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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!
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Avatar universal
Yes I had it right, I'm officially diagnosed with dysautonomia. The electrophysiologist said it is not PoTS but NMH, neurally mediated hypotension. I've seen in research though that those two are not mutually exclusive.
When I had my heart monitor on I tried to recreate the first syncope event, and it worked. I got only 4.5 hours of sleep, and I got up quickly out of my hot bed. Didn't take 5 steps before I felt the need to lie back down. My heart rate went was at 110 (isn't that high? Usually 90 when walking and 70 at rest) and suddenly dropped to 40 bpm. It was a pretty bad episode, but I got to the bed in time to lie down. Even then I barely held on to consciousness. I had severe vertigo and the edges of my vision went dark gray for 5 minutes.

When I went to EP my bp was 102/70 which is quite low for me. My heart is going to jump around now I guess. I'm on treatment of very high fluid and salt, to begin with.
Helpful - 0
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.  
Helpful - 0
Also, I'd want to know about blood sugar issues.
Hi GuitarRox, thanks for the comment. I haven't been told it is orthostatic hypotension, well it would be hypertension because it goes up, from 117/70 at home/rest to as high as 155/98 at the Dr office when I asked them to test me for it. They said everything was normal, which I know is not true. I try to tell them that I have never had that high bp even with white coat. My pulse shoots up more than 30 bpm, as well.

I have regularly checked my blood sugar, and as stated on the morning of the LOC incident that seemed to trigger all of this, my blood sugar was in the low 80's, and I've not ever seen it go over 105. I might add that I have also changed my diet and gone off sugar since March, to help eliminate that as a source of issues.  My husband worked in nursing for 18 years so we have all the testing equipment at home, and know how to use it.

I have been to so many doctors and they all tell me different things, some say it could be congestive heart failure, and with that I should not be drinking too much water, and have low salt diet. But if it's PoTS or something to do with electrolytes, then I should drink tons of water and high salt diet. I
go to an electrophysiologist soon, and I have my suspicions about dysautonomia, particularly POTS and will ask directly about that.

I do try to stay hydrated, but I know I don't always meet that. I do have bottles of water by my bed, and I make it a point to have at very least 3 bottles of water a day. It may be noteworthy to say that last summer just before my LOC I worked in an industrial environment with not only no air conditioning, but around hot motors and I got heat exhaustion twice.

As for anxiety yes I do have a history of that. In the past I had bad issues with insomnia, IBS and migraines and anxiety which were greatly relieved by going gluten free. After GF I also fall asleep and stay asleep much better, but lately it is this constant tinnitus that keeps me up. I have a cycle of 4-5 days of not sleeping well, then sleeping GREAT because I'm so exhausted. I use a sound machine to drown out the constant ringing, but some days it is louder than the highest machine volume setting.
I have my heart monitor on now, and have had the echo doppler which they said was normal, but what it shows me on my app is that my left ventricle and left atrium are out of tolerance. Not by a lot, but as a mechanic with experience in diagnostics (including pumps, just like a heart) myself I can attest that issues that show a small amount out of tolerance can definitely point toward something- especially as in my case, when the tests are taken when not under stress. Stress tests can show those surface readings point toward a deeper issue that wasn't evident before.
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.
Helpful - 0

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