Hi!

[lindy]

Well, hello! I was invited to come here from Braintalk by Bernard, after a side trip to epilepsycured. I'm 52 - married for 30 years (31 in July) - two grown children (27 and 24). I started having complex partials when I was 11 - nocturnal grand mals at 21 - diagnosed after a status episode when I was 25 -can't remember exactly when what had been just nocturnal tonic-clonic trouble decided that it could show up whenever it felt like. I've been on Dilantin, phenobarbital (and the combination of the two), Stelazine, Mysoline and Depakote. None of them gave me any control over an ever worsening situation. When I was 47, my neurologist said that the seizures were intractable and wanted me to have surgery. I said no, after alot of research, and, against medical advice, weaned myself off of the drugs. At the same time, I started taking vitamins and supplements and have acheived remarable control! My last seizure of any sort was in February 2004 and I was one month short of the second anniversary since a seizure then. It's been the best thing that ever happened to me!

[Bernard]

Hi Lindy, welcome to the forums!

That is an amazing story! Did you do anything else besides just vitamins and supplements (diet change, sleep regimen, stress reduction techniques [yoga, meditation, tai chi, etc.], etc.)?

Which supplements do you think were the key to your seizure control and did you have a doctor taking blood/hair analysis tests to see what levels you had/have in your body?

[lindy]

I did this on my own with one very angry neurologist and a skeptical internist who thought that I had lost my mind. I didn't think that I had anything to lose. The grand mals were more and more frequent and increasing in severity. The postictal spells were longer and harder to deal with physically and emotionally. It was obvious to me that Depakote wasn't working, although my neurologist thought that I should keep taking it "just in case" it was doing more than I knew. HA! I have known for years that stress and being overly tired were my two biggest triggers and have tried to get enough sleep (which is easier now that the kids are grown!). I have also been a big believer in massage therapy (shiatsu and accupressure). Worked with a wonderful therapist for more than six years and stopped going when she moved to Utah. Realised at the beginning of 2004 that I really needed to get back into body work. Had been through an incredible amount of stress for two years (the deaths of my two horses and the death of a dear friend whose bedside I sat at for the last eight months of her life - what a learning experience!) and knew that I was holding it in my body. When my friend died, I had a massive panic/anxiety attack which my internist diagnosed as post traumatic stress disorder. Had my last seizure shortly afterwards and wasn't terribly surprised. While my internist is still skeptical of the vitamin routine, when my blood work results come back every year, she tells me that she may not understand but to keep up the good work!

[Bernard]

Well, Stacy is doing much of what you describe (at least in a general sense).

She is taking vitamins/supplements as recommended by Dr. Manso (she can list what all she is currently taking). She gets blood & hair analysis done to measure what her body's needs are.

She has been getting Chinese qigong acupressure treatments once a week, but we are likely going to stop that for a while (out of necessity). We may continue with it in the near future when circumstances change again.

[Andrew]

Hi Lindy,

My name is Andrew I have been taking B vitamins, only, for nearly 37 years. I had my first seizure when I was two weeks old. I was first prescribed Pyridoxine HCL (vitamin B6) when I was five months old (back at the beginning of 1971). I do not use any anti-epileptic drugs. anti-epileptic drugs have never had any positive effects on my seizures. At 19 years of age I discovered a multi B Complex tablet. this stopped an aura that I was experiencing almost every morning. I have been free of all my major seizures (tonic clonic seizures, complex partial seizures, simple partial seizures,... etc.) for appox. 17 years and I haven't needed to see a neurologist for over 12 years.

Andrew

[brain]

Lindy!

Nice seeing you over here too!

Welcome to CWE!

[Bernard]

Lindy was one of the forums first members, but she hasn't been around here in a while (this thread is approaching 3 years of age). I think she just hangs out at Braintalk these days.

[brain]

Lindy was one of the forums first members, but she hasn't been around here in a while (this thread is approaching 3 years of age). I think she just hangs out at Braintalk these days.

Do you think Lindy could possibility post 140
posts in one day?



PS: I should have said Welcome BACK!

[RobinN]

DARN! I was just going to tell her she was my new mentor.
Grab her again Bernard.

[Andrew]

Hi Lindy,

Which vitamin works best for you when it comes to controlling your seizures?

Andrew

[RobinN]

Andrew... Old thread, check the date.