Avatar universal

LOC, dizzy/confused spells, weak, shaky, low energy, constant tinnitus

Hello, thanks for looking, I need some help in knowing which direction to search for answers. It looks like a heart problem at this point but could be neurological, or an underlying condition.
I am a 35 yr old female, was born 5 weeks premature in Germany in 86/emergency placental abruption, starved in the womb, was 2 lbs 14 oz. In the US since 18 months old, had very physically active job just before LOC, though I am overweight.
Family history is sister had palpitations as a teen, paternal Grandma and Grandpa and Aunt had/have congestive heart failure, paternal Grandma also had AFib. Maternal Grandma has bad varicose veins.
I have no previous history of losing consciousness without a known cause. There is this low-grade congestion that I've had for at least a dozen years. When I talk for an hour straight, run or do cardio, early in the mornings (or other times it seems random) I get these coughing spells where it feels like something needs expressed but it never comes up. I know I'm not sick, so I always chalked it up to undiagnosed asthma or something.

My loss of consciousness was on a Monday 5 am, I had slept only 4 hours but intended to go back to bed after I gave my cat his medicine. I had gotten up from my hot bed, walked 5 steps and got suddenly and moderately dizzy but brushed it off, then went the rest of the way to the fridge (15 steps) to get insulin for my cat. As I was standing in the fridge drawing insulin into the syringe I got a 1 second room-spinning severely dizzy feeling, and fell. I hit my head and hip very hard, and landed inside the fridge facing the door. I lost bladder control, and was out for 4 minutes or so. My husband was up and heard the crash and I woke because he was patting my cheeks. As I was unconscious my eyes and mouth were open, with an empty look in my eyes. I have no recollection during the LOC.  When I came to, I felt like the cold of the fridge was making things worse.

My husband took me to the bathroom to get cleaned up and as he pulled me up I got a growing pressure that starts at the base of my neck, (that I still get with exertion) feels like a balloon of pressure goes up and extends 3-4 inches above my head and stays full and sits there above my head for a minute or two. After LOC I had a multitude of symptoms like nausea, confusion, sweaty, shaky, weak, stumbling, but this head pressure was the scary one. As we went to the bathroom the pressure got more intense. I prayed to God for help and I got the word "salt" come to mind. I could hardly talk because my mouth was extremely dry from hanging open, but I said salt over and over and husband got me some bbq chips. I painstakingly ate the chips but once I did I felt the pressure almost immediately leave.
My husband cleaned me up then took me and laid me on the couch and took bp, sugar and pulse and it was 117/75, 82 sugar, and 73 pulse. I was confused and disoriented, nauseated, had a headache, alternately hot and cold, weak and shaky for 6 hours after LOC.
We went to the ER and had a CT scan, EKG, full metabolic panel, blood sugar, and urine tested and all normal.
2 weeks later I had an ultrasound of my neck arteries, which were also normal.

I have a congenital condition of the eyes called Duane's Syndrome, I can't move my eyes to the outside edge, toward my ears, due to premature birth. I saw the eye Dr in December 2020 and told him what's going on and he said my continuing dizziness and headaches are not from my eye condition or vision.

I had a car accident in 2018 in which I was rear-ended at high speed, so we did an MRI of my cervical neck/spine, and though there was some disk damage there was no nerve compression to cause my issues. They did find a small nodule on what they thought was my thyroid.

I was checked in Women's health, endocrinologist and ENT and all normal. ENT looked for hypercalcemia (nope, normal) and and a test to check if the nodule was in fact on my thyroid or on my parathyroid. It is on my thyroid, so because of the location and size they said it is nothing to worry about.

I went to an epileptologist. He ordered a brain MRI, with and without contrast. MRI showed no physical abnormalities, no indicators of demyelinating disease. They found  "freckles" which indicate a headache, which I did have what I would more accurately call a migraine- sensitive to light and noise.

Then I did epilepsy testing with constant EKG, EEG, with video. In hospital I had a consistently very high bp for me, as high as 155/90, when 115/70 is normal average. I do get white coat syndrome but normally systolic only raises 10 points. I was only allowed move from my bed for 2.5 days to go to the bathroom. Pulse jumped to 140 when up. I got up to walk across the room, and had a very bad confused spell. My brain was fine during that episode, but pulse was jumping around and Dr. said "it's like your heart can't keep up".

They sent me home with info about stroke and said to try and keep my bp lower, which I only seem to be able to do with being sedentary. They tested me for orthostatic intolerance (Not sure if hyper or hypo) and said it was negative, but I don't think they gave it enough time. Since then I have been taking 10-15 second's pause between position changes, laying to sitting, sitting to standing, standing to walking- and have been feeling MUCH better. Have had only a few dizzy spells and ZERO confused spells for almost a month now, that is very significant!

I might mention too, that at the beginning of the 2.5 day hospital stay they took my blood and it came back onto an app color coded for me, with green within healthy range and yellow in abnormal range. All was in normal range except my sodium was right on the cusp of green/yellow on the low side, and my O2 was in the yellow on the low side.

I do get dull, sometimes throbbing headaches although they seem to be typically on the right top side of my head, sometimes over my right eye, sometimes just my whole head hurts. They have greatly reduced since I started moving much more carefully and, less. Also has decreased when I cut sugar out of my diet. I get spots in my vision with light exertion, and I get retinal burns that won't go away- and they all build upon each other so that I can't see hardly at all.  

My symptoms are worse when I 'm sleep deprived, when I'm stressed, with even light exertion or standing for more than 10 minutes, and with prolonged focus of an hour or more. I had a dizzy spell when I stayed up late playing a strategy board game with family that I haven't seen in years.

Symptoms are better with slow positional changes, sitting/being at rest, keeping to meal times, reducing or avoiding stress.

I had a cardiologist appointment, and told them my suspicions about orthostatic intolerance
Nurse asked me to change positions quickly, without my pauses, and my bp shot up to 149/98 and pulse was 131 when all I did was stand up and stand for 4 minutes.

The cardiologist ordered a 2 week at-home heart monitor which I haven't received yet, as well as an echo doppler which is in a week from now, and a referral to an electrophysiologist.

Please let me know if any of this sounds like something you know about. Thanks!
2 Responses
Avatar universal
I forgot to mention that I had just the one known LOC, and everything seems to have started with that event. I sometimes feel like I'm going to pass out, but I haven't again to my knowledge.
Also, I have been tested several times for covid and have a negative every time.
20620809 tn?1504362969
Check in with your doctor but you may be told orthostatic hypotension. This is not uncommon and happens when someone rises too quickly.  Things that can cause it include dehydration.  I have passed out early morning as well before I've eaten or drank anything.  Went to the doctor and they suggested that I keep water by my bed and hydrate more on a regular basis throughout the day. Other things 'can' cause it but given what you've written, I'd guess it was dehydration.  https://my.clevelandclinic.org/health/diseases/9385-low-blood-pressure-orthostatic-hypotension  

I also wonder if you have a bit of anxiety. The sleep issues and stress you describe lead me to wonder about that.  
Also, I'd want to know about blood sugar issues.
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