17 yrs seizure free-old member returning to forums

Zoe

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Hello!
July marks 17 years of being seizure free with no drugs. Diet, and some non-drug approaches worked miracles for me. I got my seizures to stop ten years after a radical brain surgery failed to stop them.

There are many options for a lot of us to learn to reduce the risks of having a seizure and\or to stop them.

I was very active in this group for a long time. Health problems, not seizure related, and limited access to being online made it diffficult for me to keep up here. I can get wireless now, though usually go online just a few times a week.

Thanks for you note, Ruth, and I look forward to re-connecting with you. I'm looking forward to seeing who is still here from a while back and what's going on with newer members.
Cheers,
 

AlohaBird

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Hi Zoe!!

It's good to see you back on the forum. Welcome.

I look forward to hearing about what has worked for you.
 

Zoe

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Hi Aloha,
Here’s a link on slow breathing training (more to follow) at PubMed
http://www.ncbi.nlm.nih.gov/pubmed/20630807
In the right column of the page you will see other links. One is to a study done on using music (in this case, Mozart) for seizures. That study was small but pretty phenomenal. I also found music very helpful for slowing down seizure activity.

There’s also another link in that column to a study on acupuncture, this also helped me keep the seizures at bay.
 
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Zoe

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Hi CathyAnn,
I'm sure your great smile brightens many people's day! Nice to meet you too.
 

AlohaBird

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Hi Aloha,
Here’s a link on slow breathing training (more to follow) at PubMed
http://www.ncbi.nlm.nih.gov/pubmed/20630807
In the right column of the page you will see other links. One is to a study done on using music (in this case, Mozart) for seizures. That study was small but pretty phenomenal. I also found music very helpful for slowing down seizure activity.
Interesting.
There is a guy named Dr Jeffrey Thomas who is both a musician and a neurologist (interesting combo) who has a set of CDs for sale on Amazon that use certain frequencies and pulses (something Mozart evidently knew how to do intuitively) to guide your brainwaves. He has some CDs for alpha (alert) states and some designed to help you ease into sleep (Delta). Given that my seizures are nocturnal, I found the Delta wave ones very helpful.
 

KarenB

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I found the study on Mozart intriguing. Jon has a music video he enjoys that pairs Mozart with visual stuff (flowers, numbers, animals, etc.). He usually listens to that one (or another one that has a combo - Vivaldi, Mozart, etc with ocean stuff -- like fish and dolphins) in the morning. I have another one that's Beethoven that I used to play when he was postictal (after a seizure).

So...just Mozart? And what's up with the K.448? A two-piano sonata that's sort of upbeat.

So...I wasn't around when you were here before Zoe. What sort of dietary intervention do you follow? Our Jonathan (age 11) is on the Ketogenic Diet for the past 4 1/2 years, and 2 1/2 years seizure free now. He's got 2 more pills to go and he'll be AED free by the end of this week.
 

Nakamova

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Hi Zoe, welcome back! I've been around long enough to have overlapped with your earlier stint. Wonderful to hear that you've been seizure-free for so long. I'm looking forward to reading your posts and getting the scoop on what has worked for you.
 

Ruth

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Hi Zoe, glad to have you back. I hope your seizures didn't come back!!

You can stay here even if you don't have seizures. You are always welcome here.

:cheers: Ruth
 

Zoe

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Hi Aloha,

If you have a link on Thomas's stuff, I'd like to check it out.
Some years back I had some tapes, now they are made for mp3 or cds. They were for hypnosis and breathing exercises I used to help abort seizures if I felt one about to begin.

I got a recording from Dr. Steven Gurgevich. I believe the tape I got was for asthma and breathing. I never could listen to it without falling asleep. I bought copies and sent them to friends who have seizures. Everyone who got one of these found it useful to them. Here's a link to that audio. http://www.healingwithhypnosis.com/self-hypnosis-products/Asthma-and-Breathing__ASTHMA.aspx

This link is to his home page where you can find more information about him, his work, articles, audios for sale, and some free downloadable audios as well.
http://www.healingwithhypnosis.com/

There are three pieces of music that help me sleep and quiet down my nervous system, especially when falling into sleep.

1. Paul Horn's "Inside Taj Mahal. I think it was done in the late fifties. I have had a copy of it on hand most of my adult life.

2. Carlos Nakai's "Ancestral Voices." When I listen to this one, I have visions of the Arizona, and of the high desert in New Mexico where I lived for some time. It gives me a profound sense of peacefulness.

3.The jazz musician Tony Scott's "Music for Zen Meditation." He recorded this in 1964 and, like the Paul Horn recording, this has been one of the most soothing pieces of music for many decades.

Each of us have unique responses to music; what soothes one, may aggrevate another. Musicogenic seizures are seizures which are triggered by music. We each have to explore and find what may help us individually.

All of these should be available online. Just do a Google search on the titles and see what comes up. I think I will listen to the Nakai recording tonight.
 

Zoe

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Hi Karen,
No, I don't think just Mozart, it just happenned to be the one studied for who knows what reason. One that I used a lot is Beethoven's "For Elise," very haunting. I had a copy of it once played on guitar and wish I could replace it
 

Zoe

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Hi Bernard, I hope you Stacy and the kids are all well. Thanks for all the suggestions. I will check them out. We're probably due for a look at more recent research on diet changes and seizures too Nice to be back in this group!
Zoe
 

AlohaBird

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I'm so sorry. I goofed and called him "Thomas" above when his real name is Dr. Thompson. (My GP is Dr. Thomas here so I had a brain burp). So if anybody tried to google his CDs they might have gotten lost .
This is the Amazon page for all his CDs.

http://www.amazon.com/s/?ie=UTF8&keywords=dr+jeffrey+thompson+cds&tag=mh0b-20&index=popular&hvadid=1693710020&hvqmt=e&hvbmt=be&hvdev=c&ref=pd_sl_9e4t692gvl_e

I will give Dr Gurgevich a try too.

Sometimes the exact same piece of music can be very soothing to me or can make me feel like I am about to have a seizure. It usually is the 24 hours post ictal when I am really sensitive to things I would otherwise love.

For instance a couple of Dr. Thompson's CDs include humpback whale songs. On a normal day or night, these sound etherial and mysterious but very soothing as well. After a seizure the same track of whale songs to me sounds like the ominous soundtrack to a horror movie right before somebody gets killed.
 
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Zoe

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Hi Nakamova,

Thanks for the welcome. I just read your public profile. Over the years what things have you discovered that are most likely to set off a seizure and most likely to prevent one? What have you found on this site that is helpful for you?

Do you have any seizures now or are they fully controlled with your med? There are a lot of options for you to explore to reduce the risks of having a seizure.

Zoe
 

Zoe

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Hi Keith,

Thanks for the link on music, will check it out. Yes, yes, yes on seizures and digestive disorders. Going on a lactose and gluten free diet about 20 years ago gave me my first big success with stopping seizures, especially those which triggered horrific panic attacks with cardiac arrhythmia. Within a few months of getting off dairy and gluten, I no longer needed medication for my heart, that problem went away altogether.

Intestinal inflammation and seizure susceptibility ...
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by B Medhi - ?2009 - ?Cited by 4 - ?Related articles
J Pharm Pharmacol. 2009 Oct;61(10):1359-64. doi: 10.1211/jpp/61.10.0013. Intestinal inflammation and seizure susceptibility: understanding the role of tumour ...

http://www.ncbi.nlm.nih.gov/pubmed/19814869

This one I've posted in the past; it's very interesting.

Abdominal Epilepsy - Meridian Institute - Home Page
www.meridianinstitute.com/abepilep.htm
One of the primary problems in understanding abdominal epilepsy is clearly defining the relationship of the abdominal symptoms to the seizure activity in the .

http://www.meridianinstitute.com/abepilep.htm


Abdominal epilepsy, an uncommon cause of recurrent ...
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by SR Dutta - ?2007 - ?Cited by 8 - ?Related articles
Abdominal epilepsy is an uncommon cause of recurrent abdominal pain. ... stool examinations for ova and parasites, abdominal ultrasound, and upper and ...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856820/

Are you familiar with the Specific Carbohydrate Diet? I had a few issues with it but it helped me a lot when using it and as I transitioned to a lactose and gluten free diet. What links to diet and seizures have you seen and what have you tried for them? A few more links on SCD.

SEIZURE CONTROL on SCD! - Breaking the Vicious Cycle
www.breakingtheviciouscycle.info/.../eed1b555fbb70b5d9d2f991d833d...
Sep 24, 2003 - A new neurologist suggested the Ketogenic diet, which gave us a full year virtually seizure free. The second year of Keto found us frustrated, ...

http://www.breakingtheviciouscycle.info/book-reviews/detail/eed1b555fbb70b5d9d2f991d833dbdd046dcb740/

SCD and Seizures - Pecanbread.com
www.pecanbread.com/seizures.html
Jul 31, 2003 - If you're considering the Specific Carbohydrate Diet in your search for a seizure solution, chances are you've been down many roads before.

http://www.pecanbread.com/seizures.html
 

Ruth

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Zoe, you said that there needed to be a change of diet guidelines.

I also have kidney problems. Is there any information on that.
 

Zoe

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I found the study on Mozart intriguing. Jon has a music video he enjoys that pairs Mozart with visual stuff (flowers, numbers, animals, etc.). He usually listens to that one (or another one that has a combo - Vivaldi, Mozart, etc with ocean stuff -- like fish and dolphins) in the morning. I have another one that's Beethoven that I used to play when he was postictal (after a seizure).

So...just Mozart? And what's up with the K.448? A two-piano sonata that's sort of upbeat.

So...I wasn't around when you were here before Zoe. What sort of dietary intervention do you follow? Our Jonathan (age 11) is on the Ketogenic Diet for the past 4 1/2 years, and 2 1/2 years seizure free now. He's got 2 more pills to go and he'll be AED free by the end of this week.
Karen,

Have you and your son considered yoga training for him? That helped me and the son of a mom I met on the internet years ago. There have been some positive studies on learning the controlled deep diahragmatic breathing of yoga for controlling seizures in the past. That along with learning the postures and other aspects of yoga might benefit him in many ways. Congrats for him being able to get off the meds!

Yoga for Epilepsy - Yoga Journal
www.yogajournal.com/article/balance/seized-yoga/
Mar 13, 2013 - I experienced just about all the known symptoms (like simple complex and partial complex seizures) along with unrelenting pain throughout my ...

http://www.yogajournal.com/article/balance/seized-yoga/

Ha! Ha! I wrote this article some years ago and was tickled to see it republished recently

Yoga for Controlling Epileptic Seizures
hinduism.about.com › ... › Hinduism › Yoga & Meditation
The ancient Indian practice and philosophy of yoga is increasingly becoming a focal point of therapy and research in treating epileptic seizure disorders.

http://hinduism.about.com/od/meditationyoga/a/Yoga-For-Epileptic-Seizure-Control.htm

There was a review some years ago on studies of yoga for seizures. It was not conclusive, but there are many factors to this and it isn't like measuring drug treatments.


The way it seemed to me is the breathing exercises enabled me to slow my breathing, heart rate, and relax the blood vessels. This in turn prevented the hyperventilation and vascular spasms which set off the seizures. Over time it seemed my autonomic nervous system was re-trained. I learned to reflexively go into my slow breathing routine at the first hint of a seizure until that became my normal reaction to the seizure triggers, stopping them before they became full blown.
 

AlohaBird

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@ Ruth
I have to be really careful about kidney health too since I was only born with one. Since they discovered that, renal function has been something that the docs test me for regularly.

Since I went paleo, my renal function is much better. I think it has to do with getting the toxic things out of the diet such as fake coloring, MSG, seed oils produced with solvents and bleach, etc. And I really do think that gluten is toxic as well. Some people cope with it better than others but I don't think its's really good for anybody.

Within that toxin-free framework, though, you can structure a paleo diet any way that suits you. It can be heavier on the meat or you can go seafood only. Fresh veggies and fruits, nuts, seeds, etc. Some people like their paleo higher in the carbs some lower. Personal preferences.

Going toxin free in your diet allows your kidneys to get caught up and maybe do some healing too. Modern life with pollution in the air, water, soil, already puts a load on the kidneys.
 
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