Epilepsy Advice

10/15/2011

Greetings Todd,
I feel for you in that I don't trust doctors in the least and you should of been treated with more respect than that. If doctors do not know the side-effects, how do the police expect you to? Makes no sense in my opinion.
Alex

22 Comments

Regina

11/5/2011 04:21:41 am

Hello, my husband has had seizures for 11 years now. He get aggavated because know one really knows what is causing them. I have read up on Gulf War Illness and I believe that is where they came from. He is a veteran of Dessert Storm and Northern Irac. Clinton and Bush era. Our worst thing to deal with is people thinking he is lying about his seizures and saying why can't he work? It irritates him and I to no end that people are so uneducated about this. His neurologist is talking about VNS therapy. If you have any information or feed back on this please let me know. We are scared it won't work or at least slow them down. I have read up on it, but am still sceptacal. We reside in Butler County Kentucky.

TJM

2/6/2013 05:22:36 pm

Regina,
Military, wars cause head trauma and scar tissue. Scar tissue causes seizures. 20 years later I had it removed and have been seizure free and med free for 12 years. You need to find the right doctor and be willing to take the chance.

Lori Santos

9/4/2013 08:02:30 pm

Regina,

I still am not sure exactly what bump on the head could have caused my seizures. I was seizuring since childhood with auras. No one knew and I did not know. I thought it was Deja Vu. That simply relates to how old I am and the years I in which I grew up. At my age of 34, my daughter found me convulsing in bed one morning when entering to wake me, she did the appropriate thing, I was dx'd. Ten years later at over 50 seizures daily, I had my work-up for surgery, eleven years ago. Having worked 25 years in health care before that point, I was a good candidate for surgery, I rehabbed myself. I started college 4 months after surgery, 8 yrs later I graduated with 3 degrees. That was three years ago. I am attempting to enterr grad school for a soc/psych masters track at the age of 56 years. I still seizure. Now having status complex partial siezures. I am happy, they are not as life threatening as tonic clonic status seizures, yet I expect I will need another surgery or VNS in the future if I become status tonic clonic again. My brain loves and runs with neuronal network tracking. At least that is what I call it. I have no other term for it. Before the surgery of the schlerotic rt temporal resection tissue, scarring was not seen on MRI, PET, or fMRI. The tissue that was removed did not have a very grainy texture to it, but has clearly reduced the number of seizures and original scope in manifestation. VNS therapy has helped many in reducing the generalizing aspect of tonic clonic seizures. If that were my status problem, I would not hesitate to have that invasive therapy over another brain surgery for removal of tissue. Leads need replacement after a certain period of time. Prognosis on brain surgery, more than one is typically needed to remove full amount of seizures the patient is experiencing. This information is what I have been able to locate per various Google sites in the past. I do not have a negative bias toward the medical community however, I ask plenty of questions of my providers of care and be fully comfortable with their experience and knowledge before persuing any therapeutic avenues. In example, when meeting my neurosurgeon for the first time. I asked him if he drinks or takes any drugs. I wanted to know his personal habits. If someone was cutting into my brain, I wanted a steady hand. He was serious, answered the question seriously. I relaxed, my neighbor that drove me to the appointment was embarrased. The surgeon chuckled briefly at the shock on my neighbor's red face, assured her it was alright to ask him that very pertinent question. Turned to me and congratulated me on asking a question no other potential patient had ever asked. I explained why I was asking, why it was pertinent and asked with all seriousness. He already knew the answer. Health care providers are truly invested in patients, when the patients are invested in their own health care! If you will work with your health care provider, they will work with you. Many providers seek to educate their patients to care for themselves first and foremost, especially those providers that work within the specialties. I was invested in my surgery, my recovery. I needed and wanted the best neurosurgeon, credentials checked, steady hands, clear eyes, no party animal on the weekends. Someone that did take his work home and his ethical committments too, after hours in the operatory! or that, I was glad to have insurance and he could charge what he wanted. Because, my brain was worth it and so was my life. Eleven years and three college degrees later without a full brain; He and the anesthesiologist the epileptoligist and all staff were worth every penny they charged, because I am worth it!

Alexander Lodi link

11/5/2011 05:18:06 am

Hi Regina,
Like I stated in the Email to you, do your best to try natural remedies first that can be effective for your husband. Vitamins and minerals, biofeedback, herbs, Reiki, meditation and so forth. You will find some others listed in my blog as well. I firmly believe in a natural diet. Stay away from all food dyes, preservatives, soy, corn, wheat and ALL forms of dairy. For more information and details on eating properly go to www.dogtorj.com

Nadhia Taveras de Arias

11/14/2011 01:18:53 am

Hi Alex:

Thank you for your email and I really agree with you all the way. The difference between you and me is that yours is really complicated, and mine now has settle at least for the moment and I hope it stays like that. It is so awesome that you have overcome it somehow. My father was very worry before he died that I would not keep my promise to take care of myself. But it has been 5 years after I made my promise to him before he died and here I am stronger than ever, just came out of surgery from a broken jaw from an episode I had 9 years ago. When I tell people my condition they don't really believe me because is something that we carry inside and they think we need to be treated like disable people. I would not put myself on disability because of this I refuse to.

Alexander Lodi link

11/14/2011 02:05:23 am

Hi Nadhia,
I admire your courage. It is unbelievably powerful when a relative passes and we are driven to show them how we can persevere through our trials and tribulations from our strong Faith.
You are correct. people bury their heads in the sand through fear and ignorance because they are not educated on the subject. The most important thing for you and I to remember is that we can educate people and to never let words of ignorance from others bother us.
God Love you, Nadhia and I hope to hear from you soon.
Alexander :)

Todd Drouse

12/2/2011 10:12:54 am

Alex, your site is really something. I am 41 I started having seizures when I was 26 in pre-med school, I went to school off and on to finish, but I couldn't do it. I was also in a auto accident in 2003 b/c I blacked out, in 2004 they put me in jail for 7 mos until I plead guilty to felonious driving for not knowing the side effects of tegretol.The Drs @ the time didn't know it either.... Todd

Matthew

4/4/2013 08:23:33 am

Yes, that's the reason why I ONLY use public transportation; being in a left hand turn lane is NOT the place to be if an 'Episode' were to take place!

Alexander Lodi

12/2/2011 10:39:09 am

carolee

1/20/2012 01:37:20 am

thank you for sharing, it helps so much when I know Im not alone in how recovery can affect us, I had scar tissue and a tumer removed on the left side 6 months ago, feeling good but mentally trying hard to get back to normal.. going back to how it was or how they say I was... It help soooooo much to know that I am not the only one that there are others that understands.. Thanks for sharing your past/present~

Alexander Lodi link

1/20/2012 01:44:32 am

Hi Carolee,
You are quite welcome. I am blessed to be able to reach out to others like yourself. I admire your courage, bravery and spirit. You are a huge example for us all. You have the gift to assist others as well.
God Bless,
Alexander Lodi

Paula

4/2/2012 03:53:50 pm

Thank you Alex for being so open and sharing your story. We all have one but it has never been easy for me to tell mine. I have had seizures for about 30 years and always was "my secret". I forbid my children and kids to tell. My family....mom, dad and siblings knew and very close friends but it was a hush hush thing. A few months ago I had a full blown seizure at work. It was no longer a secret in a dept store full of employees and customers. After being on medical leave and advised by more than one doctor to not drive I am house bound. I googled Epilepsy Foundation and through a series of clicks I did get the email from you and have been greatly encouraged by your testimony. Thank you.

torrence

5/19/2012 02:13:56 pm

do u know how do i get information or who do i talk to get low income apartments for people with disabilities? i live in Illinois

Alexander Lodi

5/22/2012 10:08:36 am

Hi Torrence,
I do not have any knowledge on low income housing. I do apologize for not being able to help assist you. When you find out how to go about acquiring it, it would be great if you would post the information on here. Thanks!

Ronnie link

7/15/2012 09:49:29 pm

Many thanks for data

Matthew

4/4/2013 08:36:31 am

I found a great solution for controlling my seizures! In my childhood days I had daily seizures. Now, through the help of Yoga, I have only had 2 in the past year! Whenever I feel an 'Aura' approach me, through the relaxation and deep breathing exercises, the seizures would pass right over me! (Yoga also helps with strength, balance, flexibility, and even prevent arthritis!)

Matthew

4/4/2013 08:38:59 am

In my childhood days I had daily seizures. Now, through the help of Yoga, I have only had 2 in the past year! Whenever I feel an 'Aura' approach me, through the relaxation and deep breathing exercises, the seizures would pass right over me! (Yoga also helps with strength, balance, flexibility, and even prevent arthritis!)

Alexander Lodi link

4/5/2013 01:24:09 am

Greetings Matthew,
I couldn't agree more about Yoga and all forms of naturopathic medicine and practices. Congratulations on your success!

Marion Richardson

6/4/2015 06:16:39 pm

I love your site. I sat down tonight to read everything from beginning to end. I have been struggling with seizures for over 5 years but the ER would send me home and say nothing was wrong, but finally a local walk in clinic sent me to a great neurologist and we are working our way to find out what is happening with my brain. Thank you for all the information. I felt so alone, and kind of desperate.

Alexander Lodi link

6/5/2015 08:38:27 am

Hi Marion!
Thanks so much for the compliments and reading my blog. Ask me anything you wish. I'll do anything I can to help.
You did the right thing. NEVER settle for any one doctor/neurologists opinion. If you are not satisfied, find someone else. Kudos to you.
Stay Blessed,
Alexander :)

Joy link

1/26/2016 12:44:07 pm

Hi, Alexander. I would just like to say that I agree with the holistic approach, and have been seeing a naturopathic dr. for about 4 or 5 years and he has been very helpful. Thank you for your blog and your commitment to helping others.

Alexander link

1/26/2016 01:52:53 pm

Hi Joy. Thanks for your support and networking with me. I just sent you a comment on your blog as well.
Alexander

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