7 replies to this topic

[RicardoW]

I got ill when I was 17 for no obvious reason and started taking carmazepine (I have done brain scans that did come out clear). I did do well in school and maintained some social life although my interested for just abbot any thing was very limited after this point. I always thought that this hade something to do with the blow I received to my forehead when I had my first grand mal seizure and fell in the water from a low bridge. Maybe the whole experience messed me up psychological as well as I almost died. I also had the belief in my teens that all my problems was due to my medication and that I would be able to stop taking it when I realised that this would never happen I started to grasp the seriousness of my situation.

Now years later I feel as if I'm deprived of the quality of life others in my surrounding enjoys for a number of reason. Although I have fun some times I feel as if I'm hollow unable to relate to others I refrain completely from having devoted relationships to females because I feel as if its al an act on my part. It simply doesn't feel right I feel like a dishonest piece of shit my emotional act and what I have become disgust me and it becomes so obvious in this kind of situations. There is actually as strong connection between some anticonvulsant drugs and the development of narcissistic personality disorder. Some times I also feel tired, have lack of motivation (if I take a larger dose than what I'm us to this effect is stronger so its obvious that the medication cases it), feel as if life is completely meaningless and I'm the only one that realises it. It al makes med fell extremely lonely despite the fact that I'm not.

I would appreciate you're help. I know that people often refrain from giving advice to persons with epilepsy most likely because it's a serious disorder and having seizures might direct and indirect have serious consequences. I would like to make clear that I wouldn't do anything with out reading a lot, giving it careful consideration, discussing it with my doctor (she is actually grate and not much older than me and actually takes the time the to reads material I send to her), and most importantly I would not throw my drugs away (even though I like to). I suggest any one in my situation reading this do the same. I really think that a post of this sort is missing in this form considering that epilepsy is common and there are a lot to read here for people with other neurological disorders.


To start with I have tried the supplements that first comes to mind such as: Magnesium Malate and taurine (melatonin is something I'm interested in). This has helped me to some degree with my anxiety but has not improved my epilepsy significantly.

I have also tried combinations of supplements that might effect glutamate that is a key neurotransmitter in epilepsy by different mechanisms for instance: niacin, theanine, DHEA. This do have a clear anxiety effect but are not very useful in treating the actual seizures so I stopped talking it.

Now I'm trying to find out more abbot substances naturally present in brain possible to take as supplements and that easily passes the blood-brain barrier such as: SAM-e, naltrexone (LDN) and pregnenolone. It is possible the treat other disorders such depression, parkinson and others I cant see why epilepsy would be worse. Now pleas cure me!

Edited by RicardoW, 05 May 2010 - 10:22 PM.

[RicardoW]

I think this could be an interesting topic to discuss. As I mentioned supplements doesn't get me that far except for magnesium and Taurine (very god effect on anxiety) and omega3 that I might have a low ability to absorb. I have investigated this thoroughly and tried combinations of supplement that might interact and have a positive effect on inhibiting glutamate. As well as antioxidants that easily passes the blodbrain braier some of them for instance grape seed extract have given me a noticeable effect. Currently I us 50 mg of vitamin B6 to see what effect I has on me.

I have also tested piracetam some time ago it did work on my epilepsy but unfortunately it caused unpleasant side effects due to my partly positive experience of piracetam I asked my doctor to prescribe me levetiracetam this drug Is derived of piracetam and is used for epilepsy (in Sweden its usually not prescribed because its relatively expensive) but I gave this up as I realised that it was not much better than any other of the drugs I have tried.

Right know I like to know more abbot alternative treatments that might be useful for epilepsy and would really appreciate any comments. And information that I can us investigating this subject further. My goal is to 1 be completely cured, or 2 have a significant improvement an be able to cut down on my medication if this doesn't work, 3 have less side effect of the medication.

I think that for instance SAM-e and low dose naltrexone might be very useful, if a substance can alter brain chemistry I'm sure I can improve epilepsy as well and if it can do this with out side effects its obviously very interesting.

Thanks for the excellent form you all provide.

Edited by RicardoW, 08 May 2010 - 07:54 PM.

[jazzcat]

I've read that vitamin B6 may play a role in epilepsy.

Have you considered going to a holistic doctor with experience in a nutritional approach? If you were tested for deficiencies by a doctor who knows what he is doing he could help you a lot better than we could.

I think taking supplements willy-nilly (by experimenting) is not going to help you. You should try to come up with some type of game plan. There are different nutritional treatments out there like nutrigenomic, Metabolic Typing, Orthomolecular.

[xEva]

Have you tried fasting or a ketogenic diet?

[tham]

You could consider the Himalaya herbal formulation, Mentat,
which I have posted about in the Alzheimer's thread.

It's been selling here in Malaysia for many years. I had thought
all the while that it was just a mild memory enhancer and never
realized it was so versatile.

It comes in tablets and syrup. It is also known as BR-16A.


http://www.ncbi.nlm....st_uids=7590948

http://www.ncbi.nlm....st_uids=8359850

http://www.ncbi.nlm....st_uids=8253492

http://www.himalayah...s/mentat014.htm

http://www.ect.org/r...bal_memory.html




Anticonvulsant activity of three of its main herbs - bacopa,
centella asiatica and withania somnifera.

http://www.ncbi.nlm....t_uids=19944749

http://www.ncbi.nlm....t_uids=19700373

http://www.ncbi.nlm....t_uids=19439326


http://www.ncbi.nlm....t_uids=20144879

http://www.ncbi.nlm....t_uids=18455381


http://www.ncbi.nlm....t_uids=18697606

http://www.ncbi.nlm....t_uids=17959291

http://www.ncbi.nlm....t_uids=11315755

[RicardoW]

jazzcat,

I'm not really interested in supplements for this aim any more. And yes vitamin B6, magnesium and taurine are the standard treatment used in an orthomolecular approach to improve epilepsy. As far a turine are concerned I have spoken to practitioner of orthomolecular medicine how told me that a stress induced lack of taurine in the cell membranes are a common cause of epileptic seizures and that a lot of people that have as series of seizures and start taking drugs could be cured if only they would have taken taurine for a few weeks. I don't know if this is true in some cases but I do think every person with epilepsy or anxiety should supplement with taurine. And I don't think that my seizures are cased by some hidden deficiency.

tham,

It would be amazing if substances with little value on there own some how could interact in a clever formula. I am aware that herbs and animal material really can have a significant medical effect scorpion and centipedes (a farley non toxic sort) are commonly used in china as medicine but also as food in some dishes eating these insects will actually have a stabilizing effect on cell membrane much by the same mechanism as modern drugs by effecting ions ability to pass the shell of the cell. Gastrodia a very particular herb (also used in some dishes and combined with scorpion in formulas) do increase dopamine significantly its not stimulating but has a relaxing effect yet induce a sense of mental clearness and wellbeing. But at the moment I don't fell to confident abbot taking random combinations of herbs containing chemicals with these properties. Maybe I will change my opinion (perhaps there are for some reason significant differences between herbs and drugs). I constantly hear that epilepsy easily can be controlled by combination of herbs and that this can be done with out side effects and the person using the herbs will get better overtime as he/she uses the herbs. This clashes with modern medicine. But if the herbs used one by one are safe and have possible benefits perhaps combination will be so as well in contrast most drugs are harmful one there own and even more so when combined.

Lexx,

I have considered this but my life is to unstructured at this point for me to be able to keep a strict diet. But in the future it might be interesting. Apparently epilepsy can be significantly improved by restricting carbohydrates.

Edited by RicardoW, 11 May 2010 - 05:04 PM.

[RicardoW]

Any way I'm not really interested in discussing herbs diets or the typical supplements (although I greatly appreciate any advice that might be useful). What I'm really interested in and hope to discuses are actual "medicines" like SAM-e or low dose of naltrexone. It probably are possible to treat epilepsy or significantly improve epilepsy with substances that will give short term and long term benefit to the user instead of side effects and possible harmful long term effects commonly cast by regular drugs.

"No seizures, no side effects" are the motto used for treatment of epilepsy it's a very god ambition for the development of new drugs but to claim that it's a reality to day are almost offensive and are a god example of lack of objectivity its simply not supported by statistics. It's also well known that anticonvulsant drugs case a number of negative long term effects to the people taking them.

Obviously I have god reasons to educate myself and consider possible alternatives but this subject are a difficult one to become engrossed in for many reasons. So I would appreciate some advice and examples of substances that might work.

Edited by RicardoW, 11 May 2010 - 05:08 PM.

[RicardoW]

Various methyl donors might be useful for epilepsy methylglycine are often mentioned (I cant see why would be better than same-e.) Dos any one have any experience with any of the methyl donors for improving epilepsy?

Edited by RicardoW, 15 May 2010 - 06:49 PM.