Anyone Dealing With Epilepsy?

[k-dawg]

Howdy all,
Back in early 2010 my boy contracted pneumococcal meningitis...luckily he survived but he's been left with hearing loss (which really sucks 'cause we're a musical family), brain damage and epilepsy. He's on some anti-seizure drugs but they only help a little--he still has about 5-10 seizures a day. I've been praying to Brighid every night in hopes for a little help but I feel like I need more. Are there some herbal combos out there that might help? Someone recommended marijuana to me but, hmmm, well, you know.... not the worst idea but a lot of people aren't cool about giving that to kids....His illness has interrupted my Druid training and that's also frustrating--although it led me to start learning guitar....Any suggestions for a sad mom???

/|\ K

[k-dawg]

OK, I may have freaked some of you OBODy's out with the suggestion of weed for children & I agree...it hasn't been sufficiently tested & researched out but neither have most epilepsy treatments. Here are some weblinks...make your own decision. I'm just an apprentice healer and naturally I want to help my family and friends as much as I'm capable. Unfortunately, the requirements for a college degree in music ed. or English don't have much science in them & my last biology class was quite a while ago so I have to depend on a bunch of "medical" (hmmm.... ) doctors for treatment....they just like to push surgery & drugs...and lets face it folks, does it matter if a drug came from the creepy dude around the corner or from the pharmacy? They are ALL DANGEROUS & POISON US AS MUCH AS THEY CURE US!!!!!!!

Here are some drugs my son has been on and their possible side effects:

Trileptal (Oxcarbazepine)
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000176/
What side effects can this medication cause?
Oxcarbazepine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
• dizziness
• drowsiness
• vision changes
• double vision
• fast, repeating eye movements that you cannot control
• diarrhea
• constipation
• heartburn
• stomach pain
• loss of appetite
• changes in the way food tastes
• dry mouth
• weight gain
• shaking of a part of the body that you cannot control
• difficulty coordinating movements
• falling down
• slowed movements or thoughts
• speech problems
• forgetfulness
• difficulty concentrating
• nervousness
• mood swings
• back pain
• muscle weakness or sudden tightness
• acne
• toothache
• earache
• hot flushes
• increased sweating
• cold symptoms
• nosebleed
• swelling, redness, irritation, burning, or itching of the vagina
• white vaginal discharge
Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:
• swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
• seizures that last longer or happen more often than in the past
• headache
• unusual thirst
• nausea
• vomiting
• weakness
• confusion
• decreased alertness
• rash
• bumps or blisters in the mouth, on skin, or genitals
• red or purple-colored blotches or dots on skin
• red, irritated eyes
• itching
• fever
• swollen glands in the neck or under the arms
• yellowing of the skin or eyes
• unusual bruising or bleeding
• bleeding from the rectum or blood in stools
• sore throat, cough, chills, and other signs of infection
• increased, decreased, or painful urination
• joint pain
• chest pain

Depakote (Valproic Acid)
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000677/
What side effects can this medication cause?
Valproic acid may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
• drowsiness
• dizziness
• headache
• diarrhea
• constipation
• heartburn
• changes in appetite
• weight changes
• back pain
• agitation
• mood swings
• abnormal thinking
• memory loss
• uncontrollable shaking of a part of the body
• loss of coordination
• uncontrollable movements of the eyes
• blurred or double vision
• ringing in the ears
• stuffed or runny nose
• sore throat
• hair loss
Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:
• unusual bruising or bleeding
• tiny purple spots on the skin
• fever
• blisters or rash
• itching
• hives
• confusion
• difficulty breathing or swallowing
• swollen glands
• weakness in the joints
• depression
• thinking about killing yourself or planning or trying to do so

Vimpat (Lacosamide)
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000506/
What side effects can this medication cause?
Lacosamide may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
• nausea
• vomiting
• diarrhea
• blurred or double vision
• uncontrollable eye movements
• dizziness
• headache
• drowsiness
• uncontrollable shaking of a part of the body
• problems with coordination, balance, or walking
• weakness
• itching
Some side effects can be serious. If you experience any of these symptoms, call your doctor immediately:
• fast or pounding heartbeat or pulse
• shortness of breath
• slow heartbeat
• fainting
• fever
• rash
• tiredness
• yellowing of the skin or eyes
• dark urine
Tell your doctor if any of these symptoms are severe or do not go away:
• dizziness
• drowsiness
• vision changes
• double vision
• fast, repeating eye movements that you cannot control
• diarrhea
• constipation
• heartburn
• stomach pain
• loss of appetite
• changes in the way food tastes
• dry mouth
• weight gain
• shaking of a part of the body that you cannot control
• difficulty coordinating movements
• falling down
• slowed movements or thoughts
• speech problems
• forgetfulness
• difficulty concentrating
• nervousness
• mood swings
• back pain
• muscle weakness or sudden tightness
• acne
• toothache
• earache
• hot flushes
• increased sweating
• cold symptoms
• nosebleed
• swelling, redness, irritation, burning, or itching of the vagina
• white vaginal discharge
Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:
• swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
• seizures that last longer or happen more often than in the past
• headache
• unusual thirst
• nausea
• vomiting
• weakness
• confusion
• decreased alertness
• rash
• bumps or blisters in the mouth, on skin, or genitals
• red or purple-colored blotches or dots on skin
• red, irritated eyes
• itching
• fever
• swollen glands in the neck or under the arms
• yellowing of the skin or eyes
• unusual bruising or bleeding
• bleeding from the rectum or blood in stools
• sore throat, cough, chills, and other signs of infection
• increased, decreased, or painful urination
• joint pain
• chest pain

IF THAT'S NOT BAD ENOUGH FOR YOU CHECK THIS OUT! We haven't done it yet but who wants to turn their kid into Frankenstein's monster?

http://www.webmd.com/epilepsy/vagus-ner ... r-epilepsy

In a nutshell this is something that is about the size of a smartphone (sewed into the upper left chest) which is hooked up to a lead wire that's wrapped around the Vagus nerve bundle on the left side of the neck. It sends periodic electric shocks to the brain & is supposed to stop or control seizures. It's not approved on people under 12 in the USA.

HERE ARE SOME PRO-MARIJUANA LINKS:

http://www.news.vcu.edu/news/Marijuana_ ... l_epilepsy

http://www.neurology.org/content/62/11/2095.abstract

Thanks for reading my post! I'll be snooping around for some less "controversial" herbs and minerals and posting what I find. I guess there must not be many OBODy's who've had to deal with seizures so perhaps that should be my job.....I may only be an apprentice Druid but I'd like to share what I know & help others if I can...

Feeling Ceridwen's pain...by the way does anyone know the route to Dinas Affaroan?

Bright Blessings!
/|\ K-dawg

[Claer]

Hi K-Dawg,
I am someone who had very severe epilepsy as a child and young teen. As a 2yr old I too developed meningitis. It left me with considerable scarring on my brain, particularly on the left side. Initially, I was left paralysed down my left side for the best part of a year, but slowly recovered feeling and movement. Whilst that sorted itself out, I continued until relatively recently to have a range of different seizure types. These ranged from complex partial seizures to tonic-clonic seizures. I had them so frequently that I used to have to wear a protective helmet to school - so that was hardly much fun and I did get some bullying.I also had until recently, seizures in my sleep.
Going through puberty, I was seizure free, which is unusal as hormonal disruptions usually make epilepsy worse or can be a trigger. I was withdrawn from all medication, only to have a major set of seizures at 18yrs old (status epilepticus) which required hospitalisation again.
I have now in my 30's being seizure free, so have been able to learn to drive etc.
In this journey I have heard much misinformation given by doctors about epilepsy. My mum was told all sorts of things, don't let her swim, be exposed to flashing lights, near water, do sports, don't let her get too hot or too cold - and other much more ridiculus stuff. It was very difficult for my parents only wanting to do what was best to know what to do as much advice conflicted. In the end they settled for working out what worked for me. Much of what is said (and the same goes for those long lists of side effects to drugs you posted) is just what is possible or could happen - it doesn't mean it will for all people. I have also had a silly number of prescription drugs in the past, some worked, some didn't, some had side effects, others beneficial. However, you do have to be careful with swapping prescription drugs for herbal remedies. Not a massive amount of research has been done, and some herbs have been found to have an adverse effect on some people with epilepsy. Rosemary and sage are two herbs often reported as not suitable for epileptics (there are many more with such contra-indications) due to them sometimes over stimulating the brain. However, I personally found I could use both with no problem, but others will have to take the risk and find out what works for them depending on their epilepsy. Herbs may be natural, but it does not make them safe to use. Just like with prescription drugs it is the chemicals in them that act as the active agent to cause effects on our bodies and minds. If you do wish to use herbal remedies, I would advise you to take your son to a fully trained herbalist for a consultation. Also make them fully aware of any medication he is on so all that information and knowledge on his condition can be factored for.
Rather than considering the use of marijuana, what about investigating the possible use of changes to his lifestyle and diet? Many have discovered they can better manage their epilepsy in this way. Please don't do this without informed advice though. Oh, and by research - I would be very careful of just using google. There is so much crap out there on the internet. Try contacting a respected epilepsy organisation for info instead.
Sorry, I do not know of US organisations as I am in the UK, but I am sure you would be able to find a decent one willing to assist you and shar info.
Wishing you and your son all the best.

[k-dawg]

Hi Claer!

Thanks for your story, and a big cyber-hug to you for fighting through all that mess. I'm glad to hear your doing better and I hope you are living a normal life now...your story is almost the same as my son's right now, except he got meningitis when he was 3 and has had tons of out-patient rehab so he gets around pretty good most days. His left arm is still giving him problems but it's s-l-o-w-l-y improving and he just turned 5 in October so he's got a lot of time on his side. He also wears a helmet which he (and dad & I) hates and he's figured out how to take it off! I just hate drugging him and seeing that he's still having seizures.

I totally agree about seeing a professional as far as herbs/minerals go, mostly I just want the seizures to stop and I want my boy to have a "normal" life (as in independent and able to do what he wants when he's an adult). I'm not quite willing to give him marijuana either, it was just recommended to me by a friend who uses it medically for his back problems, then I stumbled across some info about it on the web. So I guess I should say I'm open-minded, but I would like a neurologist or epileptologist blessing first. Of course, I've been surfing on the web long enough to know that it's like the wild west and there's plenty of bad info out there....We have tried the ketogenic diet on him and that worked pretty good until his triglycerides went through the roof. Now we are feeding him a more Atkins style diet (as in easy on the sugars and lots of veggies & protein).

Here's a link about the Ketogenic diet
http://www.epilepsy.com/epilepsy/treatm ... genic_Diet

Thanks for your reply to my post!
Bright Blessings!
/|\ K-dawg

[Aigeann]

I am always humbled by the journeys you share on this Board.

You all have my humblest thoughts, caring wishes and for those who wish it, Reiki healing.

[k-dawg]

Thanks Aigeann!

Reiki is something I haven't explored yet, however I do keep a selenite crystal in my son's pillow because I read that they were good for calming the brain and protecting against seizures. Are there any good books/websites you would recommend for learning more about Reiki healing? I would love for you to send some Reiki energy my son's way, his name is Ian.

Thanks for your kind thoughts, under suburban trees in Idaho...
Bright Blessings!
/|\ K-dawg

[k-dawg]

Well we're on drug #5 now & the Dr.'s want to implant the Vagus Nerve Stimulator if that doesn't work (eeek!!!) and who said Frankenstein was just science fiction! I need a Guiness or something stronger after that news....

Wish us luck!
/|\ K-dawg

[Astrid]

Well we're on drug #5 now & the Dr.'s want to implant the Vagus Nerve Stimulator if that doesn't work (eeek!!!) and who said Frankenstein was just science fiction! I need a Guiness or something stronger after that news....

Wish us luck!
/|\ K-dawg

I'll present you with somthing stronger then - a true sunshine epilepsy story!

I've followed this tread and I havnt really answered because its hard to really know what to say. But as the mother of friend whos dad died of cancer once told me: "It is better to say the wrong thing than to say nothing at all"

When i was 10 years old i was diagnosed with epilepsy, a year in advance of that i had very "harmeless" seizure of fluttering eye lashes that lasted for about 30 secs, under which you could not communicate with me - i was not unconcious more like paused.

So My first doctor was the local hospital expert on all things to do with the brain - he put me trough a lot tests and got me on some medicine. So it got better it seemed as long as i ate my pills i would be seizure free. But if i forgot my pills I all of the sudden started having these full on cramping seizures. Further more i started to have a lot of bad side effects of disturbed appetite and was often sick from other things.

My parents were worried but the doctor was not really helping afterall i didn't have seizures when i was on meds right?
My parents got me on a waiting list for the country's only Children's epilepsy hospital, after hearing about it through a co-worker. This of course only being possible through the good graces of free danish healthcare

after 6 months on the waiting list i got in and lived in the hospital for 3 weeks. My doctor was the leading researcher on children's epilepsy and even though i was so young i still remeber my first consultation with her. She took one look at what meds the other doctor had put me on removing all but one, Lamictal. She didn't even have me scale down on them as your normally do when you have to go of meds simply because they were so bad and "dangerous" for me. she then added another one, which i dont remember the name of anymore. And i stayed on those meds and in her care.

By the time i was 14 i was both seizure free and completly off all meds, and after 2 years of taking no meds and having no seizures i was declared "cured" at the age of 16.

I don't remember this myself but mom told me that after the first time when the doctor told us that i had epilepsy the doctor told us that there is permanent epilepsy and tempoary epilepsy. The first being of course permanent but the second type you can grow out of. After that meeting on the way home in the car, my mom consumed with worries of course, 10 year old Astrid turned to her and said: "You dont have to worry mom I'll grow out of it"

Now i dont know a thing about meningitis inflicted epilepsy - but i do know that the body is a powerfull healer and that faith can move mountains!

It can be hard to muster the faith of course when you're the mom standing in the midst of non-working drugs and awful seizures.
So if you'd like I'll strike you a deal K-dawg! I'll be your sons keeper of faith and every time i pray i'll keep him in my prayers and thank the gods and goddess for his recovery and everytime i give an offering ill give an offering as thanks for keeping him safe.
Meanwhile you'll do everything you can to give his body the best conditions for healing itself be it foods, fishoils, drugs, exercise whatever might help!

What do you say?

Big hugs from Astrid

[k-dawg]

Thanks for the kind words Astrid!!! You've got a deal, I'll take all the help I can get! I'm trying everything I can to help heal my son, Dr.'s, drugs, prayers, diet, therapy, school and of course tons of love....

Thanks for your support. I'm happy to hear a "good" epilepsy story and I hope you remain seizure free forever!!!!

K-dawg

[andromeda]

Lemon balm seems to be "the herb" for the vagus nerve, here there is a very interesting article http://www.altnature.com/library/nervous.htm

[siobhanmari]

I was told while in college that my doctor believed I was having partial complex seizures but that they were 'subclinical' and that I seemed to be able to anticipate them and get to safety every time before I had one and that they were not escalating into a full blown seizure. She believed that if she were to pursue testing and diagnosis, I would lose my ability to be employable. This was a very long time ago. Since that time, I suffered some very dangerous episodes while pregnant and eventually that testing was done and I was put on medication. After several different medications, we finally found one that offered me total control with minimal side effects.
But along the course of this journey, I also did some research and discovered that we can to some extent control two things that relate to epilepsy without having to resort to drugs. One is the exposure to our triggers and the other is our brain wave activity. These two discoveries are a vital part of my current control that has lasted now for over 26 years with a few isolated recent problem that developed in relation to the stress my body and mind were put under by my current battle with cancer and heart disease. So, this is not a cure, just something that helped me and I hope might help you.
The identification and elimination of triggers is pretty obvious and your doctor should be able to help. Don't forget food allergies as possible triggers. Mine did originally. Pretty much anything that puts your body into a stress state can trigger a seizure, including lack of sleep. The important thing is to find out what is impacting you that way. Each person is unique.
Meditation is not something most primary care doctors are trained to teach or see as beneficial to a health condition such as epilepsy. But this is how we can learn to control our brain waves. What you want to learn how to do is put your mind into the restful state that helps alieviate stress.
I did a google search for some sort of article on doing this if you need that sort of validation.
Different healing types of meditation help different people. The important thing is to find one that works for you. Once you learn how to place your mind and body are in a healthy relaxed state in which healing energies can flow through you, the seizures will be much easier to control, regardless of what else you are using to help control them.
Anyway, here is the link.
http://www.sciencedaily.com/releases/20 ... 210631.htm

[k-dawg]

Thanks siobhanmari, I will check that out. My hubby & I have noticed that stress & lack of sleep are BIG triggers for our son so we try to keep things as relaxed as possible at home and keep him on a regular bedtime and a strict diet. I also want to welcome you to OBOD and I hope you enjoy your journey into Druidry.

Bright blessings under suburban trees,

/|\ K-dawg

[merryb]

I am in awe of how you are coping with your son's illness - I cannot offer any advice but I can place your son and your family in my Reiki Crystal grid if that is Ok with you.

I f you would like to learn reiki for yourself and your son I can recomment Going to William Rands website http://www.reiki.org/ReikiClasses/Schedule.html ,and a wonderful Reiki Teacher Colleen Benelli.colleen@reikilifestyle.com
You can find out from William Rands website a list of teachers who are certified by the centre and you know they will have undertaken excellent training.

Hope this helps I am sure there will be a teacherpracticioner near to you.

With blessing and light to you
Merryb

[k-dawg]

Thanks for the compliment, I'm just trying my best to help my son, I will definitely check out those websites and consider e-mailing the Reiki teacher, even though my journey is taking much longer than planned I'm still working on becoming a full Druid eventually. I would love for my family & I to be placed in your Reiki grid. We'll take all the help we can get .

Thanks for your kind words and warm thoughts....
/|\ K

P.S.
I sent you a PM about the Reiki grid. Thanks again!

[k-dawg]

Update on Ian,
Well thanks to lots of prayers (and a heavy portion of patience...) we decided to get the Vagal Nerve Stimulator installed in our boy. It's been a big help in the severity/frequency of his seizures. I'm still not happy that we couldn't find a more natural solution for him but I guess technology is a necessary evil sometimes.

Time to go play under suburban trees, love the spring, everything is blooming & the trees are getting their lovely clothing back on....

Bright Blessings!
/|\ K

[blue pig]

Hi

I've just been reading through this thread; I may have missed some points but...

I'm an epilepsy sufferer, thankfully manifested as simple partial seizures, due to cavernoma (tiny lumps of fluid) in the brain.

My epilepsy only started around 4 years ago after a very stressfull period when I just wasn't taking care of myself.

I've learned a lot about the disease and it's treatment. All cases are different so it's hard to generalise, but finding and maintaining a natural rythm seems essential, neurological specialists and psychologists have proved this over a number of years.

Drugs do their job and I've heard good things about the nerve stimulator; if you're seeing results early then great!

You may well know that epilepsy and seizures are linked to shamanism. I use shamanic style drumming in meditation a few times a week and I'm sure it's helped to reduce my seizures (it started with a look/listen to binaural rythms).

My Ovate tutor also passed on some interesting and positive information re other sufferers and their achievements and since then I've seen it as a springboard into understanding and sharing the experience. My next step is to start a drumming workshop with an epilepsy support group... you may see calls for help around the website!

Wishing you and you son positive progress

bp

[Kishi]

Blue Pig, Interesting that you are experimenting with binaurals. Please keep us informed on any findings. I am sure there is a frequency that can overcome epilepsy just as there is one that can induce it, but I can't find any decent research. I think the key is to look at the role of serotonin and melatonin in the onset of an episode and then look at the EM frequencies that increase or reduce production, but I am not a scientist. 10Hz increases serotonin is all I could find. Good luck. The drumming is a great idea.

[blue pig]

Thanks for the information Kishi.

We are surrounded by so many soundwaves these days that we have no control over or awareness of until we stop to think about it...

The drumming at least is in a somewhat controlled environment; the rythm and tone is fascinating.

I've been recommended a book 'Drumming at the Edge of Magic' by former Grateful Dead drummer Mickey Hart.

I'll stay in touch as I learn more.

Blessings

bp

[k-dawg]

Howdy Y'all,

Well the Vagal Nerve Stimulator is improving the seizure situation but they aren't gone yet....I might just check out that book--plus my husband is a drummer so that might be a good meditation & bonding thing for both of them.

Bright Blessings under suburban trees,

/|\ K-dawg