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When I Yawn Or Stretch
A MyEpilepsyTeam Member asked a question 💭

when I yawn or stretch my hands and arms and feet will go all spastic like and I noticed my left eye always closes real tight aswell just my left eye it's quite confusing and I don't know if anyone else experiences this also, I'm concerned especially with my left eye as when it closes that tight it feels my eye ball is sinking in I do have a problem with my eye shape its not normally round like most people's eyes my eyes are oval I have mild Astigmatism and Farsightedness (hyperopia)
I just… read more

posted April 13, 2022
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A MyEpilepsyTeam Member

Your neurologist has not mentioned which type of seizures that he is hoping to learn more about? Either way, an actual EEG recording of changes associated with epileptic seizures is huge. As we have been discussing, it is too bad that too many neurologists do not recognize that the EEG can sometimes not show the change of an epileptic seizure even when it is happening. Hopefully, in the near future, published research will come out detailing the increased chance that the EEG can miss picking up the change when an epileptic seizure is happening, thus hopefully convincing many more neurologists (especially when they have video and audio recordings to refer to besides the EEG OR it has already been proven that the patient has epilepsy) to not be focused on what the EEG is not showing. You would think that especially the experienced neurologists would understand these facts already and use their skills and knowledge to diagnose appropriately even when an EEG is not providing the data. Most neurologists will not believe that a patient has grand mal seizures unless they have them right in front of them (and even some of them will not believe it if an EEG is not hooked up to the patient and displaying the proper readings for a grand mal seizure). I have had grand mal seizures in the past (not as often as the generalized full seizures), including one in front of a co-worker at Massachusetts General Hospital who is a RN -- thus trained to recognize seizures, especially the grand mal seizures. This was back in June 2003+ when my epileptic seizures were out of control because of a pharmacist's error and then errors by my first neurologist (suffering from Alzheimer's). Unfortunately, too many doctors do not respect the input of RNs, NPs, and experience technicians running an EEG, MEG, PET scan, brain MRI, etc. They all have training and knowledge that makes them qualified to know what they are seeing.

posted April 15, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I had several in ICU and it was not until 2 years later that I had a stand-alone one that took me back to the hospital. If it were not for the same healthcare team it's likely I would still not have a diagnosis (the eeg did not pick up abnormal activity). My family has witnessed plenty, and have had an ambulance take me in after seizures, I seriously thought everyone else was crazy. Yet another reason the cameras are everywhere, is so I can witness what I do not see.

posted April 16, 2022
A MyEpilepsyTeam Member

Depending upon what type of seizure you were having when the EEG recorded it, then it can be value. And 20 minutes of recording with actual activity demonstrated on the EEG is sufficient to learn a lot, but the key is the type of seizure that it is and whether it is the important one for what your neurologist is looking for. And, yes, the technician should have a record of your lighting trigger and thus should have taken you seriously before the effect was demonstrated when you couldn't get up up and walk and struggled to move the legs. However, the fact that it was recorded might make the technician pay attention the next time. Just like the doctors, it is key to have a good tech doing the EEG, EKG, MEG, brain MRI, PET Scan, etc. Back at the end of July 2021 when I had my EEG after my first appointment with my new neurologist, he was certain that the EEG Long Term Monitoring would be of no use because he was sure of the origin point of all of my epileptic seizures. However, even though the tech recorded on the latter half of my seizure (I had it after she had wired me all up with all of the probes, but she had not yet flipped the switch to record), the tech was paying attention to all of the details of my seizure that she was witnessing. And, like my sister later explained to me, while I was in the other room cleaning up after the EEG probes were removed, the tech was on the phone with my neurologist providing the details of what she saw and the display of the EEG recording. And in a few days when I got a message from my neurologist, he had changed his mind. It was now important that I go to EEG Long Term Monitoring. I have a feeling that what the partially recorded EEG indicated is that the complex partial seizure that I had was showing an origin point in my right temporal lobe. His assumption was that all of my seizures were originating in the left temporal lobe. When I was in EEG Long Term Monitoring, the results of the partial seizures (no full seizures occurred or at least were recorded as having happened because the EEG noted no change at the time of my hallucinations) verified that most of my partial seizures have the origin point in my left temporal lobe, but there was also one or two in my right temporal lobe. This meant that brain surgery was not an option. Which is fine because unless that lesion that was spotted on my brain MRIs in August and December was malignant or the MEG in January showed more information, I have no intention of letting them do any brain surgery --even to put in a VNS or RNS--because I have already had enough brain damage.

posted April 14, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Another problem (something that it is almost as if some of these neurologist forgot what they were taught about epilepsy) is that it has been proven that epilepsy mutates and that the tremors can come for people who are no medications at all and they can increase in intensity at various times (do to an increase in negative emotions, anxiety and other factors -- which is the case with me) but then return to the normal level of tremors.

The problem for the doctors and scientist is that even with all that is now known about the human brain, it is just a minor part of the knowledge of all that the human brain can do. Thus, there are many times where the medical record of an event has the indication "unknown reason" or something similar. I know because this is what it reads in explanation to how I survived in June 2003 when I should not have been able to, how I survived later in 2003 when I should have not been able to, and especially when I went 6+ months with untested and thus untreated severe sleep apnea (such that if I do not have my CPAP mask on and machine turned on, then I do not complete a single sleep cycle). My second neurologist explained that when you have severe sleep apnea such that you never complete a single sleep cycle, then you would have the same effect if you simply were not asleep during that time. Thus, I went 6+ months without getting any quality sleep. If this was monitored for the entire 6+ months, then I would have the world record for the longest time surviving without sleep. I sustained major brain damage to the memory section in my brain during the period of 2003 - 2005, but I should have died. The record for the longest period without sleep is 11 days: https://www.scientificamerican.com/article/how-.... Thus, I should have been killed by the brain damage within a month tops.

posted April 14, 2022
A MyEpilepsyTeam Member

@ Michael I believe it could be neurological a while back I showed a video to my GP about how my seizures are changing and the spastic like movements quite similar to the ones I get when I yawn or stretch he told me there's something going on in your brain that's causing this I'm also starting to suspect it could be due to the DIE endometriosis that's in my bowels my recent scan shows its gone deeper into the bowel muscle I've read the digestive system is like your second brain if something is a miss there it can affect your brain I'm clutching at straws for some kind of answer or reason behind my body's crazy behavior.

posted April 14, 2022

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