Reoccurring unexplained loss of consciousness

Posted by sdneb44 @sdneb44, Oct 28, 2019

I am not sure that this is the group to post on but am at a loss and unsure where to start. I apologize up front for the length of this post as well as jumping around.
Two years ago,I was sitting at a baseball stadium outside when I started to feel strange and then had the tunnel darkness start in my peripheral vision. I don't remember anything then until there was a woman standing in front of me talking to me. I couldn't hear her at first, just see her. It was reported that I just slumped over in my chair, my eyes were open and moving, but I was not responding. Once I could hear her, I stood up and tried to leave. I immediately felt weak and nauseous. A wheelchair was brought to where I was and I was taken to the medical office. The medical staff at the field began the questions and I couldn't remember important details such as how old I was, medications I take(I took one for 18 years prior and couldn't remember), etc. Paramedics arrived to assess. I began to vomit and feel shaky and very unsteady. At the field they took my blood sugar, pulse, and blood pressure. Everything was good but my pressure was up a bit. I was taken to an acute care clinic where I was still vomiting and too incoherent for them to see so they sent me to the ER. At the ER they did the stroke test which was difficult for me but I could do it. I really had to think about it. The doctor accused me of faking how difficult it was. I had a CT scan done with everything looking normal. He diagnosed me with an anxiety attack, which the paramedics had diagnosed me with at the park. He instructed me to follow up with my own doctor. I began taking anti-anxiety meds, and 1 month later while sitting at my desk after finishing my lunch, I felt the same feeling right before losing consciousness the first time so looked at my coworker and try to ask for help. The same thing happened, my head was down on my arms, my eyes were open and moving but I was not there. I was taken by ambulance to the ER where I was had an EKG done, blood work, monitoring, and then fitted with a heart monitor for 72 hours. Nothing showed up on the heart monitor. My PA then ordered a series of tests including an MRI, EEG, tilt test, and EMG. I began seeing a neurologist who ordered more tests. All came back fine. I saw a neuropsychologist who ran tests on me as well that came back that I was fine. I had a couple of different episodes after where I felt like I had had a spell but hadn't lost consciousness and my blood pressure went very high. I was put on blood pressure medication. All test results showed that I was healthy. With doctors thinking it was anxiety/stress, I chose to change jobs at the end of that year. I gave up caffeine, carbonated drinks, changed my diet, and began exercising more consistently, saw a therapist to work through childhood trauma, and prioritized myself in my life. Thirteen months after the previous "spell", I was sitting at my desk at the end of the day and I started to feel what I have come to know as an aura again. I tried to talk to my coworker but couldn't say anything, and my head went down on my desk. The paramedics were called but I did not go with them. That spell felt as though I had to fight hard to come out of it and was significantly more scary, for lack of a more medical term. After that, I was taken off of the blood pressure meds and anti-anxiety meds as they seemed to be treating after symptoms rather than the cause of the problem. I saw a cardiologist who referred me to a neurologist specializing in seizures interestingly enough. The cardiologist noted that on one of my MRI scans there was an area that was showing slowed activity. That neurologist reluctantly suggested I begin seizure medication but my regular neurologist overruled and said that there wasn't enough to justify my taking that medication. The next tests that were ordered were two sleep studies, one in my home and one in a facility. The company that does the ones in my home closed and so were not able to administer the test. The one in a facility, tey wanted $1400 up front to run the test and we could not afford to pay so haven't had that test done. I saw an endocrinologist as well, and my thyroid levels were checked and adjusted. I was just cleared last week from seeing the endocrinologist again for another year. My blood pressure was good, heart rate was good. I have lost weight. I completed a half marathon this past spring and was readying myself for another in November. A little over a year since the last one, and I had a fourth spell 4 days ago. Once again, I had been moving around doing my job and came back to my desk to send a quick email and felt the aura. Thinking it might help if I moved again, I stood up and started to walk. Realizing that it wasn't going to help, I told my coworker that I was going to pass out and to help me. I then sat down and my head laid down on my arms. She reported that all color drained from my face and my skin looked yellowish. She thought I had passed away. I had been feeling the best I have felt in years health-wise, mentally, and emotionally when this spell occurred. The following things have happened each time: It feels like picture in picture as I feel it coming on – like I am in the present but there is some sort of activity, sound, movement that is going on at the same time. While in the spell, there is activity, thoughts, dreams, what have you, going on in my head, but i am not in my surroundings. Once I regain consciousness, I am unaware of where I am, confused, struggle to find my words, nauseous, and upset. After the first spell when I couldn't remember things, I feel as though I consciously try to remember things and do somewhat better, but still struggle with important information when being asked. Initially, I can sit upright and answer questions but within a minute or so, I am weak, shaky, and feel very sleepy. I will either vomit or dry heave. I struggle with my words and staying awake. Once I have been settled in and left alone, I sleep hard for 45 minutes or an hour. It takes me a couple of days to fully regain my strength,often sleeping the entire day after an event. I am also in a brain fog for at least 24-36 hours struggling to find my words and understand what people are saying to me. The time immediately after a spell I can remember faces of people, and how I felt about what they were saying but only remember bits of what was said. Still today, I can only remember 3 or 4 things said to me four days ago, but can't remember anything else. In this process, I have had people that were with me at the time write up their recollection of what happened as soon after as possible. Many report seeing the same things. They don't last a long time, 30 seconds to a minute and a half. An addition to this episode that wasn't noted previously is that throughout the day of this most recent spell, I had great difficulty hanging onto things. I kept dropping things even though I had a good hold of them. I am an educated professional and not wanting to take more meds and I hate missing work. I may be grasping at straws in trying to think of any detail that may be important. II am struggling to find a path to answers so I thought that maybe someone on this site could help me. Thank you for reading!

Hi, @sdneb44 – welcome to Mayo Clinic Connect. These spells sound difficult to decipher, which I suppose has been reinforced with some difficulty in arriving at a diagnosis. Losing consciousness for a bit must feel disconcerting.

I'd like to introduce you to @dawn_giacabazi @azza1 @hopeful33250 @georgiey1 @msstoppainnagginme. They may have input on these spells based on their own experiences.

How are you doing emotionally amidst these experiences and trying to pin down a diagnosis?

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I'm disheartened at the thought of more time from work, more money in medical bills to possibly find nothing more out.

Liked by Lisa Lucier, Leonard

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Hello @sdneb44, I'm glad that @lisalucier invited me to this discussion. While I've not had spells just like yours I have certainly had hard-to-diagnose neurological problems that have taken a number of years to arrive at a diagnosis. While we cannot make a diagnosis on Mayo Connect, we can certainly stand with you and support you while you work at getting a diagnosis to this troubling symptom.

Have you seen a neurologist who specializes in seizures?

Liked by Lisa Lucier, Leonard

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@hopeful33250

Hello @sdneb44, I'm glad that @lisalucier invited me to this discussion. While I've not had spells just like yours I have certainly had hard-to-diagnose neurological problems that have taken a number of years to arrive at a diagnosis. While we cannot make a diagnosis on Mayo Connect, we can certainly stand with you and support you while you work at getting a diagnosis to this troubling symptom.

Have you seen a neurologist who specializes in seizures?

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I have. He said due to some slow activity measured on the MRI, he wanted to put me on anti seizure medicine because it could possibly be a seizure and then do a couple of other tests. My regular neurologist overruled that stating there wasn't enough evidence to support that med so I didn't start it.

Liked by Leonard

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@sdneb44
Hi there,
I've had Epilepsy for 52 years so I usually think in that realm. When I hear symptomatology like you describe it certainly sounds like it could be some type of seizure activity.
Are your Auras always the same or nearly the same?
Do you ever have an odd taste, hear voices, see lights or things that aren’t there, smell unusual odor?
The problem with Epilepsy is every test can be negative but you can still have a seizure disorder. Unfortunately, there are some doctors who feel if your tests are normal your not experiencing seizures.
You have described all phases of seizure activity, Aura, Ictal (Actual Seizure) Postictal.
Did the doctor who wanted to put you on meds ever mention possible Focal seizures?
If you Neurologist who overruled the Seizure medication didn't think you were experiencing seizure activity, what was his/her diagnosis or explanation as to what was going on. You might consider going back to that doctor or another Neurologist or ask your Primary Care Physician about being referred to an Epileptologist.
Wishing you well,
Jake

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@sdneb44

I have. He said due to some slow activity measured on the MRI, he wanted to put me on anti seizure medicine because it could possibly be a seizure and then do a couple of other tests. My regular neurologist overruled that stating there wasn't enough evidence to support that med so I didn't start it.

Jump to this post

@sdneb44
Hi,
You mentioned “slow activity measured on the MRI,” Did you mean EEG?
Jake

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@jakedduck1

@sdneb44
Hi there,
I've had Epilepsy for 52 years so I usually think in that realm. When I hear symptomatology like you describe it certainly sounds like it could be some type of seizure activity.
Are your Auras always the same or nearly the same?
Do you ever have an odd taste, hear voices, see lights or things that aren’t there, smell unusual odor?
The problem with Epilepsy is every test can be negative but you can still have a seizure disorder. Unfortunately, there are some doctors who feel if your tests are normal your not experiencing seizures.
You have described all phases of seizure activity, Aura, Ictal (Actual Seizure) Postictal.
Did the doctor who wanted to put you on meds ever mention possible Focal seizures?
If you Neurologist who overruled the Seizure medication didn't think you were experiencing seizure activity, what was his/her diagnosis or explanation as to what was going on. You might consider going back to that doctor or another Neurologist or ask your Primary Care Physician about being referred to an Epileptologist.
Wishing you well,
Jake

Jump to this post

Jake,
Thank you for your response. My auras are nearly the same every time, I am constantly smelling things that no one else smells, burnt toast, or burning things as well as other things. I also had been talking to the step father of a friend and he has epilepsy as well. He said the same thing about the normal test results. The doctor who wanted to put me on seizure medication seemed to not be sold on it being seizures but said it possibly could be. I don't remember him saying anything about focal seizures, but I am only a few days out from a "syncopal episode" is what they are being called, so I am struggling to fully remember still. The neurologist that overruled kept having tests administered on me without any other suggestions. I was supposed to do a sleep study but they wanted $1400 up front even with good insurance and we couldn't afford to do it.

I had two pretty major concussions when in my teens, one I was hospitalized for that the doctors ask about but think it has been a really long time to have effects from it now.

I did mean EEG, thank you for catching that. Thank you for your advice. It has been a frustrating and disheartening journey. I appreciate you sharing this information with me.

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@sdneb44

Jake,
Thank you for your response. My auras are nearly the same every time, I am constantly smelling things that no one else smells, burnt toast, or burning things as well as other things. I also had been talking to the step father of a friend and he has epilepsy as well. He said the same thing about the normal test results. The doctor who wanted to put me on seizure medication seemed to not be sold on it being seizures but said it possibly could be. I don't remember him saying anything about focal seizures, but I am only a few days out from a "syncopal episode" is what they are being called, so I am struggling to fully remember still. The neurologist that overruled kept having tests administered on me without any other suggestions. I was supposed to do a sleep study but they wanted $1400 up front even with good insurance and we couldn't afford to do it.

I had two pretty major concussions when in my teens, one I was hospitalized for that the doctors ask about but think it has been a really long time to have effects from it now.

I did mean EEG, thank you for catching that. Thank you for your advice. It has been a frustrating and disheartening journey. I appreciate you sharing this information with me.

Jump to this post

I can only speak through my son's journey, diagnosis at 17 yrs. They thought it was fainting & concussion related for months. He also has aura's before his seizure. We were lucky to get 2nd opinion at Mayo. A seizure medication has helped him function again in life and decrease fear of unexpected auras. His only happen once every few months. Do you have level 4 neuro clinic for consult?
Jennifer

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@jakedduck1

@sdneb44
Hi,
You mentioned “slow activity measured on the MRI,” Did you mean EEG?
Jake

Jump to this post

Jake,
I don't know .if you can shed light on any of this, but these only started 2 years ago, have only been in the fall months, I've always been sitting down, and always at work or work related functions.

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@jenfossbru

I can only speak through my son's journey, diagnosis at 17 yrs. They thought it was fainting & concussion related for months. He also has aura's before his seizure. We were lucky to get 2nd opinion at Mayo. A seizure medication has helped him function again in life and decrease fear of unexpected auras. His only happen once every few months. Do you have level 4 neuro clinic for consult?
Jennifer

Jump to this post

Previously when we weren't getting answers and doctors were dismissive as if I had passed out taking blood or something, we said if I had another one, we would take all of our test information and go to Mayo. We became so frustrated with time lost at work, high medical bills, and still no answers that we were rethinking going but now I think we really just need to do it. Thank you for your comment. I hope your son continues to do well and is feeling well.

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@sdneb44

Previously when we weren't getting answers and doctors were dismissive as if I had passed out taking blood or something, we said if I had another one, we would take all of our test information and go to Mayo. We became so frustrated with time lost at work, high medical bills, and still no answers that we were rethinking going but now I think we really just need to do it. Thank you for your comment. I hope your son continues to do well and is feeling well.

Jump to this post

@sdneb44
Being the expert i’m not, I'm curious why the doc wanted a sleep study. Normally there aren't near the number of EEG electrodes. I would think an ambulatory EEG for 24-48 hours would be more beneficial and may have better insurance coverage.
When I was a kid a
friend(?) hit me in the head with a bat. I've always wondered if that caused my seizures. They claim symptoms usually show up rather soon after a concussion but they can occasionally show up years later. I don't buy into the brain injury timelines that many doctors do.
The one thing scientists understand about the brain is how little they actually do know about it.
I had episodes of syncope too and the manifestations of syncope was nothing like seizure activity at least in my case.
The Mayo Clinic Epilepsy Center is a level 4 Center and is ranked #1 in the Country.

Epilepsy Centers locations
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/
Here is a webcast done earlier today.
https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/
I hope you will keep us informed. I'm very interested in your outcome. If I was having the symptoms you are, I'd ask the doctor if I had TLE (Temporal Lobe Epilepsy)

Health & Happiness,
Jake

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Thank you for bringing up the ambulatory EEG, yes, they wanted me to have one of those done, but the company doing them closed and the doctor's office was going to get back to me but never did. What I have read and researched about syncope does not sound like what I have been experiencing. Thank you so much! I will keep in touch!

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So I tried work today after being off since the episode. I felt iffy most of the morning. Around 11 I felt really weak and shaky so had them take my blood pressure 139/99 , I waited and tested a bit and the next was 140/102. Even right after the episode the other day, it was 118/82. This happen to anyone else? After each previous one, I have had this happen a few times for a couple of weeks after where my blood pressure spikes and I feel rotten then am fine again.

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@sdneb44

Jake,
I don't know .if you can shed light on any of this, but these only started 2 years ago, have only been in the fall months, I've always been sitting down, and always at work or work related functions.

Jump to this post

@sdneb44
Hi,
@sdneb44
Howdy,
No, you totally stumped me. Some people have seizures very infrequently. As far as the fall months are concerned maybe just a coincidence??
Have you been in an accident, had a serious infection, encephalitis, meningitis, any head trauma, are you over 60, stroke, brain surgery of any kind, diabetes, normal birth?
I don't imagine you use illicit drugs.
Have you had a functional MRI to evaluate your vasculature?
Do or did you have any stress, anxiety or depression issues?
Jake

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I had two concussions as a teen, one requiring hospitalization but nothing recent. I have a family history of strokes on my paternal side. Other than that none of the rest of that stuff. I do not use illicit drugs nor have I ever. I'm not sure on the functional MRI. I've had 2 done and 1 with contrast. I'm a special education teacher so I am exposed to a considerable amount of stress, but over the past two years have made vast improvements in how I handle that stress.

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