Do You or people you love have epilepsy?

I have had epilepsy for 26 years.

I have had epilepsy for most of my life. It was not diagnosed until I was about 21. When it was first diagnosed, but it was probably there before it was diagnosed. When I was a child I remember having vision that sort of became shaky, but I never told anyone about it. My mother also had epilepsy, but it was not as bad as mine. My seizures were always Grand Mal. They kept getting worse. About 10 years ago, I had to be put on disability because nothing could control the seizures. It was sad, and lonely. They continued to get worse. In September of 2010 I went to the Clevelend Clinic and had surgery. Have not had a seizure since. Took a lot of protein bars and protein shakes to help my healing. That worked very well. I emailed the companies and they sent me wonderful coupons! That was so nice of them. There are a lot of web site that explain seizures and what can be done to help someone who has seizures or loves someone who has seizures. That is how I found out about the Clevelend Clinic and asked my neurologist to send me there. There is a group on facebook that is wonderful for people with epilepsy or people who love people who have epilepy. I belong to it. I helps me sometimes.

Right after my surgery

This was what I looked like right after surgery.
This was what I looked like right after surgery.

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Comments 55 comments

Brenda Durham 5 years ago

I know several people who have epilepsy. One was only able to hold a job (because of his seizures) because his father owned the company and was willing to deal with his episodes. Another has Grand Mal seizures often and is trying to get on a medication pattern that helps. Seizures are, I think, more common than most people might think.

Thanks again and for this informative hub; and God bless you!


Michele Travis profile image

Michele Travis 5 years ago from U.S.A. Ohio Author

You are better then most. A lot of people do not understand seizures. They are very painfull for people. Not just physically. Thanks for reading this. You are a wonderful person.


North Wind profile image

North Wind 5 years ago from The World (for now)

Epilepsy is not something that most people understand or have patience with. I do know a few people who have Grand Mal epilepsy and I know some with Petit Mal. Because of my friend's Epilepsy, I know more about it.

You are right, seizures are painful...I think sometimes more mentally than physically. I always put myself in my friend's place and I know she just wanted me to be there for her. This hub will help many others who come across it. They will feel less alone.


Michele Travis profile image

Michele Travis 5 years ago from U.S.A. Ohio Author

Thank you, I know this is just online, but it does give people this chance to talk to each other. I wanted to talk with other people who have epilepsy. People who do do not have it just do not understand, they think because I had the surgery it is all done. That is not true. I am still taking medicine, and the neurologist is starting to lower my doses, so it is starting to get scary. Not many people understand that. Thank you for understanding it. That means a lot for people who do have epilepsy, no matter what type it is.


MsDora profile image

MsDora 5 years ago from The Caribbean

Michele, I hope that your health continues to improve. I appreciate your willingness to share your own experience to help educate the rest of us. You have a wonderful spirit and a beautiful face. Cheers!


ahorseback profile image

ahorseback 4 years ago

Michele, hello , You are amazing you know to share this ! My father was epileptic and had major seizures most of his life. I am rpoud of you for having this operation and hope that it makes your life healthier and happier. Its also nice to have a new friend!...:-}


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you so much :) I am also happy to have you as a new friend.


ahorseback profile image

ahorseback 4 years ago

Michele , thank you for commenting on my horse hub! As you know there is no better feeling in the world than to connect with the right horse , heck all of them ! I am so happy and feel for you in all you have missed in not riding , Something tells me you're a good rider , as my experience has realy only been trail rides ,I am not a lifetime rider , only the last twenty or so years , But there is no better healing than to do so oudoors ,on a horse , doing something you love. I keep thinking of actually volunteering to work a horse ranch. Just to be around these beauties, the smells, the Kinship !I love it all. Good for you and keep riding!....:-}ps. I think that as I mount a horse A smile comes to my face and doesn't leave until I dismount and drive away!


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you ahorseback. They put smiles on my face also. They know who loves them. They are smart and they feel love also.


aguasilver profile image

aguasilver 4 years ago from Malaga, Spain

Hi Michele,

Our daughter Jessica suffered seizures from age 3, but we finally managed to stop them (just coming up to the two years free mark now) when we cut all gluten from her diet.

I have two hubs about it:

Epilepsy - Jessicas story

Epilepsy - Jessicas story - Part Two

If you want to read her story.

When she was still fitting, we read most everything we could about the problem, and were fortunate to find a doctor who recognised the dietary relationship we knew existed, and was able to guide us out of the maze that epilepsy is for those caring for epileptics.

Glad you are fit free now, stay blessed, God does guide us out of the mire!

John


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you for your comment. I thank God she is free from seizures. There are serveral reasons for seizures. A lot of doctors do not have any idea what the reason is. Your daughter has wonderful parents. I will read your hubs because learning more about epilepsy is important to anyone who has it. My epilepsy comes from lesions on the left side of my brain. They could only take some of them off, they might keep growing, but for now I just keep thanking God for all He is doing for me.


aguasilver profile image

aguasilver 4 years ago from Malaga, Spain

Jessica's seizures were not from lesions or scar tissue, all the tests and scans showed her brain to be damage free, which was a blessing and obviously made her case simpler to deal with. Physical damage is of course a problem that requires different treatment.

She does now have a tendency to favour her left side, as the attacks were in her right lobe, and is also more creative and artistic, but not terribly well coordinated in sports and things that require manual dexterity.

She was a late reader, but that was to be expected as the medicines she took before we went natural turned her into a monosyllabic almost vegetative zombie, who could hardly walk.

She lost two years schooling.

However since she started reading, she has now improved dramatically and consumes three books a week, and serious books also, not just children's books, so we thank God for her continued improvement.

I pray that you will be fully restored in health and that any damage done will be rectified by God.

I know and trust Him to do all things, and if we stand on His promises, He will fulfil them for us.

John


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you John, I also trust God. He will fulfill his promises to us. I love God and thank him so much!


mathair profile image

mathair 4 years ago from Ireland

Great to see that the operation worked. I too have epilepsy since I was a little girl.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

I hope what ever you are doing to control it helps.


Drtruthman profile image

Drtruthman 4 years ago from Harlingen, Texas

Just loved this article as painful to read as it was. I am so glad you are doing better. My epilepsy is genetic but never realized I had it till age 50 and experienced my first Grand Mal. I am a Grand General Epileptic and plan on writing about my journey and how it has effected me. They won't give me SSD because they say my seizures are controlled even though NO one will hire me knowing I am an epileptic and I have the dreaded "auras' sometimes daily and feel like I am not all here. Anyway, I am so glad to know all of these other folks are here. Great job. I voted UP, useful, interesting and awesome.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

I am going to pray for you. It is horrible that they will not help you. I just don't understand why. I understand exactly how you feel going into a seizure. They gave me brain surgery because I might have died. I stop breathing during and after seizures. The worst one was 2 minutes. Then they started to help me breath with a bag. I was in the hospital, they had taken me off all of my medications to test how bad my epilepsy was before surgery to see if I really needed it. I had surgery at 6:00am the next day. I don't remember any of it. A few people asked me if I saw a light, but my heart did not stop so I don't think I had a death experience, just that God was protecting me.


Drtruthman profile image

Drtruthman 4 years ago from Harlingen, Texas

Well I stopped breathing after my seizure in 2005 and did have an out of body experience. It was very interesting and I do plan on writing an article about it. It gave me a new perspective on both life and death. Glad you're out there for all of us as epileptics and I can sense the spirit of God in you so I feel a real kinship in talking to you about our mutual illness. God bless you and your writing and I do pray for you.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Wow, when you write your hub I want to read it as soon as you write it. I believe in the out of body experiences. Please let me known when you have written it. And I do feel the same way you do. God does connect his children.


Susan Joyner-Stumpf 4 years ago

Michele, the only person I know who has these seizures is our mutual friend, Dr. Lee Outlaw, but I've never known anyone in person to have suffered. I'm sorry. I pray for you both and thanks for sharing and informing those of us who may not suffer this, but have friends and loved ones that do and so I do want to know more. Dr. Lee actually gave me this link and I'm so glad he did.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you, he is a wonderful man. I should give others his link. Thank you for praying. I believe God has protected me many times.


KevinC9998 profile image

KevinC9998 4 years ago

Hi Michele: I have a five year old Cock-a-Poo dog that has been having Grand Mal Epiletic seizues for the past three years. The vet currently has her on Pheno-Barb twice daily which significantly reduced her seizures. I have learned alot from the Internet and now also your hub, thanks and glad to hear your surgery was a success, voted up, Kevin


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you Kevin. I am glad your dogs seizures are under control. A lot of animals have them too. Your dog has a very good owner, some owners just put them down.

Thanks again for your comment.


Drtruthman profile image

Drtruthman 4 years ago from Harlingen, Texas

Kevin brings a great point up which many are not aware of. My father used to raise "Boston Terriers" who most vets claim are actually born having seizure. They could sense me as an epileptic very easy and I don't know all of the details but apparently the strength of my discharging alpha waves were upsetting them, they would bark and howel, go into seizures themselves and I would get headaches so bad from being inside with them I would have to leave. As my Dad says, "Dogs are people too". With epilepsy that is apparently true. Keep me in your prayers I had a moderate seizure Tuesday, passed out during a meeting, hit my head and nose and shook bad enough to scare the couple I was doing a mediation for. Hope you are doing better. Lee


aguasilver profile image

aguasilver 4 years ago from Malaga, Spain

Hi KevinC9998,

Re your dog, take a look at the research this guy has done on the subject:

http://dogtorj.com/

The basic message is cut out gluten for your dog, don't know if it will work for your dog, but it worked for my daughter, she has been fit free for two years and stopped fitting two weeks after cutting gluten from her diet.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Lee I will pray more for you. I noticed you have not been on hubpages. You know most of the animals that have seizures, I think but will check into it, are dogs and horses. My horse had seizures when he got older. He did die and my heart was broken. His name was Champ. That was why my old email was loveschamp. Not my email anymore, but you understand.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

That is true, and amazing. It works for people and I wish more people would know about it. What I don't understand is why they don't make this more well known. People and doctors do need to know more about this. But all we see on tv is things you can buy for blood sugar or wheel chairs


Drtruthman profile image

Drtruthman 4 years ago from Harlingen, Texas

Thank you for the prayers Michele. I love everyone's input here. It is in someways better than the Epileptic Support site I am a member of. As to the gluten free diet, it is true and it it does seem to have enormous benefits in reducing both juvenile and animal epilepsy. In older adults research seems to show only minimal effects and to some degree even an increase seizure impact. After having repeatedly Tonic clonic seizures recently, my neurologist had me increase my carbs and gluten content. I have lost 70 lbs this past year using Adkins and almost NO carbs or gluten and apparently this too has a negative impact on Alpha wave control. Of course I am only a doctor of Psychology and NOT a neurologist. The bottom line is there is definitely a food link here. Also, in Europe; especially France and Germany, anti-seizure meds are now successfully being made from cannabis (aka marijuana) which not only eliminates seizures but also the dreaded aura which so many of us have. It also has NO effect on the liver or kidneys as do most USA produced anti seizure meds. As much as I am anti-drugs, this seems to be a positive additional means of use for vegetation which is mis-used but obviously God created for some purpose and maybe this is one such medical use. I might ad, the recent solar flares are playing havoc with anyone having neurological problems. Don't forget the brain is both electric and electro-magnetic and the solar flares had impact on microwaves, navigation, gps, satellites, medical testing equipment and epileptic, bi-polar, stroke, pace maker patients, etc. I will email you as to why I have not been on Hub so much. Mainly work. Lee


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

I was wondering why you were not on hubpages, I had not seen you for a while and was worried about you because you had told me earlier you were starting to have auras. I am going to a meeting at church tonight and will pray for you. My seizures are grand mal, but you know that. They will never go away. There are lesions on the entire left side of my brain. The doctors told me that for now they could only take some because if they took more I would be blind, unable to see and more. They will probably continue to grow. My meds had to go up again. Each year my liver gets checked. Each year it gets a little bit worse ( not a lot, just a little) my mother had this, so maybe it ran in the family. What is strange is that, when I was a child sometimes I would have to sit down because the world was spinning around me. That would happen only now and then. I never told anyone at that time because I didn't know what it was. So, maybe what I say on my personal page isn't true, maybe I have had it as a child. But, never told anyone. I never fell down at those times though.


Drtruthman profile image

Drtruthman 4 years ago from Harlingen, Texas

Thanks for your prayers.

Lee


Mathetes 4 years ago

Hi Michele.

Reading your hub fills with awe. You ate an survivor,encourager. Your boldness to share your trying experience is on the substantial mission elevatin highly positive results. Thank God for all supportive thoughts and prayers. We all are benefitting . Elevated faith in God's promises, makes believers stronger to believe more , encouraging those who are on the way to believe, and is becoming a leading argument towards total success .

Obviously, the more " publicized" praying and believing by all who do dare to walk in the supernatural,of God is reveale, the more wonderful manifestation is reported


Mathetes 4 years ago

Micheleforgive me for mistake--made in typing : this is conclusion :

... of God's answering prayers. It is wanderfu to know how prayin, believing and receiving is more often being reported. So beautifully said by John Aguasilver:" I know and I trust Him..." That is the highest victory achieved as faith in God''s power changes into knowing.

This is my first acquaintance wit epilepsy case. However,not first with the attack of an infirmity on my body. The severances of it needed to be controlled by a strong medication in order soundly to preform " duties". Prayers or praying to receiving healing wasn't common, since in my " vocation" has benn discouraged any invalvement into supernatural of God.

Paradoxically, my courage to investigate has surpassed all expectations. Praying for healing has been answered by TOTAL healing. Not knowing to haw to react to the manifestation ,it took thre days before sharring with my wife. Awhile later sharring news of healing with the" faithful "

has resulted in " writing on the wall" toward gradual " out" of the " system"...

Presently we are " out", free of man's controll of how to do or what to do...We do pray and do lay hands on date sick, we do cast evil demonic spirits out in the Name of Jesus and the sighs do follow,( Mark 16:20 +).[Needed to be mention that the science of medicine fights the same enemy.]

Michele you willbe healed completely by the power of the Name of Jesus. Continue,please to believe : Is. 53:5.

MichaEL


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you MichaEL you have truly been sent by God.


Express10 profile image

Express10 4 years ago from East Coast

I met a very sweet lady who was down on her luck and needed the assistance of a non-profit that I once worked for. I soon found out why she was down on her luck. She told me that people were "weirded out" by her goiter and immediately after she fell into a seizure. The combination of health problems, visible and non, did make it extremely hard for her to work and she had no safety net.

She had a seizure each of the first two times she came in and there was no warning, completely 0 to 60 skipping everything in between. All I could think to do was turn her on her side so her tongue wouldn't roll back and to make sure any fluids to be expelled didn't interfere with her breathing.

As in your case it interfered with her working. That was my 1st glimpse into epilepsy. I haven't seen her in years and hope that she is doing better now. Thank you so much for sharing your personal story it helps us all better understand not only the disease but how strong you are.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you Express10 for your comment. I feel for her, and will pray for her. Turning her on her side is the best thing to do when someone is having a seizure. That way if the happen to have fluids,come up from their stomachs, they will not choke to death. It is God, and my family that has helped me. I cannot thank God enough for all that has been done to help me. I thank God every day.


wwolfs 4 years ago

Michelle - I've been to this hub a few times but have been at a loss for words. I can only say that I'm sorry for you having to go through what seems to be a horrible disease. I don't know much about epilepsy but did see a women once have a seizure at an out-of-state restaurant. She was sitting at a booth next to me and watching her go through an attack was scary. She did leave in an ambulance.

I hope your surgery helped you and that you are able to fight this disease and have a better life. It certainly sounds like you have suffered a lot throughout the years. Keep up your faith and research everything you can to help you with this. I wish you the very best and many blessings to you.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you wwolfs the surgery was a gift from God. It has been about 1 1/2 years and I have not had a seizure since then. I used to have then so often I could not drive. I even stopped breathing for more then 2 minutes. I had been hurt so many times, falling down stairs, hitting my head. A list of bad things. But, now the list is gone. Thank you again for your comment. I am doing very well.


wwolfs 4 years ago

I am so happy to hear that you are doing better. It would be nice if you didn't have to suffer with seizures anymore. I wanted you to know that I sent you some information through your HubPage email. I am really sorry to hear about you falling and hitting your head like that so many times. As I mentioned, I really don't know much about epilepsy, but I do wish the best in fighting that disease. Take care of yourself.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Thank you again. I appreciate your comment very much :)


Suzie HQ profile image

Suzie HQ 4 years ago from Dublin, Ireland

Hi Michele,

Just new to hubs and felt i wanted to congratulate you on your great hub as I too have grand mal. I have just published my first hub as a way of giving back to the community and I am thrilled that you found surgery a success. Well done you!!


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Suzie HQ thank you for your comment. I pray for you to get control of your grand Mal. I understand them. And God Bless you.


Laurinzo Scott profile image

Laurinzo Scott 4 years ago from Phoenix, Az.

Thanks for being so honest, Michelle.


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Laurinzo Scott You are welcome :)


digitalduck profile image

digitalduck 4 years ago from Colorado

Hi Michelle, I wanted to introduce myself. I'm new to Hubpages (as of now) and posted my first hub... I have epilepsy and wanted to share my story. I ran into DrMark's article about trained dogs and I had made a small reference in my hub regarding that. I didn't realize how small of a world it was :) Glad you are doing well.

Chuck


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Welcome to hubpages. It is nice to meet you Chuck. I hope you are doing well also.


buckwheats 4 years ago

Hello,

I too live with epilepsy. I was diagnosed at 13 but I think I might have been born with it. My major seizures have been under control since I was 16 (I'm 41 now) with medication but I have all sorts of smaller petite mal ones. I am so happy for you that you don't have them any more! That is quite a major surgery to go through. How are you doing now?


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Well, from time to time I do have a seizure. The surgery was on my left frontal lobe, and sometimes my right leg gets weak so I fall. I have hurt myself a few times, but am still trying. I will pray your petite ones stop. But, it is a lot better then it used to be. I have only had a few, just a few.


buckwheats 4 years ago

You are a strong lady! I guess a few would be better than what you had before. Sorry about your leg, that's a tough one and I guess there is not much they can do to help with that right? Do you still have to be on meds.?


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

Yes, I still have to be on medication. I have not really commented on this very much. I have lesions on the left side of my brain. The surgeons could not take all of them away. I went to my neurologist and it seems as though they are still growing. The doctors at the Cleveland Clinic told me that would probably happen. That is the reason I have to be on medication. One of the medications I am on called Topomax. The dosage I have to take is the same as a 250 pound man would take. The lesions are a large. To be honest, and I don't know why I am telling you this, I probably will not work.


buckwheats 4 years ago

I'm sorry if I was too forward. I take frisium 20mgs at night time, as of late I've had to take a little ativan but that is due to me changes causing widthdrawl and seizures. Meds are a whole other issue eh?! (The Canadian eh..lol)


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

No you were not too forward, it is just fine to talk to other people who have problems and issues. Life is life eh? I have been there a few times, not that counts :)


buckwheats 4 years ago

very true life is life and sometimes it sucks! :)


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

You are right buckwheats sometimes it does :)


pramodgokhale profile image

pramodgokhale 4 years ago from Pune( India)

Michele Travis,

Salute to you Ma'am and great courage to fight and survive. I am an Indian, now i write my experience. My neighbor's son had been epileptic ,undergone treatment , improved lot.He remained jobless for life because of seizures twice in week. He left education half way. In India we do not have advanced medical systems and poor people utilized traditional methods because they can not afford to spend large amount of money.

Your story is inspiring and will stimulate epilepsy patients across the globe. Hope The God gifted you happy life ,enjoy and mentor people.

Thank you for the article.

pramod gokhale


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio Author

pramod gokhale Thank you so much for letting me know what has happened in your neighbor's family about epilepsy. That takes a lot of courage. I am very glad that you neighbor's son has improved. That means a lot to me.

Thank you again

Michele Travis

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