http://www.epilepsyfoundation.org/efforums/forum/index.cfm?forumid=1 FuseTalk Standard Edition http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86940 2009-05-23T02:28:07 -05.00 ryan5116 1 A sophisticated system that tests the driver's breath for alcohol is called Ignition Interlock System. All DUI offenders can benefit from ignition interlock use. Their lives will remain undisrupted and they can still use their car - to run errands, pick up their children, go to work, etc. This enforcement campaign will begin Friday night and will continue throughout the weekend. Meanwhile, CHP will be deploying 80% of available officers onto county roads and freeways within their jurisdiction.

Ryan Decosta

dui]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86893 2009-04-28T21:38:01 -05.00 babybear1000 2 http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86843 2009-04-02T13:47:18 -05.00 Slaton Sam 1 Got to stop lamictal last month. Less coughing at night due to congestion and coughing. Don't know if that was side effects or not. But both went away as I weaned off of lamictal. My plans (hopefully dr's too) is to decrease and stop tegretol.
Any ideas on what to expect if I am able to stop this med after about 22-23 years?
Also, any ideas on how fast to wean off of it? I am real impressed with neuros knowledge of meds and his sincere care so I will probably do as he reccommends, but am curious as how it is done for others. It has been almost 15 months since last seizure. Will have to put off driving while and after stopping meds for 6 months.
Any ideas on any of this or suggestions will be appreciated.
Thanks.
Slaton Sam
SAMWALL@SBCGLOBAL.NET ]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86839 2009-04-02T04:19:55 -05.00 link9us 1 The below letter is actually something i wrote out for a doctor online that i submitted to him, hopefully he can answer some of my questions but for the sake of getting more help in forums, ill post it here also so maybe some of you may be able to determine whats going on with my epilepsy. Feel free to email me link9usshoes@hotmail.com or PM me. I will accept any private messages or adds if you have any help to give, thanks.


Hi, my name is Jeff. I'm currently 24 years old. I am really not sure what kind of medical condition I have, but the doctors think they are seizures. They have not specified what type of seizures or if I have epilepsy. I think I do have epilepsy because ive had this problem for the past 10 years. When I was a kid they were very small headache's that went away and were not that big of a deal. Now they have really gotten alot worse. The best way I can describe them is i feel some strange feeling in my head and it gets worse and worse, I panic mostly and then i go into convulsions, i feel very light headed and severe dizziness afterwards and end up with cold sweats, vomiting and just loosing control of my hands and legs. Before these symptoms happened i experience a convulsion that usually lasts 1-2 min. Then afterwards i go into like a head trauma in which i have those symptoms of nausea, and sever dizziness. When ever i go into convulsions, there is no stopping the seizure, that's when i have a panic attack. In some cases, i just feel a weird feeling in my head like i know its going to happened but some times i can suppress it but not that often. It seems i have been loosing more control over suppressing it with my mind as time goes on. It is a really scary thing to go through all the time and its been getting worse. I'm to the point that i don't know what to do. I am taking medication for it but i been taking it for about a 4 months and so far i have not noticed a single change what so ever. The medication i am taking is Depicote. This is really changing my life, because of this i don't ever feel i want to go out in public or meet my friends. I feel really really bad about not hanging out with my friends, i haven't seen them for ever and its all because of this problem i have. I have noticed some triggers that bring them on faster and it mostly involved strenuous work or exercise will bring the seizures on faster and even just walking around. Its horrible. I'm from Oregon, Grants P***** in the US and im getting help at the southern Oregon medical hospital. I am talking to a neurologist (DR Mokoden) about my problem but he seems like he does not know anything. I think i might change doctors. Ive asked him questions and he just puts his hands in the air, its like he knows nothing. I have had an EEG scan done. Something on the paper said Abnormal Brain wave patterns in the temporal lobe, but that's only records i know of. Anyways, i really need help with this, If you know different medications or a better place to get diagnosed please tell me. So far everything has been trial and air and nothing is working. I looked up this video and this guy was talking about epilepsy and he states in most cases it can be treated and people have been seizure free for like 10 years. Well hell, im just trying to work on not having a seizure in 10 days. I get them like 3 times a week. Just recently i was put on a antidepressant known as Bisporone. I found out after about 10 days of taking the drug that I am in fact more prone to seizures and the effect intensifies because the main side effect is light headiness, nausea and dizziness. Since dizziness and nausea is a cause for seizures i need a medication that i can take that do not have those side effects if possible. I really feel like nothing is being accomplished here. The doctors are supposed to determine what type of epilepsy you have by an EEG which i took. But there answers were they did not know if i even have seizures or what it is. It kind of scares me. There just putting me on medication but they have no clue what I have. The only records i have from the EEG report is abnormal brain wave patterns located in the temporal lobe section of the brain. I have studied up on seizures through the internet so my knowledge is increasing but im learning more online then i do from my current doctors. I also learned that up to 60% of people with temporal lobe epilepsy who have partial epilepsy ( partial seizures) can change into Generalized epilepsy (granmal Seizures). I hope to god that this does not happened to me, it kind of scares me. But I know they have medications that can treat temporal lobe epilepsy and it does have a good prognoses. I just need to get the right information from a professional that's why im contacting you. I'm hoping you can help me or give me some information to point the way to success for my illness. Or if you can tell me other sources on the internet where i can contact doctors directly. For some reason most of my attacks happened during the night. Not well im sleeping but just during the night time. I usually don't experience severe problems during the day but the feeling is still there or what they call the *aura* i still have that Aura throughout the day like something is going off in my head like its a scale that's going up and down and based on what i do or if i panic, worry that scale rises and it becomes worse. This is surly something i want to get under control if i plan on living a normal life. But for some reason im more prone to seizures at night where its at its most intensified level. I do not know why that is. What bothers me about this whole thing is i read up on alot of facts about seizures and none of them tell you that you have vomiting or severe head trauma. They state they only last like 1-2 min. For me this thing doesn't go away for at least 2-3 hrs. I constantly have to focus on one point with my head looking straight for at least 2-3 hrs before i can get up and walk again. It takes a while to fully recover. Are the symptoms i listed *****ociated with seizures in any way, please tell me i would really like to know that. Also well im having these episodes i feel like if i go to sleep, ill go into a coma. So i try to stay awake even though it tires me to an extent of almost p*****ing out. I have not been unconscious yet. But i feel like i could go unconscious if i fall asleep. I do not know if what i have is Generalized epilepsy, it seems pretty sever to me, but i do not have physical jerky motions like gran mal seizures. I do hyper ventilate though and my hands start shaking and my legs and arms have uncontrolled vibrations. Hopefully by telling you all this you can give me a good observational analysis of what type of epilepsy i have. I also have another question regarding epilepsy i heard there is some diets you can take as a alternative treatment that can help suppress seizures. Do you know of any kind of food to stay away from that might have a sever effect on seizures or foods that i should eat that could pontentionally controll them to an extent. I did hear of the Keno Genic diet. I might try that but it would be pretty difficult but if i know anything helps, im all for it. I also heard of another kind of treatment that involves surgery. Called Vagus nerve stimulation (VNS). Im not sure if i need that, at this point there is alot of opportunities opened to me with different medication. I have only taken 1 of the different AED's. I read online that there is like more then 20 different seizures medications for epilepsy. I do not know if this is just facts. Im hoping i can get the right medication. Is Depikote more for children or is it for adults and is it for controlling seizures or do they have a medication that is better used for epilepsy then the depikote. That's about all i have to say about my condition. Sorry if there is to many questions, i am just very uncertain on alot of these things. I hope you can answer all my questions and help me with my problem so can get more insight on what to do next. Thanks for taking the time to read this.

Jeff Matthews
]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86830 2009-03-30T02:14:50 -05.00 link9us 2 http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86795 2009-03-24T15:41:05 -05.00 szymanski 1
Because of all the requests from so many eCommunities members - and because the Epilepsy Foundation eCommunities are so very important to so very many people, we here at the Foundation have searched high and low for a new system that might give all our eCommunities constituents the ability to once again share photos and links - and, for the first time ever, also share videos, blogs and other material!

You might have heard something about the change to the new and improved system over the past several months, because we've been working on it for quite a long time.

The new site (which can be accessed by www.epilepsyfoundation.org/ecommunities, along with several of the other front and side eCommunity links you've used over the past few years), which you must register for (your current eCommunities profile will not move over - we are NOT migrating accounts over), is live now. If you've always wanted to have a new name, now's the chance to change it!

The old site will be available until at least Thursday, 3/26/09. After that, it will become read-only, which means you will be able to copy messages from those forums for a while. Once the old site goes to read-only you will no longer be able to access your private messages (PMs), so you copy any of those you wish to keep as soon as you possibly can.

If you have any questions or concerns about the site, you should (1) ping the EF moderator, (2) contact me, (3) post your question in the Announcements/FAQ forum: http://epilepsyfoundation.ning.com/forum/topics/2217546:Topic:1621. You should check out the FAQ and User Guide as soon as you've created your new account so that you can familiarize yourself with the new system and learn more about all that you'll be able to do with it. By checking these areas first, you'll probably figure out most of your questions for yourself pretty quickly and easily, since a lot of us think the site is pretty intuitive.

Because of the issues we've had in the past about pictures, we're using an approval system for photos and videos with the new forums. What this means is that you can't directly post photos or videos to the site. You'll post them, we'll approve them (unless there is a problem with them), and then they'll go up. We don't know how long this system will continue for, since it depends on whether or not we have any problems with folks trying to post inappropriate material. I know everyone is eager to start posting photos again, and I'm hoping this system will make everyone happier, since your photos and videos should eventually make it up onto the site.

We are very excited about this new site launch, and I'm really hoping this new site will alleviate and solve problems with downtime, log-in errors and other problems. This new site is a full-featured, robust, social networking platform that will allow users to upload messages, photos and videos, as well as keep blogs and do all sorts of other nifty things.

I hope everyone finds the new eCommunities as fun and exciting as me and the rest of our team here at the Foundation do - now just hop on over to the new area and create your new identity before the online name you really, really want gets taken!

Therese
Moderator ]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86794 2009-03-24T15:38:56 -05.00 szymanski 1
Because of all the requests from so many eCommunities members - and because the Epilepsy Foundation eCommunities are so very important to so very many people, we here at the Foundation have searched high and low for a new system that might give all our eCommunities constituents the ability to once again share photos and links - and, for the first time ever, also share videos, blogs and other material!

You might have heard something about the change to the new and improved system over the past several months, because we've been working on it for quite a long time.

The new site (which can be accessed by www.epilepsyfoundation.org/ecommunities, along with several of the other front and side eCommunity links you've used over the past few years), which you must register for (your current eCommunities profile will not move over - we are NOT migrating accounts over), is live now. If you've always wanted to have a new name, now's the chance to change it!

The old site will be available until at least Thursday, 3/26/09. After that, it will become read-only, which means you will be able to copy messages from those forums for a while. Once the old site goes to read-only you will no longer be able to access your private messages (PMs), so you copy any of those you wish to keep as soon as you possibly can.

If you have any questions or concerns about the site, you should (1) ping the EF moderator, (2) contact me, (3) post your question in the Announcements/FAQ forum: http://epilepsyfoundation.ning.com/forum/topics/2217546:Topic:1621. You should check out the FAQ and User Guide as soon as you've created your new account so that you can familiarize yourself with the new system and learn more about all that you'll be able to do with it. By checking these areas first, you'll probably figure out most of your questions for yourself pretty quickly and easily, since a lot of us think the site is pretty intuitive.

Because of the issues we've had in the past about pictures, we're using an approval system for photos and videos with the new forums. What this means is that you can't directly post photos or videos to the site. You'll post them, we'll approve them (unless there is a problem with them), and then they'll go up. We don't know how long this system will continue for, since it depends on whether or not we have any problems with folks trying to post inappropriate material. I know everyone is eager to start posting photos again, and I'm hoping this system will make everyone happier, since your photos and videos should eventually make it up onto the site.

We are very excited about this new site launch, and I'm really hoping this new site will alleviate and solve problems with downtime, log-in errors and other problems. This new site is a full-featured, robust, social networking platform that will allow users to upload messages, photos and videos, as well as keep blogs and do all sorts of other nifty things.

I hope everyone finds the new eCommunities as fun and exciting as me and the rest of our team here at the Foundation do - now just hop on over to the new area and create your new identity before the online name you really, really want gets taken!

Therese
Moderator ]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86619 2009-03-17T22:37:11 -05.00 pcpan2006 6
We have 4 sons and DH is considered totally disabled. I cant talk to him, because his memory is shot, unless I want to have the same conversation or answer the same questions over and over. His temper is unpredictable. One day he is as sweet as pie and the next minute he will explode over nothing. Our oldest son is 17 and he takes the brunt of his anger. Im sure it is medication related. He is on Keppra 1000 twice a day, zonegran 500 a day, ambien, xanax, prozac, depakote, lorazepam. I just want to cry some days and slap him silly others, and I feel bad because i said for better or for worse, and I worry how much worse it can get.


Because his seizures are uncontrolled, we never know what to expect day to day. the kids have been told not to take it personally when he gets on a tirade, but DH will try to help around the house by picking up, and he puts stuff away and forgets where he puts it, or he gets paranoid that people are messing with his stuff and will hide things in the strangest places.

I cant tell you how many sets of keys we have gone thru because he hides them so no one steals his car. (He cant drive anyway). I have to keep my keys with me all the time so he doenst take the only set I have.

We have been going back and forth between doctors and insurance. he was supposed to have surgery in fall but the insurance co at the last minute denied coverage ( that was pre approved) saying that he could be treated with medication. He has lost over 50 lbs in the past 2 years. THe drs appealed the decision and he is finally on the road to surgery but all the testing that was done last year has to be repeated so we are looking at summer at the soonest.

He has seizures everyday, sometimes all day long. Last week he had 3 TC's during the night. We have a 911 call a month when he goes status.

I guess I shouldnt complain because there are people that are alot worse off, and I cant imagine watching a child go thru this. The problem is that I want my husband back.. He has changed so much this past 2 years. He is so unpredictable mood wise.

Can any one relate??/


]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86541 2009-03-14T18:26:38 -05.00 iwant2help 1 http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=9&threadid=86285 2009-03-03T09:17:35 -05.00 erader 4
IS there a recommended medical alert that can be worn as a bracelet that she can press to alert family members?

Thanks for taking the time to look into this and for providing this forum for concerned friends and family.

Eric

feel free to email me directly at erader@adt.com]]>