Does anyone out there know if any of the herbal treatments are effective or not? I have been talking to an "herbologist" who has given me some options, but I don't really want to get involved until I talk to the neuro (1st appt on the 21st). I'd rather not get too involved with the prescription drugs if possible. I'm already on Lamictal - 50mg, but that's supposedly more of an anti-depressant/mood stabilizer from the Psych.
Any info is appreciated. 
Peace, Love and Happiness
Peace, Love and Happiness
AmandaJane
AmandaJane, I whole heartedly agree with Jen. It is too risky to try fighting seizures without the meds. If there were clear evidence of herbal therappy stopping seizures more people would try it. Try and work with your neuro and find a med that works best for you with the least side effects....
I would have to agree about the meds. True, it does suck to be dependent on medications but if it's what can make your overall life better and safer, I think it's the way to go. I was on Lamictal before, well for about 2 years I believe. It really helped with my seizure control for the most part. I had to switch because i wasn't happy with having seizures every 6 months- i'd rather be seizure free instead! I would talk to your neuro before you do anything else and see what they say. Hope that helps. ~Jessica
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday
I'm a believer in herbal treaments, but when it comes to the brain I wouldn't take the chance. I'm on Lamictal 750 mg, which is not for depression or mood swings in my case. I suffer from catamenial seizures related to my cycle and only have break thru seizures when I am ill. Crazy as it sounds my body is so sensitive to drugs that I had to start out at a childs dose 25 mg. It took me several years to increase it to a controlled level (only because of my personal sensitivity)
Many others have no problem going on high doses and managing just fine. Honestly, 50 mg is the same dose my friends 4 yr old son is on. Seems rather low for an adult (which I'm assuming you are). My neuro said it's one of the drugs that has the least side effects and I was the one who suggested going on it after I read up on it. The standard protocol for most neuro's is to hit it hard with heavy duty anticonvulsants to get control and understandable so. But my thought was....I want a quality life where I don't feel like a zombie all day. I could have gotten control sooner and due to the nature of catamenial seizures I could tolerate 2-4 a month because I knew around which day they would happen (like clock work) and could adjust my life accordingly. NOT THE CASE FOR MANY PEOPLE AND CERTAINLY DON'T WANT TO PERSUADE ANYONE IN THAT DIRECTION.
Work hand in hand with your neuro, do some research yourself and don't be afraid to make suggestions to your Dr. everyone is different and what may work for one doesn't necessarily work for all.
Hope you find some answers
cm
Many others have no problem going on high doses and managing just fine. Honestly, 50 mg is the same dose my friends 4 yr old son is on. Seems rather low for an adult (which I'm assuming you are). My neuro said it's one of the drugs that has the least side effects and I was the one who suggested going on it after I read up on it. The standard protocol for most neuro's is to hit it hard with heavy duty anticonvulsants to get control and understandable so. But my thought was....I want a quality life where I don't feel like a zombie all day. I could have gotten control sooner and due to the nature of catamenial seizures I could tolerate 2-4 a month because I knew around which day they would happen (like clock work) and could adjust my life accordingly. NOT THE CASE FOR MANY PEOPLE AND CERTAINLY DON'T WANT TO PERSUADE ANYONE IN THAT DIRECTION.
Work hand in hand with your neuro, do some research yourself and don't be afraid to make suggestions to your Dr. everyone is different and what may work for one doesn't necessarily work for all.
Hope you find some answers
cm
You guys are definitely right. I saw the neuro on Monday...he upped my dosage (gradually of course) to 200 mg a day. The psychiatrist was the one who put me on 50 mg. As unfortunate as it is, I realize from reading info here that it is very important to use the medication for control. Thanks for the input and thanks for caring.
Keep on and thank you all
Peace, Love and Happiness
AmandaJane
I just wanted to say although I don't take any herbal treatments I believe there are probably many people who do. We just don't hear about them. It's the same reason I think we don't know much about herbal remedies effectiveness with epilepsy. I wish more doctors would do research into it because there are about 3 billion other people in this world and I'm sure that not all of them rely on good old western medicine. What DO other people do?
I myself take ginger every day- not the pill form. But real, crystallized ginger ( Reed's All Natural Ginger Candy). I don't think it directly helps my seizures one bit but it is very soothing and seems calming to me. If you like ginger ale, this is like ginger-godzilla-ale! It's that pungent. Hey, maybe for the people that smoke out there, when you get a craving, you can try this. It's that powerful! Anyway, I like it...
Does anyone use anything for headaches other than tylenol? I'm sick of popping tylenol for my pounding headaches. I wheeze and get hives from advil and aspirin...
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d
My daughter has had frequent nearly fatal seizures that started when she was an infant and after her neuro switched her medication 3 times in the first year because they couldn't get a handle on the seizures we decided to use herbal therapy in conjunction with the medication. A good herbalist will not ask you to stop the medication you are taking, ours didn't. We were desperate for something to help our baby and a more natural approach seemed to make sense at the time. Along with her meds she was put on an organic diet, as well as various herbal supplements. The seizures did occur less frequently however we can't say for sure if it was the herbal therapy or just the course that her seizures were going to take anyway. Ultimately we discontinued use of the herbal therapy. Maybe it would have helped but I had only one herbalist to talk to and a whole practice full of neuros to ease my mind that I was doing the right thing. Maybe you will have better results.
Hi Goodwitch! Sheena here...I use Tiger Balm the rub on my neck and a teeny weeny bit on my temples for my headaches I am in Canada I am not sure if it is available in the US ....and DO not get it near your EYES!!! but it does help my headaches if Iput it on my shoulders my neck etc....(((Sheena))) 
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
Yes, you NEED THE DRUGS!!!!
They are what stop or slow the abnormally fast nueronal firing. Herbs do not and mever will have chemicals in them needed to achieve this. It is a problem with how the neurons fire. The only way to balance that and cause it to cease some is with AEDs.
HERBS ARE NOT SOMETHING RECOMMENDED FOR EPILEPTICS AT ALL!!!
Before I fell ill again, I posted a HUGE list of all the herbal remedies that can't be messed with while having siezure or taking those seizure drugs. I am sure that the page is still there. In fact, I seperated them, because I had to look in my other neurology book to find the others.
They cause break-through seizures, loss of seizure control, and weaken the effects of the Seizure drugs.
They interact with a bunch of AEDs, and the ensuing result is NOT good.
Lamictal's FIRST AND FOREMOST use is for treating partial seizures in adults with epilepsy that have not responded to other drugs and some generalized types of seizures. It's second use is to treat Trigeminal Neuralgia as well as other neuralgias. It's third use is for status epilepticus, the 4th use is for resolving ED in epileptic men who take/took this drug and finally for the use in the treatment of Rapid Cycling BiPolar Disorder. It is NOT an anti-Depressant.
There is NO herb out there anywhere that will lessen or decrease seizure activity in anyway. So please, take the drugs, and 50 isn't much, so you will have to get more at some point in time, bnecause that isn't enough to touch your seizures.
I am not going to give you false information. I am a lisenced EMT and RN--Neurology, and just started back to work part time in an EMU--no more than 20 hours a week. It goes by fast, and I get to sit on my butt alot watching EEGs and monitors. I am not sure how long this will last, though. We shall see.
nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.
Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.
Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.
Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.
Have failed 7 other drugs.
Taking Depakote-1250 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
They are what stop or slow the abnormally fast nueronal firing. Herbs do not and mever will have chemicals in them needed to achieve this. It is a problem with how the neurons fire. The only way to balance that and cause it to cease some is with AEDs.
HERBS ARE NOT SOMETHING RECOMMENDED FOR EPILEPTICS AT ALL!!!
Before I fell ill again, I posted a HUGE list of all the herbal remedies that can't be messed with while having siezure or taking those seizure drugs. I am sure that the page is still there. In fact, I seperated them, because I had to look in my other neurology book to find the others.
They cause break-through seizures, loss of seizure control, and weaken the effects of the Seizure drugs.
They interact with a bunch of AEDs, and the ensuing result is NOT good.
Lamictal's FIRST AND FOREMOST use is for treating partial seizures in adults with epilepsy that have not responded to other drugs and some generalized types of seizures. It's second use is to treat Trigeminal Neuralgia as well as other neuralgias. It's third use is for status epilepticus, the 4th use is for resolving ED in epileptic men who take/took this drug and finally for the use in the treatment of Rapid Cycling BiPolar Disorder. It is NOT an anti-Depressant.
There is NO herb out there anywhere that will lessen or decrease seizure activity in anyway. So please, take the drugs, and 50 isn't much, so you will have to get more at some point in time, bnecause that isn't enough to touch your seizures.
I am not going to give you false information. I am a lisenced EMT and RN--Neurology, and just started back to work part time in an EMU--no more than 20 hours a week. It goes by fast, and I get to sit on my butt alot watching EEGs and monitors. I am not sure how long this will last, though. We shall see.
nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.
Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.
Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.
Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.
Have failed 7 other drugs.
Taking Depakote-1250 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
Sheena- Thanks for the advise about Tiger Balm! I definitely don't need any more drugs. My doctor has been working with me on my headache issue for the last 3 visits and I'm sure it's going to be an ongoing issue, probably all interrelated to the meds and my angioma, etc,etc, etc.
Nancy- I totally agree with you about the herbal treatment issue. Nobody should try to treat themselves or take advise regarding their own medical treatment other than their own doctor. The worse thing a person could do is ASSUME they know enough to treat their own condition and alter things around. That's how people get into BIG trouble. God knows how may people have died experimenting with bogus or unfounded treatments! 
Always, Always discuss things with your doctor. It's hard for all of us to listen to friends, relatives, people at the checkout in the supermarket talk about the latest "cure" for whatever, but we have to resist the urge to try something that doesn't have any proof of being effective. 
.
Always, Always discuss things with your doctor. It's hard for all of us to listen to friends, relatives, people at the checkout in the supermarket talk about the latest "cure" for whatever, but we have to resist the urge to try something that doesn't have any proof of being effective. .Whether the herbal treatments are viewed as "harmless" by some people or not, it's too risky for people with conditions like epilepsy. We have too much to lose if something goes wrong..
The only thing I would say in defense of alternative treatments in general, is that there are things we just don't understand about the human body that modern medicine just doesn't address. Even the placebo effect is not well understood. Maybe someday science will understand how it all fits together. I DO know that as long as the drugs make me feel horrible, I will always be hoping that research finds better solutions than MORE drugs for people like me! 
So, AmandaJane- hang in there! Your neuro will guide you! Glenda
complex partial seizures since 22
Your neuro will guide you! Glendacomplex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d
Goodwitch-your welcome - just make sure not to get it near your eyes or near your mucous membranes it will sting/burn like crazy!! But it does wonders on the shoulders/neck for the tension/migraine headache and a little on the temples ...remember just a teeny tiny dab!!! And I agree totally with you about the herbal remedies for E....one should always ask neuro/doctor before trying anything herbal.....they are the doctors!!! take care (((Sheena)))
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
Hi all,
Just lurking and want to put my two cents in here... Lots of 'herbal/natural' info available since the internet came around... Seems funny to me that people would pay good money to a person who has studied medicine for 10-12 years (plus all the experience they have) and then turn around and trust any old guy who can build a website and sell capsules of tree bark and other flora. I understand that there are non-medical interventions (like Tiger Balm or Vicks) that help relieve sypmtoms and I'm not condemning them. I just figure that if any of the 'natural' treatments for disease worked ... they would immediately be classified as a drug...(DUH!) so then I guess they wouldn't be 'natural' anymore, would they? They would become prescription drugs! Case in point, foxglove=digitalis for congestive heart failure. No reasonable herbalist will sell foxglove because it contains a real drug! Hmmm...
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
Just lurking and want to put my two cents in here... Lots of 'herbal/natural' info available since the internet came around... Seems funny to me that people would pay good money to a person who has studied medicine for 10-12 years (plus all the experience they have) and then turn around and trust any old guy who can build a website and sell capsules of tree bark and other flora. I understand that there are non-medical interventions (like Tiger Balm or Vicks) that help relieve sypmtoms and I'm not condemning them. I just figure that if any of the 'natural' treatments for disease worked ... they would immediately be classified as a drug...(DUH!) so then I guess they wouldn't be 'natural' anymore, would they? They would become prescription drugs! Case in point, foxglove=digitalis for congestive heart failure. No reasonable herbalist will sell foxglove because it contains a real drug! Hmmm...
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
Jeannie...interesting point...however ..using vicks on your chest for a cold or tiger balm on your muscles to relieve a headache is a far cry from using herbal remedy instead of AED's to control Epilepsy. Or insulin to control diabetes, for instance. Have a good day, Sheena
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
Jeannie-
Good point...
I believe Herbal remedies in this country are treated as dietary supplements (!!), therefore not regulated by the FDA as drugs. 
The strength of the herbs vary wildly from product to product depending on where you get them and the uninformed consumer doesn't even know what they may be getting! totally agree with you that since the internet, a lot of people have spent their hard earned money on remedies that claim to fix any thing from baldness to cancer. Unfortunately, " a fool and his money are soon parted". I hope that most people will not be so foolish to abandon good common sense and throw their doctor's advise out the window.
The strength of the herbs vary wildly from product to product depending on where you get them and the uninformed consumer doesn't even know what they may be getting! totally agree with you that since the internet, a lot of people have spent their hard earned money on remedies that claim to fix any thing from baldness to cancer. Unfortunately, " a fool and his money are soon parted". I hope that most people will not be so foolish to abandon good common sense and throw their doctor's advise out the window. I think the herbal remedies I see at the grocery store treat mostly symtoms like the common cold and don't claim to make fantastic claims but I HAVE seen some on the internet that make me sick to my stomach because there are people falling for this stuff and spending loads of money as well as endangering their lives. The point is....Follow your doctor's advise. Use common sense. If it sounds to good to be true, it probably is.
p.s. What do you think or Acupuncture?
Sheena- Think I'll use that Tiger Balm for my headache now...
complex partial seizures since 22
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d
I dont even belong here, I'm from the fibro forum, but since you asked I think acupuncture is amazing. I don't think it can cure cancer or anything but I know it can help with pain. I've had accupressure treatments for my fibro pain and muscle cramps and have to admit it really works. And I understand that the nerves are connected because I remember something I learned in nurse's training about 'referred pain'. One example was to be aware that if a female patient had shoulder pain it was a symptom of a tubal pregancy... which seemed weird at the time til they explained that the nerves that are for the fallopian tubes and the ones for your shoulder run up the spinal cord nest to each other. Seems that intense pain can sometimes affect the nearby nerves in the cord... or something like that... So why not acupuncture?
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
I have heard people doing the herbal treatment if the have intractible Epilepsy, and no other meds will help/control. I have heard of multivitamin, b-complex, flaxseed oil, magnesium being used. B-complex is for the nervous system and the others used in combo may help. You should talk with the Dr/neuro about this. They ususally are not believers in holistic treatment, but if AED's aren't working something else may. I am a believer in holistic healing. But I take Keppra for my Epilepsy. Sometimes herbal treatments just don't cut it. Take care Tracy
I use a multivit., B-complex, Cal. magnesium as I believe all women should. Although, I can honestly say it hasn't stopped me from having seizures and I still take my Lamictal faithfully. Speaking about making adjustments in your medication....I have a high sensitivity to almost all drugs and found a way to keep it in my system yet not zonked for the day. I take my meds 4x's a day instead of the usual 1x or 2x's a day at very high doses. It works for me and my neuro said if you're disciplined enough to do it, great. So, I take a total of 750 mg per day with the largest dose of 400mg at night. I feel it's given me a better quality of life. I don't suffer from the pounding headaches, blurred vision and lethargy that come from the higher doses. It may be something to think about and discuss with your neuro.
cm
cm
cm-
My neuro said it was ok to take a multi vitamin, he had no objection to that. But other than that statement, he didn't have much else to add. Do you think the change in your dosing pattern has helped you or the vitamins? I don't take vitamins now, only because I have a sensitive stomach, but I'm going to consider doing so if there is any chance that I may get some relief of my headaches. My neuro thinks my headaches are related to my angioma but I'm still looking for ways to reduce my symptoms. Thanks. Glenda
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d
I was wondering if any of you suffer with migraines. I take imitrex for my migraines, but really the side effects can be worse then the migraines. Tyneol does not touch my headaches. I haven't found alot of relief with anything over the counter. I do not have seizures now, I had surgery and it stopped the seizures, but still have migraines.
I take a muti-vitamin everyday, but do not take herbal remedies. I had thought about diet supplements but I am afraid of the side effects because I am still on lamictal. I dont' need to loose alot of weight, just about ten pounds and I would be happy, I am 5'8 and 134 lbs. Guess I can't accept that now that I am older (41) that my body has shifted and things aren't exactly in the right places as when I was twenty, lol
I do try and take care of myself, I exercise everyday and try to avoid junk food. I believe that taking care of yourself can help your over all health and help relieve stress that can cause seizures.
I am so glad I have found this web site, it has been most interesting reading about all of your experinces with epilespy, because I can so relate.
Do any of you have trouble sleeping? I hardly ever sleep all night, I usually wake up 2-3 times a night. I know that lack of sleep can cause a seizure. I don't want to come dependent on sleeping pills, any sugestions?
God Bless!
mercyme
I take a muti-vitamin everyday, but do not take herbal remedies. I had thought about diet supplements but I am afraid of the side effects because I am still on lamictal. I dont' need to loose alot of weight, just about ten pounds and I would be happy, I am 5'8 and 134 lbs. Guess I can't accept that now that I am older (41) that my body has shifted and things aren't exactly in the right places as when I was twenty, lol
I do try and take care of myself, I exercise everyday and try to avoid junk food. I believe that taking care of yourself can help your over all health and help relieve stress that can cause seizures.
I am so glad I have found this web site, it has been most interesting reading about all of your experinces with epilespy, because I can so relate.
Do any of you have trouble sleeping? I hardly ever sleep all night, I usually wake up 2-3 times a night. I know that lack of sleep can cause a seizure. I don't want to come dependent on sleeping pills, any sugestions?
God Bless!
mercyme