Concerns justified about possible epilepsy with simple focal seizures?

Hi, Kyle @nesswell14. Sounds like you have a long history of unusual events happening with your body. Recent events sounds potentially dangerous, so I'd say (as a layperson and fellow patient - not a medical professional) that your concerns are warranted. Wise to go to the ER and consult experts.

I believe that @jenniferhunter @hopeful33250 and @jakedduck1 may have some thoughts on your situation.

In the meantime, if you've not checked out this Mayo Clinic information on seizures, I think this may be helpful https://www.mayoclinic.org/diseases-conditions/seizure/symptoms-causes/syc-20365711.

Are you thinking of following up on the EEG you and your doctor talked about? Have you considered asking to be referred to a specialist?

Hello, Kyle @nesswell14

I am glad that Lisa, @lisalucier, tagged me on her post.

I do agree that it would be good if you would consult with a specialist. These events do have the potential to cause harm to you.

Do you have a referral to a seizure specialist?

@nesswell14 Hello Kyle. First let me say good for you for advocating for yourself. When you have an issue that doesn't fit a textbook case, you have to think outside the box. Also, no one in your family should make fun of you for a medical issue. I have lived with that too, and maybe they think it's harmless to poke fun, but it isn't. You are questioning if you are doing the right thing and if you are justified with your concerns because of this, and yes, absolutely you are doing the right thing to question. Keep track of the progression of everything because those are your clues. Right now your doctors don't have answers. I've passed out a lot in my life too and been made fun of for that. For me it was fear and emotions that caused it, and as a kid, I could not overcome the fears because I didn't have emotional support toward that goal.

I have had some interconnected and complex medical issues. I have the advantage of a biology degree, so I can understand a lot of medical literature, and I ask questions about what I don't understand. I've also learned a lot from my physical therapist as a patient working on physical issues of thoracic outlet syndrome, and a spine problem.

When you stimulate a nerve with an electrical impulse it causes a muscle to twitch, and when the impulses are sped up, it causes a sustained contraction of a muscle at a certain frequency of impulses. It's like the twitches get faster and faster until it become a sustained contraction, and the sustained contraction is caused tetany. Likewise when a nerve is compressed it causes a twitch and can instigate a jerk reflex. Add enough compression and the muscle goes into a spasm of sustained contraction or tetany. The issue you describe of the involuntary jerking of your head and neck with a connection to your arm may be caused by a compression of nerves in these areas, and nerves can be compressed anywhere or multiple times along their path form the spinal cord to the body part they innervate. I have had that scenario with thoracic outlet syndrome that has several compression points where nerves pass under the collar bone and above the rib cage as they travel to my arm. Added to that, I had an old whiplash injury that caused a disc to bulge and the disc eventually ruptured into my spinal cord and bone spurs grew there trying to stabilize my spine. I had all kinds of pains and muscle twitches everywhere in my body from that, and it was resolved by surgery. I still have issues with TOS which does cause the blood circulation in my neck to be cut off as well as the circulation to my arm when I turn my head. That is one of the tests for it and the doctor listens to and feels the pulse diminish with the change of position. For me, TOS also causes muscle spasms in my neck that start independently rotating my C1 & C2 vertebrae which is a problem because that type of problem also rotates the blood supply in the Vertebral Artery and Jugular Vein and can cause a person to have severe vertigo or pass out. I had a few instances of sudden serve vertigo when my C1 & C2 became misaligned and that was happening during the time I was seeking a surgeon for the collapsed disc at C5C6. Since my spine surgery at Mayo a few years ago, it has calmed down, and I no longer have vertigo. I can sleep wrong or overexert myself and cause a neck spasm that starts the rotation, but I've become adept and aware of it, and I use my muscles to realign it correctly. There is a muscle that connects C1 to the shoulder blade, and by sitting on my hand to brace the shoulder blade, I can then contract that muscle and it calls C1 to return to normal alignment just by pushing my head in the right direction against resistance. The muscles are like pulleys that move levers (the bones) and when the muscles are too tight or injured, the bones migrate out of normal alignment. The spaces where the nerves travel around bones, joints, fibrous bands, tendons and ligaments are very small, and it doesn't take a lot to compress a nerve in an already small space and when you add inflammation from injury or disease it gets worse.

You may have a nerve entrapment issue in your neck or shoulder. The muscles on the front of the chest work in opposition to the muscles that attach to the shoulder blade to control arm movement and it all connects to the neck and spine. The things that have been mentioned as testing for heart function and seizures are good to do, but they might not be thinking about a physical issue like compromised circulation to the brain that in turn causes a "seizure like event". I have had an EEG and MRIs of my brain because when I passed out during some painful tests with a neurologist, I jerked my leg, so they did tests looking for seizures. I passed out from lack of oxygen and blood supply to the brain while I was lying down, and like you, it was just briefly, and I would regain consciousness, and a doctor doing a painful test involving needles and electric shocks was the same trigger that had caused me pass out at medical appointments for many years. From these tests, I did learn that I have an AVM (arterial venous malformation) in my brain. It has not caused any problems or symptoms for me.

I would suggest that you also look at possibilities of thoracic outlet syndrome which can cause arm, neck and shoulder problems in addition to circulation and breathing problems. That happens to me when my chest is too tight to expand properly which causes problems with allergies and my asthma and I have trouble getting my chest cleared properly. TOS also causes the neck spasms that rotate my Cervical vertebrae, and that can disrupt blood flow to the brain. You might have a physical problem like that. It's hard to find doctors that understand TOS and can diagnose and treat it and that was a problem for me as I was dismissed by several spine surgeons and I ultimately came to Mayo for the multidisciplinary team approach. They did evaluate the TOS as well as the spine issues and I had surgery from my 6th opinion about my spine at Mayo. There is also "Bow Hunters Syndrome" where the C1 & C2 are rotated and cause impaired circulation. I would suggest looking for a physical therapy evaluation with a PT who is knowledgeable in both spine rehab and myofascial release with the John Barnes methods. MFR stretches the tight fascia that is caused by injuries or poor posture and body mechanics that is holding muscles in a wrong alignment and preventing normal movement. TOS is best evaluated at teaching medical centers that treat it, otherwise you probably will not find doctors who understand it, and there are multiple types of TOS. For me treatment is physical therapy, not surgery which can cause TOS to get worse by creating scar tissue.

Yo mentioned migraine headaches, and when C1 & C2 are rotated, it does cause a muscular headache on the back of the head. That has happened to me. You've also spoken of the left eye deviation, and you should question that. Don't allow that to be glossed over as it may be an early symptom that could develop into something worse. My cousin had a problem caused by an aneuryism at the base of the brain that caused her eye to not function. She was at a doctor's office and had to hold the eye lid open or it would close. This was being caused by the pressure of the aneuryism, and they took her right to the hospital for treatment. If your eye isn't following normal cues, and you are passing out, you really should question if there are issues of impaired circulation or a bulging artery that might be able to cause these issues because of the proximity to a nerve or the brain that control normal eye movement and functions. The optic nerves for vision are on the base of the brain and they cross like an "X" and then go to each eye. There are other nerves (Oculomotor) that control eye movement. Also ask yourself if the problems you have with passing out are positional. Are you moving in a particular way when this happens? I know that I can cause impaired circulation to my arm with a forward down and to the side head position and my hand will go cold form TOS. Also know that cutting off the blood supply to the brain causes a seizure like response, but not the same thing as a seizure that comes from the brain itself. You need to have them determine if the passing out is a real seizure or related to an issue of circulation, and if it is circulation, where is the problem coming from and is it positional? They need to evaluation blood pressure issues with change in body position too.

If you can come to a place like Mayo that has a team approach, I think you will get to an answer and resolution faster if you can see specialists who look at these areas who will collaborate and Mayo does this very efficiently. I am so happy that I came to Mayo as a spine and TOS patient and I looked for a spine surgeon who would help me for 2 years before I came to Mayo, but none would help. It's tough when you have so many overlapping issues and overlapping symptoms that could mean several things and you waste time waiting for tests and appointments, then they add something else and you wait again.

Here are some links to more information. The article about migraines explains the compromise in circulation in the Vertebral artery and Jugular vein. The Training and Rehabilitation articles are written for physical therapists and are very detailed. They are also on facebook, and I saved one of their posts that I put in quotes at the end that talks about these issues. I hope all this helps and you can advocate for answers. Let me know what you find out and how you are doing on your journey. Keep on advocating until you have answers. Remember to ask questions of your doctors based on the facts of your symptoms and test results, and let them make the diagnosis. If you don't get answers, go somewhere else for other opinions.

Be well, Jennifer

Migraine headache and occlusion of Vertebral Artery and Jugular Vein
https://trainingandrehabilitation.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/

Vestibular Impairment (Vertigo)
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

Atlas Axis ( C1 & C2 )
https://trainingandrehabilitation.com/atlas-joint-instability-causes-consequences-solutions/

TOS (Thoracic Outlet Syndrome)
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Orthostatic Hypotension
https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

My Mayo Patient Story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Training and Rehabilitation facebook post about Dizziness
"Dizziness is a common complaint amongst patients with suspected craniocervical junction (CCJ) pathology. There are four main problems contributing to this, in my experience.
1. Obstruction of the internal jugular veins frequently occur at the skull base (Jayaraman 2012). The subsequent venous hypertension results in endolymphatic congestion in the inner ear, and dizziness. Often seen in Meniere's disease.
2. Patients with CCJ dysfunction have suboccipital muscle impairment. The suboccipitals are the main [local] stabilizers of the CCJ along with the longus capitis, and have tremendous spindle cell density (Kulkarni 2001; Liu 2003). They help in maintaining horizontal vision and act as a gyroscope to the head. Weakness results in motion sickness and dizziness.
3. CCJ patients often have thoracic outlet syndrome. TOS causes various degrees of hypersaturation of the carotid and vertebral arteries. The basilar artery supplies the cerebellum and vestibular complex. Excess pressures in these vessels often result in nystagmus and dizziness.
4. The longus capitis muscle is yet another muscle virtually always deteriorated in CCJ pathology. It prevents facetal dysfunction of the CCJ (Larsen 2018). Between the LC and the alar fascia of the cervical spine, transmits the cervical sympathetic chain. These may become entrapped between the LC and AF, resulting in various diffuse autonomic symptoms, amongst which, dizziness.
Determining which problem is most likely to be present requires clinical suspicion, knowledge of the different signs of each pathology as well as several provocative tests."

@nesswell14
I think your concerns are justified. If in fact they are seizures probably only a Neurologist will know for sure.
Your symptoms seem consistent with potential seizure activity. If I were you I’d request a referral to see a Neurologist.
Can you tell me what the VERY FIRST symptom is when you have one of these episodes. Do you always have the same beginning symptom.
I assume none of the following are problems but do you have Diabetes, high blood pressure, taking medication, drinking plenty of fluids, low blood pressure, any known heart problems, have you had an ECG recently, are you depressed or have anxiety, drink alcohol, smoke.
When your in this “Dream like state” does it seem familiar, as though you were there before? I ask because I’m wondering if it could be deja vu, which means already seen. I’ve had Epilepsy for 52 years. I’m curious if your “Dream like state” is actually deja vu. The only deja vu experience I remember is when
I was walking down an alley and saw a new fence. I
knew I saw that fence before but that was impossible. I kept thinking I saw it a year ago but there was a different fence there then.
Jamais vu meaning “never seen”. A feeling or experience that someone recognizes in some way but seems very unfamiliar.
Do either of those describe your “Dream like state?”
Are the episodes your having usually the same or similar? Seizures usually start in the same part of the brain and the seizures usually are the same or similar? Symptoms vary so much since whatever your brain can do under ideal conditions can happen during a seizure.
Fear and hallucinations are common in Focal seizures as is seeing lights. You said “But lately I started to pass out.” Why do you think you started to pass out? Is that something you felt, if so how? Or did someone see you and tell you that you started to pass out. Are people always around when you experience these episodes? Have you ever had a brain CT or MRI? Have you had your EEG yet?
Although EEG’s & scans can be helpful Epilepsy is primarily diagnosed clinically which is why a video of these episodes would be very helpful to the Neurologist. However, just because the EEG and CT or MRI are negative doesn’t rule out an Epilepsy diagnosis. I know people with frequent seizures who have never had abnormal imaging or EEG’s. It also doesn’t automatically mean these episodes are PNES (Psychogenic
Non-Epileptic Seizures.)
Can you explain in more detail about your jerking episodes?
Have you asked you doctor if a sleep study would be beneficial?
Everyone I know who wonders has Focal Impaired seizures.
Have you ever bitten your tongue and or cheek, slept, been tired, aching, or confused after one of these episodes. Has anyone ever said you had an episode/seizure that you had no knowledge of?
I don’t know anything about them but there are Right and Left Eye deviation Seizures.
Best of luck,
Jake

Hi, @nesswell14 - just wanted to check in with you and see if you got any further information or perhaps got another opinion on whether you could have epilepsy with focal seizures? Did you have the EEG?