Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Pseudo seizures and PTL

Sat, 05/28/2016 - 02:48
I have TLE and after 15 years of no seizures the last year has been like a nightmare. I even forgot I had it and when I switched doctors I never told him. When I was first diagnosed, I was told I had Jacksonian seizures. As an aside I read that people who have epilepsy can have pseudo seizures. I had very infrequent episodes since grammar school so I ignored them. I thought that the electric shocks down my arm and facial spasms were something that every one did. My new boyfriend saw it and asked me what I was doing. I said everyone does this, he said no they don't. So I was diagnosed twenty years ago. I ignored them for a few more years because the medicine worked. When I say I ignored them I mean I took the pills and did not talk about it. I moved to Orange County ca and had to change doctors. I had to start over in Orange County my seizures started coming back so I went to UCI for bipolar and epilepsy. My kids put me through hell with drugs and you can guess what else. I started having pseudo seizures along with the regular ones. I was told that I needed a psychiatrist. I had my medicine changed to lamitical for the bipolar and to my delight the seizures stopped. I put it down to my decision not to have them. I did not know it was the lamitical. I went back to face spasms and arm wiggles but less often. Now to the point. I am having partial complex seizures with dizziness stomach problems unable to stand along with drop attacks and constant twitches. I have fallen in the shower. When walking I went out for a sec and fell on my face. I have had emergency meds at the hospital to stop seizures twice. The neuro I am going to found the area that was damaged in a fall as a toddler. I was wondering if anyone else has had seizures with dizziness and unable to stand that last 6 hours. Does all seizure take 6 months to work. I also think EMTS should be nicer and not make you feel crazy because you are on antidepressants. They also like to tell the emergency room that your seizures look forced. I was so scared this past Tuesday I was so dizzy I could not move I called 911 and listened to them talk about me as if I wasn't there and ask me the same questions over and over. I almost wish I went unconscious. I want to tell the people out there with pseudo seizures to pay attention to symptoms that come and go. Itching in your head and body. Occasional twitches. Things like foot dragging every once in a while. Ankle or knee giving out on occasion. Stomach problems with or without food. It looks like IBS. Headache that almost feel like migraine but their not. Different part of head. Memory problems word confusion. I have even had problems with making to much insulin that have gone away. Keep a diary. Also with my pseudo seizures I did not hurt my self. When the seizures got worse I thought it was in my head because the seizure specialist ten years ago said they were. New tests showed otherwise. My seizures were mild infrequent and looked like other common problems. Joint issues Fibromyalgia ect. It is hard to find something wrong if it happens rarely. Doctoring is a duet. Keep a positive image of your life and your self.

Comments

OK you have TLE and after

Submitted by just_joe on Sat, 2016-05-28 - 18:54
OK you have TLE and after years ofno seizuresyo uhave a nightmare. You read that  people can have psudo seizures and epilepsy. Was it a doctor that wrote that or someone that thoight they had them? I ask that because there are what some people call psudo seizures. There is a seizure disorder and the seizures look like epileptic seizures amd mirrow them. But with those medications may not help. If your seizures are like the symptoms you said were psudo seizures then  they may not have been psudo seizures. A person can have more then one type of seizure or even one type of epilepsy.Not telling your doctor could hurt more then help. All your doctors need to know all the medications you take because a medication for one thing can counter a medication for another. For instance I read about a medication  person can take that will help stop smoking. My PCP would not prescribe it for me. I thought that sucked until I heard him say that one of the side effects the medication has is "Mat cause seizures in seizure prone people" Well I have seizures so I really don't want to take a medicatin that might cause me to have any others.You posted you were taking lamictol and your seizures stopped. Lamictol is a good medicatin that was designed to stop seizures.You moved and had to start over.you went for bipolar and epilepsy. Was the neurologist a specialist in both disorders? or just one of them?The neuro I am going to found the area that was damaged in a fall as a toddler.  Well now you have somethingthat can be worked with. A person can have something happen causing a concussion which if not treated can cause a hemoragh to the brain that hemoragh can and will cause scared brain tissue. Meaning the electrical impulses in that area will hit wrong. Neurologists can see that in an EEG. The electeical activity shows up abnormaly activity. That type of output is spikes or waves aka seizure activity. My epilepsy is caused by just that, A bow to my head caused a hemoragh whe=ich caused scar tissue. I had seizures that lasted 5-8 minutes but gettig back to normal took 15-45 minutes or until the next day.Doctoring is not a duet. It is however working with your doctor to help get your seozures controlled. Two singers are a duet.So in order to get th help you need you need to contact your neurologist  and ask questions. Are all the lhings listed in this post seizurs or are then psudo seozures. But tell him about yor time on lamictal too. It might surperise you to find out that raising the lamictal levels could stop your seizures.I hope this helpsJoe

If you were diagnosed with

Submitted by just_joe on Sun, 2016-05-29 - 12:24
If you were diagnosed with TLE and the medications stopped the seizures then why do you say PSUDO seizures. All of the things you posted under psudo seizures are seizures or parts of seizures which you can research under types of seizures.You took lamictal which stopped your seizures so the medications wer working. With PSUDO seizures the medications would not have stoped or controlled the seizuresTo get more information about psudo seizures you need to go to the NSDF site. Psudo seizures are seizures and the NSDF is working to get specialists in epilepsy to help disgnose them as well as epilepsy.If your medications and dosages have been the same for some time a change in th dosage may be all that is needed to get your seizures under control.A person have had grand mal (tonic-clonic), Petite mal (absence) simple partial, complex partial generalized and the list can go on. But in th past 15 years most have been focal seizures.I hope this helps and you get the assistance you needJoe

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.