Mom's Life Long Struggle

[NJJami36]

Hello Everyone,

I have searched and can't seem to find much on what my mom dealt with all her life.

My mom passed away on December 3rd, 2012 at the age of 60. She induced two seizures that day, the second seems to have been the one that killed her.

She has been inducing seizures since the age of 4. Photosensitive/Sunflower syndrome. Sitting in sun blinking away. She did this to escape. A lot of the time she would think about the same thing over and over and over.
Inducing stress also over and over and over.
In the weeks leading up to her death, dad said she was almost constantly in the sun. Not always going full blown with a seizure though. There were a lot of highly stressful things happening and some involved her deepest fears.

I'd like to be pointed in the direction of stories from sufferers and/or family members. Medical information would also be useful.

Her last xray done a few months ago after my dad took her to the ER because she wasn't coming out of the seizure too well showed an undefined/blurry area.
Her memory, short term, had gotten really bad the last 8 months or so.
Could she have really killed herself by inducing so many seizures?

I thank you for your time and insight.

Warm regards,

 

[Chaz1]

Hello NJJami36,

I cannot offer support on your question, becasue I do not know..But I am so, so sorry for the loss of your Mother.

My Son 27 has E. if we are honest we all fear for our loved ones with Epilepsy. But we cannot live in fear.

I pray you will receive the answers to your questions, and some peace.
'
Warm welcome to CWE.

 

[jyearta]

I too am like Chase1, in that I have NO information on this subject.

I am truly sorry for the loss of your mother.

Welcome to CWE Keep asking questions either here or with her Dr. so that you will be able to understand.

 

[Cint]

Welcome NJJami36,

I send my condolences to you and your father after losing your mother under such a tragic circumstances. {{HUGS}} to you. Here is some info I found on self induced seizures/Photosensitive/sunflower syndrome. I hope it is helpful.

http://professionals.epilepsy.com/page/self_induced_seizures.html

Self-induction is a mode of seizure precipitation employed by entirely normal or mentally impaired patients to produce seizures for themselves. Maneuvers for self-induction aim to provoke a seizure by producing optimal conditions of stimulation by flickering light (self-induced photosensitive epilepsy), patterns (self-induced pattern-sensitive epilepsy), proprioceptive stimuli or higher brain functions (self-induced noogenic epilepsy).

Age of onset
Varies from infancy to mainly early childhood.

Sex
Female (70% to 80%) predominate.

Etiology
Unknown. It happens in both symptomatic and idiopathic cases of photosensitive epilepsy.

Clinical manifestations
Absences and myoclonic jerks are the most common seizures in self-induction. Generalized tonic-clonic seizures (GTCS), when they occur, are usually accidental events that were not desired. GTCS usually follow deliberately self-induced absences or jerks.

The objective of self-induced seizures is relief of tension and anxiety, and escape from a disturbing situation.

One particular strategy for self-induction in photosensitive epilepsy is to look at a bright light source, usually the sun, and voluntarily wave the abducted fingers in front of the eyes (sunflower syndrome) in order to produce optimal intermittent photic stimulation. Others do (1) repetitive opening and closing of the eyes or lateral or vertical rhythmic movements of the head in front of a bright light source; (2) make the television picture roll; (3) quickly change television channels while watching from a close distance; or (4) play video games.

Differential diagnosis
Tics but more often genuine ictal phenomena such as eyelid myoclonia or eye closures of occipital seizures.

Early forced eyelid blinking and flutter, eyelid jerks and oculoclonic activity may be ictal manifestations of the occipital lobes as documented with deep stereo- EEG recordings which may not show in surface EEG.

Eyelid blinking and gaze-fixation to light may be a normal ‘attraction movement’ when light is presented and other manifestations of the optic fixation reflexes when volitional movements of the eyes are unattainable or weak.

Blinking functions as a complex indicator of phasic responses to stress such as that produced by listening to emotionally laden words.

Management options
Avoidance of precipitating factors may be impossible for these patients whose objective is to self-induce seizures in order to achieve relief of tension and anxiety and escape of a disturbing situation. Therefore, self-induced seizures are difficult to control and may need psychiatric or behavioral intervention. On anecdotal evidence, fenfluramine (a serotonin releasing drug) has been recommended for the treatment of self-induced epilepsy mainly combined with valproate or levetiracetam if AEDs are needed (for patients who also have spontaneous seizures or continue with self-induction).

 

[CQ:)]

Hi NJJami36,
I'm sorry I don't have any advice but just wanted to welcome you to the forum & say how sorry I am for the loss of your Mum.