Speaking of Hallucinations

I’ve read several posts from people who have seizures asking if others have strange tastes in their mouth or experience smelling something that is nowhere to be found before or after they have a seizure. There are so many different elements to having epilepsy. Unfortunately, finding information that relates to each element is nearly impossible.
We are so fortunate to have places to ask questions of others who are dealing with seizures. When my (late) husband, Charley, and I began his seizure journey in 1980 we had nowhere to turn for answers. Nothing explained the many bizarre aspects of seizures that Charley dealt with. One was the taste of iron in Charley’s mouth. Sometimes before – others after – Charley had a series of seizures he said his mouth tasted like he had eaten an iron skillet. The taste of iron was extremely strong and made Charley miserable, as if the seizures he endured were not enough misery.
I believed Charley had a horrid taste in his mouth and suspected due to seizures but I could not find any information. The many neurologists Charley consulted with just shrugged their shoulders when we asked them why Charley had such a strange taste in his mouth. The doctors did not understand how miserable having to endure the taste of metal in his mouth, day after day, made Charley.
I began writing Epilepsy Unveiled when Charley was rolled in to the operating room to have his left temporal lobe removed in 2004. I had no idea that day, as I wrote by hand in a spiral notebook, I would eventually stumble upon the answers to many aspects of Charley’s epilepsy after he had passed away. I wish he would have lived long enough to have had the answer to one aspect that made him so miserable. That answer was hallucinations.
Hallucinations! What a frightening word. The word alone conjures up a different image for every single person. Not one of those images, if explained, would be bright and cheery. The image saying the word “hallucination” brings is dark. That is because most people have heard the word but never experienced the sensation.
All hallucinations are not of creepy monsters. In fact, there are many different types of hallucinations. Many types of hallucination can be brought on by seizures and can occur before, during or after a seizure or series of seizures. If you have seizures don’t let this scare you. There are people who have had seizures for years and never had a hallucination. If you have never had a hallucination that is great. But, what if you do . . . or are? You cannot get medical help through not knowing what is happening with your body, especially when dealing with seizures. You need to specifically know what to look for to identify hallucinations. It is important that you understand and recognize what your seizures are, or could be, creating.
Never once in twenty-six years of being medically treated for epilepsy did any doctor ask Charley if he was hallucinating. Even if they had Charley could have been sitting there with a horrible taste of metal in his mouth and he would have said no, I have never had a hallucination. We did not know what hallucinations were or that seizures can cause them. Epilepsy is very complex and has many components beyond falling and convulsing. Seizures are hard on the brain and cause many, many unexplained problems and one of them is hallucinations.
There are several types of hallucinations. The type of hallucination I commonly see questions about from my friends who have seizures are gustatory hallucinations. They cause a person to taste something that is not present. Charley’s tasting metal in his mouth was a gustatory hallucination caused by his seizures. I discovered this information while doing research for Epilepsy Unveiled. Buried deeply within a scholarly paper that concerned a medical study on a man with severe epilepsy I saw the words “has a metal taste in his mouth after seizures.” The doctor who had done this study had written that the metal taste the man in the study was experiencing was a gustatory hallucination. I became very sad because Charley deserved to know why he tasted metal in his mouth and he never would. Charley has been gone almost twelve years and information about seizures and hallucinations is apparently still beyond finding for many people suffering with seizures.
Another type of hallucination is visual. Seeing something that is not there is a visual hallucination. If you experience visual hallucinations and haven’t spoken to anyone about it please do communicate to someone that you feel your seizures are causing you to have visual hallucinations. There is such a stigma connected to visual hallucinations. You have no reason to be ashamed if your seizures are putting extra people in the room with you or you see something could not possibly be in front of you. Speak up, and speak strongly to your doctor about this.
Auditory hallucinations are the perception of non-existent voices or sounds such as whistling or hissing and many other strange sounds that are not occurring. I started to say the sounds are not real but to the person who is hallucinating the sounds are as real as real can get. Voices speaking within your head are an auditory hallucination. I found in some of Charley’s mental health physicians’ notes where Charley was diagnosed with auditory hallucinations. I know he was hearing voices, though Charley never told me. I’m sure he did not want to stress me any further than I was. What good would sharing the information have done? Neither of us had a clue what auditory hallucinations were much less that they can be caused by seizures. If you are having auditory hallucinations please share that information with someone and tell your doctor. I know that hearing voices can be very distressing. From experience with a bi-polar relative who has shared the experience of hearing voices the longer you listen to these voices the more likely you may be to come to a point of believing, or doing, what they are saying. There is NO SHAME in suffering with auditory hallucinations.
The next hallucination is called an olfactory hallucination. These are hallucinations that make you smell odors that are not present. Isn’t the brain some kind of wonder? How on earth can a person smell a smell that is not there or taste something they have never put in their mouth? Don’t doubt yourself if you have an olfactory hallucination. There are so many smells in this world I think it would be easy to assume the smell was real even though you cannot account for the source.
Another type of hallucination is called tactile which is the sense of being touched when you are not being touched. I have never personally been told by any of my epilepsy friends, or Charley, that they had this type of hallucination. I don’t think this is a common hallucination that seizures can create but I am far from an expert.
A general somatic hallucination is when a person feels that their body has been seriously hurt. Again, I have not communicated with anyone who has epilepsy that has experienced this type of hallucination. That does not mean they do not occur.
Proprioceptive hallucinations are when a person feels they are floating, flying or having an out-of-body experience. Charley told me many times that he felt he was above the room when he had seizures or after they occurred. The graphic artist who designed the cover of Epilepsy Unveiled read those words in Charley’s writing and depicted him floating.
There is no easy way to live with epilepsy. Answers are hard to find and the questions are many. The days that seizures are terrorizing you make it so difficult to think straight or care about answers to anything. Enjoy your good days and try not to be hard on yourself when you do have seizures.
If you are experiencing any hallucinations please talk to your doctor. If your doctor has never heard of seizures causing hallucinations it may be time to find a doctor who specializes in epilepsy. An epileptologist can work with you to reduce or eliminate the hallucinations. Most important, make yourself heard. Don’t allow seizures or the problems they can create to take over your life due to having a doctor who refuses to listen to you.
Please watch the video that I have added to the post. Hank speaks rather quickly. I chose this video because he is not speaking of hallucinations as if they are a doomsday subject. Hallucinations are something that can happen to anyone who has seizures and are very real to the person who is experiencing them. Education is key to understanding and understanding is the road upon which you travel to get help when you need it regardless of what aspect of epilepsy you need that help for.

God Bless!

About Lola Jines-Burritt