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  1. Replies
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    Hi Folks, Well it's been a long time...

    Hi Folks,

    Well it's been a long time since I posted a message but I wanted to give you an update and that's of Nov. 2019 I'm at the second lowest amount of seizures thanks to the apple...
  2. Replies
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    6,330

    Hi Gang, I haven't been on here in awhile...

    Hi Gang,

    I haven't been on here in awhile because I haven't seen any activity. I sure miss all of you but things are going pretty good. I found taking 2 Tablespoons of apple cider
    vinegar...
  3. Hi Ted, I have a cousin out in San Fran. and...

    Hi Ted,

    I have a cousin out in San Fran. and it's amazing how the techtonic plates are causing all these earthquakes. I also have a friend in Alaska whose having the
    same problems. I wish you...
  4. Hi Ted, Thanks for sharing this article I...

    Hi Ted,

    Thanks for sharing this article I found it very interesting and if the professor wants to I'm going to share it with the students when I speak to them about epilepsy and my surgery I...
  5. Thread: Epilepsy..

    by Porkette
    Replies
    3
    Views
    1,464

    Hi Amanda, Welcome to the forum! I've had...

    Hi Amanda,

    Welcome to the forum! I've had absence and complex partial seizures for 47 yrs. and after trying over 10 different seizure meds my Epileptologist which is a Dr. who specializes in...
  6. Replies
    11
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    4,318

    Hi BettyJohn, I never realized that apple...

    Hi BettyJohn,

    I never realized that apple cider vinegar with mother in it would reduce my sz. I started using it to lose weight and to my surprise I've only had 48 seizures since Feb. 2018 and...
  7. Replies
    3
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    1,583

    Hi Matt, It's great to hear from you again....

    Hi Matt,

    It's great to hear from you again. I also had temporal lobe surgery and they removed my right hippocampus causing short term memory loss but what made it better
    was doing a lot of math...
  8. Replies
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    4,318

    Hi Gene, Thank you for your kind words. I'm...

    Hi Gene,

    Thank you for your kind words. I'm glad that the Keppra and Topamax are working well for you both of these meds increased my seizures so I didn't stay on them long plus the keppra gave...
  9. Replies
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    4,318

    Hi Folks, I hope all of you are doing...

    Hi Folks,

    I hope all of you are doing well. I just wanted to update you on how the vinegar has been helping me. So far this yr. I've only had 33 seizures and last yr. (2017) I had 55 seizures...
  10. Replies
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    1,376

    Hi funnylegs, There have been times in my...

    Hi funnylegs,
    There have been times in my past when I would see things that weren't there and then I would go into a seizure. My neuro told me it was a simple partial (aura) seizure that led...
  11. Replies
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    4,318

    Hi Firehorse, It's great to hear from you...

    Hi Firehorse,

    It's great to hear from you and I want to thank you for sharing your info. regarding this book I will have to check it out. Years ago back in the 1970's my neuro I had then told...
  12. Replies
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    4,318

    Hi ((( Rose))) , Take my word I was just...

    Hi ((( Rose))) ,

    Take my word I was just as amazed when my seizures were reduced and the Dr. is still trying to figure this out.
    Right now I'm taking vimpat, mysoline, Diamox, and CBD...
  13. Replies
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    4,318

    Vinegar Reduced My Seizures

    Hi Folks,

    It's been a long time since I've posted here and I wish all of you well. I wanted to let you know I started using apple cider vinegar that has mother in it this past Feb. to lose...
  14. Replies
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    6,330

    Hi Lor, It's been a long time? How are you...

    Hi Lor,

    It's been a long time? How are you doing? I remember you along with HowdyDave, Earth Mother and a few more. It's great to see us getting back together again.
    I haven't been on here...
  15. Replies
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    3,946

    Hi Firehorse, Here's wishing you the best...

    Hi Firehorse,

    Here's wishing you the best of luck! Just like you I went off my meds and had testing done before surgery. Good luck with the RNS I've heard a lot of positive reports about it....
  16. Thread: Vns #3

    by Porkette
    Replies
    5
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    3,542

    Howdy Dave, I'm happy to hear that your...

    Howdy Dave,
    I'm happy to hear that your surgery went well. The glue does itch like crazy but give it time and it will stop itching. I'm now looking into
    gamma knife surgery since the damage on...
  17. Replies
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    11,545

    Hi Shimada, Thanks for dropping me a line,...

    Hi Shimada,

    Thanks for dropping me a line, yes I did find out what was causing my seizures and headaches, come to find out I'm cell phone sensitive which means the frequency that cell phones...
  18. Thread: Vns #3

    by Porkette
    Replies
    5
    Views
    3,542

    Howdy Dave, That's great news to hear! I...

    Howdy Dave,

    That's great news to hear! I wish you the best of luck with the new VNS. I was looking into that but I have more than 2 areas in my brain that
    are triggering seizures so my...
  19. Replies
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    4,780

    Hi Rainbow1, Rose gave you some great...

    Hi Rainbow1,

    Rose gave you some great information. Each time I've had a MRI I would know in about 1 week at the latest what's going on and what the MRI showed. As Rose mentioned give the GP a...
  20. Hi Goves, Thank you for your kind words! ...

    Hi Goves,

    Thank you for your kind words! I want to donate my organs because I saw a young man say my Uncle life when he had to have a heart transplant. I figured why not save someone
    else...
  21. Replies
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    5,096

    Hi WhiskeyDune, Vimpat is a prescription...

    Hi WhiskeyDune,

    Vimpat is a prescription drug that he will have to get from his Dr. another thing I take that works really good is vitamin B12 1000 mcg. once a day the B12 helps calm the nerves...
  22. Replies
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    5,096

    Hi WhiskeyDune, Welcome to the forum! I've...

    Hi WhiskeyDune,

    Welcome to the forum! I've had complex partial and absence seizure for over 40 yrs. and just like your boyfriend I often get an aura seizure before the complex partial seizure....
  23. Replies
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    Hi funnylegs, there is a possibility that...

    Hi funnylegs,

    there is a possibility that this could have been a seizure and the best thing your friend should do is call the Dr. and let them know what's going on. The family Dr. may in turn...
  24. Replies
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    9,164

    Hi funnylegs, Often when I have a partial...

    Hi funnylegs,
    Often when I have a partial seizure I will smell odd odours like deviled eggs or something burnt, along with natural gas. I also get a nervous feeling in my stomach and see colors...
  25. Replies
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    5,558

    Hi Michele, I love Florida I had family in...

    Hi Michele,
    I love Florida I had family in Zyperhills but they are gone now. I would love to live down south so I don't have to deal with the winter. I have absence and complex partial seizures...
  26. Replies
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    5,558

    Hi Chilidog, Welcome to the forum! I've had...

    Hi Chilidog,

    Welcome to the forum! I've had TLE for 44 yrs. and take my word it sounds like you may be having absence seizures along with aura seizure also called simple partial seizures. Just...
  27. Hi Ted, I'm glad to hear the good news and I...

    Hi Ted,
    I'm glad to hear the good news and I wish you and your wife only the best. I know what it's like trying so many different AED's and not getting any place. I"ve been on the cbd oil for a...
  28. Replies
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    3,532

    Hi Rose, It's good to here from you again. ...

    Hi Rose,

    It's good to here from you again. The neuro I saw last yr. wanted me to try the medical marijuana so I found out that the CBD oil is just as good and it has a little medical marijuana...
  29. Replies
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    3,532

    Started CBD Oil

    Hi Folks,

    I hope all of you are doing well it's been a long time since I've posted here. I wanted to let you know that I have started using cbd oil to see if it will help reduce or stop my...
  30. Replies
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    5,642

    Hi Dan, I'm sorry that you have been having...

    Hi Dan,
    I'm sorry that you have been having more problems? If I may ask is medical marijuana legal in your state because they have found it works good reducing and stopping cancer
    and I thought...
  31. Replies
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    11,545

    Hi Nelson, Welcome to the forum! Thank you so...

    Hi Nelson,
    Welcome to the forum! Thank you so much for all of the info. I find it very interesting. I will have to make an appt. with my Epileptologist and see if this is what has increased my...
  32. Hi Ted, Thanks for your okay! If it's okay...

    Hi Ted,
    Thanks for your okay! If it's okay with you I would like to mention your name so you can get the credit for sharing all this info. It will be
    great especially for students in Biology and...
  33. HI Ted, I find all of this very interesting. ...

    HI Ted,
    I find all of this very interesting. If it's okay with you can I share your inf. with my students in jr. high school mostly 8th graders and possibly staff when we have workshop.
    You do a...
  34. Replies
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    5,642

    Hi Dan, I praise God that you are in...

    Hi Dan,
    I praise God that you are in remission and may you live a happy, healthy, blessed life. If I may as have you looked into the medical marijuana also called hemp oil. That is known to work...
  35. Replies
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    4,594

    Hi Lil E, Thank you so much for all the...

    Hi Lil E,

    Thank you so much for all the info. I have a feeling they are charging so much for the MMJ because it's something new in NY and many people want to try it. I will be sure to
    check...
  36. Replies
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    4,594

    Hi Firehorse, Thanks for this great info....

    Hi Firehorse,

    Thanks for this great info. I really appreciate it. I think it's wonderful how you are out there helping others with epilepsy keep up the great work : )

    I'm still waiting...
  37. Replies
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    4,594

    Hi Rose, I will have to go through a lot of...

    Hi Rose,
    I will have to go through a lot of paperwork to get a legal MMJ card and be registered for the state. Also my Dr. has to take a 4 hrs. course on how the MMJ works for people
    before I...
  38. Replies
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    4,594

    Medical Marijuana in New York

    Hi Folks,

    For those of you that are interested I just found out starting in January 2016 people in NY can get the medical marijuana. You Dr. will have to take a 4 hr. course and you will have...
  39. Hi Ted, Thanks for this info. I'm going to see...

    Hi Ted,
    Thanks for this info. I'm going to see if I can get there and check it out it looks very interesting. I also have a friend whose a Assistant Producer for Universal Studios out in...
  40. Hi Ted, Thanks for sharing this message. I...

    Hi Ted,

    Thanks for sharing this message. I don't understand why a person just can't admit that they have epilepsy instead of trying to hide the issue and take a persons life. I know
    I could...
  41. Replies
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    3,318

    Hi cdogstu99, I am so sorry to hear that...

    Hi cdogstu99,

    I am so sorry to hear that your child had so many seizures. I've had epilepsy for 43 yrs. along with 2 brain surgeries to help reduce my seizures. Epilepsy runs in my family also...
  42. Replies
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    5,799

    Hi ceba71, I wish you the best of luck at the...

    Hi ceba71,
    I wish you the best of luck at the neuro appt. this does sound a lot like the myoclonic sz. I have had but once I was put on vimpat it only happened one other time. I found that keppra...
  43. Replies
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    Hi ceba71, I wish you the best of luck and...

    Hi ceba71,
    I wish you the best of luck and hope all goes well for you. If you haven't started keeping track of your seizures get a calendar and write down what time you have any seizures along...
  44. Replies
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    5,799

    Hi ceba71, Myoclonic seizures are seizures...

    Hi ceba71,
    Myoclonic seizures are seizures that happen when a person gets up in the morning or when the person goes to bed. I've always had absence seizures when this happens but I have read...
  45. Replies
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    5,799

    Hi ceba71, I tried Keppra for about 1 month...

    Hi ceba71,

    I tried Keppra for about 1 month and I had to go off the drug because it was increasing my seizures and causing me to have a hot temper. I will tell you that you should cut back on...
  46. Replies
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    1,990

    Seasonal Seizures

    Hi Folks,

    It's been a long time since I posted here and I hope everyone is doing well. Things are going pretty good for me but I know I will start to have an increase in my seizures
    coming...
  47. Hi Ted, I took Depakene which is the brand...

    Hi Ted,

    I took Depakene which is the brand name of Depakote for quite a few yrs. and I can remember how my hair would start to fall out when I was trying to comb it. The drug worked
    really...
  48. Replies
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    2,653

    Hi Ted, Thanks for sharing this info. I have...

    Hi Ted,
    Thanks for sharing this info. I have found that music helps calm my nerves and I have a lot less sz. when I listen to music. We have also done a study at work in Special Ed and have...
  49. Hi Ted, Just like your wife I can't use a lot...

    Hi Ted,
    Just like your wife I can't use a lot of generic seizure meds because they are a lot weaker and don't work as well. Here the company making the drug increases the prices but people
    are...
  50. Hi Julia, Over the 43 yrs. I've had epilepsy...

    Hi Julia,
    Over the 43 yrs. I've had epilepsy I found out that that the following things can cause epilepsy genetics, lack of oxygen, drug or alcohol abuse, a bad blow to the head, alzheimier's,...
  51. Thread: Summer and BT

    by Porkette
    Replies
    20
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    74,421

    Hi Mike, Thanks for all the info. I greatly...

    Hi Mike,

    Thanks for all the info. I greatly appreciate it. I don't know how you keep up with everything you have going on at the same time I just want you to know I greatly
    appreciate all the...
  52. Hi Lumaie, I was strictly told to stay away...

    Hi Lumaie,

    I was strictly told to stay away from antidepressents because that will reverse what the seizure meds are doing I'm not sure about Xanax. One thing you may want to try is vitamin...
  53. Replies
    2
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    2,643

    Hi Rose, Thanks! Things are going well for...

    Hi Rose,

    Thanks! Things are going well for me as I count down the days until school is over for the students. Here in NY they want people to pay $210 grand to fill out 2 different...
  54. Replies
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    2,643

    NBC Growing Hope

    Hi Folks,

    It's been awhile since I've posted but I wanted to let everyone know that this Sunday, June 7th NBC Dateline will be having a special titled "Growing Hope" It's about a family
    that...
  55. Replies
    2
    Views
    3,224

    Hi smithy1978, Welcome to the forum! I've had...

    Hi smithy1978,
    Welcome to the forum! I've had to deal with epilepsy for 43 yrs. and when my Dr. put me on Klonopin it made things a lot worse for me, my seizures increased greatly and
    the drug...
  56. Hi grimalkin, Welcome to the forum! What you...

    Hi grimalkin,
    Welcome to the forum! What you need to have done is a special e.e.g. where they flash different color strobe lights one at a time by doing this the Dr. will be able to tell if you...
  57. Hi Ted, Thanks for sharing this article I...

    Hi Ted,
    Thanks for sharing this article I found it interesting. Before I had my brain surgery my Dr. did a wada test on me to find what side of the brain I was using for my speech, most of the...
  58. Hi Lumaie, I took trileptal for awhile and...

    Hi Lumaie,

    I took trileptal for awhile and the drug is just like tegretol if your son has ever been on that before. Trileptal can sometimes cause a person to have a temper or be moody but
    I...
  59. Replies
    5
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    4,840

    Hi Stacy, In regards to the DNA test...

    Hi Stacy,

    In regards to the DNA test don't be surprised if the Dr. says they can't do it or they don't know what you are talking about but that's a bunch of nonsense. Often the Dr. doesn't...
  60. Replies
    5
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    4,840

    Hi Stacy, It's great to hear from you again...

    Hi Stacy,

    It's great to hear from you again I just wish it was on better terms. I have the same type of sz. that you have and I also have the aura sz. where I will start to see colors flashing...
  61. Replies
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    4,271

    Hi Gene, How are you doing? I hope and...

    Hi Gene,

    How are you doing? I hope and pray things are going better for you. As far as other members not being around I have to agree with Rose I think they have gone to another social...
  62. Replies
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    4,271

    Hi Gene, I'm sorry to hear that you have...

    Hi Gene,

    I'm sorry to hear that you have had to deal with cancer but I must say I like your positive attitude. One thing you may want to look into is the medical marijuana to help you out, it...
  63. Replies
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    7,835

    Hi Dan, My prayers are with you that the...

    Hi Dan,

    My prayers are with you that the Lord will heal you quickly. If I may ask has your Dr. asked you about using medical marijuana from what I have learned about it the medical marijuana...
  64. Replies
    6
    Views
    3,564

    Hi Rose, Thank you for your kind words. I've...

    Hi Rose,
    Thank you for your kind words. I've been taking vimpat for 3 yrs. and I know that has helped but I think what really reduced my sz. was a different method a friend told me about and...
  65. Replies
    6
    Views
    3,564

    Hi Julia, My prayers are with you and...

    Hi Julia,

    My prayers are with you and everyone else here. I have missed you and I thank you for your kind words. I 'm doing pretty good but I am getting tired of old man winter. I love spring...
  66. Replies
    6
    Views
    3,564

    Hi Rose, It's great to hear from you again...

    Hi Rose,
    It's great to hear from you again it's been so long. I'm still doing pretty good and for the first time in 15 yrs. I had less than 100 sz. this past yr. (2014) I know it sounds like a lot...
  67. Replies
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    Views
    3,564

    Happy New Year

    Hi Folks,

    It's been a long time since I have posted on this forum but I want to wish all of you a Happy Healthy seizure free New Year.
    Wishing all of you nothing but the best and May God...
  68. Thread: Jumpiness

    by Porkette
    Replies
    7
    Views
    3,795

    Hi Sandy, When I was taking Depakote I had...

    Hi Sandy,

    When I was taking Depakote I had to be very careful what I was eating and drinking. If I took the med with anything that had caffeine in it I would feel like someone who had a few...
  69. Hi Craig, When I was taking Lamictal I was...

    Hi Craig,

    When I was taking Lamictal I was only on the drug for 4 days and I broke out with a rash and my skin was itching like crazy I had a skin biopsy done and I found out I was allergic to...
  70. Hi Rabbit, Thanks for sharing this info. I...

    Hi Rabbit,
    Thanks for sharing this info. I find it very interesting and I'm going to check and see if the University Hospital where my Drs. are know anything about this and if they are looking...
  71. Replies
    5
    Views
    3,550

    Hi SAK89, It's great to hear from you again...

    Hi SAK89,

    It's great to hear from you again I just wish it was under better circumstances. My advice to you is to speak to your state insurance agency and also let your Dr. know what's going on....
  72. Replies
    18
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    7,835

    Hi Dan, I am so sorry that you have had to go...

    Hi Dan,
    I am so sorry that you have had to go through such a hard time and I will be praying for you that the Lord will heal you and all will be well.

    Years ago I had problems with one of my...
  73. Hi Al, I'm glad to hear that you haven't had...

    Hi Al,
    I'm glad to hear that you haven't had anymore sz. and that you are able to get your license back. I wish you the bests of luck and May God Bless You!

    Sue
  74. Replies
    14
    Views
    11,545

    Hi Folks, I spoke with the head custodian...

    Hi Folks,

    I spoke with the head custodian today and he told me they used unleaded paint in the school but what I find strange is 4 staff that I work with were out sick today, something is going...
  75. Replies
    14
    Views
    11,545

    Hi Rose, Today I have a union meeting and we...

    Hi Rose,

    Today I have a union meeting and we are going to look into this matter. Yesterday another staff became very sick and I had to get the staff into the nurses office. I have a feeling the...
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