Temporal Lobe Epilepsy & Hallucinations

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Hi all, I have refractory temporal lobe epilepsy (left temporal lobe) with focal seizures. I have been on a number of meds, I'm currently on Topiramate but my seizures are drug-resistant. During my seizures I sometimes experience what my neurologist calls "scenic hallucinations" - I see people standing in the room with a horrible, vulnerabe feeling that they're coming to get me. These only happen at night and are under control right now (thankfully). I've been feeling really stressed out and anxious because of my job (I'm working on my dissertation) and the COVID-19 situation, having to self-isolate at home, the toll constant seizures bring etc., and I think I've been experiencing auditory hallucinations but without seizures. I really don't know what to do. ;( This is scaring me. Does anyone have any similar experiences? I feel so alone with this... Best wishes, Lea

Comments

Yep. I've had Hallucinations

Submitted by Misjoey101 on Tue, 2020-04-07 - 17:43

Yep. I've had Hallucinations before. My doctors have called them focal seizures and simple partial seizures. I haven't had many in my life but, they are all so weird to me because I'm conscious the entire time. Ex.Just finished college. Went to take a final exam one day. Walked into the room and there was the wrong teacher and wrong group of students. I talked to the teacher to make sure I was in the RIGHT place at the RIGHT time. He said "YES". I went outside and started writing an email. I went back in for the previous teacher's name. Suddenly, within 5 minutes the entire room had changed to my original classmates and teacher who said he had been there the entire time. ?????????????????

hi this is my first time here

Submitted by AlonzoH40 on Mon, 2020-04-13 - 09:25

hi this is my first time here and i have had them where my wife says i have called out to ppl that werent there mine are in my right front temporal lobe i had a rage seziure and she is scared i'll have another i had it last year im 40 and it all started when i flipped my truck 2015 i have a seziure almost everyday maybe 2 times a day im on keppra and topirimate and im still having them i have been seziure free 5 days now with a med change but im scared but when im cold......

Hi Lea Topiramate is a

Submitted by dmh1 on Sat, 2020-04-18 - 12:37

Hi Lea Topiramate is a Topamax generic and can cause hallucinations, very scary. I’ve experienced that. my neuro changed my meds to a keppra/lamactal combo and it stopped the scary visions. I have left temporal damage from a bike accident in 1996. I have complex partial seizures with the odd grand male. I understand exactly what you're talking about...you'redefinitely not alone. Everything that’s going on at the moment is very stressful, never mind having to cope with a thesis at the same time, that is a lot of stress for one person to cope with. We all obviously react to different things in different ways but I can definitely relate to stress as a seizure trigger. The covid 19 thing was a trigger for me as I knew it was going to affect my business etc. “Stress seizures”are more “intense” for me, I also get that vulnerable / paranoid feeling and it really sucks as you know. I’ve had a thousand odd seizures. but enough about me.Here is the thing that I want to share and I know its going to sound silly. There is a bit of psychology involved as well but its pretty simple. We all do things consciously as well as subconsciously all day long. for example, you don’t have to concentrate to or blink or walk etc, your subconscious handles that automatically. Same with breathing, But..if you consciously take a very deep breath, believe it or not your subconscious automatically tells your brain to “calm down” and it only takes a few seconds, like I said, it sounds silly but its a built in feature that we all have. I don’t know if you get a “warning” type feeling, also known as the “Aura” before a seizure and/or if you are still able to process things while you are having a seizure, if that is the case, then that’s the time to take deep breaths. Also, practice taking deep breaths randomly during the day so that it becomes second nature...if you think about it, most of the meds we take shut down electrical activity in our brains so as to “stay calm” more than anything else. Deep breathing does the same. Its not necessarily going to stop a seizure but it definitely helps. Most importantly, you have to eliminate the stress otherwise it becomes a vicious circle. We all handle things like this differently, some will write a book, others will down a bottle of booze etc. Step one for me is “acceptance”, you have to accept it before you can fix it otherwise you just stay stressed about it and it manifests in your subconscious and invariably ends up triggering a seizure. Remember that your mindset is just as important as your diet...and drink enough water. I sound like my mom. All the best Dougdmh1@post.com - if you want a lecture on diet lol

Hi Lea Topiramate is a Topamax generic and  can cause hallucinations, very scary. I’ve experienced that. my neuro changed my meds to a keppra/lamactal combo and it stopped the scary visions. I have left temporal damage from a bike accident in 1996. I have complex partial seizures with the odd grand male. I understand exactly what you're talking about...you'redefinitely not alone. Everything that’s going on at the moment is very stressful, never mind having to cope with a thesis at the same time, that is a lot of stress for one person to cope with. We all obviously react to different things in different ways but I can definitely relate to stress as a seizure trigger. The covid 19 thing was a trigger for me as I knew it was going to affect my business etc. “Stress seizures”are more “intense” for me, I also get that vulnerable / paranoid feeling and it really sucks as you know. I’ve had a thousand odd seizures. but enough about me.Here is the thing that I want to share and I know its going to sound silly. There is a bit of psychology involved as well but its pretty simple. We all do things consciously as well as subconsciously all day long. for example, you don’t have to concentrate to or blink or walk etc, your subconscious handles that automatically. Same with breathing, But..if you consciously take a very deep breath, believe it or not your subconscious automatically tells your brain to “calm down” and it only takes a few seconds, like I said, it sounds silly but its a built in feature that we all have. I don’t know if you get a “warning” type feeling, also known as the “Aura” before a seizure and/or if you are still able to process things while you are having a seizure, if that is the case, then that’s the time to take deep breaths. Also, practice taking deep breaths randomly during the day so that it becomes second nature...if you think about it, most of the meds we take shut down electrical activity in our brains so as to “stay calm” more than anything else. Deep breathing does the same. Its not necessarily going to stop a seizure but it definitely helps. Most importantly, you have to eliminate the stress otherwise it becomes a vicious circle. We all handle things like this differently, some will write a book, others will down a bottle of booze etc. Step one for me is “acceptance”, you have to accept it before you can fix it otherwise you just stay stressed about it and it manifests in your subconscious and invariably ends up triggering a seizure.  Remember that your mindset is just as important as your diet...and drink enough water.  I sound like my mom. All the best Dougdmh1@post.com - if you want a lecture on diet lol

Hi Lea Topiramate is a Topamax generic and can cause hallucinations, very scary. I’ve experienced that. my neuro changed my meds to a keppra/lamactal combo and it stopped the scary visions. I have left temporal damage from a bike accident in 1996. I have complex partial seizures with the odd grand male. I understand exactly what you're talking about...you'redefinitely not alone. Everything that’s going on at the moment is very stressful, never mind having to cope with a thesis at the same time, that is a lot of stress for one person to cope with. We all obviously react to different things in different ways but I can definitely relate to stress as a seizure trigger. The covid 19 thing was a trigger for me as I knew it was going to affect my business etc. “Stress seizures”are more “intense” for me, I also get that vulnerable / paranoid feeling and it really sucks as you know. I’ve had a thousand odd seizures. but enough about me.Here is the thing that I want to share and I know its going to sound silly. There is a bit of psychology involved as well but its pretty simple. We all do things consciously as well as subconsciously all day long. for example, you don’t have to concentrate to or blink or walk etc, your subconscious handles that automatically. Same with breathing, But..if you consciously take a very deep breath, believe it or not your subconscious automatically tells your brain to “calm down” and it only takes a few seconds, like I said, it sounds silly but its a built in feature that we all have. I don’t know if you get a “warning” type feeling, also known as the “Aura” before a seizure and/or if you are still able to process things while you are having a seizure, if that is the case, then that’s the time to take deep breaths. Also, practice taking deep breaths randomly during the day so that it becomes second nature...if you think about it, most of the meds we take shut down electrical activity in our brains so as to “stay calm” more than anything else. Deep breathing does the same. Its not necessarily going to stop a seizure but it definitely helps. Most importantly, you have to eliminate the stress otherwise it becomes a vicious circle. We all handle things like this differently, some will write a book, others will down a bottle of booze etc. Step one for me is “acceptance”, you have to accept it before you can fix it otherwise you just stay stressed about it and it manifests in your subconscious and invariably ends up triggering a seizure. Remember that your mindset is just as important as your diet...and drink enough water. I sound like my mom. All the best Dougdmh1@post.com - if you want a lecture on diet lol