Table 2. Clinical review – Seizure history, medication and subjective cognitive outcomes.
ID | Current Status | Current Age | No. of amnesic seizures | Treatment history | Dementia Diagnosis | Subjective cognitive complaints | Additional clinical notes | ||
---|---|---|---|---|---|---|---|---|---|
T1 | T2 | T3 | |||||||
1 | Living | 83 | 50 | 1 | 0 | Initial change from CBZ to LAM. No change from 1996 | No | At T1, ALF and patchy RA extending 30 years. At T2, reported ongoing memory concerns since onset, with more pronounced forgetting of new information. At T3, reported similar ongoing concern of fast forgetting of new information. | No significant concerns regarding cognition by medical team |
2 | Living | 71 | 10 | 0 | 0 | Treated on CBZ for 10 years; phased out in 2005 due to associated fatigue | No | At T1, RA extending 30 years. At T2, reports of ongoing concerns, with RA now extending 40 years. At T3, stable memory complains | No significant concerns regarding cognition by medical team. Participant reports “life has returned to near normal apart from the loss of part of my memory” |
3 | Deceased | 74 at death | 5 | nk (>1) | - | Treated with SVP for 2 years; topirmate added in 1997 when seizures recurred | No | At T1, RA extending 30 years. Died in 1999, 5 years prior to T2 follow up. | Cause of death was ruptured aortic aneurysm. Neuropsychological assessment 9 months prior to death showed average performances across tasks, with no evidence of decline. |
4 | Living | 87 | 5 | 1 | ?2 | 2009 one increase to dosage of LAM | No | At T1, ALF. No concerns of RA, although remote memories reported to be “less vivid”. At T2, ongoing memory concerns were reported. At T3, concerns of worsening memory | No significant concerns regarding cognition by medical team |
5 | unknown | unknown | Treated with CBZ. Effectiveness unknown. Lost to follow up | No | At T1, patchy amnesia for recent events. | unknown | |||
6 | Deceased | 89 at death | 15 | 0 | 0 | Treated with CBZ for 7 weeks but discontinued due to a rash. No further treatment | No | At T1, difficulties with day to day memory. At T2, reported no persistent memory difficulties | Cognitive impairments (poor memory) but no indication of dementia. Assessed by medical team 3 months prior to death. Dementia screening concluded “no major concerns about cognition”. Cause of death was pneumonia. |
7 | Deceased | 84 at death | 6 | 0 | - | Stable on Phenytoin | No | At T1, minor forgetfulness. At T2, reported no persisting memory difficulties | No cognitive difficulties noted and independent in activities of daily living on medical review 4 months prior to death. Cause of death was mesothelomia |
8 | Living | 81 | 6 | 0 | nk | Stable on SVP | Yes - VD | At T1, patchy RA extending 30 years, and poor day-to-day memory. At T2, reports of ongoing memory concerns since onset. Between T2 and T3, increased cognitive difficulty associated with CVAs. | Impaired cognition associated with Vascular Dementia (diagnosed in 2013). Multiple CVAs, resulting in cognitive impairments. |
9 | Deceased | 83 at death | 5 | ?1 | - | Stable on CBZ | No | At T1 patchy RA extending 25 years. At T2 reported ongoing memory concerns since onset, with additional fading recall of recent events | Died awaiting a second aortic valve replacement. No record of significant concerns regarding cognition by medical team |
10 | Living | 77 | ≥20 | 0 | ≥ 10 | Stable on CBZ until 2008 then multiple reductions in dosage required; 2014 changed AED (LEV) | No | At T1, ALF and patchy RA extending 10 years. At T2, reports of ongoing memory concerns since onset. Additional cognitive difficulty from 2008 onwards | Patient and family report significant difficulties with fatigue, attention and concentration |
CBZ = carbamazepine; LAM = lamotrigine; SVP = sodium valproate; LEV = leveteracitam; ALF = accelerated long-term forgetting; RA = retrograde amnesia; VD = Vascular Dementia; nk = not known