Unusual issue

[Rando21]

A few days ago I woke up at about 4:50AM with night sweats. I had just gotten over a season of night sweats that lasted from July to mid September. I took note of the sweat and lay in bed for a bit before deciding to get up to use the restroom. To get to the restroom I walked about 15 feet. I can remember being in the restroom. Somehow I woke up 20 feet from the restroom and on the opposite end of my bedroom face down against the wall. I think I had been there for 5 minuets or so because when I came to it was early in the 5 o'clock hour. I was very disoriented and weak. I managed to get my phone and go downstairs. I was unable to regain my strength. Kept feeling like I would loose consciousness again and was weak and shaky. I finally broke down and went to the ER. Once at the ER It took nearly 3 hours for me to feel about 90% and I didn’t feel completely well until the next day. Coincidentally, I had just had a 30 day heart monitor looking, labs, and a PET CT. The ER was unable to find anything wrong, including CBC, blood sugar, X-Rays, and tests for heart attack or blood clots. Oddly I have nearly had a repeat days after. Does anyone have any idea what this could be? Keep in mind the night sweat was unusually and just before the incident but of course that doesn't mean it’s related. Also, I do not believe this was related to standing up to fast. I was able to make it 15 feet and remain conscious after that walk. Also, I do not use substances or alcohol so none were involved. I ate the night before and had plenty of water. Anyone have any input? Is it likely not related to CLL? CLL is my only major health issue and I am only 36.

[GMa27]

Unless I missed it...did u mention if ur on W&W or treatment?

[Rando21 in reply to GMa27]

I am W&W CLL.

[GMa27 in reply to Rando21]

Gosh...a mystery for sure. Hopefully does not happen again.

No clue...first thing i thought of was sugar or blood pressure.

[gardening-girl]

Rando21, did they rule out dehydration and/or low blood pressure? I've suddenly passed out several times, the first time as a high schooler in marching band. It is indeed quite frightening. It takes a while to get reoriented to where you are and what happened.

Here's hoping that it doesn't happen to you again.

[Rando21 in reply to gardening-girl]

Yes they ruled those issues out. They did try to label it as micturition syncope but this does not explain several details about the event. For example the night sweats or the duration of the symptoms which lasted over 3 hours.

[LeoPa]

So you do not remember how you got to that position from the restroom? For sure you could not have made 20 feet from the restroom in an unconscious state. You must have been lightheaded and gradually losing conscience not really knowing what you are doing while you were going into that direction near the wall. The only thing I can imagine is hypoxia of some kind. But what was the cause of it?

[AnneHill in reply to LeoPa]

I had that exact thing happen to me. The second time my husband had a hard time getting me off the floor. I was wedged . I came round slightly and then passed out again. Eventually he got me back to bed to sleep it off. The first time I was on the floor beside the bed.

I am epileptic and we blamed it on that despite being stable. My doctor upped the meds.

Without going over old diaries I cant remember the dates. My numbers were rising.

My epilepsy tablets were changed and 3 months later I began Ibrutinib in June 2019.

I also had 2 episodes when I got out of bed and went downstairs. Each time I called to my husband because I was fainting. He grabbed hold but I was collapsing.

The neurology consultant said I could continue driving but if I had more episodes I had to stop. I had a brain scan and nothing was wrong. I nearly said nothing was found!

I havent had the passing out problem since but I am having what I think are fit related. I feel strange and confused and when I try to speak to my husband the words come out as gobbledeguck. Cant talk either.

I have stopped driving to see if alterations of meds have worked.

I had my flu jab last Friday. On Saturday morning I knew I was coming over with a spinning head but didnt black out. I went back to bed until the feeling stopped.

Despite being epileptic I have never had the episodes exactly as you describe before. I remember opening my eyes and passing out again. My legs couldnt move properly.

Is your cll stable? Anne uk

[Rando21 in reply to AnneHill]

I felt confusion as well. The doctors could not find a cause in my situation but they did suggest it might be micturition syncope. Which to my understanding is just a sudden drop in blood pressure that tends to happen just after using the restroom. While I do not think that really describes everything that happened in my case maybe that obscure condition will help you.

To me it sorta did feel like a loss of blood pressure and/or low blood sugar at times.

Do you ever have the sensation you will pass out when you first wake up and reposition your head? For me it feels like the blood rushes out of my head but all I did was move my head while still flat on my back after waking. Generally it will be looking at the ceiling and tilting my chin up so that I am looking at or close to the wall behind my head. I have this from time to time especially when I take a certain over the counter pain med, Advil or naproxen. Which I had been taking for an unrelated issues. Sorta wondered if maybe that contributed. I dunno if that helps you.

My CLL is relatively stable. July-September marked the largest jump in numbers I have seen 23%. But that’s not saying much I have only been diagnosed since July 9. But I can tell from older CBC panels that I likely have had it since 2018 at least but probobly well before. I did notice night sweats during that episode which is why I noticed the night sweats when I woke up in this odd situation.

[AnneHill in reply to Rando21]

I had fits just before I had my first baby. I did have low blood pressure. A very low tablet stopped them but the year before I was diagnosed with cll, I had 3 fits in 10 days. At a later date the neurologist said the fits may have been triggered by the start of the cll.

[Rando21 in reply to AnneHill]

Interesting. I started having vertigo around the time my CLL could have first been diagnosed. It was not diagnosed until 5 years later but I could see from the CBC’s it could have been.

[Rando21 in reply to LeoPa]

It is very strange. One of the first things I did was check my blood oxygen and open windows incase of a gas leak or co2 build up. This was even before I went to the hospital. I also suspected covid. My blood o2 directly after was only slightly low. As I stated I only went to the ER because I was mot recovering in a way that made sense. I was conscious but felt weak, shaky, and sorta like it could happen again if I moved to much.

I thought it was very strange to make it that distance too. Not only did I wake up about 20 feet from the toilet but I made it 15 to the toilet and can remember being in the bathroom. I so have a slight memory of a very quick change though. I can remember thinking confused thought and having blurred vision but very suddenly after I was already in the bathroom. So my memory of waking up and walking to the restroom is fine but then I have this moment were I didn’t really even have time to respond. Then I was across the room on the floor coming to my senses.

It was so strange and I just can’t help but wonder if the night sweatI noticed was related.

[LeoPa in reply to Rando21]

Did they do an MRI scan of the head and neck? Could it be that the blood flow to your brain has been compromised somehow? Something pressing on a carotid artery perhaps? Or a pinched nerve somewhere in the neck messing with proper neurological signaling? I assume that your heart didn't miss a beat.

[Rando21 in reply to LeoPa]

The did not do an MRI. I had one in 2018 though. Also, I’ve had a CT and a PET CT in the past 3 months so maybe they used that? They did order x-rays and mentioned the CT while looking for blood clots.