Chart of non-prescription (AED) drug treatments for epilepsy

Bernard

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Thanks Jen. I do need to update a few things on the chart. I'll add your comments to the list.
 

Teanque

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I have been treating my seizures with small amounts of marijuana daily for a few...months..now. (i am on no other medicines, can't afford it, no insurance) havent had any adverse effects that I can tell. I have had, by far, a smaller amount of seizures than i did before i started. If I run out for a few days...my stress level increases, as does my insomnia. Both of which lead to....you got it! another wonderful seizure!!!!
 

KarenB

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A bit surprised that you rated Piracetam as a "0" for efficacy with myoclonic seizures -- I thought studies indicated it was rather successful for this type of epilepsy (usually as an adjunct -- tends to enhance action of AEDs) rather than monotherapy.

Also, seriously? Aromatherapy gets rated higher than Ketogenic diet? Could you post the studies you used to determine this (I don't need the ones for Keto diet, just aromatherapy)?
 

Bernard

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Each item in the chart is linked to a page that contains the detailed info used to score the chart.

A bit surprised that you rated Piracetam as a "0" for efficacy with myoclonic seizures ...
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This report shows that 50% improvement is at the upper limit of the range for this particular study. I was able to find other case studies (like this one [.PDF file]) which report 100% control of myoclonic jerks. However, I wasn't able to find a study with a large enough sample to derive a meaningful score for the chart on percentages of patients hitting 50% or 90% improvement.
...
http://www.coping-with-epilepsy.com/index.php?p=piracetam

It's been a few years since I made the chart. If you are aware of any significant studies on the issue, let me know and I'll update the chart.

Also, seriously? Aromatherapy gets rated higher than Ketogenic diet? Could you post the studies you used to determine this (I don't need the ones for Keto diet, just aromatherapy)?
I am only aware of one published study on the use of Aromatherapy for treating epilepsy (thanks epileric!), and the author admits it wasn't a controlled study, so the results are suspect. That said, this is what they found:
...
http://www.coping-with-epilepsy.com/index.php?p=aromatherapy
 

KarenB

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You're right that a lot of the studies on Piracetam and seizures have been small, and no significant studies done in the US (my epileptologist says it's because it's so cheap, the drug companies won't fund a study because there's little potential profit). But it does show some promise especially for infants with myoclonus (used as first line treatment for that in Europe), and also as an enhancer for AEDs without significant side effects.

A use of high dosages of piracetam in the treatment of Kozhevnikov epilepsy syndrome
http://www.ncbi.nlm.nih.gov/pubmed/18379510
Russian study, 2007, on Rasmussen disease. 6 child patients (9 to 16 years) who received 1 g per kilo body weight Piracetam per day (intravenous) up to 35 g/day. Treatment for 30 days.
Results:
3 became free of myoclonic seizures; other 3 received 75% improvement.
2 became free of focal clonic seizures; other 4 decreased in frequency
2 became free of secondary generalized seizures; other 4 had 50% or greater improvement
Neurological improvement in 5 out of 6
Hemiparesis intensity reduced in half of children.
Cognitive functioning enhanced in 5 out of 6


Long-term efficacy and safety of piracetam in the treatment of progressive myoclonus epilepsy.
http://www.ncbi.nlm.nih.gov/pubmed/11346373
http://archneur.jamanetwork.com/article.aspx?articleid=779361
Canadian study, 2001. 11 (age 17-36) patients w/ progressive myoclonus. Initial dose 3.2 g/day, titrated up to 20 g/day. 12 month study. Significant overall improvement. 2 patients received dramatic decrease in tonic/clonic seizures. Side effects: 2 patients reported drowsiness in first 2 weeks of treatment. 1/3 of patients experienced gastrointestinal discomfort, but no diarrhea, and effect was temporary. Best effect when given as an adjunct with Valproic Acid or Clonazapam.

Piracetam in the treatment of cortical myoclonus
http://www.ncbi.nlm.nih.gov/pubmed/10338109
French study, 1999. 12 patients, double-blind w/ placebo. 7 year study. Dosage 7 to 48 g daily. Tolerability on long-term, high dose quite good. No serious adverse effects. “Marked and sometimes spectacular improvement” that continued for up to 7 years. Researchers recommend the daily dosage be increased until improvement seen (since tolerability is high). They also recommend usage as adjunct or monotherapy, and as first line treatment for cortical myoclonus.

Piracetam relieves symptoms in progressive myoclonus epilepsy: a multicentre, randomised, double blind, crossover study comparing the efficacy and safety of three dosages of oral piracetam with placebo.
http://www.ncbi.nlm.nih.gov/pubmed/9527146
Finland study, 1998. 20 adult patients. Doses ranged from 9.6 to 24 g/day. Study measured improvement in functional disability caused by myoclonus epilepsy, and found improvement in motor skills and other assessments. Improvement significantly related to higher doses, although significant improvement seen even at lower dose. Side effects mild and transient.

Clinical use of piracetam in epileptic patients
http://www.sciencedirect.com/science/article/pii/S0011393X05804072
Pakistan & Belgium, 1992. 60 patients with epilepsy (adult & child), double blind. 15 age matched control subjects. Prior to study and at conclusion, each subject tested for memory, intelligence scale, EEG, and neurologic exam. Piracetam enhanced cognitive scores for patients with epilepsy, did not interfere with AEDs, and enhanced performance of some AEDs.
 

KarenB

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It should be noted that the high doses used in these studies would usually require IV admin, along with careful medical monitoring, and therefore, would not be "non-prescription." Piracetam's side effects are mild at lower doses, and it can be purchased over the counter in most countries outside the US, but it appears that only very high doses are efficacious for seizure control (and then, usually only for specific epilepsies).
 

BlueCat

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I didn't see anything on the chart about acupuncture for generalized seizures. I've heard it can be helpful in reducing excess activity (not trying to get off my meds, we're just not sure if they're doing enough). Has anyone seen any useful articles on this?
 

epileric

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I didn't see anything on the chart about acupuncture for generalized seizures. I've heard it can be helpful in reducing excess activity (not trying to get off my meds, we're just not sure if they're doing enough). Has anyone seen any useful articles on this?
Speaking as someone that has had numerous acupuncture treatments & is trained as a qualified acupressurist in Canada I can safely say acupuncture has no effect on epilepsy though it can be relaxing.
 

BlueCat

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Well, after four weeks of acupuncture with someone who works with epilepsy and similar issues, along with the general treatments acupuncture is used for, I can say that I have accomplished several things. First, and quite important to me, was my last EEG did show signs of slight improvement - nothing earthshattering, but I'll take what I can get. More importantly to me is I am calmer, I'm not having headaches all the time, even when I was in and after that EEG I was more centered and much more calm than the previous two. Maybe it's anecdotal, maybe it's a placebo effect, but I will continue as I haven't felt this good in years, I'm sleeping through the night most of the time and I'm not in hyper mode like I was. It's not the answer for everyone but I feel it has helped me.
 

epileric

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Yaay, glad that you're feeling the benefits you do. I had a similar experience in how I felt more centred & relaxed. Regardless whether it is placebo or not enjoy what you are getting from it, I did.

Do be careful however, even if you seem to have less seizures to be aware that you not do things that might provoke them. I think we all get less vigilant about avoiding triggers when we feel better about our problems (be them medical or not).

If you do have problems with stress (I know I can be pretty high strung sometimes) I suggest meditation or working out regularly, though it does take time before seeing results. Both of those have helped me as well, especially working out.
 

carlj1190

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I'm 27 & diagnosed with unknown onset seizures 3 years ago. I began having random seizures up to 3 a day. The medicines given only made it worse with side effects. Tried marijuana it helps with headaches not the seizures. I found herbs to control my thinking habits which helped immensely. Blue lotus, white willow bark, cilantro, wild lettuce, turmeric, & ginger powder. All were very cheap on ebay by seller schmerbalsherbals. I found Edward Casey saying u can use castor oil to heal epilepsy via your liver & have been using it & a heating pad to do so. I'm seeing excellent results & I hope this helps someone.
 

resaebiunne

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How does a heating pad help with e? Very confused... Castor oil is for being regular which my topamax already takes care of.
 

carlj1190

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w w w.edgarcayce.org/the-readings/health-and-wellness/holistic-health-database/therapies-castor-oil-packs/.....
Here's where Edward Cayce explains how it helps with epilepsy
 
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resaebiunne

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That link doesn't explain *HOW* it helps in epilepsy, it explains the *TECHNIQUE*.
 

carlj1190

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Here you go.

google com/amp/s/w w w.thedoctorstv. com/articles/2869-can-castor-bean-oil-help-reduce-seizures%3famp
 
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