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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 - 15:08
thank you!! although I am a bit concerned as everyone seems to stay on their meds and trys these if their meds dont fully work, but I know im not the only person to try going off their meds... but yea I am trying to go off all and every type of pills, tinctures etc, i'm not basing this on any set of beliefs i.e eastern vs. western. all I hope is if i eat well, sleep well, exercise and generally take care of myself (admittedly it wont be easy and it will be very very regimented), through music, yoga and and accupuncture (maybe i'll give massage a go also) I will be able to control my epilepsy without anti convulsants (as stress is my trigger), if it doesn't work its ok at least I tried. today I called a epilepsy specialist nurse and she basically told me I wont be able to find a neurologist who will assist/support me in this, and I'm more likely to find a GP who will be willing to explore other options so for the moment i'm going to focus on finding one of those, thankfully I work with Dr's and we also have an acupuncturist and nutritionist who occasionally use the practice for consults (who are reputable) so I am going to try and contact them once this gets underway.
thanks again
thank you!! although I am a bit concerned as everyone seems to stay on their meds and trys these if their meds dont fully work, but I know im not the only person to try going off their meds... but yea I am trying to go off all and every type of pills, tinctures etc, i'm not basing this on any set of beliefs i.e eastern vs. western. all I hope is if i eat well, sleep well, exercise and generally take care of myself (admittedly it wont be easy and it will be very very regimented), through music, yoga and and accupuncture (maybe i'll give massage a go also) I will be able to control my epilepsy without anti convulsants (as stress is my trigger), if it doesn't work its ok at least I tried. today I called a epilepsy specialist nurse and she basically told me I wont be able to find a neurologist who will assist/support me in this, and I'm more likely to find a GP who will be willing to explore other options so for the moment i'm going to focus on finding one of those, thankfully I work with Dr's and we also have an acupuncturist and nutritionist who occasionally use the practice for consults (who are reputable) so I am going to try and contact them once this gets underway.
thanks again
Re: Condsidering Alternative treatments any advice??
Submitted by kjcolmo on Thu, 2010-09-16 - 20:38
Your story really did touch me! I have had epilepsy for over 21 years which does affect our lives in many ways.
Have you thought about brain surgery? I only ask because I went through it. Which, at that time I went through 5 or more siezures a day. Now I have 3-5 a year (my old type of seizures that is)
Before surgery I was having 7-10 of the simple partial complex siezures.
Good Luck!
Your story really did touch me! I have had epilepsy for over 21 years which does affect our lives in many ways.
Have you thought about brain surgery? I only ask because I went through it. Which, at that time I went through 5 or more siezures a day. Now I have 3-5 a year (my old type of seizures that is)
Before surgery I was having 7-10 of the simple partial complex siezures.
Good Luck!
Re: Condsidering Alternative treatments any advice??
Submitted by baggytrousers on Thu, 2010-09-16 - 11:26
You may also want to try massage therapy ..specifically cranial sacral (focuses on head and neck..it stimulates the cerebro spinal fluid which is beneficial to the nervous system) and Swedish massage. Massage therapy does wonders for anxiety and stress, which is a common trigger in many people with epilepsy. Also, you may want to look into Reiki (a very well respected form of energy healing) I have also heard that ayurvedic herbal remedies are very beneficial. Ayurveda comes from India, which as you may know, is known for combining eastern and western medicine philosophy and practice. Of course, consult your doctor first.