PSP Association
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Pt. 1 - My 5-23 Hospitalization - Something Dangerous Is Happening To Me & I Don't Think It's The Tremors

Please, please read this thru. I have to back up a little to give some background for this to make some sense. I'm scared. And, I would very, very much appreciate some feedback. Please.

Since a very young child, I've always been a very vivid dreamer to the present. Numerous dreams a night. Very few dreams are nightmares; rather, very sweet adventures. I've been able to figure out a lot of my real life problems thru my dreams. I've never had what is referred to as 'night terrors'; wouldn't know it if I had one. Dreaming has always been my biggest release and something I look forward to every night. In my dreams, all of my senses are present, including those that have dulled with age. I dream in color. I've taught myself to 'jump back into a dream' if I wake up and want to continue it. Some of my dreams go on for hours, or so it seems. I've also taught myself to lucid dream, meaning I realize in a dream I'm just dreaming, so I take risks in my dreams I normally wouldn't because I know no harm will come to me.

When I last saw my Neuro on 4-29, I told him I was a little concerned because my sleep quality/dream quality seemed to be changing for the worse. I would wake up frequently with a pain in the middle of my chest and/or feel like my airway was blocked.

In a previous post I mentioned that since the first of the year I'd switched from being my usual right sided sleeper to sleeping on my back. I would constantly wake up feeling like my tongue was twice the normal size, the sensation I was choking, had backed-up phlem that needed to come-up, and/or I was snoring loudly. During one very sleepless night, I determined the reason I was sleeping on my back was because I cannot tolerate sleeping on my right or my left for very long at all due to severe arthritis in both hips, including the new hip on my right which is only a year old; the surgery didn't 'take'; don't know how to explain it but the hardware is intact and where it should be. Sleeping on my back gave me relief from the pain of side sleeping, but sleeping on my back caused problems with my breathing.

So, he ordered a sleep study which was also done this week on Tuesday evening, the 21st. However, the last few weeks, but particularly the week before the sleep study was very, very, rough. Incorporated into my dreams was the pain of arthritis; this is not unusual; have talked to both my Orthopaedic Doctor and my Nuero about this. My Neuro said when pain is severe enough to incorporate into your dreams, that's a real high degree of pain.

But, even more disturbing, what incorporated into my dreams was PSP. In my dreams, I would fall (like with PSP) actually feel the pain, get up, keep going, fall again and feel excruciating pain. Along with this, in my dreams, I was projectile vomiting. So this happened 4 mornings in a row before I went for the sleep study. I was scared. Feeling that sick, seriously, and in that much pain upon wakening, simply can't be normal. A few mornings I did vomit upon awakening. To be honest, I was afraid I was headed toward a heart attack or a stroke in my sleep, based on the way my body was physically responding.

The sleep study didn't go so well. I felt like I mostly dozed. Every time I felt on the cusp of falling into a deeper sleep, my whole body would 'startle' awake and I'd have to start over. Or, I'd get good and drowsy and my lower extremeties in particular would spasm from the lower legs up to my mid section. I could go on; you get the idea.

The technician told me she would only put the C-PAP mask on me if I did have apnea; in other words, stop breathing often enough or of a long duration. She came in at 2:30 and put it on. Cripes. That mask was a bummer. I had the hardest time breathing in thru my nose with that thing. And the quality of my sleep was poor. I never did fall into that deeper state of sleep in which I would dream of much running, falling, pain, and vomiting. I swear to you, those were very physical responses in my dreams because I would wake up from those dreams feeling exhausted, sore, panting because I was out of breath from running, and a few time, throw-up.

She was very tight-lipped about the results. I did ask her if I had sleep apnea and her response was 'remember I told you I wouldn't put the mask on you if you weren't having problems. No Doctors were on hand but she over emphasized the need to make a follow-up appointment with my Neuro right away. I was so tired from the night before, I slept on and off during Wednesday.

I woke up Thursday morning, the 23rd, after having one of these complex dreams in which I was experiencing several symptoms. I was drenched in sweat and felt sick to my stomach. I do not sweat. This is not normal. I called my Neuro's secretary to tell her to tell the Doc to put some speed on reading the sleep study results because I was positive something dangerous is happening in my sleep. I also told her when I woke up my tremors were present to a degree to a point they hadn't been in months. She told me to go to a specific hospital and get checked in.

So my tremors started @ 9:00 a.m. By 11:00 a.m. they were whole body tremors. The wait in that E.R. was ridiculous. Over 3 hours. My daughter was with me and we were talking about this and that; nothing serious, nor was I feeling anxious. All of a sudden my whole body tremors accelerated into something crazy, like convulsions, not that I've had one before. I was beating my arms on the arm rests of the wheelchair and my feet and legs were rhythmically moving/running to my right. For the last bit of it, at least 20 minutes, I was only semi-conscious. I did not understand what was happening at all. It was now approaching 4:00 p.m. This won't make sense, but I was in no pain whatsoever.

Then I got lucky. The E.R. Doc who saw me was very, very familiar with PSP; his Mother had just passed away from it. So my nurse in the E.R. was equally informed because of working with this physician. Talk about comforting. They asked lots of questions but they were informed questions. I didn't have to reinvent the wheel; how often does that happen?

But what I did hear with frequency from the E.R. Doc was that my tremors were A-typical of PSP. I asked him since PSP is so rare, perhaps a small portion of us have this particular symptom but it goes unreported. Didn't get an answer on that.

They gave me an IV of happy juice to settle my tremors. 7 hours of tremors, non-stop, the last bit quite violent. Totally exhausting. That has never happened before. I've had whole-body tremors that have lasted up to 3 hours and then just stopped, never violent, and I can count on one hand the number of times that's happened since I was diagnosed last summer.

The ER Doc called upstairs where I was being admitted and discussed further testing/monitoring overnight, he told me, and off I went to the floor.

I'll tell you, I'm getting sick of this A-Typical stuff.

I'll also tell you I don't think it's overstated at all to say these last mornings over the last week I feel like I've been hovering between life and death, meaning I wonder, or my gut tells me, I was close to a heart attack or a stroke in my sleep. It was so real, so uncomfortable, and made me so sick; why else would I then, too, wake up feeling the exact same things, even vomiting a few of those mornings? Has to be more to it than 'nightmares' or 'night terrors'. Believe that's what they say when they don't have anything else to say. This will make more sense in PT 2.

2 Replies

God it sounds horrendous for you - i do hope that yyou can get some help soon

love shasha


Me, too. To be extra clear, I've been a vivid dreamer all my life. I'm free in my dreams. I do all kinds of fun stuff and interact with people in a way I cannot during my waking hours.

When these adverse physical symptoms start in my sleep, they creep into a dream I'm already having, and then the dream alters around the physical symptoms. I can feel the pain from the falls, feel the nausea, etc., and wake up suddenly experiencing those physical symptoms. I have a hard time believing that's normal.

It isn't a situation where a dream starts with the physical symptoms being the theme of my dream. Very unusual.

I have had poor sleep for years because of my chronic arthritis in my hips and knees waking me up several times a night. Not complaining. Just stating the facts.

The BEST news is beginning the night I discharged myself from the hospital against medical advice I have been enjoying the last 4 nights of the BEST sleep I've gotten in years. Uninterrupted sleep, no pain, no intense dreams in which I'm feeling that intense pain/nausea that wakes me up. I haven't felt this rested in ages w/o any plausible explanation. Go figure.

I see my Neruo on Thursday to regroup about the hospital stay and go over my sleep study results and hopefully come up with Plans A, B, C, and D:)




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