Update on Complementary Methods of Control....

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I thought I would give you a quick update on the methods that I've been using over the past 7 months. Let me assure you that the road to get here was not an easy one as I have found that even "natural, integrative" physicians can be as pushy with their meds. Although they are far more understanding with conditions and whole body, the system is meant to sell a product (vitamins).

With that said......
I've been working with neurofeedback for 7 months now and love it. At first, I was having trouble understanding what it was doing as I didn't feel any different. Yet, I can now positively say that it WORKS!!! Yes, I know that many have relayed this sentiment, but I'm a bit stubborn and need to see the workings.
For me, it has meant greater memory. My husband is even amazed at how much I'm remembering. Even things that I've forgotten are coming up. The locked closet is now opening and I'm peering inside to a past that I couldn't remember.
Also, my brain is beginning to understand how to deal with anxiety/stress without passing out. Yes, I'm still very careful as I KNOW I can hit the floor at any moment. But a panicky feeling does not arise anytime I feel loopy. My brain is slowly learning.

Now, food has taken the longest to work out. From GARD to raw food I've been forced to take a good strong look at my diet and what is working and not working. I've spoke with doctors and nutritionists, etc. Most had "their way" of dealing with issues. Yet, many times that I tried a course of action, I didn't feel good.
One book that has been on my shelf---but not in my hands---is the Hippocrates Diet Program. It seemed too extreme when I first received it. I finally read it and was inspired. Seizures could be reactive? No one ever told me any of this. After taking more than 20 vitamins a day, I knew I needed some sound advice on how to help myself get away from ALL synthetic pills (meds and vitamins).
I set up an appointment with the director and he was a very generous man. He received a 53 page document with my medical history and read and assessed every word:woot:---even consulted with others (just for a phone consultation). When we spoke it was with a plan of action(including titration down in the future) and a follow up in 60 days.
It was both empowering and inspiring to sit and listen to how and why the body works. How emotions are tied to our state of health and what we can do to heal within.

My reasons for saying this is not to gloat, but to inspire. I've been on meds since I was 12 years old. No one ever told me how or why I was having seizures just what---oh yeah, and here are some pills. The vicious cycle needed to stop. Unfortunately, it took almost 30 years for me to figure this out. My hope is that you will look into these wonderful therapies and try them out for yourself. They work and will make your life better. The condition may always be there, but the fear and anxiety will leave making you a much stronger, healthier person.
 
Awesome!

Would you mind answering the questions posed here? That will help folks who aren't aware of your history to have context for your successes.
 
That's so great! This is one of my favorite things about this site -- to get to hear about the payoff. It's wonderful that the neurofeedback and diet are working well for you. And it's a bonus that you've found a great doctor too.

Best,
Nakamova
 
1. What types of seizures (and how frequent) were you experiencing before starting the alternative treatment?

I was experiencing tonic clonic every month after the doctor made a medical mistake. Before that, once every 18 months.

2. What anti-epileptic drugs (medications) had you tried prior to the alternative treatment?

Phenobarbitol was the first---didn't work. Have been on Tegretol/Tegretol XR since I was 15. Due to the fact that doctors couldn't find an answer to the issues I was having, Lamictal was added (Keppra was tried---I won't go there--UGH!)

3. How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife)

I've been working on the right pattern for me since January, 2009 (7 months)

4. If the treatment requires active participation, how diligent were you in applying it?

EXTREMELY DILIGENT. My thought process was that if I was truly serious about reducing/getting off meds, I had to take the new therapies just as seriously as taking pills.

5. What changes (improvements or otherwise) occured with your seizure control with the alternative treatment?

Anxiety has gone. As with everyone, fleeting thoughts come about, but they are controlled. Since anxiety is a huge part of seizures (I can bring on a seizure with anxiety) it was first on my list to control.

Memory has started to return. Thank God! Most importantly, I have a sense of purpose and empowerment. No more am I walking in to a neurologist saying "OK, I'll take the meds."

6. What (if any) adverse effects/events did you experience with the alternative treatment?

DETOX---It's not easy to get through. Whenever you either reduce/change meds your body needs to detox. This also happens when you change your diet. It's a long process. For someone like me, who is very sensitive and has been on medicine for a long time, detox has been rather harsh (messing with sleep, nauseous, etc.). Yet, the benefits far outweigh the negatives. If you can come through the difficult parts, the detox slowly leaves (I'm still in detox) and you regain a different feeling in your body.

7. How much did it cost you to implement the alternative treatment?

Well, my insurance covered most of the neurofeedback and integrative MD appointments. Yet, a lot of money was spent on food, vitamins, etc (and still is). Working with Hippocrates and another nurtritionist cost well over $500 just to talk. So, there is some $$ necessary to get good information from knowledgable people.

Yet, there are many books on raw and living food that outline exactly how to implement a healing program. Those have been my guides. I needed the doctors for supplements, etc.
 
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Done Bernard! Great questions!

Nakamova---I must say that finding a good doctor---who actually understands seizures (I mean beyond the physical)---was key to beginning the process. This was no easy find as many integrative MDs aren't familiar with the chemistry of the seizure and how it affects the body.
 
To luvmytwins

hi! I see that you have not posted in awhile, but you are from Ct, and it seems you have found quite a lot of success!!! if you do happen to get this message please let me know who your drs are, i would love to give them a try! It sounds as if you have found success, and perhaps at least it would be a start for me, as I do not seem to be having any luck with docotrs i am seeing currently.

Thank you.

Suzy
 
Hi Suzy---

I go to the Epilepsy Center at NYU. My doctor is Dr. Orrin Devinsky. Believe it or not, he actually calls you back when you ask for him!! :clap: Further, his physician's assistant---Kim Parker is wonderful. She's who you'll speak to most of the time. They truly believe in two things: Success is based on the LACK of seizures (this is truly a new thing as most want to control---they want to end) no matter how that happens (traditional or alternative) and quality of life. They want us active and happy not over drugged.

Dr. Devinsky has been in Time and a few other magazines regarding his approach. Google him and you will see. No matter what, he does make time, he doesn't rush you out and there is listening.

Good Luck---
LMT
 
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