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Help! What is it?
Fri, 12/17/2004 - 19:06Hi - I'm 15 years old and while I'm not epileptic, my brother is.
Over the past year or so, something a little weird has been happening to me. I'll be dreaming, and the more intense or faster the dream gets, the more shallow my sleep. When I wake up, it's as though I feel a huge jarring, and there's this very peculiar feeling inside my head. It's kind of difficult to describe, because I have nothing outside of my brain to compare it to. The most that I can say is that it feels really 'electrical', like as though there is a lightning storm inside my head, a series of intense shudders. I can't really think and sometimes I twitch a little.
It lasts for usually up to only 1 or minutes at its most intense (right after waking up), but every once in a while for the next few hours I'll suddenly get one or two 'waves' of it. It's a little odd, beause it only just started a year ago, and the most remotely similar feeling I can compare it to is like a shock of static electricity from a doorknob, except it 'shudders' and seems to move outwards, like when you drop a rock in a pond. I think it feels like it's coming from the part of my brain level with my ears. Sometimes I see colours that move almost in sync with the weird feeling. It's not exactly painful, but it's really uncomfortable and I can't really control myself while it's happening. I also noticed that since I started doing this, I've been having lots of strange 'deja vu' moments.
I'll get this intense feeling of recognition for absolutely no reason at any given time, and it's just really weird. The most recent occurance was when I was in the car, driving down a road I know very well, past a building I see every day, and I felt this huge feeling of 'been there, done that' wash over me, as though it had happened before in a distant lifetime and this was some huge revelation and it happened again. Haha, Pretty bizarre. I also have Deja Vus in places that I haven't been before - I used to think that maybe it was just a deja vu in the literal sense of the word but I don't think so anymore.
Anyways, today I went to get an EEG. I hope it can offer me some insight as to what it is. But what if nothing irregular shows up? Is there anything I can do to make them stop? Do any of you know what I'm talking about? Two of the worst cases of it were where I went directly from dreaming to opening my eyes in the middle of my sleep. If any of you could talk to me about this, that would really be great.
Oh, and a little background: brother is slightly younger than I am with benign rolandic (sp.?) epilepsy. I'm very high-stress, prone to panic attacks, left handed, lucid dreamer, get deja vu moments quite a bit (completely unexplainable ones as I mentioned earlier), sometimes see colours when I hear sounds, really prone to spoonerism (my friends tease me about it all the time), does any of that mean anything?
Comments
RE: Help! What is it?
Submitted by LeeMc on Fri, 2004-12-17 - 19:06
Hi - Lee here.
Something wierd started happening to me too - about 3 years after an accident where I received a head injury that went undiagnosed. Things happened for me about the same way as for you - a lot of strange incidents that scared the crap out of me and made me real unsure about everything.
I don't know if anything happened at night. My husband says he never noticed anything. It was rough on my family (as well as me) because none of us knew what was going on or why. Nobody associated anything with the accident since there had been no injury found that would relate....especially 3 years later.
My kids witnessed some pretty strange behavior (to them anyway) and as time passed the incidents intensified and progressed in to full blown grand mall seizures. That took about 2 more years......two very long and scary years! During that time I was being seen by neuros at the University Hospitals who ran test after test and I never did understand if they found anything or not. They put me on some meds. First didn't work but second did. Nobody was interested in finding out why this was happening to me - except me and one poor intern who got stuck alone with me after I had an emotional outburst that caused the specialists to walk out on me.
The intern took my hand and asked me what it felt like.............WOW somebody wanted to know. I did my best to explain. He did his best to help me find peace. To this day I don't know if the things he said or did were real or whether they were just to make me feel better - but the meds were working and I found a peace I could live with.
All this took place 30 years ago but it could have been yesturday as far as all our memories and emotions make us feel. It was those Deju Vu episodes, the feelings of confusion and strange colors or lights that made me notice something was going on - otherwise I was unaware of anything (including the absence seizures that were also occuring) until the big ones began to hit. I remember that coming out of them was a particular problem.....I was irrational, beligerant and so tired that all I wanted to do was sleep and just wanted everybody to leave me alone. Made it even tougher on family - how could they understand that I wasn't raging at them???
The meds worked and I have been seizure free (as far as I know) for 30 years now. Began having the Deju Vu stuff again about 15 years ago and so we cut my meds back. That took care of that.
The long story made short is that something is going on with you. It may pass or it may not. You're at the age where your hormones are probably playing a part in it too (they do it again when you get older too) but you owe it to yourself and your family to get in there and find out what it is and take care of it for however long you need to. Nobody has to live their life wondering what will happen next and no family should have to live on-guard all the time.
Get yourself checked out and don't quit with the docs until they give you an answer as to what it is, why it is and where it is coming from. Make them do the full check and diagnosis on you.....don't let them pat you on the head and send you home with meds but no answers. Wishing you the best............................Lee
Hi - Lee here.
Something wierd started happening to me too - about 3 years after an accident where I received a head injury that went undiagnosed. Things happened for me about the same way as for you - a lot of strange incidents that scared the crap out of me and made me real unsure about everything.
I don't know if anything happened at night. My husband says he never noticed anything. It was rough on my family (as well as me) because none of us knew what was going on or why. Nobody associated anything with the accident since there had been no injury found that would relate....especially 3 years later.
My kids witnessed some pretty strange behavior (to them anyway) and as time passed the incidents intensified and progressed in to full blown grand mall seizures. That took about 2 more years......two very long and scary years! During that time I was being seen by neuros at the University Hospitals who ran test after test and I never did understand if they found anything or not. They put me on some meds. First didn't work but second did. Nobody was interested in finding out why this was happening to me - except me and one poor intern who got stuck alone with me after I had an emotional outburst that caused the specialists to walk out on me.
The intern took my hand and asked me what it felt like.............WOW somebody wanted to know. I did my best to explain. He did his best to help me find peace. To this day I don't know if the things he said or did were real or whether they were just to make me feel better - but the meds were working and I found a peace I could live with.
All this took place 30 years ago but it could have been yesturday as far as all our memories and emotions make us feel. It was those Deju Vu episodes, the feelings of confusion and strange colors or lights that made me notice something was going on - otherwise I was unaware of anything (including the absence seizures that were also occuring) until the big ones began to hit. I remember that coming out of them was a particular problem.....I was irrational, beligerant and so tired that all I wanted to do was sleep and just wanted everybody to leave me alone. Made it even tougher on family - how could they understand that I wasn't raging at them???
The meds worked and I have been seizure free (as far as I know) for 30 years now. Began having the Deju Vu stuff again about 15 years ago and so we cut my meds back. That took care of that.
The long story made short is that something is going on with you. It may pass or it may not. You're at the age where your hormones are probably playing a part in it too (they do it again when you get older too) but you owe it to yourself and your family to get in there and find out what it is and take care of it for however long you need to. Nobody has to live their life wondering what will happen next and no family should have to live on-guard all the time.
Get yourself checked out and don't quit with the docs until they give you an answer as to what it is, why it is and where it is coming from. Make them do the full check and diagnosis on you.....don't let them pat you on the head and send you home with meds but no answers. Wishing you the best............................Lee
RE: Help! What is it?
Submitted by mexican_fire on Wed, 2004-12-15 - 14:56
To me it sounds like you are having a partial seizure of some sort.
If your brother has it, then there is a tendancy for it to occur in your family whether it be on mom's side or dad's side. Somewhere someone or multiple people have it.
Yes, more than one sibling in a family can have it, too.
HOWEVER, your brother has a type that will spontaneously remit by no later than age 15 years old. Benign Rolandic Childhood Epilepsy with Centro-Tempro spikes is an inheritied form of epilepsy that is grown out of. It is also mainly found in males, and not females.
In partial seizures, people can hear color and feel sounds as part of their seizure.
Simple Partial seizures have somatosensory symptoms--feeling of a breeze, light flashes, visual hallucinations, visual disortions such as macropsia, auditory things such as buzzing, clanging, ringing, olfactory, gustatory, and vertiginous symptoms. Autonomic symptoms include the famous epigastric rising sensation, sweating, flushing, goosebumps, dilation of pupils. Psychic symptoms include fear, anger, agression, joy, elation, anxiety, panic, dreamy states, jamais vu and deja vu.
Complex Partial seizures last for 1-3 minutes, where as Simple Partial seizures last for an average of 10-30 seconds.
Complex Partial seizures include such things as automatisms--lip smacking, swallowing sounds, picking and fumbling at clothes, staring, scessation of speech, walking around aimlessly or in circles, talking nonsence, not responsive, can't carry on a conversation with another person, but will respond to calm simple directions, have NO recollection afterwards.
In people with partial seizures, at least half of them also have Secondarily Generlized TCs.
As for your sleep. People with epilepsy do have very vivid dreams, and the added meds make them more vivid. Ever since being medicated, I have had more nightmares, than I ever had my whole life, and I have only been medicated since January of 2001.
People with epilepsy have sleeping problems as well. I have to take a sedative-hypnotic called Halcion or generically Triazolam, in order to sleep.
The type of meds they are taking, kind of determines what kind of sleep they get, if any. Alot of the drugs cause chronic insomnia, and the docs will give you a drug to help you sleep.
I also take Robaxin-750, which is a very potent muscle relaxer. I take it due to my jaw from having TMJ, and the surgery to try and correct it, and now the repercussions from it, and I grind and grind and clench and clench, and my face gets all tense everywhere, then can't relax, and then it starts to involve my neck from that, so they give me that to also take.
I would bet on some sort of partial seizure disorder.
But you need to wait for the EEG to come back. Also be aware, too, that EEGS can look normal between seizures, and that just because it comes back as normal, doesn't mean that you don't have it.
If they run all the necessary tests and possibly have admitted you to an EMU, and that comes back negative, then they will probably re-evaulate you and talk about the possibility of Non-epileptic seizures, and then get you into counseling for it.
If it IS epilepsy, they will start you on an AED related to your seizure type, and see how you fare with it.
You need to be made aware, too that drugs don't work instantaneously. Most drugs take up to 3 weeks or longer to take effect. They will also carry side effects, as well. Most of them are not fun to deal with, but you need to stick it out for at least a minimum of a month to see what does occur with the drug. I would gladly have seizure control and still have side effects. Some of the effects dissipate with use, usually in about 1-2 weeks.
I take 1000 mgs of Depakote and 3600 mgs of Neurontin.
The Depakote is in the high range, and the Neurontin is off the charts. I take way over the average adult dosage which is between 1800-2400 mgs.
I have Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures (location in brain where they occur). I also have firing in the deep anterior temporal lobe as well.
I have Epileptic aura, Simple Partial, Complex Partial, and Secondarily Generlized Tonic-Clonic seizures (nocturnal) from that syndrome.
Then I have a reflex epilepsy will ellicit either Absence or Myoclonic seizures or both at the same time from some photic stimulation.
I was born with epilepsy and had myoclonic seizures as an infant and Absence seizures as a child, and also had nocturnal Grand Mals, as well.
It all pretty much stayed with me, except for the addition of the reflex stuff.
I wear a special helmet on the days I am havign trouble with the Myoclonic seizures, and I have a bracelet on all the time, that never comes off for ANY REASON, and a medical card in my wallet, that has all of my medical info.
If you get diagnosed with it, you may want to think about medical ID.
Good luck,
Nancy
To me it sounds like you are having a partial seizure of some sort.
If your brother has it, then there is a tendancy for it to occur in your family whether it be on mom's side or dad's side. Somewhere someone or multiple people have it.
Yes, more than one sibling in a family can have it, too.
HOWEVER, your brother has a type that will spontaneously remit by no later than age 15 years old. Benign Rolandic Childhood Epilepsy with Centro-Tempro spikes is an inheritied form of epilepsy that is grown out of. It is also mainly found in males, and not females.
In partial seizures, people can hear color and feel sounds as part of their seizure.
Simple Partial seizures have somatosensory symptoms--feeling of a breeze, light flashes, visual hallucinations, visual disortions such as macropsia, auditory things such as buzzing, clanging, ringing, olfactory, gustatory, and vertiginous symptoms. Autonomic symptoms include the famous epigastric rising sensation, sweating, flushing, goosebumps, dilation of pupils. Psychic symptoms include fear, anger, agression, joy, elation, anxiety, panic, dreamy states, jamais vu and deja vu.
Complex Partial seizures last for 1-3 minutes, where as Simple Partial seizures last for an average of 10-30 seconds.
Complex Partial seizures include such things as automatisms--lip smacking, swallowing sounds, picking and fumbling at clothes, staring, scessation of speech, walking around aimlessly or in circles, talking nonsence, not responsive, can't carry on a conversation with another person, but will respond to calm simple directions, have NO recollection afterwards.
In people with partial seizures, at least half of them also have Secondarily Generlized TCs.
As for your sleep. People with epilepsy do have very vivid dreams, and the added meds make them more vivid. Ever since being medicated, I have had more nightmares, than I ever had my whole life, and I have only been medicated since January of 2001.
People with epilepsy have sleeping problems as well. I have to take a sedative-hypnotic called Halcion or generically Triazolam, in order to sleep.
The type of meds they are taking, kind of determines what kind of sleep they get, if any. Alot of the drugs cause chronic insomnia, and the docs will give you a drug to help you sleep.
I also take Robaxin-750, which is a very potent muscle relaxer. I take it due to my jaw from having TMJ, and the surgery to try and correct it, and now the repercussions from it, and I grind and grind and clench and clench, and my face gets all tense everywhere, then can't relax, and then it starts to involve my neck from that, so they give me that to also take.
I would bet on some sort of partial seizure disorder.
But you need to wait for the EEG to come back. Also be aware, too, that EEGS can look normal between seizures, and that just because it comes back as normal, doesn't mean that you don't have it.
If they run all the necessary tests and possibly have admitted you to an EMU, and that comes back negative, then they will probably re-evaulate you and talk about the possibility of Non-epileptic seizures, and then get you into counseling for it.
If it IS epilepsy, they will start you on an AED related to your seizure type, and see how you fare with it.
You need to be made aware, too that drugs don't work instantaneously. Most drugs take up to 3 weeks or longer to take effect. They will also carry side effects, as well. Most of them are not fun to deal with, but you need to stick it out for at least a minimum of a month to see what does occur with the drug. I would gladly have seizure control and still have side effects. Some of the effects dissipate with use, usually in about 1-2 weeks.
I take 1000 mgs of Depakote and 3600 mgs of Neurontin.
The Depakote is in the high range, and the Neurontin is off the charts. I take way over the average adult dosage which is between 1800-2400 mgs.
I have Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures (location in brain where they occur). I also have firing in the deep anterior temporal lobe as well.
I have Epileptic aura, Simple Partial, Complex Partial, and Secondarily Generlized Tonic-Clonic seizures (nocturnal) from that syndrome.
Then I have a reflex epilepsy will ellicit either Absence or Myoclonic seizures or both at the same time from some photic stimulation.
I was born with epilepsy and had myoclonic seizures as an infant and Absence seizures as a child, and also had nocturnal Grand Mals, as well.
It all pretty much stayed with me, except for the addition of the reflex stuff.
I wear a special helmet on the days I am havign trouble with the Myoclonic seizures, and I have a bracelet on all the time, that never comes off for ANY REASON, and a medical card in my wallet, that has all of my medical info.
If you get diagnosed with it, you may want to think about medical ID.
Good luck,
Nancy