Do alternative treatments really work?

[imwithcoco]

I was just wondering if anyone here is or has ever tried any alternative treatments for their epilepsy? I take lots of meds for mine and want to get off most, if not all of it, if possible. Lamictal - 100 mg, Tegretol - 700 mg, Zonegran - 600 mg, Keppra - 3000 mg, Effexor - 150 mg is my daily routine and I'm sick of it! I've been seeing a neurologist for years now, and she's good, but there aren't many in my immediate area. The other few are absolute idiots. I started wondering if I should see an actual epileptologist, the closest of which being at least 100 miles away, but I could handle that.

You all will probably think I'm nuts when I let you know how I got this idea, but here it goes anyway. I like to read and watch history stuff, especially documentaries and topics involving supernatural and psychic phenomena. Put the two together and I'm in heavenop:. So I came across a show on this guy the other day I couldn't believe I'd never heard of named Edgar Cayce. He was a self - proclaimed psychic and sort of healer/diagnoser, and supposedly very good at it. It really interested me, but they made no mention of him ever diagnosing or telling how to heal epileptics, yet he did this for hundreds, if not thousands of people. So I checked him out on the net, and sure enough, he had done it for many epileptics.

It seems to me that osteotherapy was one of his main fallbacks and major sources of treatment in addition to massage and oils and things. When it comes to things like this I'm pretty sceptical, but the osteotherapy and even chiropractic care seems to have been pretty successful for some, even until the present day. I even found a really good book by a lady that gives her daughter's struggle with epilepsy, she followed Cayce's plan: diet, oil, massage and osteotherapy, and has now been seizure a med free for years. Then I found out this lady also works at the Cayce hospital where all of this stuff is sold. In her defense though, she wasn't advertising. Like I said, I'm sceptical when it comes to alternative treatment. I feel like I'm going New Age or something.

What do you guys think? Is worth a shot?onder:

 

[epileric]

I've seen an osteopath & he really didn't do much for my seizures but when I was in massage college, we used to have a practical course 3 times a week & we would learn on each other so we would always have to give/get a massage for that class.

I was scared because the overall course is extremely stressful-stress being a major trigger for me, but barely had any seizures for that semester. Each semester we had less & less practical courses & the amount of seizures seemed to increase as the massages decreased.
More recently I was seeing a massage therapist weekly & it did make a difference in that my seizures weren't as bad as they are now.

Also, here is a link to the "history book" where people report on their experiences with alternative therapies. http://www.coping-with-epilepsy.com/forums/f32/

As far as whether it's worth a shot, you have to remember that everyone is different. What works for one person may not for another. That same principal applies to AED's too.

 

[Nakamova]

A lot of the alternative treatments -- like massage, or acupuncture -- can at the very least work on the level of reducing stress. But you need to be very careful if you're going to try and reduce meds at the same time while trying an alternative treatment. (You have to be very careful ANY time you try and reduce meds).

You might want to consider neurofeedback as a first step to potentially reducing your meds, since it's easier to gauge the effects it's having on you brain.

 

[epileric]

:agree:
Nakamova is right, definitely see what alternative(s) work best for you then talk to the doc about reducing your meds.

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[BuckeyeFan]

In addition to seeking out and learning new methods of treatment, I would definitely have those meds reviewed. 5 different meds at the same time is unusual and would make it virtually impossible to know which ones are beneficial. The number one step to any alternative treatment is to understand what you are moving away from.

 

[Bernard]

Hi iwc, welcome to the forum. :hello:

We have one member here that posted her son's experience using Cayce's regimen.

That said, I spent a lot of time researching various alternative treatment options when I put the chart together. What I found is that there are a lot of treatments out there like this Cayce regimen that seem to get promoted in books or web sites, but which have never been scientifically/clinically studied (or at least, I'm not able to find any reference to same in the usual places).

Here's some food for thought: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Andrew]

Vitamin B6

you may be interested in reading the following URLs:

"Pyridoxal phosphate plays an essential role in the metabolism of many aminoacids, and deficiency of this coenzyme can lead to many manifestations. Clinical signs include retarded growth, acrodynia, alopecia, skeletal changes and anaemia, while changes in neurotransmitters, such as dopamine, serotonin, norepinephrine (noradrenaline), tryptamine,
tyramine, histamine, GABA and taurine, affect brain function and can lead to seizures and convulsions."​

http://ec.europa.eu/food/fs/sc/scf/out80c_en.pdf

"Since the publication of the initial case report in 1954 (1), seizures due to pyridoxine-dependency have been recognized as an uncommon cause of intractable seizures in neonates and young infants."

http://faculty.washington.edu/sgospe/pyridoxine/index.html

"A support group for parents of children with Pyridoxine Dependency, or parents who are using B6 as an anticonvulsant"

http://health.groups.yahoo.com/group/b6children/

"Pyridoxine-dependent epilepsy, characterized by a combination of various seizure types, usually occurs in the first hours of life and is unresponsive to standard anticonvulsants, responding only to immediate administration of pyridoxine hydrochloride. The dependence is permanent, and the interruption of daily pyridoxine supplementation leads to the recurrence of seizures. Some patients show developmental delay. The prevalence is estimated at 1 in 400,000 to 700,000 (Bennett et al., 2005)."

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=266100

"Pyridoxal 5'-phosphate-dependent epilepsy is a condition that involves seizures beginning soon after birth or, in some cases, before birth. The seizures typically involve irregular involuntary muscle contractions (myoclonus), abnormal eye movements, and convulsions."

http://ghr.nlm.nih.gov/condition=pyridoxal5phosphatedependentepilepsy

 

[Molly97]

Regarding Edgar Cayce,
What I got out of his work was not a regimen to follow, but verification of my feeling that there is definitely a gut/brain connection that is capable of being improved. In my case, I was encouraged to go on the GARD, and the seizures I was having due to food triggers went away. I still have what I think is TLE, but the food triggers were causing seizures that were eclipsing the TLE symptoms. IMHO, this is why so many of us find our seizures "changing." As we get one source of seizures under control, the others come to the fore to be taken control of.

 

[healthcoach]

Hello. I think the opportunity to explore various treatments and your unique body and mind is one of the hidden "gifts" of having epilepsy. Use your own good sense, take your time, and follow your intuition. There are many people who have had success finding their own natural cure. I'm one!

Peace on your journey~ Adrienne

 

[lureswinger]

routines

i think its all to do with setting yourself into a routine like mine for instance wake up, roll out of bed take tablets and at the other end of the day take tablets and roll back into bed yes is a boring thing but "laugh at life "

laugh at life or it ****s on you
im a falconer and it ****s on me every day

 

[BuckeyeFan]

im a falconer and it ****s on me every day

:roflmao:


That is an interesting an unique hobby. You will have to write about it sometime.

 

[Zoe]

Thanks for all this information! I plan to write an article about it.

Zoe