.

The reason we know he is having a seizure, is that , When he carries
on the conversation, say 10 minutes later he has no memory of the
conversation, or the place he had it. He will not remember the walk he
took around the area. He once walked all over his elementary and tried
to push another child out a door. (The child was trying to keep him in the
building till his aide got there ) When his aide got there, she said, Derrick
lets go this way. And he did.

He remembered nothing of it later.

These are called complex partial seizures.


Now I want to comment about nothing showing up on a EEG or MRI.
Please do not worry about this, its not unusual. Read other threads,
and you will see this.

I can tell you, that I was diagnosed with seizures as a child for about
15 1/2 years, and they never saw it on a EEG. Just what people saw.

I was controlled by meds, and then was allowed to try going off. And
it worked.

Donna

First, we are not Dr.s but it indeed sounds like epilepsy. All the things are kind of different for everyone. I don't remember mine & have people tell me that I had one & what happened. I do know I've had one though. I have complex partial seizures. Yes, like others have said, you oughta get a sleep EEG. You can go to sleep at night so maybe they will see what happens, on the eeg. It is nothing to be afraid of. They just put wires to your head with a sort of cream & you 'live' in the bed on camera. You can watch TV, read or do those puzzles in a book (like crossword or circle the word). I no longer have tonic clonics (grand mals) because I found meds to control those...you might! (When you sleep over tell the host what might happen & that it's nothing to be afraid of.)