Page 1 of 2 12 LastLast
Results 1 to 10 of 20

Thread: Refractory Seizures

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default Refractory Seizures

    Hi Folks,
    How have all of you been doing? I hope everything has been going well for everyone. I just found out from my Epileptologist that I now have "refractory epilepsy' meaning that no drug or surgery will control my sz. at this time.
    Most of you know I've had 2 surgeries to reduce my sz. and I had a DNA test to find out I'm drug resistant to all AED's out on the market as of now. A VNS or DBS (Deep Brain Stimulator) won't work either. The sz. have spread
    from the RTL to the frontal lobe and Left temporal lobe from so many yrs. of sz. I don't know what to do from here and the sz. just keep increasing. What's scares me is I found out that 50% of people that have refractory epilepsy
    end up passing away. One out of seventeen people die. I don't mean to be complaining and I'm sorry if I upset anyone please forgive me. I just needed to vent. Thank you for your time and May God Bless All of You!

    Sue

  2. #2
    Community Member
    Join Date
    Oct 2006
    Location
    Los Angeles
    Posts
    13

    Default

    Well Sue you gotta remember that a hundred percent of people with epilepsy are going to die.

    Sounds like you are more likely to get killed by a drunk driver than a seizure.

    I have had refractory seizures since I was born, 73 years now, and they haven't killed me yet. Also they have not spread, still have the same stupid seizures I had as a baby. Actually they have gotten better since I finished menopause.

    But it is pretty scary to have doctors give up on you.

    A doctor at the USC Medical school told me once that medicine is what is in medical books. If it is not in a book no doctor knows anything about it and there are more things that are not in medical books than there are that are in medical books. Doctors know almost nothing about bodies.

    You have been living a good life and doing a great deal of good for other people. This is not going to change. You are still going to be you, just a you with more seizures. It is ok to have seizures. Unpleasant, but ok.

    Remember that there are a great many people here who love you and are praying for you.
    hugs and chocolate to everyone

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    HI Annie,
    I'm so sorry to hear that you have had to deal with the same type of sz. that I am having. After I went through menopause my sz. increased but I was told that there was a possibility that would happen.
    You have been a wonderful person to me and many others here and I greatly appreciate your support and understanding just like everyone else here.
    Hopefully a AED will come out that will help the both of us and others who have this type of sz.
    Wishing you only the best and May God Bless You!
    Sue

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Atlanta, Georgia
    Posts
    139

    Default

    I think Annie is generally right, although her seizures, like mine, are different. My seizures became worse after menopause. Annie has chosen not to take medications . Porkette, you and I have taken them. Actually, medications have so many undesirable side effects, many sneaky and permanent, that I sometimes wonder if.....

    Linnie

  5. #5
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Hi Linnie,
    I've thought about going off all my AED's or at least a few of them but when I was in the hospital for a veeg where they reduced my AED's the sz. got really bad so I know that if I go off the AED's or even cut back on them anymore I'm gone. Even my
    Epi has told me this. I agree with you I don't like the side effects of them. One of my friends has told me about an herb called Lobelia that stops his sz. so I might look into that and give it a try. Here's wishing you well and May God Bless You!

    Sue

  6. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NC
    Posts
    135

    Default

    Sue, It is my understanding that intractable and refractory mean the same thing in that no medicine will stop them after a trial. To me, it is the reason we are possible surgery candidates or other options are recommended in the first place. Sue, to me you have always had refractory epilepsy since no med ever stopped your seizures. I am not sure why they are now adding now that since it seems to have been the case. You know what I'd like to see you try, but you didn't want to do that. I know how scary not being able to stop them can be as I was in the same position which made me look elsewhere and seek what I could to get them stopped if at all possible and did it alone too. I found those with new eyes, treatment success history, treatment modalities, philosophies, training, and experience. I am not sure if it is loyalty that keeps you at the same place with the same docs and they are the same team or "household/family", but your loyalty should be to yourself and yourself first and only. Next is family. Docs are not worthy nor deserving of your loyalty as they are there for your benefit and not the other way around. I wish so much that you could find a treatment team and modality that would work for you, but it sometimes has to be sought. You do have people who care about you very close by, so it would be harder for untoward things to happen to you which makes you blessed in that respect. I wish I was so blessed as I am very alone. Tattoo

  7. #7
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Hi Tattoo,
    Thank you for such kind and supporting words. You are a dear friend to me and you have always been so please don't feel like you are alone. I want you to know that I'm here for you anytime day or night. The only thing that I haven't tried
    is the medical marijuana that my new Epi wanted to me try but the former Epi that is retired told me it would do me no good and could cause more problems for me especially since I am drug resistant. I was also told by this Epi that it could
    lead to more brain damage and I didn't want to take that chance.
    I'm not going to give up I'm going to look around in other countries and see if they have any new treatments for epilepsy and hopefully I will be able to try them. You are a wonderful friend with a heart of gold. I wish you only the best
    and May God Bless You!

    Sue

  8. #8
    Distinguished Community Member howdydave's Avatar
    Join Date
    Oct 2006
    Location
    Rochester, New York, USA
    Posts
    167

    Default

    Howdy Sue!

    I used to think quite a bit about SUDEP (Sudden Unexplained Death in Epilepsy.)
    I stopped worrying about it due to the fact that everybody dies.

    The issue isn't how you die, but how you live!

    Although seizures may not be totally eliminated for many of us, the can be reduced with medication!

    I always tell people that since I will never get a drivers license, I will always be assured of getting the back seat when I go out on a double date!
    Last edited by howdydave; 01-29-2013 at 05:10 AM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  9. #9
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Howdy Dave,
    I understand where you are coming from but I guess what bothers me the most is I had the surgery and was doing well for a few yrs. and then things went down hill for me and the sz. increased.
    I will never understand why but I know that ithas happened for a reason and hopefully I will understand within time.
    Thanks for your kind words and May God Bless You!
    Sue

  10. #10
    Distinguished Community Member howdydave's Avatar
    Join Date
    Oct 2006
    Location
    Rochester, New York, USA
    Posts
    167

    Default

    Hopes dashed against a stone are a hard thing to deal with...

    Eventually, we must all get up, lick our wounds and continue on in our own way.
    Last edited by howdydave; 01-30-2013 at 07:19 AM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

Page 1 of 2 12 LastLast

Similar Threads

  1. Abdominal seizures
    By Donna Thomson in forum Epilepsy
    Replies: 3
    Last Post: 10-09-2012, 01:53 AM
  2. Seizures more Frequent & More Severe
    By Porkette in forum Epilepsy
    Replies: 5
    Last Post: 05-03-2012, 02:33 AM
  3. Ipad and Photosensitive seizures
    By loli in forum Epilepsy
    Replies: 4
    Last Post: 02-29-2012, 03:20 PM
  4. Seasonal Seizures Starting
    By Porkette in forum Epilepsy
    Replies: 2
    Last Post: 12-01-2011, 04:43 PM
  5. Having seizures
    By lor in forum Epilepsy
    Replies: 5
    Last Post: 11-04-2011, 07:06 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.