Hi Zoe,
I live about half-way between Denver and Colorado Springs. The first
neurologist I saw, in Denver, was more than an hour late getting to his office
(his staff didn't know where he was, either), didn't have any of the tests that
had been faxed to him, and spent less than five minutes with me, after I had
waited for three months to see him.
I decided I needed someone who was a little more thoughtful about his/her
patients, and waited another three months to get into a notable clinic (I won't
mention the name right now) to see another respected neurologist in Denver.
After nine months, this neurologist still had never looked at my MRI, continued
to give me drugs and then scheduled appointments for three months later. Twice
her office manger sent me a letter to tell me that they had cancelled my
appointment and rescheduled for another time -- weeks later. It was during this
time that I was having severe trouble with the Topamax, and another doctor in
her office actually yelled at me and told me that there was no way I could get
off of Topamax -- I could have Grand Mal seizures, Status Epilepticus or death
as a result. My next appointment with my doctor didn't go much better, and I
felt she was advocating for the drugs, rather than for me! At this point,
needless to say, I became extremely discouraged.
Now, I am scheduling with neurologists for a consultation, to see if I can find
one who will actually attempt to find out WHY I am having seizures!
Currently, I am taking 1500 mg of Taurine twice a day. My nutritionist and I
have been discussing having an amino acid panel run, and creating a custom amino
acid blend, since the amino acids seem to play a part in my symptoms.
In addition, I am using Mag-Glycinate from Metagenics, which has been a
wonderful way for me to get my magnesium and my system seems to like it really
well. N-Dimethylglycine seemed to help quite a bit when I first began taking
it, but my system seems to have developed a tolerance for it, so it isn't as
helpful as it once was. Acetyl-L-Carnitine has been a benefit, and I take 500
mg of it daily. In addition, I take manganese, calcium, gamma-linolic acid,
Vitamin E, Black Cohosh, and am on a prescription sub-lingual B complex, along
with prescribed B-12 shots weekly, which seem to affect my seizure activity
positively. Progesterone is also helpful, and I take it daily. It's possible
that mal-absorption plays a part in my health, so sometimes I use glutamine
powder to heal the digestive tract.
I probably need to go back to keeping a log of seizure activity. I quit when my
neurologist took such a disinterested approach to my care. She glanced at the
log I gave her, and then suggested adding more medicine. I wondered why she
didn't attempt to figure out why I was having so many seizures.
I only had a few minutes to spend on your web page, and hope to have more time
in the coming days. Thank you for sharing your insights. I'll look for the
book, The Healing Nutrients Within, and appreciate that suggestion!
Don't worry about asking questions. I was hoping to meet people who would
engage in an honest dialogue about their struggles with epilepsy on this
website. I'm glad you've joined and am glad to see that others are sharing,
too!
Carrol

zoe88025 <Zll51@...> wrote: Hi Carol,
Where in Colorado are you? I lived in Denver for several years.
It's good you have a nutritionist working with you and that your
family is behind you. Did anyone ever find a certain cause for your
seizures, i.e. hormonal, brain damage, or something else? Have you
looked into using taurine? It is quite well researched. If you don't
already have it, you may want to get a copy of "The Healing Nutrients
Within," by Braverman, Pfeiffer, Blum, and Smayda. It's about amino
acids and has a whole section on seizures and taurine. I have some
information on it on my web page also.

Have you explored other ways of controlling your seizures besides
diet? Do you keep a seizure log? Are you familiar with neurofeedback
training?
I'm probably asking more questions than you care to answer. But my
seizures were intractable and brain surgery didn't cure them. My
seizures were attributed to severe brain damage from multiple
strokes, spinal meningitis and brain surgery.
Now that I'm seizure free for going on four years I see that this
must be possible for others also. If you can, please read the
interview with Dr. Andrews on my web page-it may give you more hope
and inspiration. There's much more to seizures than
misfiring of neurons. Thanks for the welcome and I wish you the best.
Please keep posting your progress.
Zoe



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