I’m a 24 yr old female. For the past 12 yrs. I have had these hallucinations at night while sleeping. They range from a strange figure standing in my room to things falling on me. They are very real and scary to me. I literally run through my house screaming during these. I average about 4 a week sometimes more sometimes less. I suffer from extreme day time sleepiness. I never put two and two together and thought that the hallucinations could be causing me to be so tired. I watched a show on narcolepsy and saw some “similar” characteristics for narcolepsy.
This past December I finally went to a sleep speacialist. I had 2 studies done. The 1st was the standard study. The 2nd was for seizures follwed by a mslt. I had a hallucination episode during both studies. The doc said I was in stage 4 sleep right before it, wide awake for it, then I went right back to satge 4 sleep. No seizures were detected. On the mslt, I didn’t fall asleep in the aloted time for narcolepsy. He termed it idiopathic hypersomnia with hypagognic hallucinations. I’ve been taking trazadone 20mg at bedtime and 1st was on provigill 200 mg twice a day then switched to adderall, which I’m taking 20mg 3 times a day. The trazadone is not working and I am still having these episodes almost nightly, so my doc sent me to a sleep specialist.
I just got my MRI results back. Here’s what it reads: Evaluation of the brain demonstrates a single subcortical T2 hyperintensity in the left mid temporal region. Uncertain significance, may be a focus of gliosis. I’ve not had any head injury or trauma in the past. I have no repressed traumatic experiences and I’m stressed out.
I know there is no specific test that can pin point narcolepsy and the doc said I could have narco even if the mslt does’nt show it. Does my MRI results hold any connection to the hallucinations? No family hx that I know of.
No matter how much I research, I cannot find much info on these hallucinations. There has been times when I have had my car keys in my hands getting ready to go somewhere, I’ve started to go out my front door to look for someone in my yard… I could write a very long book on all of these. During them I have full knowledge of what’s going on. I’ve never had one where I wasn’t scared or felt threatened. It’s getting old and I would like to know what’s causing this. If you have any insight or knowledge that could be helpful, I would greatly appreciate it.
Doctor Joshua’s Answer
Based on your description, a few of things come to mind that might be considered. Please bear in mind that first of all I am not a neurologist, and in all likelihood the specialists you have seen are much more knowledgeable in these matters- also I have very limited knowledge about your history and do not have the benefit of a physical examination and have not seen your MRIs, etc, so I can only offer some talking points.
1. Epilepsy
What you describe could, as far as I know, be complex partial seizures, which are often derived from a small area in the temporal lobe. The temporal lobe lesion found in the MRI could be the focus of these seizures, and if they cannot be treated medically, neurosurgical treatment may be needed. Full epilepsy workup is of course needed. A negative EEG does not rule out complex partial seizures. Please talk to your neurologist about this possibility. If a temporal lesion is deemed the cause of seizures, neurosurgery in good hands has a very high success rate.
2. Narcolepsy
As you have correctly noted, many of your symptoms are similar to those found in narcolepsy. This is not a straightforward diagnosis, and could be difficult to differentiate from complex partial seizures.
3. Sleep paralysis / parasomnia
Please see also Seizures - Sleep Paralysis
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