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.

Hallucinations with temporal lobe epilepsy

Fri, 01/20/2012 - 03:03
I used to hallucinate at night. I would wake.up my family and let them know that there were spiders everywhere. Then I was diagnosed with temporal lobe epilepsy / complex partial seizures. My neurologist said that these hallucinations were seizures. It took several years to find a medication and dose that worked for me, and the hallucinations /complex seizures at night eventually went away. My neurologist increased my dose of Trileptal two months ago to combat a sudden increase in daytime auras, succesfully. However, I am now waking up.at night to hallucinations again. It was been.YEARS since I have done this. Also, the hallucinations have changed from spiders to something else. It is still a visual hallucination and it terrifies me. I have had them four times over the last ten days. I have gone to my psychiatrist, who believes that I am not suffering from some psychosis but that I am having seizures at night again. He spoke with my neurologist, and they agreed to lower the dose of my antidepressant because it may be lowering my seizure threshold. However, my psychiatrist expressed some concern over the fact that I am now evidently having breakthrough seizures. He and my neurologist agreed to try the medication change for now, and see if it helps before taking further action. However, my psychiatrist said it may be time to take a new MRI/EEG, since it has been over two years since my last ones. These tests would of.course be coordinated through my neurologist. Here are my questions: (1) Has anyone else out there had hallucinations at night as a form of seizure? (2) Is there anything NOT scary that can cause a sudden increase in seizure activity? Obviously they would be lookinhlg for brain tumors as a cause but I'd like to think there could be something less frightening. I am not taking illegal.drugs. I don't drink or smoke. I have not changed any medications recently (other than discussed above). I am not more stressed than usual. My general health has improved lately -- I had surgery to.remove (benign) tumors and have been.eating well and lost 20 pounds in 4 months. I fight depression but it has improves drastically over the last six months. I.don't understand why my seizures are getting worse very suddenly ( and I am very frustrated!!

Comments

Re: Hallucinations with temporal lobe epilepsy

Submitted by coopdigidydog on Sat, 2012-01-21 - 07:40
I have been diagnosed with TLE for 2 years now but I'm not sure. They can't find any physical proof so take everything I say with a grain of salt - I'm not a neurologist. I have hallucinations at night and sometimes during the day when I am sick but they might be milder than yours. I don't know. They frighten me too as I get the feeling that causes goosbumps and the hair on the back of my neck to stand up metaphorically speaking. I am alert and aware of my surroundings but I hear car doors, cupboards banging (even though I am in a psych ward at the time), see nice staff as "angels" and unempathetic mean looking people as demonic. I think that's an aura as not only one psychaitrist believes I have TLE and he was let go by the government ( am retired military). I hear claws at night scraping walls and things that deal with hyperreligiosity. I journal constantly and make to do lists to combat my worries and it helps to analyze my own thinking so I don't worry so much at night. I think nighttime is the time for wrapping up the day and planning for the future. This is when your mind worries about the future as some things are impossible to achieve or fix and that causes emotional stress. I think that this emotional stress triggers these hallucinations. I am no neurologist and just got a referral to one - govt let me down as they diagnosed me with TLE but never referred me to a neurologist to make sure. I take trileptal (1200 mg daily), Lamotragin(100mg), and prozac (60 mg). When I was really bad 'sick' in 2003 I was in the psych ward for 3-4 months. I finally asked to be put on prozac as nothing had changed and I was afraid that I'd be locked up for the rest of my life. Twenty-four hours after the first dose of prozac my psychaitrist said I was 100% better and three days later I was out on 2 hours freedom. Maybe the interaction of medication is counteracting or you are getting used to the drugs too much. Talk with your doctors and see if what they say. It's your treatment in the end and you have to make the decision to change drugs if at all or up your meds or lower them. I am just explaining my situation. I hope this helps ease your mind at least that someone has them too.

I just googled hallucinations

Submitted by Kari3115 on Sat, 2017-09-23 - 18:09
I just googled hallucinations and epilepsy and found this post.  I was formerly diagnosed with epilepsy last year.  I continually see spiders as well.  I just woke up from a nap and saw one on the wall.  Same reaction every time.  My heart races, I flip on the light and nothing. They are always on the wall behind me and they have around 1 inch abdomens.  I don't wish this on anyone, but I must say, it's comforting to hear I'm not alone.

Ermagawd. I am so glad that I

Submitted by GamerMom on Fri, 2017-11-10 - 10:45
Ermagawd. I am so glad that I just found this post. I was diagnosed with TLE in 2015. I've had bad reactions to the majority of the meds, and even if they help the large seizures, they don't phase the absence or the partial ones. After this last bout of bad med reactions, I've noticed that I've started seeing things crawling on me, or around the edges of my vision lately. It really freaks me out. I'm also not sleeping good, having nightmares about snakes and bugs and just weird stuff like that. While I hate that other people are dealing with this too, I feel SO much better seeing that I'm not alone with these weird hallucinations.

Sign Up for Emails

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