Hallucination-like experiences. Please provide input if you can.

[freefallin]

Hi all,

For the past about 9 years of my life, I have been experiencing progressively worsening neurological symptoms in addition to some other issues like heart palpitations, frequent urination, and a constantly rapid pulse. Some of my neurological symptoms include 24/7 localized pain on this one spot on the back of my head, balance issues (I can't stand still because I begin to stumble, so I have to fidget around), difficulty remembering words, difficulty processing new information (it's hard for me to watch films or read books because I forget what happened earlier in the plot and which character is which, etc), very poor concentration, poor short-term memory, smelling burning smells that no one else can smell (haven't had this in a couple of years, though), biting my tongue when about to fall asleep, and tremors in my hands and tongue, and sensitivity to fluorescent and flashing lights.

The one other symptom that I have mostly kept to myself because it's embarrassing and because I don't want to be stigmatized as crazy is that when I'm really tired or about to fall asleep, I sometimes have these hallucination-like experiences or something. I don't know of a better term to describe them, but they're not hallucinations in the sense that I see animals walking around my room that aren't there or anything like that. Rather, I just kind of start imagining people saying the most random of things. I don't think the people are really there or anything like that. It's very similar to when you're playing out a conversation you had earlier in your head except it's not conversations I've had in the past, and I can't control it. Hard to explain, sorry. This happens either when I'm beyond exhausted but forcing myself to stay awake for whatever reason or when I'm laying in bed with my eyes closed just about to fall asleep. I used to pray before I went to sleep, but I stopped doing it because this would happen and make it impossible to do so.

Sometimes I also will have dream-like experiences where I'll fall asleep, have a really vivid dream for a couple of minutes, and then suddenly jolt awake...I know these aren't actually dreams, though, because they occur within a few minutes of falling asleep, and it is my understanding that actual dreams don't occur until you've been asleep for a while. I know they occur within a few minutes of falling asleep because there have been times where I looked at the time on my computer, saw that it was, say, 10:30 p.m., fell asleep and had a vivid dream about whatever, and then jolted awake and saw that it was only 10:37 pm or so. Sometimes I also jolt awake in the middle of the night with this weird panicky feeling that's difficult to describe...I've noticed that, when this happens, my pupils do not respond to light...it subsides after about a minute or two.

I've read that this can all be related to a seizure disorder, but my neurologist hasn't ordered a sleep study or anything like that to test for seizure activity because he doesn't think there's anything wrong with me. I was going to just tell him that if he didn't test me for seizures, I was going to see someone else, but then my dad informed me that the testing is expensive even after insurance, and I probably can't afford it on my own. He won't help me pay for it because he doesn't think there's anything wrong with me either. Even if he would, though, I'm almost afraid of having the testing done because if it came back negative, then that would give him and my doctors even more reason to accuse me of just being a hypochondriac.

I've been to two GPs, an internist, a neurologist, a cardiologist, a psychologist, and an acupuncturist, and no one with the exception of the acupuncturist will even really listen to me. They all just assume that I'm too young at 23 to have all of the issues I report. The neurologist did test for a brain tumor, but once he looked at my scan and didn't see one, he was just kind of like, "Welp, guess you're healthy then." He said he saw volume shrinkage on the scan but just shrugged it off as insignificant. My train of thought is that my brain didn't just shrink on its own...something is going on that's causing that, and it would explain why I feel so cognitively deficient these days...but he doesn't seem to think there's any reason to look into it further. He did ask if I had a history of drug or alcohol abuse because that's usually what causes that in people, but I have neither; I've never even been drunk a day in my life.

Anyone have any input on what can be going on? I'm really scared, and no one will listen to me. Thank you :)

[Paderla Anitha, DNB]

Hello and hope you are doing well.

Sorry for the late reply. Your problems with memory and altered perception of smell could sometime be due to temporal lobe seizures, only an EEG (electroencephalogram) can help confirm this. Your sleep symptoms could be Hypnagogic hallucinations, which are hallucinations which occur between sleep and awakening. This is the symptom of a sleep disorder called Narcolepsy. This sleep disorder is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. Discuss these options with your consulting doctor, who may schedule you for a polysomnogram (sleep test) and if needed an EEG, to rule out sleep disorders and initiate appropriate therapy.

Hope this helped and do keep us posted.

[freefallin]

Anyone?