My name is Mary. I’m a 77 year old woman who has been living with MS for 22 years. I currently reside in a long term care facility. Prior to this I was retired and living in a condo. Before that I was employed with a company for 28 years. In late November, 2014, I was sitting in front my computer when I felt a tickling in my left ear. I reached in with my finger to find there were mini balloons in my ear that I could touch. There was also a tape with a small wire on it that was coming out of each of my ears. I asked my nurses and nursing assistants if they could see what I was feeling and the answer was always no. Through my own curiosity, I soon discovered that I could move these things around under my skin with my fingers.
I made an appointment with my neurologist whom I was seeing for my multiple sclerosis. At that meeting she suggested that hallucinations can be a side effect of multiple sclerosis. She then recommended the drug Seroquel.
At this same time I had been meeting with a psychologist on a monthly basis. She recommended that we meet with my nurse practitioner. At this meeting we determined that what I was experiencing was ‘Tactile Hallucinations’. I had previously experienced visual hallucinations when I was on morphine in the hospital right after surgery in 2007. They lasted only a day.
My medical staff started to review my medications and their side effects to see what steps could be taken to help eliminate the hallucinations. At the same time I was reading everything I could get my hands to try to find out what was happening to me. I was surprised to learn that tactile hallucinations occur more commonly with persons who have schizophrenia, Alzheimer’s disease, are bipolar or are using drugs. They took me off some medications and reduced the ‘Baclofen’ I was taking for my MS by fifty percent. This over time showed no improvement.
The best definition I could find of Hallucinations is in an extensive research paper written by Patricia Boksa, PhD at the Douglas Mental Health University in Canada: “Tactile Hallucinations are perceptions of the absence of the external stimulus and are accompanied by a compelling sense of their reality. They are a diagnostic feature of schizophrenia, occurring in an estimated 60% - 70% of people with this disorder, with auditory hallucinations being the most common. However, hallucinations are not only associated with illness but can also occur in healthy individuals.”
Thank you for that last statement, for I consider myself to have a healthy mind. I have read that some people actually feel bugs or spiders crawling beneath their skin. I can’t imagine how awful that must feel. Then I’m grateful that my hallucinations are friendlier. They don’t move on their own but I can move them with my fingers.
As the weeks and months went by, a myriad of objects were added to my hallucinations. Most of the objects made their entrance into my body through my eyes nose, mouth and ears. The exception was a cloth like cone shape items that emerged through holes in the top of my head. Do you know what a hook and eye looks like? The eye is a U shape with a circle on each end to put the thread through which anchors to fabric. These tiny objects came in hundreds and were all over my body. Then the fish came. Some an inch and others two inches long. These probably irritated me more than any of the rest. I would often feel them lined up in rows on the inside of my mouth when I woke up in the morning. I had to eat while they were there. There were also flexible disks, the size and shape of contact lenses, that would stack together and suction cups that would cover large areas of my face and neck. Then the sticks came, about four inches in length. At first the objects were confined to my head and neck eventuallly moved to my trunk area. These items, along with others, would come and go as they pleased.
My psychologist was going to meet with a group of around thirty of her colleagues and asked my permission to discuss my case. This took place and nothing substantial came of it, although her colleagues were fascinated.
In late April, 2015 my medical staff started me on 12.5mg of Seroquel. This was slowly increased to 150mg over weeks. The only change I noticed was an increase in items which appeared only on my buttocks. This might or might not have been related to the medication. As the dosage increased so did the items. Even though I know these objects are not real they often cause me much pain that I sit on for hours. The hallucinations I sit on include a two inch wide beIt, wires with barbs on them, fish net with sharp items in it and quarter inch plastic like tape. These things are often piled on top of each other. After these items appeared, my care team decided to switch my medication over to Haldol and decrease the Seroquel. After taking the Haldol which started at .5mg and increased to 1.5mg I started noticing a weakness in my arms and legs and also difficulty in chewing.
In the beginning I openly shared my hallucinations with friends and family. I even often joked about what had taken over my body. Some of my nurses asked if I’m having hallucinations or even suggested explanations. I always responded by telling them that the hallucinations are constant. People who question the hallucinations could be doubters or just be having difficulty comprehending. I was looking for empathy but rarely received it. This left me with the feeling of emptiness and even alienation.
The purpose of writing this article and hopefully getting it published somehow somewhere is to find other people who may have experienced something like what I’m going through. For now I’m being held captive in my body and am looking for a way out. Perhaps I could find a neuroscientist who could measure my brain activity. Or I might try to conquer this by saying “OK brain, let’s make a deal. Just kidding of course!
The hallucinations are another journey in my life. They are like a cancer that I’ve beaten once before. I see this as a temporary disturbance. I’m not going to be complacent and just ride it out. I have another part of my life to attend to which brings me peace, contentment and fulfillment.
Patricia Boksa, PhD, Douglas Mental health University, Department of Psychiatry, McGill University, Montreal, Que. Published in “The Journal of Psychiatry and Neuroscience, 2009 Jul, 34(4):280-282
Hello Mary, Thank you for sharing your journey. Like everything else about ms, it stinks, too.
I am glad you added that normal people get it too, lol. Since you sit a lot, I am not surprised that you have sensations in your buttocks. Have you tried relaxation exercises, tensing and relaxing the muscles?
The bugs are with me, maybe if I did not live on a farm it might be fish. lol Since we have ticks in our neighborhood I always have to check, because sometimes it is a tick. I would often slap my legs ASSuming it was a bug, but learned that it hurt when doing it so often,. Also during some seasons the spiders and ladybugs come indoors, for real, so I have become paranoid, about the bugs. Even got a soap that is suppose to repel bugs, so now i just slap my imagination. When I think they are on my scalp I think about shaving my head.
I try to remind myself that it is just a short in the wiring, that the nerves are screwed up, and it IS my imagination, lately it is, things on my face. I feel like a kid, I know better to not keep touching my face, and I keep washing my hands, but I feel like i have those ant caravans on my face.
Can you wiggle your ears? maria
For years I heard music when none was playing. i would wake in the middle of the night because I heard music, like a radio was on, not distinct enough to enjoy it.
Thank you so much for sharing your story with us. It sounds like you're doing everything you can to get some answers and I sure hope that you receive them soon.