Can epilepsy be positive?

[seetseet]

I have got a weird question anyone who can be bothered reading and replying

Most the times I read forums and information about epilepsy I end up feeling really super down.

But I have found quite a number of times when I have been alone and I get an aura I actually enjoy it, like it is a really deep feeling, like I am immersed in the environment, everything is more intense like scents etc, like some awesome euphoric drug. And because I only have nocturnl grand mals, again when I am alone, I don't know I've had it till I wake up, so again it doesn't affect my life and I don't feel bad that someone has had to live through that dreaded sound and visual of watching a grand mal.

BUT in saying so, if I start to get an aura, when someone is there with me who I know is worried about me having epilepsy, it turns bad, the aura is negative as in it's not a euphoric feeling it's more like when a lift suddenly starts going downwards, like falling and thre aren't good scents it's more bad smells.
And when I know my partner is home, it's harder to fall asleep, I have to sneak around at night, because he is up in a flash because he is paranoid of me having a grand mal. And if I do have one and he was at home than I know as soon as I am up that we're back to square one.

So can there be a connection between seizures being "my little secret" and it being a positiveor OK eexperience
Versus
having someone present or around you that is worried all the time and then have worse experinces?

Like I feel like I can put both negative and positive experiences to use, it helps me see situations in new perspectives, it is an awesome muse when I need inspiration to write....

I know it's a long shot, but I am interested in opinions and or experiences please
Cheersk

 

[Zolt]

Hey Seet,

Personally i prefer to have my seizures alone. To me, it's like a religious moment, scared to death and hope it won't be my last one. Last one, meaning i'll survive it to have more. Not sure how you can enjoy it, but each to there own. I've had it for 9 years and before my current med i'm on, i use to have it during all times of the day and at the worst of times. With my current meds, i control my seizures to come in the mornings, after i wake. That type of control is worth gold to me. Schedule my seizures for mornings please. in the safety of my home.

When people are around during my seizures, that is the worst for me too. Once i was at the bank and i felt one come on, oh my, luckily it turned out to be a small one. So I made it out without making a scene, but people where looking at me funny, they know something was up. I think alone we know we will get though it, but when other are there, we have to worry about there reactions and how it will effect us. I think that is why a lot of Epileptics will stay home more than those that don't have it.

cheers

iano: op:

 

[seetseet]

I get what you mean, I am lucky as because (knock on wood) all my tonic clonic/grand mals have been nocturnal, and there isn't "enjoyment" in those because I can't remember them, I just wake up with blood in my mouth chewed tongue lol, sore muscles hehe.
But auras are way different like it's a weird experience alone but scary one if someone is there because im scared what will happen and what they'll think..

So did you have a tonic clonic in the bank? Or was it another type??

 

[travel bug]

My seizures have never been pleasant, but, disconcerting as they can be, I know others have far worse experiences. I will say that I'm grateful for them though. After my first I found out I had a brain tumor. Nothing was done about it at that time, but doctors were keeping an eye on it. And when I had an increase in frequency or change in seizure type, it always signaled new growth so that something could be done. Without the seizures, my tumor might have progessed to the point that nothing could be done without causing more harm than good.

It's like having a dog that barks as a warning when something is wrong, only instead of barking it bites you in the backside. Helpful but not fun.

 

[MrKap]

seetseet, I was going to post the exact same thread.

Sometimes I notice a cognitive decline with my seizures, but other times it feels as if the seizure has improved my cognition, or mood in some positive way.

Genuinely, I am not trying to induce seizures, but I am at that point where I am not fearing them to the same extent I once did, and even though I may sacrifice a good nights sleep every now and then, I figure the one thing that is my best shot towards full recovery is my own body and it's immuno-defense system.

Some things I've read suggest that some epileptic activity may in fact be the immune system going to work.

So, considering I could be very wrong, I tend to cycle on and off medications at this point in time.

 

[seetseet]

Bingo! I believe a same-ish thing ( at least with my type of epilepsy) because I seemed to have the tc when "too much is too much" and then that's my body's way of getting the break it needs, because I always always have an awesome deep sleep (if I am not shaken awake lol) that I can't otherwise get.
And I would love to just TRY and go off the meds, but at this stage my hubby would kick my butt.
So what king of periods do you go off and back on for, how and why? (If you don't mind answering of course)

 

[MrKap]

Normally I cycle a few weeks at a time. My main interest is healing or stabilizing without needing drugs.

So, when I go on a drug and I respond, I discontinue a few weeks to a month later to discover if how much remission occurs, whether things have gotten better or worse.

I do that because I fear becoming dependent on any particular drug.

I understand there is a neuroplastic aspect to prescription drugs, so I am also in the belief that if I respond well with one drug, and there is another drug out there to which I respond, then using both at seperate times may provide me with more "stable" recovery as my brain has to fight for equilibrium in different ways after discontinuation of any single drug. As opposed to a single drug after long term use inducing long term and more slowly reversible side effects.

It is like pumping the brakes to slow down, rather than slamming on the breaks each and everytime, if that makes any sense as an analogy.

For example, valproic acid, I respond, but not fully as in it changes the quality of my seizures while reducing them, so that's a bonus, and a drug I wish to continue with, but knowing there are side effects from long term use, I want to cycle off that, and cycle onto another after an adjustment period, and give my body time to repair itself from any collateral damage that may occurring.

 

[seetseet]

I am worried about the drug dependence too, I am on keppra, but most of the time I can't forget it because if I forget to take it an hour and a half later, it feels like I had drank 6 expresso coffees and when I first started taking them it was like being body stoned 24/7.
What meds are you on?

 

[MrKap]

Yeah, by biggest concerns about keppra, which I want to go on and try for a while, is what I have noticed others complain about regarding the rage (kepprage), and what I suspect are potentially damaging loads onto the heart.

Here's a repost from somewhere else where I try to justify that line of thinking.

Kepprage. It is totally real.

www . epilepsy . com / node / 984898

The generic Keppra came from a different company/country every month, causing heart attack symptoms. After stress tests and other cardiac tests proved my heart was fine and the symptoms were likely due to varying fillers in the generic, my doctor said to switch to a pharmacy that would purchase the generic med from a U.S. company as they are monitored by the FDA.

www . ncbi . nlm . nih . gov / pubmed / 22881836

Genetic variation in dopaminergic activity is associated with the risk for psychiatric side effects of levetiracetam.

Levetiracetam (LEV) is a highly effective antiepileptic agent. A clinically relevant psychiatric complication of LEV treatment, however, is the provocation of irritability and aggression. Recent behavioral research indicates that personality traits may predispose to these side effects. To assess the genetic basis of the adverse psychotropic profile of LEV, a candidate gene-based two-stage association study was conducted.

Stage 1 analysis included 290 patients with epilepsy and revealed a higher load of adverse psychotropic side effects of LEV in patients carrying genetic variants associated with decreased dopaminergic activity: rs1611115 (dopamine-β-hydroxylase, DBH), rs4680 (catechol-O-methyltransferase, COMT), and rs1800497 (dopamine receptor D2-associated ANKK1 TAQ-1A). Stage II analysis including 100 patients with epilepsy, and joint meta-analysis confirmed the effect of the rs1800497 polymorphism (Bonferroni corrected significance of the joint meta-analysis, p = 0.0096).

www . ncbi . nlm . nih . gov / pubmed / 20676967

Dopamine receptor subtypes in the native human heart.

The present study first time detected D1-D5 dopamine receptor subtypes in the native human heart simultaneously, found presence of D1, D2, D4, and D5 in cardiac tissues
Remember that other guy who was waiting for his next big one. That's probably where you are headed. Only a hunch.

www . ncbi . nlm . nih . gov / pubmed / 20555255

D2 receptor antagonists have reduced aggression in various species and animal models.

news . harvard . edu / gazette / 2006 / 09.21 / 01-anger . html

Anger can break your heart - A hostile heart is a vulnerable heart

Angry older men, as stereotypes go, are most vulnerable. But excessive ire can take a toll at any age. Researchers at Johns Hopkins School of Medicine tracked 1,055 medical students for 36 years. Compared with cooler heads, the hotheads were six times more likely to suffer heart attacks by age 55 and three times more likely to develop any form of heart or blood vessel disease.

I am not formally trained in anything so, yeah, it is a weak line of thinking, but yeah, there is some common sense in this line of thinking. Long term use of drugs induce long term side effects. What they are and who they will effect is probably different from one person to the next.


I am not on any meds at the moment. I came off valproic acid about a two months ago, and immediately went on low thc, high terpene content marijuana for a month. I have cycled off both, and am about two weeks with no meds, but I most certainly am going back on something soon. Probably a racetam for a few weeks.

I do however fear the potential damaging effects to the liver that valproic acid is known for, and the potentially dumbing effects that marijuana is known for.

Not to go too far off the original topic. There are people who are linking immune system repair to seizures, so, maybe taking time off, to endure some seizure activity isn't all that bad. I truly do not know with any absolute certainty.

www . colorado . edu / news / releases / 2009 / 07 / 06 / cu-boulder-study-finds-brains-immune-system-may-cause-chronic-seizures

However, recent research has shown that micro-glial cells may play a major role in seizures. Researchers have found that glial cells, which are supportive cells that also constitute a major part of the brain's immune system, cluster within areas in the brain when a severe brain injury has occurred.

"When there has been serious damage to the brain, such as a head injury or infection, the immune system is activated and tries to counteract the damage and repair it," Barth said. "These glial cells migrate to the damaged area and release chemicals called cytokines that, unfortunately, also profoundly increase the excitability of the neurons that they are near.

Everyone has a different theory, right?


www . scientificamerican . com / article / brains-gilal-cells-spark-seizures /

When neurons fire together uncontrollably, epileptic seizures ensue. Yet what sparks the cells to go haywire in the first place? In January scientists found an unexpected answer. When glial cells in the cortex of fruit flies cannot properly control their calcium levels, they leave neighboring neurons vulnerable to seizures.

 

[skyfire322]

...When people are around during my seizures, that is the worst for me too.

Couldn't agree more. When you snap out of everything and see 10 people looking down at you, barely giving you any room to breathe... It's frustrating. I understand they're concerned, and want to do everything in their power to keep me safe, but it gets a little annoying after awhile.

Oddly, when I have auras or a partial, it's like I'm almost in a dream-like state which separates me from the world for a few minutes.

I think for me, as hard as it is, accepting who I am and what I have has really increased my positiveness. It's a journey that only I can take in the end.

 

[seetseet]

Thanks for your reply, it's good to know there are other people out there in smilar situations.
Lol up until today the only one I had heard of is one I saw on YouTube and as far I can remember old mate was out in the desert and thought he was God and his dad (I think) was trying to get him to understand that no he wasnt. That sort of scared the sht out me hehe
Thanks again!

 

[lindsayschu2]

I can relate. When I was a little girl and first started having intense complex partials, I liked them for a while. They were weird, otherworldly and intense experiences and for a short while I liked them. It didn't last long and the dreams or whatever they were started to feel bad and evil (I know it may sound weird to some but mine were like actual dreams I was remembering and there was often another person or 'presence' in them, and that presence became threatening--that was always the only thing I could remember about the dream)--but I remember for a while they were more on the euphoric end.

 

[Belinda5000]

In my case I find nothing about epilepsy positive.I need the drugs or I'll be in the hospital because of I'll end end up status with out my drugs.
The only postive thing that has happened is I've taught A lot of ppl what to do in case I seize.More people know whow what to if I have a seizure. My congregation and the ppl who have seen me go down.I've explained to them only time you call 911 is when I'm hurt and bleeding profusely.Ambulanca has only been called when I have gone into tonic clonic once and I was hitting my head against cement wall.
Belinda

 

[Nakamova]

seetseet, you might be interested in this recent thread:
http://www.coping-with-epilepsy.com/forums/f23/anyone-ever-feel-better-after-seizure-24847/

 

[masterjen]

I don't know if this is the kind of answer you are looking for seetseet, but my being diagnosed with this relatively new medical issue (I was diagnosed only 5 years ago but with suspicious symptoms before that) has made me a lot more empathetic towards others with medical problems or "disabilities" to use that rather unfavorable word. So yes, this is a "positive" to having seizures.

 

[AlohaBird]

For me it was not so much "positive or negative" but rather moving from a mindset of "My body is broken and there's nothing I can do about it." to one of "My body is trying to tell me something. Maybe I should listen". The brain has seizures because they are less harmful than a total glutamate cascade which ends in death. The exitotoxins glutamate and aspartamate build up at your synapses and need to get burned up and shook loose. A seizure is less destructive than death.

It's like how I see having a fever. It's not a malady in itself. It's the body's way of dealing with something pathological. The body is trying to protect itself.

 

[masterjen]

For me it was not so much "positive or negative" but rather moving from a mindset of "My body is broken and there's nothing I can do about it." to one of "My body is trying to tell me something. Maybe I should listen". The brain has seizures because they are less harmful than a total glutamate cascade which ends in death. The exitotoxins glutamate and aspartamate build up at your synapses and need to get burned up and shook loose. A seizure is less destructive than death.

It's like how I see having a fever. It's not a malady in itself. It's the body's way of dealing with something pathological. The body is trying to protect itself.

Interesting perspective I haven't read before. I have often believed seizures/epilepsy are a symptom rather than the malady itself, as has proven to be the case for me (one of these rare genetic conditions causing neurotransmitter deficits). I often wonder if more doctors spent time really trying to find the root cause of someone's seizures (when there is no obvious brain lesion, etc.) as one of mine did, that a true cause could really be found.

 

[MrKap]

So, scanning research papers, it seems they haven't exactly determined if there is significant neuronal death during a seizure, or if it is due to necrosis after death (in the neo-cortex).

Perhaps epileptic people are lucky in the sense that we have brains that work in overdrive to correct problems in the body.

Maybe epileptic attacks are really nothing more than the bodies own natural processes at work to heal ourselves better.

www . ncbi . nlm . nih . gov / pubmed / 18247188

[Neuronal death in the neocortex of drug resistant temporal lobe epilepsy patients].

This group of evidence speaks in favor of the existence of an effect on the neuronal number in the neocortex layer IV that may be associated with noncaspase dependent apoptotic death process, without being able to rule out death by necrosis.

I for example get "vibrations" in my body as well as in my brain. This morning my chest was in what I consider an epileptic attack, however it did not hurt me, the frequency at which the vibrations occurred were regular, they were not without rhyme. Instead of thinking it is my heart having issues I have started to think perhaps it is my lymphatics which are the source of the vibrations.

If my heart were having genuine problems, i might expect palpitations and irregular beats, or the heart might stop. Instead my epileptic attacks are more like pushing through harder with more effort or strength.

Another thing is that by manually pressing down on my vagus nerve seems to cease the vibrations temporarily, however I do wonder if I am stimulating the nerve, or blocking the nerve, preventing nerve signals from travelling. If I keep it pressed they eventually return so i do wonder if that is my nervous system ramping up to get past a kink in the hose, or if my nerve is failing and pressing it helps push it back into operation.

Maybe my lymphs are gunked up? Maybe my epilepsy is a hyper sensitivity to my bodily processes? Maybe I can feel more than others? Maybe my body vibrates in a manner which if I can remove anxiety which goes along with the vibrations, they may be a more pleasant part of my life? Perhaps they are healing vibrations. Similar to ancient chakra healing religions.

If they are a healing process, it may help to explain why during periods of rest, or tiredness, I am more prone to them, as that is when our bodies begin repair processes.

I am not a trained scientist, so this line of thinking is probably not without pitfalls.

I mean, if there were no seizure, perhaps our bodies would silently fail and we'd pass on to death, and perhaps the seizure itself is the bodies hard effort to kick it back into gear? All the medications which relieve from epileptic activity really being nothing more than something that assists the body from encountering dangerous situations that would lead to an attack.


Basically everything that Aloha bird is saying.


On this line of thinking, it is why I am not against occasionally using a treatment that temporarily increases my seizure activity. For example, in ancient times, there was a belief that pure natural tree turpentine would heal the body. with me, it increases seizure activity, so I limit that as a treatment option to maybe once a month at most (if that). A couple drops in a tea. It is a substance that in my situation might break up any gunk in my lymphatics (as that is my personal current working theory given all the situations I have mulled over. One of a few.). However I really consider that dangerous, especially since Van Gogh was said to have died drinking the stuff in a mental institution. However, maybe back then that was a viable treatment option. Some things which I have read suggest that it is. Especially with thujone being experimented with in cardiac surgeries to boost the nervous system back to life. positive can be dangerous thinking perhaps, especially on the internet where we all share a syndrome which encompasses any number of root problems. I've seen people ingest significant amounts by comparison to the couple drops in a tea I've done, and they get no epileptic response as a result, so... I could be rubbing a thin rope raw, or I could be loosening crud in my lympathics enough to allow my immune system to work more efficiently or something. Positive outlooks vs negative outlooks are very challenging with this syndrome.

 

[Garbo]

Quick comment because I noticed something about interesting. Someone said that they experienced religiosity, which is very common. Kierkegaard described his seizures as being euphoric before he would come crashing down. I have noticed that several historical figures who had Left Temporal Lobe Epilepsy often had religiosity or feelings of euphoria (obviously not medicated), but then this state would evolve into something else. I think there is a tie to medication, although I am clearly not saying to get off of medication. I just find it to be interesting.

 

[AlohaBird]

I'm coming to see epilepsy as positive in that it forces you to become more aware of what is happening in your own body. Without seizures to warn me I might have continued to do things that could be damaging my overall health like drink, be stressed out, not get enough sleep. I think, if I can get the bulk of the medication out of the equation, epilepsy may actually give me a longer healthier life.
I see our unique neurochemistry as like having a canary in a coal mine. But if the canary is too drugged out of its gourd on phenobarbitol and depakote, it can't tell you anything useful.