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Myoclonal jerks and the pineal gland

Discussion in 'Researchers, students and professionals' started by Jon Harris, May 17, 2008.

  1. Jon Harris

    Jon Harris Registered User

    May 17, 2008
    South Croydon
    Dear All

    My wife, Connie has had Early Onset for the past 8 years or so, but over the last 3 years developed these atonic and tonic jerks. She is on both Memantine and Aricept. Last January she had full on seizure in the shower about 9.30am removing her humerus from the shoulder joint and crushing its head. She had major surgery which resulted in a new shoulder joint! She was then put on Sodium Valpreate, which was increased to 900mg per day,when the jerks got worse this year with her falling in a syncope kind of way. Because she was so restless at night I kept one or sometimes three lights on at night plus we would fall asleep on the chair and go to bed late and therefore had an odd pattern.

    So after another epileptic fit on the 1st April, thankfully no damage that time, I have been keeping a closer record and decided to make a major change to our nocturnal habits. I have this theory that the pineal gland is the gland that stimulates the body to go to sleep at night as it produces Melatonin.

    Now, a bit like the production of the flowering hormone Florigen in plants, I postulated that by keeping lights on I was preventing Connie producing melatonin naturally and therefore this probably triggers her jerks as they really only happen between 4.00am and 9.00am. So there had to be something happening at night or not.

    Since keeping Connie in darkness for the last fortnight she has had hardly any jerks between those times and has not even looked like dropping on the floor. I have a sensor beside the bed which switch es on the TV when she sits up or calls out. The Toby baby one way walki talki keeps me informed of what is happening when I am working downstairs.

    So does anybody else have the same experiences of jerks and epileptic fits with their loved ones and has anybody else done any research on the anti-convulsive properties of melatonin?? I have obviously done my own research on the net.

    Thanks for reading this far!!

    Jon Harris

    South Croydon
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Yes Jon, my Dad has the same jerks and they are quite often responsible for any falls he has. His happen to him all day long however so I don't know how your theory works for him. Some days they are worse than others, but we haven't been able to figure out what causes these off and on periods.
    Hate the jerks because they quite often seem to happen when Dad is getting excited about something or starting to stretch his wings feeling confidence that he can do something...and then he has the silly jerk and he looks quite miserable that he lost control (i.e. they will make him dribble when he was trying to say something, or make him almost fall when he is walking, and in the old days when he could hold a cup, make him spill his drink)and disappears back inside himself again. :(
    In fact the way they happen for Dad made us think that when he feels a surge of exuberance that it must release some chemical in his brain that sets them off. Its quite horrible really because its like the disease gives him a smack every time he thinks he can do something.
    Poor Dad, we're always talking about those horrible 'jerks' he probably thinks we are talking about people and wonders why the jerks are always picking on him!
  3. Jon Harris

    Jon Harris Registered User

    May 17, 2008
    South Croydon

    Is your father on Sodium Valproate? Connie had the same jerks as your Dad, during the day until last year when she was taken off Aricept and then she had the fit in the shower that did all the damage. She was then put on Sodium Valproate or Epilim...So in my view either

    a) being on Aricept and Memantine causes excess chemical transmitter in the synapse, although they work on different receptors of course an dthis causes the jerks


    b) Being in an interrupted light patern over night prevents Melatonin forming and that can also led to the jerks

    As we get older the body produces less and less melatonin and even less in people with dementia...Melatonin is definitely anticonvulsant.

    Solooking back I think Connie should have been on just Aricept and not both and on Sodium Valproate much earlier than she was.

    So what drugs is you Dad on now?

    email by the way is


    All the best

  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    #4 jc141265, May 25, 2008
    Last edited: May 25, 2008
    Hi Jon,
    Dad got put on Epilem when he started to have seizures. He was already jerking before that however on a regular and constant basis throughout the day, I haven't ever slept in the same room as him however so I am not sure about late at night, but Mum has never mentioned a problem with jerking then. He was on Aricept for many years but is no longer on it. His main two drugs now are Epilem and an anti-psychotic drug that dementia sufferers are not supposed to be put on, but nonetheless he was due to necessity at the time, Rispadel (or Risperadone).
    If anything we thought that the Epilem eased his jerking to a certain extent, but as we are tired of not knowing what is causing his symptoms the disease or the drugs we are currently reducing his dosage very slowly in each drug with the hopes of getting him off them completely if there are no negative reactions to this.
    I have heard that these jerks are caused by the brain in a response to it thinking the person is falling asleep, much like many of us jerk suddenly as we nod off. With the dementia patient or brain damaged person however this happens when they are not falling asleep, the brain just seems to think that they are. So in that melatonin is also necessary for sleep it is quite possible that there is a link. So good luck with your investigations I will be interested to hear if you work anything out. I have read also that melatonin can be precribed as a supplement??
    Here are some links I found:
  5. roman

    roman Registered User

    Aug 8, 2007
    #5 roman, Sep 6, 2008
    Last edited: Sep 6, 2008

    Hi! I was searching talking point as mum has had a lot of falls recently.I am looking for a pattern in the hope that I can find a cause.She is also on memantine.The senior in the care home asked the doc about the jerks as she thinks these are the reasons for the falls.However when I have been in the evening she is usually fine.During the last few days the jerks have got worse but carers say she is worse in the morning and she seems very tired.It was difficultfor her to drink because of jerking and she won't use spouted beaker.She has a lamp in her room on at night plus light in bathroom.I hadthought of blackout linings to as curtains thin.I have been looking at why jerks are worse sometimes and think it happens when very tired.Recently she has been very constipated which I think may keep her awake and gave senna.I have also wondered if deficiency in diet may cause it as she refuses Ensure a food supplement.She has broken both wrists on separate occasions and has had some nasty falls.This has affected her confidence.Doc says he can sedate her but this would make her more likely to fall? Any advice? I have just looked on some of websites listed in the last text and found the neurology reviews very useful (as its useful to have some research when speaking to managers at the care home).

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