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Looking for some answers
Sat, 08/11/2007 - 14:04I have a bit of a long story to tell so I hope all will read and help me out Thanks Tammy
Ok here it goes my boyfriend Eddie started having seizures 4 years ago he is now 31. He came home from work with a bad head and the next thing I new he was on the floor shaking like mad. I called 911 and he was taken to the hospital were they did an EEG and catscan. we were told that he had epilepsy. From there on he has continue to have seizures to dispite all the meds he takes. Nothing seems to work. There are times he has seizures fo 30 days in a row. Is there anybody out there like him? Is this the way it is?
He has been in hospital a couple of times but they seem to say nothing. Change his meds up his meds ect. His neurologist tells us that he can't even figure out whats going on. We live in Canada and we have been told that he is on the second last med that is out there.Why is there nothing working. His EEG shows a slight mark there but they say not enought to be causing all these seizures. They are saying it might be deep down and they can't see enought of it yet. He is booked for another MRI in 3 weeks.
He just seems to be sick all the time he can't work most days he can't even get out of bed. Forget to mention we have 2 small kids one who is 6 and the other who is 2. He feels bad that he can't watch them grow up. Most of the time he feels the seizure come on he tells me. H usually gets a bad head,a faint feelng,tingly, sometimes I just have enought time to get to him and get him to the floor. There are times when he has them in his sleep and there are times he can be getting a glass of drink out of the fridge and he just drops. Most all the time he shakes at all four limps for abut 30 to 120 sec. Then he stops it takes a bit then for him to come 2 and he is confused then for a couple of mins. he is even after pushing me away trying to get away from me. Then when thats all over I get him to bed and thats were he stays for hours asleep. There are times he don't shake he just tightens his body up and twists around on the floor for a few mins then its over. Is there anybody else like that?Is this a seizure 2? I forget to say the he wets himself most of the time and is usually stomach sick after.
Just looking for some answers on whats going on is this the way seizures are is there anybody else that don't have any control at all ect. Just looking to chat. Anybody can email me Thanks so much Tammy tammypower_74@hotmail.com
Comments
Re: Looking for some answers
Submitted by GodivaGirl on Sat, 2007-08-11 - 21:11
Tammy,
I don't have a ton of time to reply unfortunately, but I thought I would at least take a minute to reply back and ask a few questions.
First, what province are you in within Canada? I'm in Ontario - near Toronto (about an hour away).
How many doctors has your boyfriend had & how many meds has he been through? I agree with Samantha above, there are several meds out there, not only that other methods to try, like finding out triggers.
In Ontario (if that's where you are), and in other provinces there are epileptologists - that being a doctor who specializes specifically in seizures. I switched to one of those when I was 22 & am now 33. Sure, I still have seizures on occasion (one a month typically depending on stress), but things are getting better - even though I do take 3 meds - Topomax, Keppra & Clobazam. It does take time, but the answers are out there. Find a better doctor.
If you are in Ontario - London Medical is apparently decent, McMaster is okay, or my neurologist (epileptologist) is out of St.Mike's-Queen East & there's an entire floor of neurology there. Downtown TO has always worked for me, after all I get to go shopping :)
I've heard from others as well that Montreal is pretty solid in terms of doing surgery, if that's an option.
Medications are not the only answer. For me, that's the answer - who knows, the right neurologist may explore VNS or Surgery after they do an MRI???
However, my advise to you would be, if you don't like the answers you're getting look for a new doctor. If you're in Ontario go through your family doctor for a new referral or try contacting TeleHealth ON - they have to help you. OR www.epilepsyontario.org - the epilepsy foundation is pretty good at helping people out!
Hope this helps a bit!
Let me know if you are in fact in ON & I'll give you a bit more input when I have time. For now, just gotta do a bit more, then kinda relax for the night!
Cheers,
Erin / GG (GodivaGirl)
Re: Re: Looking for some answers
Submitted by tammyp on Sun, 2007-08-12 - 08:38
Thanks for answering me back. I guess I should put in a bit more info. Eddie has been on almost all the meds that are here in Canada his Neurologist tells us. Right now he is on Gabapentin and Dilantin. he has tried a number of drugs and nothing has seemed to work. he has tried Topmax, Keprra, Clobazam ect. Its not that his Neurologist is not trying he is good even calls us at home when I leave a message about something. He has seen other Neurologist here (St. John's, Newfoundland) and they are just as confused as we are.
He has been hooked up to the video EEG three times now. The first time he was on for three days and never had a seizure they unhooked him and it was not 5 mins later he was on the floor the second time he had a small one so it gave them a bit of info and the third time he had what they were looking for and something failed with the EEG and they never got the reading. Talk about luck.
He has had a MRI and CT SCAN and a Number of EEG. He is going in for all these tests again at the end of the month so I'm hoping they find what they need so he can get some control over whats going on. We are told that he has tonic clonic seizures and Simple Partial seizures.
Thanks for helping me out and I will keep posting when we find out something. Thanks Tammy
Re: Looking for some answers
Submitted by SamanthaC on Sat, 2007-08-11 - 15:44
Hi Tammy, My name is Samantha I am 23 yrs old and have had epilepsy since I was 2 yrs old . I read your post and I thought I would post some information that could be helpful possibly. I hope this helps a bit ïŠ Well they sound like seizures to me and several different types it seems. The first thing I would say to do is find another neuro who will start listening to you, seems as though your having no luck with the one you have. You have to find someone to listen to you. I have seizures A LOT not everyday but they are very frequent. Just because you have tried every med it doesn't mean that you can't try combinations of them. I have took up to four pills at a time to control my seizures. Right now I take keppra and lamictal a lot of people are on more then one drug at a time. Have they told you what kind of seizure he has like the name of it??? Usually they will tell you the name and that can really help in finding information The tightening seizure does he put his hand in the air or a leg in a certain position??? Because that is called "posing" I "pose" your doctor should be able to explain that further to you if that is the case. The pushing away from you thing I do that to my husband or anyone else who wants to help, I am sorry that happens I know my husband feels awful when I do that to him The faint feeling that you’re talking about is probably what they call an aura. Many people get auras before they have a seizure, that is something maybe you want to look up on the site. They information can be helpful. And when he feels like that he should try and get to the ground and lay flat or whatever right away. I get auras sometimes they help me not hurt myself as often. I would also ask about a VEEG which is a video eeg instead of your regular. It shows a lot from my experience. They tape you having seizures as well as having an EEG so they can trace it in your brain and watch the actual seizure it usually helps diagnose what kind of seizure the person has. In my experience they even were able to tell me approx. where the seizures were coming from. I wish you and your family the best of luck if there is anything else I could help you with let me know you can leave a post on my blog. ~*Samantha*~