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momof1

Complex Partial/Night Terrors

I am new to this forum so please forgive any mistakes I may make. I am looking for different information on How Epilepsy is actually diagnosed. I was told by the Epilepsy foundation that recurring seizures is termed Epilepsy. I had been in a car accident 12 years ago. 9 months after that my problems began. At first it only happened while I was sleeping. I would scream, jump out of bed and run until I hit a door or a wall. The only way I could tell that something had occured was by the injuries, my bitten tounge (lip) or my family telling me. I have tried to jump off of the balcony, taken off my clothes, gone outside or walked around afterward talking nonsense. At times my memory is affected. I have seen many doctors. They said I suffer from Night Terrors. About 8 years ago they started to happen while I was awake. Many times I had gone grocery shopping and woke up in an ambulance. It got to where I could feel it coming. I would run and bite something. One doctor witnessed this and said "it looked like a complex partial seizure." After 10 years I was finally put on dilantin. # years ago. Now one of my main concerns is that I have NEVER been diagnosed. The last doctor I saw said that I have a mental problem. This is based on Normal EEGs. I had only seen this doctor twice. Has anyone else had similar problems in getting help??If someone else can relate to my story or give me feedback I would appreciate it. Thank you.

Comments

RE: Complex Partial/Night Terrors

hi, two of my children had night terrors... they screamed bloody murder and were terrified.... they did not walk around or do things like you have done when they had them..... they just cried and screamed forever it seemed and there wasn't anything we could do to help.... they went back to sleep and had no memory of the night terror the next morning. thank goodness. normal EEGs are common with partial seizures - as you probably know. is there a possibility that you could change doctors? if your primary care doc will authorize it you can interview a new doc. i talked to my GP about the kind of doc i wanted. i recently interviewed a new doc. i didn't take any medical records with me except a copy of an fMRI that i had. it wasn't that i wanted to hide anything.... i just wanted to be able to go back to my old doc without feeling weird in case i didn't like the new doc. i like the new doc, so i'm going to stick with him. dilantin is not exactly a first line med these days.... does it stop your seizures?

RE: Complex Partial/Night Terrors

Thanks for your reply. Dilantin has helped. I have only had 2 seizures while awake since starting it. I was fighting CPS 3 years ago. They were saying that I was mentally ill and hurt myself on purpose. I went into multiple grand mal seizures in court. They gave back my child. That is when dilantil was fist prescribed. 6 weeks ago I had a seizure while driving. I am being charged with being intoxicated and disorderly conduct. All tests were negative. It is now up to me to prove that I have a seizure disorder. I do not have a gp or neurologist. They both closed their practices. This is why I have started searching the internet for resources. If someone can point me in the right direction it would be appreciated.

normal EEG's and epilepsy diagnosis

Not all types of epilepsy or even seizures show up on an EEG. I have/had Frontal lobe epilepsy
and was in the hospital 3 different times in the Epilepsy Monitoring Unit so they could capture
a seizure on EEG. Between the 3 different stays, I must have had around 25 seizures and not
one showed up on the EEG, that is because my seizures started in the frontal lobe and the skull
covers that area very well and makes it difficult for the electrodes to pick up the reading
through all of that. I was finally deemed a candidate for surgery and in order to determine
exactly where the seizures came from they placed the electrodes directly on my brain in order
to pick up abnormal brain wave activity. You can have epilepsy without it showing up on an EEG.
I hope you can find the help you need in proving your case. Good luck to you. You may
want to find an epileptologist rather than a neurologist or GP. They specialize in epilepsy.

Seizure freedom is the only acceptable outcome,

Wendy

Frontal lobe epilepsy surgery

Hi,
I just recently had surgery for Frontal lobe epilepsy (right side FLE). Before my surgery I
sought out information from people that also had FLE as this is not nearly as common as TLE.
If anyone has any questions, please don't hesitate to ask.

Seizure freedom is the only acceptable outcome,
Wendy

Re: Frontal lobe epilepsy surgery

Hi my son is 20 months old and has what his neruologist belives to be night terrors but he ia also having some seizure like activity during the day. We have only had our initial visit with the peds neuro dr and go tomorrow for his MRI and the end of the month we have a sleep deprived EEG scheduled. Chip's "night terrors" only last about 2 or 3 minutes and he doesn't look awake with them like I have seen described in everything I have read on them. He also thrashes a lot with them or he has jerking movements of his arms and legs or his arms and legs are drawn in to his body and he is stiff. As it starts to come to an end his eyes open but you can see he doesn't do it himself and his eyes are glassed over looking and then the screaming just stops and he looks around confused for a minute or 2 and then he passes out. During the day he just zones out for a minute or 2 and you can't get his attention and then when he comes to he is sleepy even though he may not go to sleep. I have not found anything in particular that triggers either the day time zoning out or the night time screaming. He does it if he's not over tired or if he is. He does the day time zoning out more frequently lately and more often than the night time screaming but the night time screaming is becoming more frequent. In my internet research I have found an article that fully describes everything my son does and it's intitled nocturnal frontal lobe epilpesy. If their is anyone that knows anything about this please contact me I want all the information i can get on it. Also my son has had several very hard hits to the front and back of his head. He is very adventursome and climbs on everything and has fallen many times and hit his head giving himself a mild concussion one time.

Re: Frontal lobe epilepsy surgery

My daughter is 16 and she has nocturnal partial seizures originating in the right frontal lobe. The EEG's don't show a focal point, but she spins to the left so they assume it is in the right frontal. She used to have them in the day also, but her meds keep them only during her sleep now. The med that has worked the best for her is Tegretol. She takes a time release version called Carbatrol. Stress contributes greatly. She also screams when she has the seizures during sleep. I purchased a bed rail and pad to keep her on the bed and it helps allot in reducing her injuries. Pads are the Bed Rail Wedge Pads: http://www.colonialmedical.com/product.php?productid=17225&cat=0&page=1 Railing is Standers EZ Adjust Bed Rail purchased on Amazon. Both work very well together.  Her meds ( Carbatrol and Zonegran) don't completely control her seizures and the doctors are very frustrated. I have recently noticed that I have a gluten sensitivity. I am going to test her for Celiac's disease since this runs in families and gluten can cause seizures. I just learned this today and there appears to be allot of information on this. She wants to go on a gluten-free diet to see if it helps. I suffered a variety of intestinal symptoms for years and only got antacids from my doctor. I started reading a newsletter called "Health Alert" that recommended an elimination diet to see if food was causing my problems. This is where I read about gluten and epilepsy also. Don't just listen to your doctors. My daughter has had seizures for 7 years and all they do is give her meds and recommend surgery. I'm amazed to find many resourses saying that it is very important to test for Celiacs in cases such as hers but it has never been mentioned. Good luck with your son. Hope this helps. Tom

Re: Frontal lobe epilepsy surgery

Hi Wendy,

My daughter has frontal lobe seizures and I'm wondering how your surgery went. Her EEG's also don't show a focal point so I have been very hesitant regarding surgery. Thanks, Tom

RE: Complex Partial/Night Terrors

you should not be driving. you need both a gp and a neuro.

RE: Complex Partial/Night Terrors

It can be difficult to establish a firm diagnosis if the EEG is normal, but it's certainly not impossible. You do need a neurologist right away, and probably a GP too. Check with your local hospital or your child's pediatrician for names of good doctors and make an appointment.In the meantime, I hope you'll explore epilepsy.com for information on Diagnosis, Types of seizures, and so forth. (You can find all these in the left-hand column of the home page.) You can also read about "psychogenic" (non-epileptic) seizures at http://www.epilepsy.com/epilepsy/seizure_psychogenic.htmlSometimes it is hard for neurologists to tell whether seizure-like episodes are really epilepsy, but they should be able to do it. And some people have both epilepsy and non-epileptic seizures!Do continue to take your Dilantin as prescribed. If you continue to have any seizures at all, please see a neurologist as soon as possible and don't drive!

RE: Complex Partial/Night Terrors

This is the first time I have seen CPS and night terrors in the same sentence and I have been looking for it for a while. My 8 year old son has CPS and my six year old daughter until recently suffered from night terrors. Interestingly, our search for info on the seizures lead us to solutions for the night terrors. My suspicion is that it is the same genetically transmitted metabolic problem that is responsible for both conditions. I recommend three books. For everyone who suffers from epilepsy I recommend starting with Patricia Murphy's book, Treating Epilepsy Naturally. I read a recent review of the book by Dr. Abram Hoffer who recommended that this book be read even before you seek out a doctor. The second book I recommend is Ellaine Gottschall's, Breaking the Viscious Cycle. We were referred to it in search for a metabolic basis for the epilepsy and what we found was the metabolic basis for our daughter's night terrors: gluten-based nutritional malabsorption. We removed gluten (and liquid milk) from our daughter's diet and the night terrors stopped immediately and have not returned. For others it may go well beyond gluten to include caisein and a whole host of grains and other carbohydrates. Gottschall's book is the best explanation of leaky gut syndrome that I have found, and it provides lots of info on the solution: the specific carbohydrate diet (SCD). Gottschall (and numerous others) explain that neurological symptoms often accompany GI disorders. This learning ties in with our progress with our son and his CPS. He is allergic to wheat, dairy and sugar. When we began managing his diet for these alone he responded remarkably well. It's clearly a big piece of the puzzle and I suspect the remaining piece is the repair of the GI damage that has been done.The third book I recommend is Dr. Chris Reading's Tracing Your Genes to Health. There is little specific reference to epilepsy in this book but it reinforces to me the metabolic nature of many, many illnesses, including my son's. This is a book that anyone with concerns over serious illnesses in the family should read. READ THIS BOOK. I don't have time to spell out the reasons why.I know you stated that your problems began with an accident or head injury, but if I were in your shoes I would still approach this from the metabolic perspective. I believe, as does Dr. Reading, that the underlying problem can manifest itself in many different ways. It's possible that the trauma is not so much a cause of your problem as it is a determiner of your symptoms. My $.02 worth.BE

RE: Complex Partial/Night Terrors

Just a thought -- I think we are dealing with two different CPS. Child Protective Services and a disease with the same initials. --Mersix

RE: Complex Partial/Night Terrors

I was referring to complex partial seizures.BE

RE: Complex Partial/Night Terrors

Hello momof1,I am with you on this one. And thanks to the Epilepsy board here and all of the others who have shaired their stories and insite with me this is a wonderfull start. I hope you find the help and comfort here that I have found. I also have suffered from complex partial seizures for several years 17 to be exact but it is only within the last 6 months that I found out what was actually happening to me. and honestly in the last two days that my Dr. said this is the type of epilepsy I have. Although my Dr. also feels that I suffer from another type of seizure too he is still looking into this as it is very complicated.Because all my EEG's even from when I was a child have all been within "Normal limits"It wasn't untill He decided to do a 24 hour EEG that it showed up there was some distubance in the frontal lobe area of the EEG and that was only while I was under sidation as I have never sleeped very well whitch caused me not to be able to gointo that sleep state for other eeg's even after being up for days at a time. It also took A major seizure one night and my husband explaining this to my Dr. as I have never had seizures that caused me to have convulsions or actaully hurt myself to an extent that others knew something was wrong. Make sure that your Neurologyst is doing everything possible to find the problem if not seek a second opinion. As I did have problems with my Dr. and had to start demanding answers although he has now givin me some amswers I am still going to seek that second opinion just to be sure. But your best bet is to have any family member who has been around when you have a "spell" is to have them make note of what is happening and if possible take them with you to the Dr. , if you have a video camera try to Video tape yourself sleeping at night and catch it on tape alot of Dr. like this as a method of being able to see exactly what happens while you are sleeping or maybe a family member can catch it when things start to happen.. I hope that I could be of some help and if you have any questions please ask I will be happy to help in anyway I can. Please remember though if you feel one Dr. is not working out seek a second opinion.Picnupthepcs.

RE: Complex Partial/Night Terrors

Thanks for your reply. It is nice to know that someone else can relate.I read another message and it was "interesting" to hear that someone else's memory is as bad as mine.

Re: Complex Partial/Night Terrors

Dear Mom of 1:

I am 50 years old and just diagnosed with a seizure disorder in September when I had a massive grand mal and broke and dislocated my shoulder and upper arm. I have surgery scheduled for December 12 to repair the damage.

I was really interested to read your post. Almost 12 years ago, I woke up on the floor next to my bed, with my head cracked open and bleeding everywhere. I had no idea what had happened. I was dreaming that I was under a mobile home that was being lowered off its jacks and the people outside could not hear me so I felt I had to throw my body out from under the trailer or be smashed for sure. That is all I remember.

After this incident, I went to a local sleep disorder center and was given a sleep study. It was an overnight trip to the hospital with about 65 different wires hooked up to my head and body. The jist was, that after the study, I was diagnosed with REM Behavior Disorder. If you look up that sleep disorder, it means that during REM sleep, my brain was not producing the enzyme, or something that usually is produced and keeps us basically paralyzed and unable to act out our dreams.

In my case, I had sleep walked and talked all my life, but it was always funny until this time when it was very serious and did frontal lobe damage to my brain in the impact.

When I read your post, I immediately thought that it sounded like what I used to do. After diagnosis, my neuro started me on Klonopin, .5 mg at bedtime. From the first night I took it, I never had another episode. If I forget the medication even one night, I will have violent dreams and be up or sit up in bed, or get up. Its scary to think that you could hurt yourself or a loved one while you were asleep.

If you have not thought of this, maybe you could check into it. The medication was cheap, easy, and had no bad side effects. Now, all these years later, I end up with a complex partial seizure that knocks me for a loop and on seizure meds for the rest of my life. Not a bad deal in all, if it keeps me from having another seizure. Maybe the REM disorder was a pre-curser to the seizure activity I now have.

Just an idea and thought in case you want to look into it. Your story fits my case perfectly, and the "fix" was so simple and effective I was glad someone pointed me in that direction.

Good luck on your journey!
wendy in oregon

Re: Complex Partial/Night Terrors

PS: When I had the sleep study, my EEG's were normal and no indication of epileptiform activity. But now they are epileptiform in nature.

wendy in oregon

Re: Complex Partial/Night Terrors

Only about 30% of people show an abnormal EEG so it's no real proof of epilepsy except those that show an abnormal EEG which is almost absolute proof of epilepsy.  One woud think your doctor would have explained this to you.  There is one reason that I can think of why a person can change from one to another but you should get your doctor tor explain this to you!

 Plopdan U.K

Re: Complex Partial/Night Terrors

Hello,
I'm twenty now, but all my life I've had episodes that two years ago were diagnosed as complex partial seizures. I also had night terrors until I was perhaps seven or eight years old. Because I experienced an extreme sense of unreality with both events, I've always considered them linked. I'd love to learn more about possible epilepsy/night terror links. If you have found anything out, I would love to know!

Thanks!

I read your question and I

understand about the whole night tremor deal but it sometimes is hard to figure out if its epilepsy or night temmors

Re: Complex Partial/Night Terrors

Hello

I can only reply on my own personal experience, so here goes.

A few nights a go I was semi concious and was in bed at the time when I could have sworn some one had a tight grip on me this went on for a while then I manage to fight back this also went on for a while.   I was so scared when I managed to get out of bed I put my chest of draws in front of my bedroom door.  When I looked at it logically the tight grip was a seizure and me fighting back was the convulsions now if thats not epilepsy I don't know what is.  I am 43, 6ft, 14st, fairly strong and nothing much scares me but that night did.  Unfortunately this was'nt the first time some thing like this has happened to me but I was'nt as scared.

I hope this was some help?

Plopdan U.K

Re: Complex Partial/Night Terrors

I am the grandmother of a 2-year-old who spends every other weekend with me. His mom said he has night terrors, but I had never heard of these... until his last two visits. On both occasions and on days in which he was overly tired, he began screaming after being asleep only an hour or so. It looked like he was awake, but he wasn't. His body was rigid, his legs outstretched. I could not wake him up. He buried his face in his pillow and screamed into it. This lasted about 20 minutes, all the while I rubbed his back and tried to soothe him. He finally fell back soundly asleep.
Today, he was in the ER after his babysitter said he "zoned out'' and nearly fell out of his booster seat at the lunch table. When she caught him and put him down, he was walking, but bumping into things. She called his name several times, but he didn't respond. In the ER he was alert, and walking around just fine, but his eyes sometimes looked like he was drugged. The ER physician said he was dehydrated and ran blood tests to determine if he had an infection. Everything came back normal. He attributed the baby's clumsiness and incoherence to being dehydrated.
Do we have more reason to be concerned?

Well Nanny, I'm not a

Well Nanny, I'm not a doctor so this is just my humble opinion.

First of all, that does sound like a night terror.

As for the thing that happened during the day, I think that because it only happened once, and he was dehydrated, you shouldn't worry about epilepsy too much. If it happens repeatedly or if you are just plain worried and want to be reassured then see pediatric epilepsy doctor. Don't let doctors make you feel bad for being concerned. ER docts and PCPs usually don't know much about epilepsy. Trust your instincts.

Here is info on Night Terrors

Luck,
~Sun~

Re: Well Nanny, I'm not a

SUNFLOWER, I HAVE A QUESTION. I READ ABOUT THE NIGHT TERRORS YOU SO KINDLY PROVIDED. IF IT WAS MORE THAN ONE PAGE, I DIDN'T GO ANY FURTHER. TOO HARD VISUALLY. WHAT I WANT TO KNOW IF THIS MIGHT BE SOMETHING THAT I AM HEADING FOR. I TRIED TO READ AS MUCH OF THIS AS I COULD, AND SEEMS LIKE IT MAINLY HAPPENS WITH KIDS. MY VISIONIS NOT GOOD, SO I HAVE TO SKIM AND PICK UP WORDS HERE AND THERE. CAN'T READ ALL THESE THINGS.

I GET SICK A LOT. I HAVE NOTICED A PATTERN. FIRST, I GET EXTREMELY HOT. NOT MENOPAUSE. BEEN THERE, DONE THAT. THEN THE CP/S START. THEN I AM TOO WEAK TO GET OUT OF BED. HOWEVER, THE PAST TWO TIMES I GOT 'SICK', I NOTICED I WAS GETTING VERY AFRAID, WHICH MADE NO SENSE TO ME. I WAS SO SCARED OF ?????? I DON'T KNOW, AND REALLY COULDN'T FIGURE OUT WHY I WAS FEELING LIKE THAT BECAUSE I AM NOT AFRAID. THERE SEEMED TO BE A LOT OF FEAR CONCERNING WHERE I AM LIVING/ NOT SOMETHING I FEAR EITHER. AFTER THE S. STOPPED, THE FEAR WENT AWAY AND BAM, CAME BACK THE NEXT TIME I WAS GETTING SICK AND HAVING THE C/PS. IS THIS LIKE ANYTHING THAT IS BEING DISCUSSED HERE, OR DO YOU OR ANYONE HAVE A CLUE WHY THAT IS HAPPENING OUT OF NOWHERE?? THANKS, JAN

To RockNRoll

I have a post mainly toward your post, I posted recently and it sounds very familiar to what your saying and it sounds like we have alot of similiar problems. http://my.epilepsy.com/discussion/997298 please take a look at my detailed blog and let me know in a comment.

Re: Complex Partial/Night Terrors

I
found this post doing a Google search for infant night terrors and seizures. I
am new to blogging, and I am not sure of the proper protocol so hopefully I do
not cross the lines of etiquette.

My
son is 20 and has recently experienced three seizures, each about 2 weeks
apart. After several weeks of ER visits, medical work ups, and various doctors,
the current belief is that it is Juvenile myoclonic epilepsy (JME), also known
as Janz syndrome. My research into JME is has indicated that there are three
types of seizures common with this syndrome, and that frequently Generalized
Tonic-Clonic Seizures don't begin until teens or young adulthood.

The
question is, what behaviors have we seen and searched medical advice for, were
possibly Absence or Myoclonus. As Mom, I feel a need to understand, when did
this begin, how did it evolve and why didn't I know. There are many questions;
he suffered from night terrors most of his life, where he would wake up screaming
and rigid, eye rolled; also night disturbances, complaining of being asleep and
woke up by a jerk. He was treated for ADHD as a child because he exhibited the
habit of repetitive annoying behavior, taping a foot, pencil or finger that
would continue for minutes and you couldn't stop him. Along with episodes of
"spacing out".

In
more recent years, he has lost jobs for episodes of inattentiveness that he
doesn't remember. And between 16 and 18, he "feel asleep at the
wheel" twice, once hitting a power pole and once a tree.

The difficulty now is that he will graciously allow me to go
into the doctor’s office with him (he is 20), but if I speak, then I am shunned.
I cannot ask these questions, and he does not have the full history and
understanding of his childhood behaviors.  So, I sit, listen, and wonder. And, he is
depressed because he fears never having a normal life. He also had open heart
surgery at three, and continues to have heart issues, with chronic pericarditis
between 11 and 17. He is otherwise physically and developmentally “normal” for
20.

Any interaction about this would be greatly appreciated. I
just need an outlet for support.

 

Re: Complex Partial/Night Terrors

My neurologist has diagnosed me with epilepsy even with normal eeg's, because of my episodes simply stated because your medication will cause your brain to function in a manner that is normal and no abnormality will be indicated until a grand mal occurs or large malfunction brain wave is detected without medication.   ????? Who knows. 

Re: Complex Partial/Night Terrors

My name is Will and I am 22 years old and having frequent night terrors/tremors. What takes place is my whole body starts shaking. I am either hot or cold, when it happens. Also it may make a seizure take place or I am able to stop the seizure from taking place by deep breathing. So sleeping is disturbed every night now. I take as my main seizure medicine non-generic Keppra and Lamictal. As needed I take a rescue med called Clonazepam. I am trying now to get on this med called Onfi. I haven't slept the whole night since January of 2012.

What is taking place and why?

Is it because of the medicine I have been taking?

What are the ways of treating it?