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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 Tue, 2010-09-21 - 08:57
Hey again,
thanks so much for that, its good to know what to expect/not to expect and I'm glad to hear it has helped you so much. yes i'm definitely giving it a go, I have had a chat with a GP I work with who has referred me to a friend of his who he thinks will be of great help, and i plan on starting on hopefully the first of november to reduce my meds, and from the 1st of october to try and start the eating sleeping music accupuncture and yoga part of it, hopefully that will give my body time to adjust.
Thanks again for all your help I really appreciate it,
Portia
Hey again,
thanks so much for that, its good to know what to expect/not to expect and I'm glad to hear it has helped you so much. yes i'm definitely giving it a go, I have had a chat with a GP I work with who has referred me to a friend of his who he thinks will be of great help, and i plan on starting on hopefully the first of november to reduce my meds, and from the 1st of october to try and start the eating sleeping music accupuncture and yoga part of it, hopefully that will give my body time to adjust.
Thanks again for all your help I really appreciate it,
Portia
Re: Condsidering Alternative treatments any advice??
Submitted by phylisfjohnson on Tue, 2010-09-21 - 14:11
GOOD FOR YOU!
Let us know how you do... Phylis Feiner Johnson www.epilepsytalk.com
Re: Condsidering Alternative treatments any advice??
Submitted by scorpio on Tue, 2010-09-21 - 05:12
Before I started the acupuncture I was having around half a dozen seizures a week, a few days on, a few days off, despite taking 400mg/d Phenytoin (Epanutin/Dilantin), 600mg/d Carbamazipine (Tegretol) and 6mg/d Clonazepan (Rivotril). I did not reduce their dosage for some months during and after the treatment and eventually dropped the Tegretol altogether since it did not seem very effective anyway.
Ten years ago I started taking Lamictal/Lamotrigine and that has worked very well though not before I removed the Phenytoin altogether. One of the latter's side-effects is to reduce the effectiveness of many drugs taken alongside it, including Lamictal: removing the Phenytoin has enabled me to reduce the dosage of the (now-more effective) Lamictal by half, from 400 to 200mg/d.
When I started the first acupuncture course I began to have seizures at times of the day I had never had before; the seizures also 'felt' different. Something was clearly happening. After a few weeks the seizures stopped altogether. It was as if the acupuncturist had initially been trying different specific treatments to find the one I most responded to but I am not an acupuncturist.
If it is not inconvenient why not try it? In qualified hands it will not do you any harm and probably benefit you generally.
Chris
Before I started the acupuncture I was having around half a dozen seizures a week, a few days on, a few days off, despite taking 400mg/d Phenytoin (Epanutin/Dilantin), 600mg/d Carbamazipine (Tegretol) and 6mg/d Clonazepan (Rivotril). I did not reduce their dosage for some months during and after the treatment and eventually dropped the Tegretol altogether since it did not seem very effective anyway.
Ten years ago I started taking Lamictal/Lamotrigine and that has worked very well though not before I removed the Phenytoin altogether. One of the latter's side-effects is to reduce the effectiveness of many drugs taken alongside it, including Lamictal: removing the Phenytoin has enabled me to reduce the dosage of the (now-more effective) Lamictal by half, from 400 to 200mg/d.
When I started the first acupuncture course I began to have seizures at times of the day I had never had before; the seizures also 'felt' different. Something was clearly happening. After a few weeks the seizures stopped altogether. It was as if the acupuncturist had initially been trying different specific treatments to find the one I most responded to but I am not an acupuncturist.
If it is not inconvenient why not try it? In qualified hands it will not do you any harm and probably benefit you generally.
Chris