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Condsidering Alternative treatments any advice??
Wed, 09/15/2010 - 14:17I'm a 25y/o female, i've been on Epilim (sodium valproate 500mg morning and night) for the past roughly 8 years. Generally speaking my epilepsy is not bad, seizures don't effect my life in any way as I am well controlled, but I do not like the side effects of the meds. Again, I had a lot more energy and my thought processes were quite different pre-epilepsy, admittedly people did find me frustrating as I often blanked out and it appeared that i was just ignoring them (I happen to get both the absense and grand mal seizures, the absenses don't bother me though, its just a blank spot). My last grand mal seizure was in 2007 and it was quite bad, but that was because I had two or three straight after one another. I am effected by stress on my body, lights smells and sounds don't effect me. I can go out till 9am, drink substantial quantities and wake up after a few hours sleep and am perfectly fine (tired but never had a seizure form any form of drinking or partying, it doesn't effect me like that) hyperventilating is another story, thats when i get epileptic activity according to my EEG.
I had read online that some people were using adderall/ritalin to treat the slowness that comes with the anti epileptic meds, I did consider asking the Dr about that but figured he'd probably think I just wanted to kind of abuse it like the tonne of others my age, and it would just be another pill to add to the tonne i already take.
I have heard a lot of people claiming to 'cure' kids with epilepsy through homeotherapy, and i remain skeptical as i don't really believe in a cure just yet and also kids do sometimes just grow out of epilepsy. But I am interested in using homeotherapy as a complementary medicine to other alternative medicines to control my epilepsy.
I have just moved to the UK and since I don't have a car here and wont be driving at all (and by not being able to drive i will also be able to get reduced bus and train tickets if i can't medically drive! which is a bonus) I think it could be the perfect time to try alternative meathods of treatment. I feel that my epilepsy could be managable with a healthy diet, exercise and regular sleep patterns, because i've only had like 6 or so seizures in my life, living with this medication doesn't really seem to outweigh the benefits of it, even though when I do have a regular seizure it knocks me for around a month or so.
I have previously done bikram yoga and enjoy that but would that be too strenuous post going off medication.
I will try doing this under medical superviosion if i can find a neurologist/GP with special interest in epilepsy who doesn't think i'm ridiculously stupid, but at the moment its only in an idea stage. My parents I can't imagine will be thrilled considering i'm so far from home but it seems like the perfect time to try.
If anyone else has gone down this road please let me know and how you went about it. I would really appreciate any help.
Comments
Re: Condsidering Alternative treatments any advice??
Submitted by portialee on Thu, 2010-09-16 - 06:10
Hi chris,
yes I've definitely considered acupuncture, I have thought of going about it in a step by step basis. eg. firstly consult a nutritionist, just to advise on a general course of action. Then to start doing a regular yoga class. Start slowely reducing my med intake alongside acupuncture, (which I prefer the idea of over homeopathy, as I'd prefer only to be ingesting food no more pills!) I also read somewhere somthing about a mozart effect that showed positive effects in reducing seizures in epileptics, I wondered if that was directly related to people who know when theyre about to have a seizure or if i even played the music at night while i slept if that would have the same effect.
Did you continue taking your medication while doing the accupuncture or did you only use medications occasionally? I don't really like the idea of going on and off the medications frequently as I remember my adjusting times on epilim was crazy and not fun at all? I'm guessing it would be much the same going off but??
Thanks for the website I think for the moment the first thing I should do is get my national insurance number so i can actually be a legitimate NHS user, then if anyone knows of any good GP's/GPWSI in epilepsy in the bristol area please let me know. I think i'll need a fairly alternative thinking neurologist to get on board, so also if anyone knows of anyone please let me know!
Thanks again,
Portia
Hi chris,
yes I've definitely considered acupuncture, I have thought of going about it in a step by step basis. eg. firstly consult a nutritionist, just to advise on a general course of action. Then to start doing a regular yoga class. Start slowely reducing my med intake alongside acupuncture, (which I prefer the idea of over homeopathy, as I'd prefer only to be ingesting food no more pills!) I also read somewhere somthing about a mozart effect that showed positive effects in reducing seizures in epileptics, I wondered if that was directly related to people who know when theyre about to have a seizure or if i even played the music at night while i slept if that would have the same effect.
Did you continue taking your medication while doing the accupuncture or did you only use medications occasionally? I don't really like the idea of going on and off the medications frequently as I remember my adjusting times on epilim was crazy and not fun at all? I'm guessing it would be much the same going off but??
Thanks for the website I think for the moment the first thing I should do is get my national insurance number so i can actually be a legitimate NHS user, then if anyone knows of any good GP's/GPWSI in epilepsy in the bristol area please let me know. I think i'll need a fairly alternative thinking neurologist to get on board, so also if anyone knows of anyone please let me know!
Thanks again,
Portia
Re: Condsidering Alternative treatments any advice??
Submitted by phylisfjohnson on Thu, 2010-09-16 - 10:30
The positive effect of music
You're right! Music has a direct effect on brain wave activity.
It can be used as a stimulant, energizing and quickening the brain activity, helping us to focus and think more clearly. Or it can help us to relax and ease tension, equalizing the brain waves.
Relaxing music can balance the left and right hemispheres of your brain, leading to reduction of mental imbalance and stress and promoting balance in your personality.
A recent study indicates music can reduce seizure activity in the brain. While the study groups’ brain wave activity was monitored, Mozart's Sonata for Two Pianos (K.448) was played to 29 people with seizures, some actually comatose. Twenty-three of the 29 showed a "significant" reduction in seizure activity in response to the music.
There’s also research to prove that listening to Mozart's compositions raised IQs and improved attention and behavior in children. But obviously, that’s not always the case.
Another research study found that when patients with epilepsy were treated with music therapy as well as conventional anti-epilepsy drugs, as many as 80% had the frequency of their seizures reduced by 75%! In addition, 80% experienced at least some reduction in the intensity of their epileptic seizures.
So get a little friendly with Mozart. Not that you have to give up hip hop, rock, or rhythm and blues. (Pachelbel - Canon in D Major is my favorite…along with anything by Sting.)
And just think, while you’re enjoying yourself, you’re feeding your brain good food at the same time! Phylis Feiner Johnson www.epilepsytalk.com
The positive effect of music
You're right! Music has a direct effect on brain wave activity.
It can be used as a stimulant, energizing and quickening the brain activity, helping us to focus and think more clearly. Or it can help us to relax and ease tension, equalizing the brain waves.
Relaxing music can balance the left and right hemispheres of your brain, leading to reduction of mental imbalance and stress and promoting balance in your personality.
A recent study indicates music can reduce seizure activity in the brain. While the study groups’ brain wave activity was monitored, Mozart's Sonata for Two Pianos (K.448) was played to 29 people with seizures, some actually comatose. Twenty-three of the 29 showed a "significant" reduction in seizure activity in response to the music.
There’s also research to prove that listening to Mozart's compositions raised IQs and improved attention and behavior in children. But obviously, that’s not always the case.
Another research study found that when patients with epilepsy were treated with music therapy as well as conventional anti-epilepsy drugs, as many as 80% had the frequency of their seizures reduced by 75%! In addition, 80% experienced at least some reduction in the intensity of their epileptic seizures.
So get a little friendly with Mozart. Not that you have to give up hip hop, rock, or rhythm and blues. (Pachelbel - Canon in D Major is my favorite…along with anything by Sting.)
And just think, while you’re enjoying yourself, you’re feeding your brain good food at the same time! Phylis Feiner Johnson www.epilepsytalk.com
Re: Condsidering Alternative treatments any advice??
Submitted by scorpio on Thu, 2010-09-16 - 05:45
Have you considered acupuncture? The first time my epi became completely controlled was during a course of acupuncture, years ago. Since then I have found different practitioners' treatments variable in their effectiveness though there has always been some benefit. This is probably not surprisiing given the intellectual and physical skills involved in the analysis and application of the treatment. I still have the odd treatment though the meds I take seem to do the job, without intolerable side-effects.
The British Acupuncture Council, which regulates the practice in the UK, has a busy website containing a lot of info on the subject including a list of registered practitioners in the country. Might be worth a try. You might even be able to have the treatment courtesy of the NHS. I know some do.
Chris
Have you considered acupuncture? The first time my epi became completely controlled was during a course of acupuncture, years ago. Since then I have found different practitioners' treatments variable in their effectiveness though there has always been some benefit. This is probably not surprisiing given the intellectual and physical skills involved in the analysis and application of the treatment. I still have the odd treatment though the meds I take seem to do the job, without intolerable side-effects.
The British Acupuncture Council, which regulates the practice in the UK, has a busy website containing a lot of info on the subject including a list of registered practitioners in the country. Might be worth a try. You might even be able to have the treatment courtesy of the NHS. I know some do.
Chris