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Thread: Siezures

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    Hi Mary,

    When you have time please let us know how Alan's been since you was intouch yesterday and do takecare yourself.

    Love Terry xxx

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    Hi Terry

    Thats them started dropping the phenytoin and so far so good no seizures they said the only way to prove its lupus attacking the brain is to do an MRI and he can't have an MRI because the stent in his heart has metal in it so thats that basically!!!!! They are also saying the seizures could've been brought on by STRESS!!!! IE: Alan not handling the lupus diagnosis but im sorry im not convinced STRESS could make a human turn like the EXORCIST!!!! I think as i've said before if this was simply down to stress I'd be the one having seizures not Alan but when I said that to the doctors they said "women handle and deal with stress better than men" wanted to hit him is that bad? lol!!!!!.
    Anyway they said so long as he doesn't have any seizures over the weekend he can go home on Monday and live a happy stress free life easier said than done eh!! Will continue to keep you posted on developments. Love M.x.

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    Hi Mary,

    I'm personally glad the phenytoin is being dropped as he does'nt need what i mentioned ontop, Alan as gone through alot.

    I do hope the seizures keep off and give him a break because that's a hell of a lot for his system with what he's been going through and it's such a shame they can't do an MRI because of his stent they'd soon find out what's going on.
    Well i've never come across anyone having seizures where stress as caused it but like i mentioned early if you do suffer with seizures and say your carm in yourself and someone as words with you or stress's your system that stress raises your electricity levels in your head and cells then you have seizures.

    Mary like i said and they've said you won't know if the Lupus as done anything to his head and i hope it never does but i will state this a large majority of children and adults can have a course of seizure's just like Alan and never have them again and so many have never found the reason why it's happened but i do know that Lupus can cause seizures as it caused me to have them and i never knew.

    I pray to god he does'nt have no more and if he's sent home..he's to rest and i hope you can talk to him and make him realize he can't afford to worry or stress himself because Lupus thrieves on these things besides depression and can makes symptoms worse.

    Thankyou so much for letting me know besides the member's, how things have gone and i really admire how you've spoken up with the doctor's as it shows full support as alot of family member's let doctor's just do what they want.

    Try and get as much rest as you possibly can yourself and my deepest thoughts are with you both.

    Hugs & Kisses to you both Love Terry xxxxxxx
    Last edited by Peridot20_Gem; 06-24-2011 at 04:19 AM.

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    Thanks Terry

    Latest development is they have diagnosed Alan with Pseudoseizures(non-epileptic seizures) they have changed their minds ONCE AGAIN and said that because his lupus looks as though its being "well managed" they are saying thats down to the mycophenolate so they changed their minds about the cyclophosamide and have put him back on mycophenolate (clutching at straws) in my opinion !!!!!!!!!!!!! They have however said the mycophenolate may have caused the seizures in the 1st place (where do they get off playing god with Alans life!!!) it p****s me off excuse my french .

    Love M.x.

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    Mary,

    Pseudoseizure's are psychological not neurological, so they think he's having these through a psychological reason.

    If they think the mycophenolate caused it why on earth are they sticking Alan back on it..i've never known nothing like it swapping and changing like mad.

    I'll add info below on the condition and add a link and i'll check to see if mycophenolate is ok with the diagnosis. Terry xxx

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    PSEUDOSEIZURES

    The term "pseudoseizures" describes events that appear on the surface to be seizures from epilepsy, but in patients who are not epileptic. Instead, these seizures are caused by abnormal psychology and as such are often thought of as a type of conversion disorder. Conversion disorders are conditions in which the patient suffers from symptoms of diseases that he does not actually have.

    General Seizure Description
    To understand what a pseudoseizure is, it is important to understand the general characteristics of a seizure. Seizures can take many forms, but in general they involve a sudden change in behavior, body function, sensation or movement. Seizures can range from a sudden and involuntary jerking of the limbs to a temporary loss of cognition and "freezing" during activities (known as a partial seizure).

    Pseudoseizures vs. Seizures
    The symptoms of a pseudoseizure are very similar to those of an epileptic seizure, except that their origin is psychological, not neurological. One of the characteristics of an epileptic seizure is that there is an abnormal discharge of electricity from the brain during the seizure. There is no such discharge during a pseudoseizure.

    Distinguishing Features
    Certain behaviors occur more commonly in pseudoseizures than in epileptic seizures. For example, a person having a pseudoseizure is more likely to bite the tip of her tongue (during a true seizure an epileptic's tongue goes limp and its tip is often inaccessible to her teeth). Other characteristics of a pseudoseizure include the seizure having a gradual onset, its duration lasting for two or more minutes, and the person shutting his eyes during the seizure. Pseduoseizures often involve the person's head moving from side to side, which rarely occurs in epileptic seizures.

    Diagnosis
    An electroencephalogram (EEG) can rule out epilepsy in a person experiencing pseudoseizures. This test involves attaching a series of electrodes to the patient's scalp to monitor her brain's electrical activity. As noted above, pseudoseizures lack the abnormal electrical activity characteristic of epileptic seizures. In addition, many epileptic seizures will result in the release of a hormone known as prolactin, which is present in the blood after the seizure. Pseudoseizures will not involve any subsequent rise in blood prolactin.

    Pseudoseizure Risk Factors
    Three-fourths of all people who suffer from pseudoseizures are women. Onset tends to occur in early adulthood or late in the teenage years. People who suffer from pseudoseizures generally also have other psychological disorders, such as major depression or an anxiety disorder. They also typically have a history of many undefined or poorly understood medical problems.

    Read more: Symptoms of Pseudoseizures | eHow.com http://www.ehow.com/about_5042490_sy...#ixzz1QCDFDgtf

    www.ehow.com › Diseases & Conditions

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    Quote Originally Posted by MaryS42 View Post
    Thanks Terry

    Latest development is they have diagnosed Alan with Pseudoseizures(non-epileptic seizures) they have changed their minds ONCE AGAIN and said that because his lupus looks as though its being "well managed" they are saying thats down to the mycophenolate so they changed their minds about the cyclophosamide and have put him back on mycophenolate (clutching at straws) in my opinion !!!!!!!!!!!!! They have however said the mycophenolate may have caused the seizures in the 1st place (where do they get off playing god with Alans life!!!) it p****s me off excuse my french .

    Love M.x.
    Mary, the medications used are Anticonvulsant drugs, Anti-depressents and sometimes councilling is needed and they're using mycophenolate because the drug rapidly suppresses and these drugs are used with Pseudoseizures. xxx
    Last edited by Peridot20_Gem; 06-24-2011 at 05:46 AM.

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    Quick update before I head back up to hospital Alan had 1st dose back on Mycophenolate this morning and yes you guessed it he's starting to shake again but hey they know best this pseudoseizures!!!!! He has dropped from 250mg phenytoin to 100mg overnight also is it just me or is it blatently obvious this is more than just a psycological problem or is it me I am the crazy one because I don't know anymore??????????????????????????????

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    Oh sweety I am keeping you in my thoughts. This is way too much going on! Keep us posted when you can
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by MaryS42 View Post
    Quick update before I head back up to hospital Alan had 1st dose back on Mycophenolate this morning and yes you guessed it he's starting to shake again but hey they know best this pseudoseizures!!!!! He has dropped from 250mg phenytoin to 100mg overnight also is it just me or is it blatently obvious this is more than just a psycological problem or is it me I am the crazy one because I don't know anymore??????????????????????????????
    Thanks mate for updating we quick before you rush off.
    By what you've said it's the Mycophenolate causing it and he was having seizures with that before they took him off it to move him to the other drug and now back onto it, it is used to suppress what seizures they've stated and mainly these Mary.

    Mycophenolate is used in the treatment of several different types of rheumatic disease, including systemic lupus erythematosus (SLE) and diseases in which there is inflammation of blood vessels ('vasculitis').

    Mycophenolate may also be used after organ transplantation, for example in kidney transplants.

    I'm sorry about this lot with Alan but they won't be able to diagnose without that MRI procedure, Mary try hard for a 2nd opinion and ask for Mr Tim betts of the QE, birmingham to be called in on it, there's no harm in trying.

    You ah crazy mate they just can't get it right and i'll wait to hear how Alan is and do it when your ready because of rushing about.

    All my love is with you both. Terry xxxxxxxxx
    Last edited by Peridot20_Gem; 06-24-2011 at 04:59 PM.

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