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  #1  
Old 06-07-2013, 09:23 PM
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Nocturnal Seizures


OK, I've already introduced myself once. I know this is the introductions area but I didn't see an appropriate area to ask these sorts of questions. I don't quite recall all of my introduction, but based on my memories from a few weeks ago I was pretty adamant that my seizures were an isolated incident and I wasn't going to be taking any of these meds the docs were suggesting. VERY shortly after, I had another complex partial and this time while my kids were staying with us. (Young kids, I share custody with my ex)

SO, after that night and like 4 more seizures in the last couple of weeks, I started taking Keppra (500mg 2x a day) and am ready to admit that, alright, at 41yrs old my brain has decided to have seizures on a fairly regular basis, so I guess I officially have epilepsy.

My seizures are ALL at night. I want to talk to others who have this nocturnal shit going on. I'm not really too freaked out about it because it seems like, even though it's a pain in the ass, and the shoulders, and the neck sometimes, many others who have tonic/clonic style seizures have it much worse than me. I had two of those to kick off this journey and they SUCKED!

So other than looking for direction about where else I should ask these sorts of questions, are there any others out there that started having seizures so late in life with ALL negative tests? Any others with ONLY nocturnal and 90% complex partial upon waking?

The doctors haven't been able to tell me much other than, "Here, swallow these pills." Surely though, someone else has had this same thing happen.

Thanks for listening - Jason
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Old 06-08-2013, 12:21 AM
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Hi Jason, I haven't had the negative tests...all mine have been positive but I can share in your nocturnal seizures. Mine are also about 80% at night and complex partials with secondary generalized seizures. So, every once in a while I'll have a t/c but not often.
Nocturnals are difficult to deal with because I'm exhausted all freakin day and I have to try to function. I know it's a hard decision to take the meds but I hope the Keppra helps you. That was the first one they put me on, too. It didn't do anything for me, so they switched me a few months later.
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Old 06-08-2013, 08:34 PM
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Jason --

Have the docs done an overnight sleep study or been tested for sleep apnea? Sleep apnea often co-occurs with nocturnal seizures and can trigger them or make them worse.
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Old 07-02-2013, 07:16 PM
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Hello Jason and Brandi,
I'm very new to the forum and am having episodes in between sleep stages. Is this what is happening to you both? Can you both explain exactly what you hear, see, feel right before the episode happens? I'd like to compare notes with you both. I should had that I have sleep apnea, but have not using the cpap machine for years. I too am totally exhausted during the day. I'd love to hear if you have noticed any triggers and/or precursors, are you awake...etc. everything. Then I will tell you my episodes. Thanks! Diane
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Old 07-02-2013, 07:55 PM
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Hi Diane, I have nights when I experience amnesia and nights when I wake up from my seizures. On the nights when I experience amnesia, I rely on what my daughter tells me the next morning as well as the bruises and sore muscles I wake up to. From what she says: I get out of bed and wander the house, I may run, stomp, open and shut drawers, yell, moan, act as if I'm in a nightmare state, act afraid, jump around a lot. I nearly always wake to unexplained bruises on my legs and arms.

On the nights that I wake from my episodes: I experience auditory hallucinations that are frightening and so loud it is deafening. I hear the same noise night after night after night and it's always someone entering my home. I always wake to fear. The same door slams shut over and over. That's one seizure. I also wake to my arm in the air (that one's weird). I also have tonic seizures, where my entire body gets stiff as a board for (I don't know how long) because I wake up as I'm collapsing. I always wake up sore the next day, as if I got a heck of a work out at the gym. I also have myoclonics as I'm falling asleep and waking up, but those don't bother me. At least, they don't keep me awake at night.

I know what my usual triggers are such as lack of sleep, not taking my meds every 12 hours, not staying hydrated and out of the heat, alcohol, etc. I also have a lot of seizures around my period/ovulation. But, like right now for instance....I've had a crapload of seizures ALL week and it's not letting up, for no reason that I can see. It's so confusing and frustrating sometimes, to find the reasons why the threshold lowers out of the blue.

I'm looking forward to hearing your experiences
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Old 07-02-2013, 09:44 PM
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Hi Brandi, Diane, Jason, and anyone that I may have missed. I am new to this sight. I am forty-nine years old and I used to have terrible night time seizures all night long. I have complex partial frontal lobe seizures. When I had my VNS implanted these aggressive seizures stopped. I still have seizures in my sleep. They are not as violent and don't occur all night. I know I have them because there are black marks on the wall from scraping the remote against the wall. I don't know if this helps. Have a great fourth of July everyone!
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Old 07-02-2013, 10:02 PM
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Hi I was referred to our local teaching university hospital for VNS a couple of months ago. The neurosurgeon reviewed my case and we have decided to move forward with temporal lobe resection instead. I have the video EEG and functional MRI this month. You are right, they last all night long. My ambulatory EEG showed my seizures began the moment I fell asleep and continued until I woke. Even now....when I wake up every morning, just like clockwork I can expect to hear the door shut over and over and over again for at least a minute or two until my brain settles down. It's maddening!!

Question: Were your nocturnal seizures violent? Or, frightening?
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Old 07-03-2013, 03:35 PM
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Brandi, gosh....after hearing about your episodes...mine seem so insignificant....but...my goal is to find out what is making me so fatigued. I'm so sorry for all your suffering. Anyway, now to share. During my awake hours, I randomly hear music. Not every day. When I sleep is when I get other symptoms. Years ago I approached my sleep specialist about seeing things at night and he said the were hypnogogic hallucinations and shrugged them off, not even exploring the possibility that I might have had a seizure. I then explored the paranormal aspects of this episode for years and years. Something about that aspect didn't fit right. I wasn't able to control bad experiences like other people who were psychically sensitive. One episode stuck in my mind and that was the chattering and severe gnashing of my teeth. It was so severe that I went to a neurologist who did a EEG which came out normal. I was so disgusted that I never went back. I'd say the last two years the episodes are much more frequent. Last year I woke up with a chipped front tooth. This is an explanation of a typical episode. I wake up and hear loud music or a man's voice talking very rapidly, then I hear a metallic noise similar to a cricket. I then become frightened. Then I start to vibrate hard, mostly on the right side. I have my eyes open. I can see things look a bit warped, sometimes the colors are greyish or recently orange. I smell nothing unusual. When the vibration stops, there is always a person in the room with me. I can communicate with them, but only for seconds. This is where I thought I might be having a psychic communication, but through researching about seizures, I have read that you do hallucinate. Then I feel like I am being sucked back into my body. There is a very slight shift sensation of awareness. I can have up to seven of these episodes, back to back. Going in and out. It leaves me nauseous.

I have had hallucinations where I have been attacked physically. But that was years ago. And when I wake up, I can actually feel the pain from the slap I got. I have a variant of symptoms that are precursors, but what I explained above is the typical. I've had knocking on my door, my name called, a gravel sounding walking, my feet pulled or poked.

The hallucinations aren't that uncomfortable in their content anymore, because I've learned to control them by coaching myself before I go to sleep on how to handle them. But the feeling of doom or frightened that occurs during the onset of the episode, I was NEVER able to change that feeling into not being afraid.

So, with the chipped front tooth I approached my endocrinologist and explained to him all this and he said that it sounded like the classic simple partial seizure and is referring me to a neurologist. I do have sleep apnea, but no longer use the cpap machine. I had these episodes prior to diagnosis and while I was wearing the cpap. I do have thyroid disease.

Are nocturnal seizures the same as simple partial seizures? Thank you for sharing with me. I can remember getting some kind of sensation even as a very little girl. When I lay in bed, I felt someone stroking the top of my head. This would happen often.

Did you say that you had a sleep study? Diane
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Old 07-03-2013, 03:53 PM
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Quote :
Are nocturnal seizures the same as simple partial seizures?
Nocturnal seizures can take all the different forms (myoclonic, simple partial, complex partial, tonic-clonic) that daytime ones can. So the classification is more by what happens in them and what part of the brain is involved, rather than whether it occurs during the day or at night.

A seizure is called a Simple Partial if you're fully aware/conscious during it, and the symptoms are unusual sensory distortions of one sort another.

A seizure is called a Complex Partial if you're only semi-conscious or aware. During a complex partial, it can be a bit like sleepwalking -- you may be talking or moving, but not fully aware or in control of what you're saying or doing. Sometimes people make automatic movements with their hands or smack their lips.

If you're very fatigued during the day, definitely pursue the idea of a sleep study. You may find that the apnea is waking you up hundreds of times during the night, or that seizures are preventing you from getting enough REM sleep.
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Old 07-03-2013, 04:03 PM
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Nakamova, Thank you for that explanation. Years ago my sleep study revealed the sleep apnea and a enormous amount of alpha waves in all level of sleep. I woke up 42 times per minute and held my breath up to 36 seconds. I had the worse headaches upon waking on the top of my head. I'm sure the neurologist will do a MRI and a sleep study. I'll push for it if he doesn't.
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Old 07-03-2013, 04:38 PM
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Thanks for sharing your experiences, Diane. I'm glad that you are being referred back to a neurologist and hopeful that you'll get to the bottom of what's going on. Although my initial EEG was positive, what was especially helpful was the 72hr ambulatory EEG. During this study, I had a lot of seizure activity. I wandered in the middle of the night (I strapped the device to my side so I wouldn't pull out the leads), and according to my doctor I was seizing in clusters throughout the night. Hopefully you can do the 72hr EEG and get some answers.
We have a lot of similarities, although I don't experience exactly the same.

Although I'm not fighting anything/anyone when I'm in a conscious state, I am when I'm in my amnesia state. Like you said, you can feel the pain of being slapped. I wake the next morning to absolutely no memory of getting out of bed, but my daughter will tell me the stories. Then, I'll start to look for bruises. I'll always have the same defense bruises on my forearms, as if I raised my arms to protect my face. Of course, I know that didn't happen since I'm here alone...what I think I'm doing is slamming them against something. But I don't know why I get violent when I'm usually such a mellow person.

I've read that auditory hallucinations are involved in the temporal lobe and visual hallucinations are involved in the frontal lobe. I spoke to my doctor about my closing door sound and both my neurologist as well as the neurosurgeon said it's very normal for where my seizure focus is located. My focus is in the medial posterior section....whatever that means. Close to where stored sounds are, I guess.

Thank you for sharing your experiences with me. We have a lot in common and I sure hope you get some answers from this new neurologist, Diane.
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Old 07-03-2013, 04:58 PM
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Brandi, God bless you in all you do! And this forum is such a blessing! Whatever feedback I get, I will write about it in this forum...because like it has helped me to connect with others that are similar...it will help the next person that connects with what I have experienced. Thanks again
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Old 07-03-2013, 05:14 PM
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I thank my lucky stars I stumbled across this forum! I've learned so much and feel so much better since meeting everyone here. I was a mess when I came here, trying to make sense of some of the crazy things I was doing in my sleep! I'd be in the loony-bin, for sure.
It's nice to meet you!
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Old 07-03-2013, 05:15 PM
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same here, brandi!
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Old 07-07-2013, 03:48 AM
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Brandi: I too have had the 72 hour EEG study up in Birmingham University Hospital, Alabama, back in May of 2011 to see if I was a candidate for the VNS. From the moment the leads went on, the eeg tester stayed crazy the whole time. I was having constant seizure activity on a 24 hour basis however I never had a full blown Grand-mal as they had hoped, as they wanted to see what I did during the seizure activity. At the time, I was on Depakote ER 3000 mg daily, and Vimpat 500 mg daily (which caused me to gain 80 lbs). Well at the end of the whole process, we found out that I wouldn't be a candidate for it as the type of seizure activity I have probably wouldn't even work on me. They told me that I have severe activity going from the left to right side of the brain and back. They also said that no matter what type of meds I take the seizures will be there and there wasn't anything at this time they could do for me. However, they did change up my meds to Depakote ER 2000 mg daily, and Zonegran 400 mg daily (which caused me to lose that 80 lbs! ) They also gave me .05 mg of Ativan, due to the fact that normally when I have a Grand-mal I will have another a couple hours later, so the Ativan helps.
As far as the Nocturnal seizures, I too experience these occasionally, and I know that I have had one especially because I will have bitten the right side of my tongue, and I too am totally exhausted all day following it, and I mostly want to sleep. I am curious about your surgery you are having as I have considered it myself but afraid to do so as the docs say some of my activity is near my memory area, and I would hate to lose memory of my life, well some I could forget, ha! But you know what I mean. I would love to hear your thoughts on any of this. Thanks so much, Terri
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Old 07-07-2013, 09:57 AM
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Good morning Terri, Sounds like we have the same kind of active brain lol Believe me, it's not funny! But I had to chuckle, because I know what you mean...as soon as the leads go on, the technician asks if you are having a seizure and you say, not that I know of!
Dang, you were on a lot of Depakote...I won't complain the next time I take mine.

I'm wondering why you weren't a candidate for the VNS for your generalized seizures? I was told the VNS is great for those who are not a candidate for other types of surgery, such as the temporal lobe resection. In my case, my seizures are beginning in my right posterior temporal lobe and often times spreading to my entire brain (other times not). This makes me a candidate for further testing to see if I can qualify for temporal lobe resection. From what you are saying, your 72hr EEG showed (and your doctor confirmed) that you are not a candidate for resection, but that makes you a perfect candidate for the VNS implant. Is that not the case? If my video EEG (or other tests) show I am not a good candidate for resection, I will do VNS instead and the neurosurgeon ok'ed it.

Wouldn't it be nice if we could pick and choose the parts of our memory we could pluck out with a knife? haha "Please take my first marriage", "How about that one time I got drunk and wound up in jail?" Unfortunately, I do think it's a risk that we take but we do go through so much testing to ensure that the tissue they remove is the damaged tissue and not the healthy tissue we need. I literally just started this process a couple months ago, so I'm still learning a lot. Personally, I've had a hard life. My childhood was very abusive and my adult life has been difficult. I worked really hard to recover from what I lived through. So, I'm not afraid of losing memory. I have 4 beautiful adult children and a grandbaby that I don't want to forget....but everything else I don't care much about. So, I guess it is a value thing
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Old 07-07-2013, 12:32 PM
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My thoughts exactly, why wouldn't I be a candidate for the VNS or the very least this other type of surgery you are talking of? I never could understand it myself. They did say maybe in the future I would be but not at this time, they also said they would have to remove an area where my memory was and it would be a delicate procedure, one I would have to truly consider carefully. So I believe that's why I backed away from the idea altogether and just hoped this new grouping of meds would work. One other thing, I too had an abusive childhood along with a hard adult life, I'm finally in my third and final marriage and it's been great so far! I consider my life blessed beyond what I could ever ask for. I would like to keep in touch as it does sound like we are a lot alike. Lol! Brain to brain!! Thanks so much, Terri
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Old 07-07-2013, 12:47 PM
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We will definitely keep in touch!
Congratulations on your marriage...what a blessing! I truly hope the med-change helps to reduce your seizures. And if not, that you are able to work with your doctor to consider other options. It makes life really unbearable when your seizures are out of control...I totally get it. My body still hurts from a couple nights ago.
Too bad we can't give our abusers E instead, huh? hehehe *evil grin*
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Old 07-07-2013, 02:25 PM
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Hi-ya Jason. I have nocturnal seizures - simple partials and complex partials. They came on in my late forties, but looking back, I probably had them in my teens and mid twenties. Happy to share if you PM me
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Old 07-27-2013, 09:46 AM
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Ok, so I am coming to realization that everything I have been experiencing over the years and most obviously the past 3 years is most likely E, so I am exploring every avenue of where im having "turns" and reading this thread, I also believe im having night time episodes. altho I have no idea what "kind" they are, I have had the bed shaking feeling and not knowing if im awake or not, accompanied by what feels like im falling, as I fall asleep I get the entire body jerk that wakes me with a racing heart and sometimes wake scared to death of I don't know what, felt like crawling skin / cold tingling feeling or something grabbing my feet, and also the feeling that im watching myself ?!? the more I write and remember these things really make me feel like im crazy I often wake up with massive headaches and just achy, don't think I have ever bitten my tongue but my jaw and body are often stiff and achy, then im kinda groggy all day like I cant understand anything im functioning but no ones really fully home ..... ugh its draining thinking about it haha
anyone know what this MAY be? thank you again guys
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