Epilepsy Foundation

Christians with Epilepsy

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Christians with Epilepsy

As Christians with Epilepsy We believe in Romans 8:28
And we know that ALL things work together for good to them that love God, to them who are the called according to his purpose.

Members: 498
Latest Activity: 22 hours ago

Discussion Forum

loving someone who refuses meds for epilepsy

Started by Beverly Mitchell. Last reply by Terrance Lee Fields Jun 30. 8 Replies

My thoughts on forgiveness - sept 30 2012

Started by Dave. Last reply by Tammi Zavardino Jun 29. 2 Replies

Insurance

Started by Vicki Schofield. Last reply by Vicki Schofield Feb 21. 4 Replies

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Comment by Pam Sullens 22 hours ago

Hi-It's been a LONG Time since I've checked in with anyone here! Just wanted to say hello. I'm kind of bummed. I had a grandmal this past Thursday. I have had not had any seizures since one month after my resection in  June 2013. I am praying it's nothing and that it's by brain healing? TIme will tell I guess. Just needed some support-I did not get on this blog so I feel out of the loop. I don't want to feel sorry for myself. Just wanted to know if anyone else has expereieinced a grand mal after right frontal lobe resection? I was having just small ones in my sleep before my surg-but they were getting worse and more intense as a got older. If I had not had the  resection done it would not have been good. Guess this is a big wake up for me. ANyway hello and I hope all is well with people. Hope you're having good summers!

Comment by Jenny Hayward on July 20, 2015 at 9:08pm

Thanks. I was on depakote and that was nasty stuff. Then I was taken off, and tried the Lamictal with the Keppra. Not a great mix at all either. The only med I can somewhat handle is the Keppra. It is hard. I have the myoclonic jerks all the time, and the staring spells and this other thing that I have no idea what it is! Lol I never heard of the other things helping with seizures.. Interesting

Comment by anjelica duplessis on July 20, 2015 at 8:46pm
Jenny I had the same problem. I was put on depakote and it helped until my body got immune to it. Im now on Lamictal and keppra, which help control my seizures until around my menstrual. But vitamin b6, folic acid, fish oil, and coconut oil play a part in controlling my seizures. I still have a grand-ma around my menstrual but no myoclonic jerks.
Comment by Jenny Hayward on July 20, 2015 at 7:50pm

Okay question.. I take one medication for my JMC. Many doctors, and specialist's, and test's being done. Many medications tried. I cant handle any medications other then the one I am taking, and that doesnt stop all the seizures of course. Other then, doing my best to avoid the things that can trigger seizures.. And doing my best to deal with the side effects. Does any one have advice or suggestion's that might help me control seizures? I mean I have dealt with JME my whole life; my Neurologist, doctors and other specialist's are at their wits end to help me. And since I have no insurance and hardly work and cant drive, things are limited. BUT prayers and suggestions are very appreciated. Medications dont help, avoiding certain ingredients in foods and drinks, doesnt help. Test's never show anything that the Doctors want to see.. Maybe there is something I am not thinking of or asking the right questions. And I am one that will say "All things are fine and I am happy.." When I am not okay and very depressed. I need to work on that!!

Comment by Tammi Zavardino on July 19, 2015 at 11:56pm

Carlton that is good to hear because if we don't feel good about our doctor we need to find someone we do feel good about. I have had several doctors and am very happy with the one I have now and am doing so much better because she listens and works with me.

Comment by Carlton Zeigler on July 17, 2015 at 10:25am

I have been blessed with an outstanding epileptologist.  She has been a part of my care team for twenty years.  I have seen her go from an intern, to a resident, to head of Neurology.  All of this at a hospital that is a level one trauma center. 

  We don't always agree.  People have often recommended that I get a second opinion, but she is someone that people go to, for second opinions.  As I said, she is head of neurology, but she still takes time to see me personally.   She is truly a blessing.

Comment by Jenny Hayward on July 15, 2015 at 12:33am

Thanks Pat! It took about 20 years for me to find a good Neurologist. He treats me like a person and not just another number of patients to see. I have seen some idiot jerk of doctors and it is tiring. Me too, I will have seizures until I die or unless a miracle happens. I hope to find some friends here. I stumbled upon this place by accident, and it was a good accident. Thank you for commenting! Yeah, my seizures have never been controlled and I never had doctors explain what is what is I usually tried my best to search but never came up with much. So here, I hope to learn and make lasting friendships. I once was told that my JME was due to being possessed by satan because of sin. And that I wouldnt be cured until I repented. I was like, "I was born with it so how does a new born baby sin so badly to deserve that?" LOL God Bless you Pat

Comment by Pat Bruce on July 14, 2015 at 11:35pm

Jenny ,I also meant to say that I do have a good neurologist now. He listens . Didn't want you to think I was still with some jerk doctors. Lol

Comment by Pat Bruce on July 14, 2015 at 11:31pm

Hi, Jenny ! You will make some good friends here and everyone can relate to what you are going through.  I am not on this site alot anymore,but I'm making an effort to check in a bit more . I was a total lost soul feeling just like you. I prayed for help . One night I stumbled onto the Epilepsy Foundation. It really helped. That was 7or 8 yrs ago.  I have a couple moronic neurologist that overmedicated me. So I can relate. I have complex partial seizures. My seizures will never be controlled unless unless a miracle happen. I have come a long way in the last 30 yrs. You never know. Join the Living with Epilepsy group too. Lots of friends there too. God bless.

Comment by Jenny Hayward on July 14, 2015 at 10:20pm

I am new to this site and hope and pray to meet new people! I have Juvenile Myoclonic Epilepsy. I have seen many doctors, specialists and Neurologist's. I have finally found 1 Neurologist (after having this most of my life) who is finally listening and caring. Every doctor, and family member have believed and treated me as such that I have been faking to get attention. I feel so alone and feel like no one cares. This neurologist said I was born with this, but wasnt seen by a doctor till I was 15, only because I blacked out and had a grand mal seizure at Church so my parents felt like they HAD to take me to the hospital, who did nothing. Long story short, I am only taking 1 med, that only controls some seizures, I am allergic or have had horrible side efforts from all other med's so I am 'out of luck' so to say. No tests ever show anything. I have had, MRI's, AEEG's and EEG's.. I would love to make new friends who can understand what this does to one's life! 

 

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