I don't know if there's a stigma to alternative therapies. I certainly think there's a stigma to Epilepsy! Medication may be the most tried and true but it's not necessarily the answer for everyone. Anyone that's has it, tried different medications, experienced side effects, poor seizure control etc may be open to 'alternatives'. If they work, it's like they say "if it ain't broke, don't fix it".
Is there a stigma with alternative therapies?
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spinnymommy
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Birthdays are for eating chocolate! cake, icecream, syrup, kisses, bars, Hersheys, Nestles, Ghirardelli, Lindz, etc. etc.
RobinN
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YUM!
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Yes I think there is a stigma. I'll try almost anything.
I've tried 19 differend AEDs I have VNS and I hope get into the RNS clinical study. I had brain surgery in 1982 and there still coming strong I give up.
Belinda
I've tried 19 differend AEDs I have VNS and I hope get into the RNS clinical study. I had brain surgery in 1982 and there still coming strong I give up.
Belinda
My neuro isn't big
on alternative stuff, either. BUT....I've gone thru most of the meds available for my case, and I have so many other issues on top of the E, that he HAD to start looking to alternative stuff.
He would have preferred to do surgery for several of my issues, but because of my E, can't. So, he's been in close contact with my PCP, who DOES do alternative stuff, and has brought in a chiropractor into his office. This guy also does physical rehab work, and along with the massage therapist they've hired, I'm making progress.
I'm tickled pink. Yeah, I still take my meds. I'll probably never get off. But, I have the alternative stuff in there, too, helping out immensely. WHEW!!! I would probably be headed for disability if I hadn't been hooked up with this guy. Everybody at work has noticed the difference.......:banana::banana::clap::clap:
on alternative stuff, either. BUT....I've gone thru most of the meds available for my case, and I have so many other issues on top of the E, that he HAD to start looking to alternative stuff.
He would have preferred to do surgery for several of my issues, but because of my E, can't. So, he's been in close contact with my PCP, who DOES do alternative stuff, and has brought in a chiropractor into his office. This guy also does physical rehab work, and along with the massage therapist they've hired, I'm making progress.
I'm tickled pink. Yeah, I still take my meds. I'll probably never get off. But, I have the alternative stuff in there, too, helping out immensely. WHEW!!! I would probably be headed for disability if I hadn't been hooked up with this guy. Everybody at work has noticed the difference.......:banana::banana::clap::clap:
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I have a Vns doc and a neuro..My epilepsy doc I'VE been with 18 yrs this sept.
longer any of his patients.He's sent me off to specialist.(epiltologist) well reknownI also came back to him one when he put me on Tegretol XR my sz's went through the roof and my neuro knew to take me the drug my seizures went back to normal.
Belinda:twocents:
longer any of his patients.He's sent me off to specialist.(epiltologist) well reknownI also came back to him one when he put me on Tegretol XR my sz's went through the roof and my neuro knew to take me the drug my seizures went back to normal.
Belinda:twocents:
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I totally agree. There is a stigma towards alternative therapy. Alternative therapy in India( Yoga, Ayurveda , Unani , sidhha ...) are all based on ancient texts or dicta that do work . but under the right conditions. They were meant to treat people who respected the caregiver ( ancient "doctor") and did what he told them to . period. In ayurveda for example there are cures to various diseases , but they involve changing your dietary habits, performing various exercises AND taking the medication given to you. Not many people are capable of doing that today. You want a fast cure to everything , you get what you want. why do you think the pharma companies design symptom cure drugs ? because YOU , the consumer , wants a pill that you can pop and get back to work. YOU don't care if the disease is gone as long as the symptom is. Skillefer is totally right about the perception of epilepsy. In the pharmacological world it's out of sight- out of mind. What does the average person care if the guy they're talking to has epilepsy unless they have a seizure in front of them? And presto - you have a drug that prevents that guy from having a seizure in front of you. A good example is the treatment of Gaucher's disease. Its the only metabolic disease to have a cure . why? because it's the most common - ergo more moolah. Why design a drug to CURE epilepy when so many people have it . it s better to keep their symptoms under control and have them keep buying the stuff all their lives. General population doesn't care , and to be frank epileptics don't care. Every person who claims to use "alternative medicine-and-is-proud-of-it" on this forum has either had bad side effects from standard medication , or the standard meds haven't worked at all. I personally don't care that my disease isn't going away. I just know that if i pop that pill i can work , study , play , whatever withou having a seizure and that's what matters to me. These are harsh words but they are the truth
alivenwell
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Could it be mind over matter?
When traditional drugs no long work, that can lead somebody into the direction of alternative medications or procedures.
Alternative medications/procedures that work can become traditional methods.
Taking action to overcome epilepsy may give somebody a sense of control due to frustration and stress. And stress is one huge factor for some of us.
I am fascinated with people who are capable of altering their brain waves and significantly lowering their blood pressure during meditation. How do they do that? What training did they have throughout their life to pick up these techniques. These are real people and their medical results are measurable.
Personally, I am doing the traditional medicated fast treatment. It works for me. I would love to know a method that could help me wake up without the hangover when I didn't drink or party the prior night.
When traditional drugs no long work, that can lead somebody into the direction of alternative medications or procedures.
Alternative medications/procedures that work can become traditional methods.
Taking action to overcome epilepsy may give somebody a sense of control due to frustration and stress. And stress is one huge factor for some of us.
I am fascinated with people who are capable of altering their brain waves and significantly lowering their blood pressure during meditation. How do they do that? What training did they have throughout their life to pick up these techniques. These are real people and their medical results are measurable.
Personally, I am doing the traditional medicated fast treatment. It works for me. I would love to know a method that could help me wake up without the hangover when I didn't drink or party the prior night.
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stilldancing_98
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This is stuff I have discussed with my Dr. mind over matter. I know for me it works. And Drarvindr, I dated somebody from India, he tought me a lot about your beliefs, I already meditate. And I so believe every body is looking for the quick way out.Excercise , eating, how you handle your stressors, this all affects our health. You can not have a feel sorry for yourself attitude. We all go thru our times. And yes , I think there is a stigma to alt. therapies.I will do the alternative for both me and my son.But, I will take my meds.To.I love to excercise, eat salads,and meditate.My son does the same. But I am still taking my meds.
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I think you will find that the people who are seeking out alternative solutions are highly (self-)motivated to do whatever it takes.
I agree with your comments though. The medical industry has no real incentive to go beyond treating symptoms.
Getting the word over.
As I have already said above, "I only use B vitamins (mainly B6) to control my many different types of seizures." I would just like to add that in just over 38 years of having epilepsy I have never used any AEDs to control my seizures. AEDs have NO positive effects on my seizures. Apart from absent type seizures, I have been approx. 18 years free of all my many different seizure types, using B vitamins only.
It was vitamin B6 in the form of Pyridoxine (PN) Hydrochloride (HCl) that gave me a normal childhood. It was a trial of AEDs that disrupted my schooling and my life.
During this time (nearly 38 years of using vitamin B6 to control my seizures) I have experienced some doctor’s question why I am taking so much vitamin B6. I remember one doctor was going to stop my B6. This would have been fatal for me. I was studying away from home at the time. I told the doctor to get in touch with my GP back home who explained the situation. I can well understand some doctors not believing me when I tell them that I only use B vitamins to control my epileptic seizures. My condition is so rare and unheard of.
This is why I am posting on several forums around the world and emailing the worlds top nutritional/medical organizations.
Vitamin B6 has saved lives.
Andrew
As I have already said above, "I only use B vitamins (mainly B6) to control my many different types of seizures." I would just like to add that in just over 38 years of having epilepsy I have never used any AEDs to control my seizures. AEDs have NO positive effects on my seizures. Apart from absent type seizures, I have been approx. 18 years free of all my many different seizure types, using B vitamins only.
It was vitamin B6 in the form of Pyridoxine (PN) Hydrochloride (HCl) that gave me a normal childhood. It was a trial of AEDs that disrupted my schooling and my life.
During this time (nearly 38 years of using vitamin B6 to control my seizures) I have experienced some doctor’s question why I am taking so much vitamin B6. I remember one doctor was going to stop my B6. This would have been fatal for me. I was studying away from home at the time. I told the doctor to get in touch with my GP back home who explained the situation. I can well understand some doctors not believing me when I tell them that I only use B vitamins to control my epileptic seizures. My condition is so rare and unheard of.
This is why I am posting on several forums around the world and emailing the worlds top nutritional/medical organizations.
Vitamin B6 has saved lives.
Andrew
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You're doing a great job too Andrew. :mrt: I feel the same way (a responsibility to increase awareness) about EEG neurofeedback.
Elaine H
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Hi Andrew
Great to hear from you, I hope you are getting a lot of positive feedback and support from this wonderful website, I know I have really enjoyed my time on here and everyone was more than supportive during my recent brain surgery.
I was interested to read about your taking B vitamins for your seizures, as I'm writing a book about my epilepsy, and have just finished a couple of university studies on epilepsy, I have not really heard from anyone else that has used B vits to help their epilepsy, tell me more, I'm intrigued. I was diagnosed with Temporal Lobe Epilepsy in 1986 at the age of 23 so I sympathise with you having been stuck with it for all that time, it's not much fun is it?
I agree with you about the lack of effect of anti-convulsants on my condition, I do however know that it is one of the more difficult types of epilepsy to control (trust me to be awkward) I have recently started taking Trileptal along with my Keppra, and they have actually stopped my terrifying auras, for which I shall forever be grateful!! I have always said that I could manage life with epilepsy if it wasn't for these terrifying Simple Partial/Auras, and I'm pleased to say that my surgery seems to have really helped my Complex Partials too, so I'm pleased about that, especially as it was my second lot of brain surgery, I was five years seizure free after the first op, then it decided to come back again.
Do you know what caused your seizures in the first place? Have you ever been offered surgery? Have you been happy with the treatment you've received for your seizures? What part of the UK are you in, I'm in Kettering, Northants, and have had Professor John Duncan looking after me at The National Hospital of Neurology and Neurosurgery, Queens Square, London, they have been fantastic over the years, but in the early days, I used to see a guy at Northampton General, and he would just peer over his glasses at me and say take another one of these, and come back in 6 months! I hated going there, I think it's such a personal, unique and quite terrifying condition, that I think it requires a sympathetic ear doesn't it?
Anyway, I hope you get as much from ths wonderful website as I have done, and that I hear from you in the near future.
Best Regards
Elaine
Great to hear from you, I hope you are getting a lot of positive feedback and support from this wonderful website, I know I have really enjoyed my time on here and everyone was more than supportive during my recent brain surgery.
I was interested to read about your taking B vitamins for your seizures, as I'm writing a book about my epilepsy, and have just finished a couple of university studies on epilepsy, I have not really heard from anyone else that has used B vits to help their epilepsy, tell me more, I'm intrigued. I was diagnosed with Temporal Lobe Epilepsy in 1986 at the age of 23 so I sympathise with you having been stuck with it for all that time, it's not much fun is it?
I agree with you about the lack of effect of anti-convulsants on my condition, I do however know that it is one of the more difficult types of epilepsy to control (trust me to be awkward) I have recently started taking Trileptal along with my Keppra, and they have actually stopped my terrifying auras, for which I shall forever be grateful!! I have always said that I could manage life with epilepsy if it wasn't for these terrifying Simple Partial/Auras, and I'm pleased to say that my surgery seems to have really helped my Complex Partials too, so I'm pleased about that, especially as it was my second lot of brain surgery, I was five years seizure free after the first op, then it decided to come back again.
Do you know what caused your seizures in the first place? Have you ever been offered surgery? Have you been happy with the treatment you've received for your seizures? What part of the UK are you in, I'm in Kettering, Northants, and have had Professor John Duncan looking after me at The National Hospital of Neurology and Neurosurgery, Queens Square, London, they have been fantastic over the years, but in the early days, I used to see a guy at Northampton General, and he would just peer over his glasses at me and say take another one of these, and come back in 6 months! I hated going there, I think it's such a personal, unique and quite terrifying condition, that I think it requires a sympathetic ear doesn't it?
Anyway, I hope you get as much from ths wonderful website as I have done, and that I hear from you in the near future.
Best Regards
Elaine
stilldancing_98
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All I can say here, is you guys teach and re-iterate what I am learning already. You never know who's life or lives you are going to touch. One right here.
What is
taught here can be spread, around the world for others to learn, too. It may take patience, and time, but it can be done. Nor will it be easy......but I am willing to do it.
Heaven knows I am stubborn enough to do it, are you?
taught here can be spread, around the world for others to learn, too. It may take patience, and time, but it can be done. Nor will it be easy......but I am willing to do it.
Heaven knows I am stubborn enough to do it, are you?
stilldancing_98
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At your service!
RobinN
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I wouldn't have for my daughter if I hadn't been lied to from the very first neuro appt that we had. I was told it was "the only way to keep her seizure free". I was told that "diet plays no role". I was told that "hormones are not a cause".
So when you lack knowledge you let others lead. When you gain knowledge you then ask questions, and chose your own direction.