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My med options???

Wed, 06/01/2005 - 14:02
Hi I have posted here before. Am in need of support right now.I have had epilepsy for 36 years and up until last year had been on dilantin 36yrs., a few years on phenobarb when then switched to tegrtol so on for 28yrs. I have complex and simple partials due to a malformation of the brain at birth due to FAS.I had learned to deal with the two or three simple partials and auras I had and seemed able to do things and stay active. Though not working as I wanted do to the level of fatigue I have.Last year I could tell my body was not doing well on the tegretol so went to a new dr. an epileptologist. In working with her , though I like her and felt hopeful it has been a bit of a crazy year to say the least. Since being taken off dilantin, and tegretol have tried 5 different drugs with not too much on going success: depakote, zonagram,Trileptal, keppraand Lamictal. last fall I had a VNS implanted and after a loss of speech for 8 weeks due to the surgery. I decided 6 months later to turn it on at the lowest possible setting. and my seizures increased 4-5 times as many amonth. So it was turned off in early april and will be removed.However since last August I have been on trileptal 1800mg, keppra1500mg and most recently lamictal. None of these are " at therapuetic level". When I was put on Lamictal to help with the break through losses of speech. When I try to increase the drugs I get bad enough side affects I can not increase them. My body is very very sensitive to alot of things,food, drugs and even changes. Now I am slowly going off Lamictal as we had hoped to replace the trileptal with lamictal but I can not get above 50mg am and pm with out heart racing and not sleeping. So I am really not sure where to turn now. I have really no more options and I am still having losses of speech andsimple partials. I think I would rather have the DR. just say this is the most we can do and let us try to help you do as best as you can this way. But instaed keeps wanting to make changes and I am at the point I do not want new drugs added and I want to be on the lowest number as possible. Wow, if you read all this pat your self on the shoulder:) :)My question is what would you do if you were in my situation at the end of your options. Learn to deal with it as is or ?????? I even wonder if I would toleralte a monotherapy at a higher dose better then two or three at lower levels. So they are not increasing the side affects. So I am interested in know ing others view oof this also.I am not likeing the thought of all these drugs in my bodyand not really helping me and since my DR. now has asked me and I quote " What do you want to do now? " I just would be interested in knowing others thoughts.Fortunately I am trying some medicinal herbs and am hopeful but there are some issues that come with one that is helping me. Look forward in hearing from others thanks.

Comments

RE: My med options???

Submitted by grez-monkey on Wed, 2005-06-01 - 13:26

Cedar,

I remember you posting something like this one just a few days ago and I did a reply, but realized that I should have added more details about what I found, what I'm doing and the positive results from it.

Now, first, I posted a thread under my other user name of 'batman', with the subject title of "Epilepsy Treatment Plan". Hopefully this website address will connect you to it. http://communities.epilepsy.com/epilepsy_community?go=800741

I did find another website a day or so ago, which has some good information. It is at www.moondragon.org/health/disorders/epilepsy.html. The whole website page is a good sized one, explaining alot about epilepsy. But get this, scroll down about half way of the whole page and locate the section of CONSIDERATIONS. Below the third paragraph are four separate weblinks to more information. I clicked on the one for Alkalosis, which takes you to another webpage with information pertaining to it. Once you get to this webpage, right in the description, it has the words of, 'Alkalosis is the inverse of acidosis.' Whenever you have the time, click on the underlined word, acidosis, and it will advance to a webpage with information about it.

There is alot of information over each of these websites, but what it describes and points out, is basically along the lines of what I'm working with via the epilepsy treatment plan. I've contacted the clinic I went to which supplied the notebook packet about the epilepsy treatment plan, and awaiting for a response back for authorization to post anything in detail.

If you'd like to get the treatment plan packet directly from them go ahead a contact:

Lora Cain, R.N.; ph#(757) 428-3588, ext. 7340. and ask for more information and how to get a Epilepsy Treatment Plan & Research Protocol. I believe it was only around $50.00.

If there's anything else you'd like to find out about this, please reply here, and or email message to bruce903@hotmail.com

This process is simple, somewhat easy and doesn't cost huge amounts of money pertaining to the cost of medications and doctor visits. Plus, if you do like I did and plan to do again maybe in November, is go out to the clinic located right on the oceanfront of Virginia Beach, Virginia. ItÂ’s like going on a relaxing vacation. Preferably in early spring or mid- / late-fall, where the hotel prices are cheaper because it is the time away from the heavy tourist season.

Number one thing to remember Cedar...DON'T GIVE UP!!!

Bruce CJ

Cedar,

I remember you posting something like this one just a few days ago and I did a reply, but realized that I should have added more details about what I found, what I'm doing and the positive results from it.

Now, first, I posted a thread under my other user name of 'batman', with the subject title of "Epilepsy Treatment Plan". Hopefully this website address will connect you to it. http://communities.epilepsy.com/epilepsy_community?go=800741

I did find another website a day or so ago, which has some good information. It is at www.moondragon.org/health/disorders/epilepsy.html. The whole website page is a good sized one, explaining alot about epilepsy. But get this, scroll down about half way of the whole page and locate the section of CONSIDERATIONS. Below the third paragraph are four separate weblinks to more information. I clicked on the one for Alkalosis, which takes you to another webpage with information pertaining to it. Once you get to this webpage, right in the description, it has the words of, 'Alkalosis is the inverse of acidosis.' Whenever you have the time, click on the underlined word, acidosis, and it will advance to a webpage with information about it.

There is alot of information over each of these websites, but what it describes and points out, is basically along the lines of what I'm working with via the epilepsy treatment plan. I've contacted the clinic I went to which supplied the notebook packet about the epilepsy treatment plan, and awaiting for a response back for authorization to post anything in detail.

If you'd like to get the treatment plan packet directly from them go ahead a contact:

Lora Cain, R.N.; ph#(757) 428-3588, ext. 7340. and ask for more information and how to get a Epilepsy Treatment Plan & Research Protocol. I believe it was only around $50.00.

If there's anything else you'd like to find out about this, please reply here, and or email message to bruce903@hotmail.com

This process is simple, somewhat easy and doesn't cost huge amounts of money pertaining to the cost of medications and doctor visits. Plus, if you do like I did and plan to do again maybe in November, is go out to the clinic located right on the oceanfront of Virginia Beach, Virginia. ItÂ’s like going on a relaxing vacation. Preferably in early spring or mid- / late-fall, where the hotel prices are cheaper because it is the time away from the heavy tourist season.

Number one thing to remember Cedar...DON'T GIVE UP!!!

Bruce CJ

RE: My med options???

Submitted by scorpio on Wed, 2005-06-01 - 14:02

Have you tried acupuncture?  One acupuncturist (in Singapore) was able to control my epi 100% (from 5-10 seizures per week).  Others (mainly in London, where I live) have been variously successful though their treatments have always helped.  I do not 'believe' that acupuncture can be effective: for me the evidence is there, since I can count the number of seizures I have, or, rather, don't have but, as I said earlier, practitioners do vary. 

Whatever, I hope you find some means of controlling the epi.

Chris

PS.  It helps if you live in a metropolitan area, of course, since you are more likely to have an acupuncturist close by (national acupuncture associations, listing registered practitioners, all have their own websites).  Needless to say, I could expand on the subject and my experience of it, if interested.

Have you tried acupuncture?  One acupuncturist (in Singapore) was able to control my epi 100% (from 5-10 seizures per week).  Others (mainly in London, where I live) have been variously successful though their treatments have always helped.  I do not 'believe' that acupuncture can be effective: for me the evidence is there, since I can count the number of seizures I have, or, rather, don't have but, as I said earlier, practitioners do vary. 

Whatever, I hope you find some means of controlling the epi.

Chris

PS.  It helps if you live in a metropolitan area, of course, since you are more likely to have an acupuncturist close by (national acupuncture associations, listing registered practitioners, all have their own websites).  Needless to say, I could expand on the subject and my experience of it, if interested.

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