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1st Tonic clonic

Mon, 03/25/2019 - 09:49
Hi I am not diagnosed with epilepsy as at the age of 51 I only had a first seizure 2 weeks ago and taken to hospital. I’m hoping just a one off as after having just one I cannot imagine how you all manage when this is recurring. I have only just started to feel better today 16 days on. Have been confused unsteady and very dizzy when I move my head and at bed time my room flips I just wanted to know if anyone thought their 1st time was a one off as I am a little worried it will happen again I had a tonic clinic seizure in the middle of a car park. I know nothing of it except the large lump on my head but the lady who saw me said I was wondering around looking very confused then started jerking face contorted then I passed out hitting her car and then backwards onto road and seizure lasted 2 mins I also lost bladder control

Comments

In year 2004, I started to

Submitted by philip k on Mon, 2019-05-13 - 04:24
In year 2004, I started to have convulsive seizures at my freshman years in the university. After my second convulsive seizures within 5 days after the first one, I had done the EEG test, and then was diagnosed with epilepsy. I still had so many seizures within a week with the AEDs. I had many side effects from the meds, lost my jobs, driver's license, and ability to focus on studies at school. I took years off from the university. My neurologists told me he could not find what cause the seizures for me and it is dangerous many times because many seizures lasted more than 5 minutes and had multiple seizures at a time waking up in an ambulance or at the ER. I was only suggested surgical treatment to implant a device to control my seizures, which I did not want to do at the time. So after 3 years of trying AEDs, tests, following guidelines and advises from my neurologist, I tried to search for alternative treatment. I had taken different approach to control my seizures and finally after 6 months of alternative treatment, I became AEDs free, and seizure free. My neurologists could not believe my seizure was controlled without AEDs, and without any surgical device implantation. I asked him to sign release so my driver's license could be reinstated, but he told me he can not do it in short period of time. I went back to see him again in 2010, almost 3 years after not taking any AEDs and with no episode of seizures. After going through many exams thoroughly, he signed a medical report for me to get my driver's license back. He told me he had never seen anyone like me who had severe uncontrolled seizures becoming better in 6 months. He told me it is like a miracle. I had horrendous life with seizure. I know what people feel with seizures in their life. Sometimes I felt I was weak, and had so much frustration. I had no hope for better future at the time. After the alternate treatment I had, I found hope and healthier me. It is now 2019, and I am still seizure free, and meds free. I want to help people who have similar issues. I had helped 2 other individuals who also had seizures for more than 20 years. I can not guarantee 100% effectiveness for all types of seizures but when it works it works like magic. If you would like more info, let me know

One-off seizures are quite

Submitted by Athena_5ce4563aba984 on Fri, 2019-06-14 - 15:01
One-off seizures are quite possible. You don't say if you have been prescribed drugs or if any tests were done (EEG, or scans?). I would say be very sure that you need drugs before taking them. I also don't have a definite diagnosis, and the drugs have really screwed me up, with no reassurance that I'm taking them for any reason. The doctors are really against me trying to come off them. They seem to think that it is fine that I take what are quite aggressive drugs for the rest of my life, with the long-term implications of that, and don't seem to understand that I have to know what I'm doing, and to be able to weigh up what life would be like if I didn't take the drugs if I do have epilepsy - the side effects of the drugs may or may not be better than any seizures. I had one person with epilepsy describe it as the 'epilepsy train'. Once you have been put on it by the doctors, it can easily run out of your control. She ended up with various kinds of surgery which she feels, on reflection, she didn't really need, and endless high doses of AEDs and other drugs to cope with side effects, and that if the doctors had acted differently at several points, she wouldn't have got into the state that she did.I am not saying that no-one needs drugs to make their life liveable. Clearly for some, they do really need them - some have multiple kinds and numbers of seizures, I'm not denying that -  or they choose the disadvantages of the drugs over seizures. But don't let doctors browbeat you into doing things that you don't want to do. Ask lots of questions, and if you don't feel that one doctor is listening to you or treating you with respect, try another.

One-off seizures are quite

Submitted by Athena_5ce4563aba984 on Fri, 2019-06-14 - 15:04
One-off seizures are quite possible. You don't say if you have been prescribed drugs or if any tests were done (EEG, or scans?). I would say be very sure that you need drugs before taking them. I also don't have a definite diagnosis, and the drugs have really screwed me up, with no reassurance that I'm taking them for any reason. The doctors are really against me trying to come off them. They seem to think that it is fine that I take what are quite aggressive drugs for the rest of my life, with the long-term implications of that, and don't seem to understand that I have to know what I'm doing, and to be able to weigh up what life would be like if I didn't take the drugs if I do have epilepsy - the side effects of the drugs may or may not be better than any seizures. I had one person with epilepsy describe it as the 'epilepsy train'. Once you have been put on it by the doctors, it can easily run out of your control. She ended up with various kinds of surgery which she feels, on reflection, she didn't really need, and endless high doses of AEDs and other drugs to cope with side effects, and that if the doctors had acted differently at several points, she wouldn't have got into the state that she did.I am not saying that no-one needs drugs to make their life liveable. Clearly for some, they do really need them - some have multiple kinds and numbers of seizures, I'm not denying that -  or they choose the disadvantages of the drugs over seizures. But don't let doctors browbeat you into doing things that you don't want to do. Ask lots of questions, and if you don't feel that one doctor is listening to you or treating you with respect, try another.

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