Childhood rheumatic fever and late onset Epilepsy

Resolved question:
My wife suffered from Rheumatic fever when aged 11 years old. It was misdiagnosed as tonsillitis and consequently she was hospitalised. After being in hospital for a few months, she developed Sydenham chorea and was isolated in a room upstairs, as her condition was upsetting other children in the ward. Her parents were told she would not survive, as she also had "rheumatic heart disease" (hole in valve) a year later she was released, although she had been very close to death at one stage… She was put on penicillin for the rest of her life, but was taken off it 20 years or so later. Within 2 - 3 years of coming off penicillin, she started having “episodes” which consisted of feeling dizzy/light-headed and nauseous, within minutes of this, would go to the bathroom and start vomiting and at the same time have diarrhoea, both being very watery dark brown with black bits in both, also with a vile smell, within a few minuets she would be sweating profusely and feel cold, then she would have a seizure, lasting several minutes. The sweating profusely and feeling cold would continue for several minutes after coming around. The vast majority of the episodes (99%) happened at night 2-5 hours after going to bed. It would be 3-7 days before feeling near normal again. This continued to happen (about 25 times) over the next 35 years with a frequency of 3-4 weeks to 3-4 years (usually several months) between events, despite frequent trips to the doctors and hospitals and numerous tests of every description, including MRI, scans and multiple blood checks, nothing was ever found to account for the “episodes” it was never suggested there was a connection between the episodes and Rheumatic fever, I feel there may be.
There does not appear to be a link between anything that was eaten and the episodes, also they began long before any medication was being taken. After spending hundreds of hours trying to find an answer but finding nothing that fits all the facts.

Extra notes.

1. Also suffers a degree of sleep apnoea, possibly contributing to the trigger?

2. Does not sleep well, 5-6 hours is a good night, most nights very broken sleep,
most likely cause, medications…

3. Also, possibility of gut flora creating enzymes and proteins causing nausea, vomiting, diarrhoea and seizure as enzyme activity is present.

4. Current medications: Micardis 40Mg daily (cancelled recently),
Losec Mups 20MG daily, Eltroxin 50Mg daily, Crestor 10Mg daily.

5. Fractured scull in m/cycle accident 1964, hit head getting into car 1978
very painful with post headaches for a week.

6. Suffers frequent throbbing headaches, takes Panadol.

7. Has good outgoing personality, no major hang-ups, psychogenetic basis is
highly unlikely due to it occurring during the night.







Facts to consider.

1. During the 20 years on penicillin there were no events involving vomiting, diarrhoea, seizures, cold profuse sweats and no other medications were being taken during this period,(aged 11yrs 31yrs).
2. No medications were being taken when the events first started and for several years after .
3. No apparent connection between any food eaten prior to the events and the event.
4. Did not have any stomach pain at any stage prior, during or after.
5. Feels very ill after coming around after the seizures, every event seemed to take it’s toll on well-being for several days after.
5. Remembers nothing about the seizure whatsoever.



I believe a possible cause is due to the immune response to a streptococci pyogenes bacteria or virus or similar infection, although I am not 100% certain, the vomiting, diarrhoea and profuse cold sweating are a response to something in the gut, the seizures are possibly a response to a by-product of the infection or a crossover immune system response affecting the heart and/or brain.



I am certain that Rheumatic fever sets the stage for many other inexplicable ailments later in life, the pathways for this do exist, due to the havoc created in the immune system and the inability to cope with streptococci infections…

Could this condition be classed as epilepsy?

Is there anything that would account for all the symptoms of the events?

Submitted: 4 Days
Category: Neurologist, Medical

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