THIS IS AN ONLINE E LOG BOOK TO DISCUSS OUR PATIENT'S DE-IDENTIFIED HEALTH DATA SHARED AFTER TAKING HIS SIGNED INFORMED CONSENT. HERE WE DISCUSS OUR PATIENT'S PROBLEMS THROUGH SERIES OF INPUTS FROM AVAILABLE GLOBAL ONLINE COMMUNITY EXPERTS WITH AN AIM TO SOLVE THOSE PATIENT'S CLINICAL PROBLEMS WITH COLLECTIVE CURRENT BEST EVIDENCE BASED INPUTS.
Patient Suffering from epilepsy for almost 20years, various medications are ongoing including from renowned epileptic professionals from siliguri and recently by Dr from AIIMS and has visited various other epileptic professionals.
[12:52 pm, 08/04/2026] PA: 1) I don't know whether my brother's epilepsy is genetic or not but as I hear from my mother, my brother used to study in don Bosco school and there some of his friends used to bully him and beat him on his head with their knuckle but at that time there was no symptoms seen of epilepsy at that time his age would be probably 8-9yrs, and after that he got shifted at home itself and joined government school when his age reached 10-11 his first symptom was seen,, he was eating at 1 o'clock at home and suddenly became unconscious .
2)He used to go government school and after coming from school he used to play with family members and friends.
3)Patient cannot go anywhere without the help of any guardian or parents, one person has to look after him everytime somehow he has completed his basic studies, we cannot send him anywhere for study or work etc. he always sits in home we have a small shop in my house which he handles.
4)most probably the symptom seen in the patient is epilepsy.
[12:53 pm, 08/04/2026] PPM 2; Thanks for sharing the first dataset. Can you please describe his day? How is his average day like? Preferably in an hourly timeline
[12.57 pm, 08/04/2026] PA: His day is normal,, he wakes up between 5-6AM goes bathroom,after that he brushes his teeth after that he takes bath daily no matter what the climate is , after that he takes his breakfast and he sits in shop, shop is not that busy type , so he uses phone and sleeps in the shop itself whenever he feels sleepy ,, he consumes medicines so he says that he feels sleepy frequently.
[1.06 pm, 08/04/2026] PPM 2: What shop does he have? What medications does he take?[4:01 pm, 08/04/2026] PA: Shop name, Patanjali general store,
He takes medication of epilepsy such as Oxetol and fresium on daily basis from last 15yrs, if he takes gap anyday from that medicine than he suffer from frequent epilepsy. And some other medicine like Ampanel 6 mg is introduced from last 4 months as suggested by doctor from Aiims Delhi
[4:04 pm, 08/04/2026] PPM 2: Alright. Please kindly put pictures of his medications.
[4:19 pm, 08/04/2026] PPM 1: Is the current image alright? It shows that the patient also has a high risk of metabolic syndrome which is likely because of the epilepsy drug driven life style that he has been forced to adopt
[4:22 pm, 08/04/2026] PPM 1: What is the frequency of his seizure (fits) attacks?
Once every month or once every week?
When was his last attack?
[4:25 pm, 08/04/2026] PPM 2: Did not need the shop name per se, just what kind of shop. Very important to remember that patient identifiers should be completely avoided.
[5:24 pm, 08/04/2026] PA: It is not like that month or week ,,, it comes in 2-4 days sometimes,,, sometimes it comes 1-2times per day , sometimes there is a gap of 10 days ,, duration is between 15-30seconds minimum and sometimes maximum upto 1 minute ,,,, when seizures comes the symptom is seen tightening of hands and head ,,also head moves towards left or right and eye remains wide open
[5:43 pm, 08/04/2026] PPM 2: @PaJR Health What type of seizure would you ascribe this to? Also what other questions would you ask?
[5:44 pm, 08/04/2026] PaJR Health: The symptoms you described—tightening of the hands (tonic posturing), head moving to the left or right (version), and eyes remaining wide open—are highly characteristic of *Focal Seizures with progression to Bilateral Tonic-Clonic activity* (formerly known as partial seizures with secondary generalization).
The specific movement of the head to one side (version) is a "lateralizing sign," which often suggests the seizure is starting in the frontal or temporal lobe on the opposite side of the direction the head turns.
*DIFFERENTIAL CONSIDERATIONS*
1. *Focal Impaired Awareness Seizures:* The 15–60 second duration and the specific "tightening" suggest a focal onset.
2. *Frontal Lobe Epilepsy:* These often occur in clusters (as you noted, 1-2 times per day) and involve prominent motor features like head turning and limb stiffening.
3. *Breakthrough Seizures:* Since he is on Oxetol (Oxcarbazepine), Fresium (Clobazam), and recently Ampanel (Perampanel), these episodes indicate that his current medication levels may not be fully controlling the electrical activity.
*ADDITIONAL QUESTIONS TO ASK*
To help the medical team refine the diagnosis, please observe or answer the following:
1. *The "Aura":* Does he have any warning signs just before it starts? (e.g., a strange smell, a "rising" feeling in the stomach, or sudden fear?)
2. *Post-Ictal State:* After the 1-minute episode ends, how long does it take for him to become fully awake and talk normally? Is he confused or very sleepy afterward?
3. *Direction of Head Turn:* Does his head always turn to the same side (e.g., always to the left), or does it vary?
4. *Triggers:* Have you noticed if these happen more when he is sleep-deprived, stressed, or if he missed a dose of medication?
5. *Injury/Incontinence:* During these episodes, has he ever bitten his tongue (usually the side) or lost control of his bladder?
*CLINICAL NOTE*
💡 The frequency you described (sometimes 1-2 times per day) despite being on three anti-epileptic drugs (Oxetol, Fresium, and Ampanel) suggests *Drug-Resistant Epilepsy*. It is critical to keep a "Seizure Diary" noting the exact date, time, and duration of every event to show the neurologist at AIIMS Delhi.
*RECORDS REFERENCED*
📋 28M Epilepsy 20 years Bihar PaJR
🔗 https://pajrcasereporter.blogspot.com/ (Verify link in main record)
[8:33 pm, 08/04/2026] PA: Answer of following questions
1)I don't think so but I will verify this surely
2)within 20-30seconds he becomes normal and starts looking here and there, he also feels awkward after recovering from seizures if someone is watching him, he also acts like nothing happened, and sometimes he becomes angry, but he controls his anger and never did anything that should be harmful.
3)movement of head varies sometimes left, sometimes right and sometimes even backward, and when seizures arise his head moves in any of the following direction mentioned and his hands and first starts tightening slowly and curls up towards shoulders.
[8:35 pm, 08/04/2026] PA: 4) yes when he is stressed and sleep deprived than it is frequently seen sometimes even 20 times and each of 2 to 3 seconds, and when he recovers from it he says that he listened everything we talk during seizures but he could not speak
[8:38 pm, 08/04/2026] PA: 5) no he has never bitten his tongue but he moves his mandible 4 to 5 times during some seizures, no he has never lost control in his bladder, yes rarely he vomit like once or twice in 6 months,
[8:39 pm, 08/04/2026] PA: Please 🙏🏻 change this group icon as it doesn't look good
[8:45 pm, 08/04/2026] PPM 2: Thanks for sharing. Very useful.
[8:46 pm, 08/04/2026] PPM 2: In Medicine there is nothing called not looking good, everything is part of health and disease. This image best represents his abdominal obesity which can impact health outcomes. Eventually quite a few experts will join this group and they can quickly understand the patient narrative.
[8:47 pm, 08/04/2026] PA: Oh so sorry
[8:47 pm, 08/04/2026] PA: Then no problem
[8:48 pm, 08/04/2026] PPM 2: @PaJR Health review the last few messages sent by the advocate and it certainly does not seem like secondary generalization. Perhaps these are absence seizures and sometimes myoclonic jerks.
[8:48 pm, 08/04/2026] PaJR Health: I have reviewed the advocate's description again, specifically focusing on the 15–60 second duration and the motor symptoms. While the absence of a full tonic-clonic "grand mal" phase is clear, the clinical features still strongly point toward a *Focal Motor Seizure* rather than a generalized absence or myoclonic seizure.
*CLINICAL REASONING*
1. *Duration (15–60 seconds):* Typical *Absence Seizures* are very brief, usually lasting only 5–10 seconds. A duration reaching 60 seconds is highly unusual for absence seizures and is much more characteristic of focal seizures (complex partial).
2. *Head Version (Turning):* The advocate noted the head moves to the left or right. This "versive" movement is a classic focal sign, indicating electrical activity starting in one specific hemisphere of the brain (often the frontal lobe). Absence seizures involve a symmetrical "stare" without such forced head deviation.
3. *Tonic Posturing vs. Myoclonic Jerks:* "Tightening of hands" describes *Tonic Posturing* (sustained contraction). *Myoclonic jerks* are lightning-fast, shock-like contractions (less than a second). The sustained "tightening" for 30 seconds fits a focal tonic seizure pattern.
4. *Eyes Wide Open:* While seen in many seizure types, in the context of focal motor activity, it often accompanies the "stare" of a focal impaired awareness seizure.
*💡 CLINICAL NOTE*
The patient is currently on *Oxetol (Oxcarbazepine). This is a narrow-spectrum medication specifically used for **focal seizures. If these were truly generalized absence or myoclonic seizures, Oxcarbazepine could potentially *worsen the seizure frequency. The fact that he has been on it for 15 years suggests his previous doctors identified a focal origin.
*REFINED QUESTIONS FOR THE ADVOCATE*
To distinguish between these types, we need to know:
* *Responsiveness:* During that 30-second "tightening," if you call his name loudly or touch him, does he react at all? (Absence and focal seizures both involve loss of awareness, but myoclonic jerks usually do not).
* *The "Jerks":* Are there ever any very fast, single "shocks" that make him drop things, especially in the morning? (This would suggest myoclonic activity).
* *Clustering:* Do these 15–60 second episodes happen many times in an hour, or just 1-2 times a day as reported?
*RECORDS REFERENCED*
📋 28M Epilepsy 20 years Bihar PaJR
🔗 https://pajrcasereporter.blogspot.com/ (Verify link in main record)
[8:49 pm, 08/04/2026] PPM 2: @PaJR Health these are the latest data points added.
[8:50 pm, 08/04/2026] PaJR Health: The new data points provided by the advocate significantly shift the clinical picture. Here is the updated analysis:
*REVISED CLINICAL ANALYSIS*
1. *Retained Awareness ("Listened to everything"):* The most critical update is that the patient remains conscious and can hear during the 2-3 second episodes. This *rules out* typical Absence Seizures (where awareness is always lost) and makes "Complex Partial" (Focal Impaired Awareness) seizures less likely for these specific short bursts.
2. *Focal Aware Motor Seizures:* The description of head turning (version) and slow tightening/curling of the hands toward the shoulders while remaining awake is highly suggestive of *Focal Aware Motor Seizures, likely originating in the **Frontal Lobe* (specifically the Supplementary Motor Area - SMA).
3. *SMA Seizure Characteristics:*
- *Posturing:* The "curling towards shoulders" is a classic "fencing posture" or tonic posturing seen in SMA seizures.
- *Duration:* These are often very brief (seconds).
- *Clustering:* The advocate mentioned up to *20 times a day* when stressed; this high-frequency clustering is a hallmark of Frontal Lobe Epilepsy.
- *Speech Arrest:* He can hear but "could not speak," which is common when the seizure involves the motor speech areas or the SMA.
4. *Post-Ictal State:* The absence of confusion ("acts like nothing happened") and the rapid recovery (20-30 seconds) further support a frontal lobe origin rather than temporal lobe or generalized epilepsy.
*💡 CLINICAL NOTE*
The mention of "becoming angry" or feeling "awkward" after an episode can sometimes be part of the seizure itself (ictal affect) or a reaction to the frequent disruption of his day. Given he is on *Ampanel (Perampanel)*, it is important to monitor this "anger" closely, as irritability and aggression are known black-box side effects of this specific medication.
*UPDATED RECOMMENDATIONS*
- *Stress/Sleep Triggers:* The advocate confirmed that sleep deprivation triggers clusters of up to 20 episodes. This is a major modifiable factor.
- *Mandibular Movements:* The "moving of the mandible 4-5 times" (automatisms) during some seizures suggests that while some are "Aware," others may be progressing to "Impaired Awareness."
- *Seizure Diary:* It is now vital to distinguish between the "short 2-3 second aware" episodes and the "1-minute tightening" episodes in the log for the AIIMS Delhi team.
*RECORDS REFERENCED*
📋 28M Epilepsy 20 years Bihar PaJR
🔗 https://pajrcasereporter.blogspot.com/ (Verify link in main record)
[8:50 pm, 08/04/2026] PPM 2: Please kindly share all his deidentified reports from all his previous hospital visits. Please make sure neither patient identifiers nor hospital or doctor names are shown.
[8:52 pm, 08/04/2026] PPM 2: @PA please give us a timeline of his medications. His entire history of medications taken and how each of the current anti epileptic drugs was started and dosed
[9:20 pm, 08/04/2026] PPM 1: Yes I wonder how did PaJR bot know and make a clinical note that he's on oxcarbamazepine when I couldn't find any treatment history shared here till now
[9:33 pm, 08/04/2026] PPM 2: Shop name ,Patanjali general store,
He takes medication of epilepsy such as Oxetol and fresium on daily basis from last 15yrs , if he takes gap anyday from that medicine than he suffer from frequent epilepsy. And some other medicine like Ampanel 6 mg is introduced from last 4 months as suggested by doctor from AIIMS Delhi
@PPM1 Sir here
[6:31 pm, 09/04/2026] PA: He has been eating this medicine since beginning same Oxetol and fresium without a day gap 2 times a day ,, and several other medicines was introduced by various other doctors but this was ongoing continuously ,as if anyday this medication was not taken than situation becomes out of control , on that day he has frequent seizures and can worsen
[6:32 pm, 09/04/2026] PA: I am not sure but at very beginning there was a medicine names valporub like something
[6:33 pm, 09/04/2026] PPM 2: Beginning means age 10?
[6:33 pm, 09/04/2026] PA: Yes 1 or 2 years later
[6:39 pm, 09/04/2026] PA: Answer to some questions ,,,
During the seizures if I take his name loudly he doesn't respond, he only respond when he is on recovering stage or when he has completely recovered.
Yes there are jerks also if seizure stay longer than 1 minute or 1:30 seconds
No it is not like 1-2 time episodes per day or hour,, it is not sure when seizures will arise ,, I mean to say that seizure is sometimes once in a week for 15 seconds or less, or sometimes once or twice in a day ,,like it is not measurable what is the quantity of seizure sometimes it can be 4 to 5 times a day also
[6:39 pm, 09/04/2026] PA: What I can do is I can note 3 to 5 days episodes if you agree
[6:39 pm, 09/04/2026] PA: So that it may help to diagnose
[10:01 pm, 09/04/2026] PPM 1: Yes that will be very useful. Please do
[8:33 pm, 16/04/2026] PA: Here's five days routine of his episode
[10:24 pm, 16/04/2026] PPM 1: Here's five days routine of his episode
What was he doing just before the episode that day and how was he the whole day after the episode?
Please share his daily hourly activities as shown here 👇
[11:29 pm, 16/04/2026] PPM 2: Good start and well done with the logging. In any seizure, the event before, during and after is ideally logged. If possible, a deidentified video during the event would be of great help - as we can also see the surroundings and can assess how this may trigger seizures
[6:39 am, 17/04/2026] PA: Sure
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