Out of Body -Which Bed and Why?

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All of the tim I am havening a sense of out of body experiences......not tyhe ones in which you are up on the celing looking down on yourself. But ones where, you can physically move and visiallu see your body parts moving and they are controlled well but you don't feel like you're fully at the wheel. It's a sense of numbnessm, that they are floating (in a sense)...very strange, Right now I am on 1500/Keppra, 400/Topamax, 600/Lamictal, 20/Lexapro, 2/Ativan per day
 
Thats one hell of a combo they have you on there. Probably the reason you feel you are floating. Topamax AND Lamictal? Never heard of that.
 
I'm new here (I just posted in the foyer) but I am also on very high doeses of Lamictal (800mg's 2x daily) and Topamax (150mg's 2x daily) the Doc just started me on Keppra (building up to 1500mg's 2x daily) today as a matter a fact. That said I am very interested in hearing more about this and hope you keep this thread updated. I'm always nervous when they screw with my meds.
 
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All of the tim I am havening a sense of out of body experiences......not tyhe ones in which you are up on the celing looking down on yourself. But ones where, you can physically move and visiallu see your body parts moving and they are controlled well but you don't feel like you're fully at the wheel. It's a sense of numbnessm, that they are floating (in a sense)...very strange, Right now I am on 1500/Keppra, 400/Topamax, 600/Lamictal, 20/Lexapro, 2/Ativan per day

Hi Mike,

I'm curious. What mg dosage are you taking with Ativan? I see a lot of people here who take Ativan. It rather surprises to me that this is prescribed for people with seizure disorders, and especially those with TLE, who could also be prone to fear, hallucinations, and/or depression due to the disorder.

Ativan (lorazepam)

Call your doctor at once if you have any of these serious side effects:

confusion, depressed mood, thoughts of suicide or hurting yourself
hyperactivity, agitation, hostility;
hallucinations; or
feeling light-headed, fainting.


Less serious side effects may include:

drowsiness, dizziness,... Source

Your symptoms may return when you stop using Ativan after using it over a long period of time. You may also have seizures or withdrawal symptoms when you stop using Ativan. Withdrawal symptoms may include tremor, sweating, muscle cramps, stomach pain, vomiting, unusual thoughts or behavior, and seizure (convulsions).

Several years before I was diagnosed with epilepsy, I was diagnose with situational depression. My doctor put me on an anti-depressant. It was causing me to climb the walls, so to speak, so rather than changing out my anti-depressant, I was prescribed 2 mg's of Ativan, twice a day. I should have seen the red flag when the pharmacy had to special order that dosage.

I alerted my doctor that I was having 'weird' experiences, OBE type feelings, and major flashbacks that were negative in nature. My depression seemed to be getting worse. I ended up having a major seizure, but wouldn't know it for a few years. I was never diagnosed as having a seizure during that ordeal, which blows my mind, when there were obvious physical signs. This was in the late 90's. I didn't show up for work one day, and my employer at the time became very concerned. When they found me, I way laying in bed and had foam coming out of my mouth. Still the doctors missed this and didn't connect the dots. I was in ICU for a week. I'm grateful that my life was saved, as it was touch and go for a while, but it was incompetence on the doctors part (lack of education about seizure disorders) that put me there in the first place. They assumed my symptoms were caused by an adverse drug reaction. Duh.

I am not sharing this to cause anyone alarm. Everybody's biochemistry is different. It's just that being under a doctors care does not insure your safety with drug interactions, which is obvious by the feedback on this forum. I was certainly not alone. I had to learn that the hard way, unfortunately. In my case, they simply didn't take my concerns seriously. It may not be the Ativan per se, but rather the cocktail that you are on. After that experience, I became drug resistant. Can't even take prescription pain meds without having a negative adverse reaction. Hope you will discuss this with your doctor soon.
 
I see a lot of people here who take Ativan. It rather surprises to me that this is prescribed for people with seizure disorders, and especially those with TLE, who could also be prone to fear, hallucinations, and/or depression due to the disorder.

Ativan is usually used as an emergency medication for status seizures. I have TLE, and my epileptologist has prescribed it for me only when my two other anti seizure meds haven't worked. I've gone status several times, and they've used it in the hospital. I've never used it at home by myself, tho.

msunder,

IMO, you are on too much medication, therefore you are having these "experiences". Call your dr. ASAP.
 
Ativan is usually used as an emergency medication for status seizures. I have TLE, and my epileptologist has prescribed it for me only when my two other anti seizure meds haven't worked. I've gone status several times, and they've used it in the hospital. I've never used it at home by myself, tho.

Hi Cint, thanks for sharing. You have really been through it, dear lady, as I've read several of your posts. It humbles me to read what others have gone though, and that I should feel fortunate that it could be a heck of a lot worse. I think that's why I am particularly guarded with avoiding anything that might increase seizure activity. In my case, my life may have been spared because they didn't know I had epilepsy, perhaps. I wonder what would have happened had they dosed me with more Ativan, had they recognized this as a seizure in the first place. At the time I was admitted, they didn't have the records from my personal physician. During rehab, my doctor told me that the cocktail, with the high does of Ativan, caused me to have a psychotic break. He said that every negative memory (events that had been compartmentalized) came flooding to my conscious, and my mind became overwhelmed and just snapped.

Management of Status Epilepticus
<snipped for emphasis>

Moreover, investigators have reported that status epilepticus often is not considered in patients with altered consciousness in the intensive care setting. In patients with persistent alteration of consciousness for which there is no clear etiology, physicians should be more quickly prepared to obtain electroencephalography to identify status epilepticus. Physicians should rely on a standardized protocol for management of status epilepticus to improve care for this neurologic emergency.

Status epilepticus is an under-recognized health problem associated with substantial morbidity and mortality. An estimated 152,000 cases occur per year in the United States, resulting in 42,000 deaths and an inpatient cost of $3.8 to $7 billion per year

Three new preparations—fosphenytoin, rectal diazepam, and parenteral valproate—have implications for the management of status epilepticus. However, randomized controlled trials show that benzodiazepines (in particular, diazepam and lorazepam) should be the initial drug therapy in patients with status epilepticus. Source - American Family Physician
 
All of your posts have suken and I appreciate them well. Yes I am on alot of anti-convlsants so I don't believe seizures are a huge concern for me and I have had these "out of body" experiences so-to-speak before the Lexapro and Ativan or Xanax. The main thing we are trying to get nunder control right now is my scoial anxiety disorder because of me becoming a teach but not interfere with my ep. meds. kind of a mess. thanks again
 
All of your posts have suken and I appreciate them well. Yes I am on alot of anti-convlsants so I don't believe seizures are a huge concern for me and I have had these "out of body" experiences so-to-speak before the Lexapro and Ativan or Xanax. The main thing we are trying to get nunder control right now is my scoial anxiety disorder because of me becoming a teach but not interfere with my ep. meds. kind of a mess. thanks again

Mike, I wasn't sure if this post was directed at me, but if it was, I thank you most kindly. =)

OK, so you've been having these OBE experiences before the meds. Have you noticed a difference with your OBE's since you started taking the meds? When I was a child, I had OBE's on a regular basis, between the ages of 4 and 10. They use to happen a lot when I was would take a nap. I can remember dreading the feeling because I was very frightened that no one could here me, or see me, but I could see and hear them. As an adult, I've had a few experiences, but they were not like the ones I experienced as a child. Maybe it was because I didn't have fear as an adult...dunno.

I wanted to eliminate the possibility of your experiences being drug induced before I shared this information with you. I still feel you should check with your doctor, just to make sure, though.

Dr. Todd Murphy is a behavioral neuroscientist who also had TLE as a child. I've read just about every paper he's published. Here are a few links you might want to check out when you've got the time.

Out of Body Experiences and the Angular Gyrus of the Brain.

and...

A snippet of his story
My experiences with the temporal lobes of the brain started when I was seven years old. While living in a Catholic orphanage, I came down with temporal lobe epilepsy. Finding myself living in that place, which otherwise was a very good home for children, created a lot of stress, and I think , triggered the disorder.

I was not an orphan, though. The circumstances of my parents' divorce had placed my brothers and I there. We still had a family, and we visited them whenever we could.

One Sunday evening, sitting in my grandmother's dining room, eating vanilla ice cream, I suddenly left my body. I floated just below the ceiling and looked down on my brothers and my father all having their ice-cream. I was completely terrified. I now know that I was feeling fear because the "fear center" in my brain was involved in the process. During the seizure, my thoughts filled the gap. I was very sure that something was wrong with being out of my body. Actually, I was afraid that I would get punished somehow. My upbringing was Catholic; fairly traditional, and nowhere in the Catholic dogma I had learned was there any talk of out-of-body experiences. I felt very sure that out-of- body experiences were not allowed, and if you got caught having one, you'd get in trouble.

So there I was, floating beneath the ceiling, terrified, and wanting nothing more than to get back into my body. I don't know how I did it, but somehow I "willed" myself back into my body. But the seizure was more forceful than I was, and I couldn't stay there. As I remember this experience, which was the most powerful out of body experience I had, I spent some time being in my body and out of it at the same time. Since then, I've read about other experiences like this. But at the time, I thought I was the only one.

I didn't have a lot of out-of- body experiences, but there was another experience that I did have often, and I remember being sure that they happened every single night. I told an adult that I didn't sleep at night, but they refused to believe me.

What would happen was that I wake up in the middle of the night with a feeling that everything was very dense and heavy. I was amazed and frightened at my own strength at being able, say, to move my arm. I laid absolutely still, afraid to use my own body. With my eyes open, I experienced macropsia. Macropsia is a visual illusion that everything around you is very large and very far away. When my eyes were closed, I seemed to be looking into an infinite space. At the center of the space, and unimaginable distance away, there was a point of light. And absolutely brilliant, incredibly powerful light. Its presence before me seemed to have a tremendously emphatic quality; as if it were shouting something at me. I had a strong sense that it was trying to say something very specific. And, whatever it was, I did not want to hear it. I actually has a strong feeling wanted to kill me. Now I know that it was quite a valid perception. That infinite space, and the light that I was seeing, both happen in the near-death-experiences. My intimation that it had something to do with dying was actually quite accurate.

I experienced other strange things during my seizures, but nothing else with quite so much impact. I felt strange electric buzzes and tingles running through my body and a very-difficult-to-describe sense that the inside of my body was white. The word refers to a color, but this was not a visual experience. I "felt" white on the inside. As though it were a sound I was 'seeing'. More/Source
 
yeah it was directed more towards you but i figured i'd toss some thanks out there since i got good info from everyone. i couldn't imagine being that young and having those problems. i didn'r really notice the OBE problems until my topamax was upp'ed from 100 to 400 but i have always had the social anxiety disorder. just sorta kept it on the back burner. my neuro just sad the OBD was from lack of fluids due to the topamax and loss of fluids and salt
 
msuder,
I'm with BigWill on this one... topamax AND lamictal? ...and to TheDude as well. What's going on there? They both treat the same seizure types, a good dose of one should be enough. If it's not, ramp down on one to go on the other. God it's amazing what they'll do to us.
 
msuder,
One would think that all specialists do things along the same lines/for the same reasons. As for what Cint was saying... I too was only given ativan for emergency purposes, never for a daily Rx. Is this part of your AEDs or for anxiety? Either way, Cint's right, doesn't sound good. (((HUGS)))
 
I couldn't agree more with the above comments. Listen to your body. It may be trying to tell you that something is way out of whack, and could very well be life threatening. Here's what Dr. Murphy said as he relived his childhood OBE experience:

I had a strong sense that it was trying to say something very specific. And, whatever it was, I did not want to hear it. I actually had a strong feeling wanted to kill me. Now I know that it was quite a valid perception. That infinite space, and the light that I was seeing, both happen in the near-death-experiences. My intimation that it had something to do with dying was actually quite accurate.
 
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msuder,
I'm with BigWill on this one... topamax AND lamictal? ...and to TheDude as well. What's going on there? They both treat the same seizure types, a good dose of one should be enough. If it's not, ramp down on one to go on the other. God it's amazing what they'll do to us.

IMO
The Doc's I'm seeing don't know what to do I am smart enough to know that. Epilepsy is a relatively new science and for me the way that we've dealt with it is what I call "Shotgun Therapy". Keep throwing more drugs increase and decrease dosages. Kinda like a Long Island Iced Tea I guess they just kept adding too it until it tasted just right. They weren't quite sure what the mix was going to be in the beginning so the just broke out the vodka, gin, tequila and rum. They are all alcohol they all get you drunk.

So one could say Lamictal is like Vodka and Topamax like Rum well we don't quite have the mix right let's keep working on it till we get the tea just right. So now we'll add some Keppra = too Gin and maybe throw in some Adavan = too tequila and BINGO! the perfect drug cocktail or long island iced tea to complete the analogy. Now we've got so many different pills in our systems that we take 2 or more times per day we're zombies. *Just drink the kool-aid and you will be better. sarcasm*
 
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That's a really good analogy, except when Ativan is added to the cocktail, it's like mixing alcohol with a psychoactive drug. When I read all this, it makes me rather grateful to have DRE. My guinea pig days are over with.
 
TheDude,
Okay. BUT. Drinking can be fun and social and relaxing at the end of a long day. Massive drug combos can literally kill you, and I think we have enough on our plates with the seizures. Speaking your language, a long island ice tea shouldn't equal liver failure.
 
I agree with you gtGirl I was in the ER back in April back then I was on 1000 mg's of Lamictal 2x daily in addition to the Topamax. I was unable to stand I was aware of what was going on but was physically unable to function normally. I crawled from the kitchen to the bedroom to find the phone and get dressed. I was and usually am home alone with my 2 year old. I called my mother to come drive me to the ER. I was obviously overdosing and had reached toxic levels (my Lamictal dosage had recently been increased). And now I'm down to 800 mg's 2x daily and they've just introduced Keppra. I'm at my wits end
 
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1000mg 2x a day?!?! WT...? Even when I seen 800 I thought that was huge but OMG. I just started it and they want me topped out at 100 2x a day. And that's after the topamax has been ramped down. 1000?!?! How come so bloody high? And you're on this mix raising a child? I could cry for you, that is overload. So when do they friggin stop? There has to be another way. Surgery? Implant? And Keppra-I wish you the best. I've never been on it but when it was recently brought up I said 'Not a chance.' Too volatile on the mood.
(((HUGS))) to you too. I'm just givin' em' out today - having a crappy one myself.
 
(((HUGS))) to you too. I'm just givin' em' out today - having a crappy one myself.

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