Medication: What do we lose?

[walsh]

I want to raise a kind of a deeper and more serious issue. It's something I have thought of a lot recently but it's very important to me.

One of the reasons I'm on the lowest possible dose of Keppra I can tolerate is not because of the side effects of a higher dose, but because I don't want to lower my brain activity. Everyone knows that a lot of great historical figures had epilepsy. Some of my greatest inspirations like Edgar Allan Poe, Napoleon, Vincent van Gogh, Doestoyevsky, Philip K Dick, Caesar, etc.. all had epilepsy at a time where there was no cure. They all still managed to achieve great things, and I have no doubt that their untreated epilepsy was a part of it. The bad side of epilepsy is known to everyone, but I'm sure there is a good side to it. But I also find it strange that there were no prominent scientists with epilepsy.

There must be something in the higher brain activity of epileptics that triggers bursts of creativity and inspiration. After a seizure I am often blessed with a drug-like euphoria, where everything falls together in my mind and I feel like anything is possible. My medication, however, I feel changes me so much. I become dull, lose my creative energy and feel like sleeping a lot. When I experimented going off Keppra the week I had before my seizure showed me how different I was - much more energy and zest. Now back on the meds my memory is terrible, and I feel like doing nothing and achieving nothing.

I wonder what we are losing by medicating ourselves to the point our brains are no longer what they were. What would I be able to achieve without my medicine, and would it be worth putting up with seizures to get to it?

Does anyone else feel this way, or have something to say about it? Any input would be appreciated because it's something i've been thinking about a lot. Thanks!

 

[darkmarkshark]

Medicine may suck, but without I would either be dead or not much different from comatose right now - no doubt about that.

Keppra is terrible with side effects, and I'm considering switching it - I'm very adamant about not going any higher even though its stopping more seizures than anything else so far. I'm learning to work with it. I can't skip meals, no matter how much I want to, or I'm an emotional trainwreck. I can't eat wrong two days in a row or the same happens. My sleep hasn't been normal in a long time but its slowly getting to more reasonable pattern

If you don't lower your brain activity enough, you'll end up with scar tissue that must be removed via surgery. And that has the potential to permanently lower your brain activity far beyond what any seizure medicine would do, and not in a good way. I'm still avoiding learning the statistics of such as I'm not yet ready to face the aspect of surgery

I've had days when I wasn't taking medicine where I felt I was capable of anything - without fail I was highly depressed and suicidal the next day. Both are related to seizures, but I've no idea how. Perhaps the capable feeling is during the seizure, and the depression is the post ictal phase of the same seizure

There has been research on epileptics and creativeness but the only study I read on it failed to find a connection. I tend to get hypergraphia after a large seizure, so if my writing ability ever returns to normal perhaps I can write a good book - maybe title it "ramblings of a psychotic madman" considering I'm most likely to tell people how they wronged me several years ago in some insignificant event when I'm post-ictal


I don't find it the least bit strange that you won't find a prominent scientist with epilepsy on the history books. Working in a lab isn't safe if you don't have your seizures under control. And your results will not be taken seriously by anyone if you were conducting scientific studies and observations while you were having lapses in conciousness or hallucinatory seizures, or even just being believed to have them

 

[sixpack]

I am speaking as a parent of a child with multiple disabilities and seizures.

She started having seizures at age 13. I have seen a change in her behavior, interest in things, etc since being medicated. However even on meds, she has breakthrough seizures. If she was not on meds, she'd like be seizing nearly continually. The negative ramifications of that is simply too great. She must be medicated. I don't know how serious your seizures are but some people do well with biofeedback, diets and some even with homeopathy.

I agree with darksharkmark--having uncontrolled seizures and be a scientist just wouldn't work. My hubby is PH.d chemist. There is simply no chance he would hire or could be hired with uncontrolled e. It would be a company's safety nightmare. Even under the most stringent safety rules, things happen. If someone doesn't screw a cap on tight enough on a chemical sample(for example), the company's safety control is all over it with investigations and everything.

I understand your frustration at being medicated with all of the side effects. I'm sure it can be awful. But I look back at the people you listed Edgar Allen Poe, Vincent Van Gogh et all, well most of them were also pretty messed up people. Poe was an alcoholic and died on the street; Van Gogh committed suicide for example.

 

[Molly97]

I think anyone on any neuro med, whether it's for seizures, or DID, or depression, or bipolar, finds what you are saying to be true.
After being medicated by 15 or so years for all the above, I am currently off meds. Have been for 2 years this month. The first year was pure h*ll, lots of seizures, chronic pain, depression.
Now, I am focused, able to think clearly about 90% of the time, I get things done. I'm back to having a deep interest in the sciences(just watched a PBS show about Fractal Mathematics yesterday and loved it), my creative bent has come again in the form of creative writing and photography.
Yes, for me, the drugs zoned me out. I am better off without them.

 

[Molly97]

Ok. I have to say something here.
Sixpack talks about these creative people as being messed up. I agree that a lot of creative folks have more than their fair share of bouts with depression, mania, etc.

I spent years, wanting so much to write, being so fearful of the act of writing itself sending me down a rabbit hole I didn't want to visit. I looked at Hemingway as an example of that. Then I looked at the great artists, the great musicians, the great authors. They all had their demons. And I was left asking myself if it was the depression, mania,etc. that drove their creativity, or was it their creativity that drove them into depression, etc?

For myself, with the depression, mania, etc under control, I can create. The seizures interfere with that process only to the extent that I lose valuable time having the whole seizure activity, time I could be spending on being creative.

Sixpack,
I am not insensitive to you or to anyone here who, because of constant seizing, need meds. I just know that meds are not for me. And to answer a question I know you must have, in the last six months I have gone from daily seizures to one a week by adjusting my diet. Works for me. People are different.

 

[sixpack]

Ok. I have to say something here.
Sixpack talks about these creative people as being messed up. I agree that a ive.

by being messed I mean they've not had easy lives living with their depression/epilepsy. It took a pretty tough toll on their lives.

Sixpack,
I am not insensitive to you or to anyone here who, because of constant seizing, need meds. I just know that meds are not for me. And to answer a question I know you must have, in the last six months I have gone from daily seizures to one a week by adjusting my diet. Works for me. People are different.

so as I mentioned in my first post some people's seizures maybe controlled by biofeedback, diet etc. If, in your case, it works for you and you feel you are doing better, then that's great. The OP asked for views and that's what this forum is all about. My post was NOT knocking anybody that chooses an alternative method. It was about my daughter's, my family and my experience.

 

[Molly97]

Sixpack,
I agree completely with you. We are not at odds here. The creativity issue is just so personal and right now, uppermost in my mind for reasons I'll not go into.

 

[Belinda5000]

If I didn't have my meds I'd have gone status long ago.
I'm now just seizing all the time and never knowing when it may happen.
onder:
My neuros secretary not giving him the messages.
I'm having no luck finding another one I can get to.

SO I guessI have start busting my head open again.
To get attention from these stupid docs.
I'm thinking of going cold turkey on the clonazepam but I wont tell my neuro.
:e::twocents::rock:

Belinda

 

[skillefer]

Hmm....interesting thread. I do sometimes wonder what would have happened if we lived in a world where medications for E did not exist. Would I still paint? Yes, I used to paint, but haven't in ages. I also used to work with ceramics. Haven't done that in ages either.

 

[Bernard]

FYI - http://www.coping-with-epilepsy.com...ation-sort-british-artist-andrew-carnie-4488/

 

[drarvindr]

Personally i'm in the take your meds camp. If it keeps you alive , why not? and the brain repression you speak of will not cause permanent neuronal damage , which untreated seizures will. I'm not saying keppra is the only answer. Feel free to try alternative methods of therapy , but DO get treatment.
As for the great people you speak of , most of their genius was unappreciated in their lifetimes.Another point i want to raise is that nature is cruel and sparing with her gifts. Very few people are given exceptional gifts ( everyone's mothers' opinion notwithstanding ).Personally i feel that seizures were more a coincidence than the cause of their genius. With E being so prevalent in society as a whole , is it so difficult to imagine that a few gifted individuals were born with epilepsy rather than the idea that their epilepsy was a factor in leading to their gifts? Beethoven was deaf in his later years and during the composition of his masterpiece. Did this contribute to the genius of his art? I don't know. But i feel that at our very core ,in a small place we can perhaps call our soul, all humans are free from disease, handicaps and restraints.It is in this small place that our creativity originates , something that cannot be quantified or broken down . If God willed for us to exist in order to create something , to bring some beauty into the world , i feel we can bring it no matter what our impediments.

 

[RobinN]

I know for my daughters seizures, I would never have been able to find the cause had she remained medicated. Then the possibility of clearing up one issue only to introduce another via the drugs was not acceptable to me. She is becoming closer to a seizure free status being med free, and correcting nutritional deficits and healing issues that would never have been known prior to her seizures. It was a wake up call for us.

She also would not be able to continue with her graceful art, if she was medicated to the degree that the doctors deemed necessary.

 

[walsh]

Personally i'm in the take your meds camp. If it keeps you alive , why not? and the brain repression you speak of will not cause permanent neuronal damage , which untreated seizures will. I'm not saying keppra is the only answer. Feel free to try alternative methods of therapy , but DO get treatment.
As for the great people you speak of , most of their genius was unappreciated in their lifetimes.Another point i want to raise is that nature is cruel and sparing with her gifts. Very few people are given exceptional gifts ( everyone's mothers' opinion notwithstanding ).Personally i feel that seizures were more a coincidence than the cause of their genius. With E being so prevalent in society as a whole , is it so difficult to imagine that a few gifted individuals were born with epilepsy rather than the idea that their epilepsy was a factor in leading to their gifts? Beethoven was deaf in his later years and during the composition of his masterpiece. Did this contribute to the genius of his art? I don't know. But i feel that at our very core ,in a small place we can perhaps call our soul, all humans are free from disease, handicaps and restraints.It is in this small place that our creativity originates , something that cannot be quantified or broken down . If God willed for us to exist in order to create something , to bring some beauty into the world , i feel we can bring it no matter what our impediments.

Thanks for the reply, Arvind. I definitely agree about the creativity in everyone. For me, I don't believe my epilepsy is life-threatening although it could have been. I feel really badly for those who would not survive without medication, although i'm glad the medication can control it. It's frustrating for me, because I was trained in science and left-brained pursuits and that was what I was interested in until my E, although i've always excelled in certain right-brained things like music. So I would have said the same as you, Arvind, that the E doesn't change anything, and it's just a coincidence.

So I would ask, out of all the famous people with epilepsy, why so many artists, writers and actors, and so few scientists, accountants and lawyers?
I did find one, Don Craig Wiley, a biochemist whose epilepsy was untreated. I just find it strange that the spread is so uneven. I've heard it said that E promotes right-brain function over left-brain function. If this is true, epileptic medicated artists or logic-based professionals aren't getting a good deal. Would Poe really have chosen a relatively happy, medicated life over an unhappy one creating eternal art cherished by many?

 

[brain]

I did find one, Don Craig Wiley, a biochemist whose epilepsy was untreated. I just find it strange that the spread is so uneven. I've heard it said that E promotes right-brain function over left-brain function. If this is true, epileptic medicated artists or logic-based professionals aren't getting a good deal. Would Poe really have chosen a relatively happy, medicated life over an unhappy one creating eternal art cherished by many?

The answer could be "Yes" and "No" and "Maybe".

I am one of those who are born left-handed, forced
by the School System to right with my right hand,
whereas I am not a true ambidextrous; but I have learned
to use both sides of the brain and therefore at a very early
age had developed the abilities to be as what the Doctors
had disclosed - "equally balanced" and very multi-talented.

However, as the years progressed onwards, like the others
who have deceased, it had worsen. If it weren't for the
medications, there wouldn't be no telling where I would be
today. So as Randy (Ranman) had best said it on another
thread and multiple times in many forums " .. it proves that
the medications are doing its job..."

Can't say it any better than that.

 

[darkmarkshark]

would ask, out of all the famous people with epilepsy, why so many artists, writers and actors, and so few scientists, accountants and lawyers?

Again, I still don't find this the least bit surprising.
We've already been over why its dangerous for a scientist to have epilepsy.

Would you want an attorney representing you, when there is a good chance he'll miss key moments in your case, because he's having a seizure? When there is a good chance he'll anger the jury by delaying your trial because he's having a bad time with his seizures? Who isn't intelligent enough to know to hide the fact he has epilepsy from those he wants to represent? If he can't know to hide something that could have such a potentially large negative effect on his abiility to represent you from you, how can you expect him to manuever traps and lay his own during your trial?


Its not much different for accounts. Accountants need to work long hours, often under very stressful conditions. people with epilepsy often find their seizures triggered by stress and not maintaining a regular sleep schedule. And while an account can overcome the seizure factor on looking into minute details when going over records, they can't do that in the midst of the indepth interviews they need to pay excruciating attention to

You have to factor in what the epilepsy deems impossible before making any judgements on what benefits epilepsy gives. If you look at handless people throughout history, you'll no doubt find more singers and story tellers, than fence builders, mechanics, secretaries, and scienties . Does that mean that being handless increases your creative ability? or does it just mean that more handless people go into singing and storytelling because of the difficulty involved in trying to engage in more concrete pursuits when you have no hands?


Of course an epileptic will be a better fictional story teller, because we get all the psychotic hallucinations BUT with the benefit of knowing they are hallucinations. So instead of running around telling people "My dog is alien from the planet Xos who is planning to fire a ray gun that will turn all humans into dogs.We must stop these aliens at once" we can sit down and right a children's "scary" story about a dog who plots to take over the earth, using our hallucination as basis

 

[drarvindr]

would ask, out of all the famous people with epilepsy, why so many artists, writers and actors, and so few scientists, accountants and lawyers?

HEY ! as a doctor ( as right brained as jobs come) with E i'm not happy about that remark. Come to that . if you ask the average JOE THE PLUMBER roflmao, he's more likely to name 10 actors , writers and artists than he is to name 10 prominent scientists or accountants (shudder). We are more exposed to the media that actors , writers and artists create in than we are to the scientific world , which is mostly a backstage show.
I also partially agree with darkmarkshark that epilepsy is considered a handicap in the right brained world. People look down on you. Is it so surprising that despite a 3% prevalence , so few right brained people have owed up to the fact that they are epileptic? I can never be a surgeon , partly for ethical reasons and partly because if anyone found out my career would be over. The really scary thing for you to think on is how many people operate without telling and taking the que sera sera route? So many epileptics drive anyway when they know they shouldn't. In my country , where the laws on employment discrimination are non existent , is it unfathomable that i would lie about my E to keep my job? Actors writers and the like do not need to worry about prejudice. If they succeed , they can proudly say they are epileptics and that their work was " in spite of insurmountable odds ....yada yada yada" (sniff) . If they don't they'll use their epilepsy to promote themselves. It's a talking point , which is good for actors etc. Whereas it's much better to lay low if you're a scientist or lawyer or accountant.

 

[sixpack]

So I would ask, out of all the famous people with epilepsy, why so many artists, writers and actors, and so few scientists, accountants and lawyers?


I wouldn't say there are not lawyers etc that have epilepsy. It's just more likely that you know about the actors, writers, artists because their professions tend to be more 'famous'. You just hear about these people. I had a friend while teaching who was/is a speech therapist. She had epilepsy but the world didn't know it. Also lots of people, no matter what your profession or interests, just don't tell people they have epilepsy. And, thankfully many, many folks with epilepsy have their's well controlled. So their lives may not be very affected by seizures. They drive, have careers that they love etc. While I understand Arvind has breakthrough seizures, he is a doctor and working on becoming a neuro.

And as darkmark mentioned often people will choose careers that would more fit their lives. A blind person wouldn't become a pilot, for example.

 

[Justin May]

Actors writers and the like do not need to worry about prejudice.

:roflmao: Interesting take...