Functional Neurological Disorder - FND Hope
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Non epileptic attack disorder

Hi I am wondering if anyone out there has just seizures. My husband only has seizures and it would be great to link up with someone else in the same position. Hope to hear back soon. Many thanks

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Non Epileptic Attack Disorder (NEAD) and Psychogenic Non Epileptic Seizure (PNES are the British and American terms, respectively, for what I've been going through for a few years now. At its worst, I looked like I was in a grand mal seizure for eight to nine hours a day. There was little to no help until I finally lucked into a doctor who accepted that I wasn't "faking" - although it always mystified me as to how they thought an out of shape man with a tummy in his late fifties could manage "faking" what looked like a grand mal seizure for eight to nine HOURS a day. I'd regularly challenge them to do the same. Strangely they didn't take me up on that challenge.

The one thing that would reliably stop the seizures was a benzodiazepine. Naturally, this being Mrka where DEA ideology runs medicine instead of science, docs are extremely reluctant to prescribe them. One cant really blame them, because if they prescribe what the DEA thinks is statistically, not medically, too many over the whole body of their practice the DEA will pull their dispensing privileges. So out of understandable fear they let their patients suffer in order to protect their own professional lives.

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The occasional benzodiazepine aside, sometimes over the counter antihistamines, if properly timed BEFORE a seizure takes hold, can lessen the attack.

The thing is to eliminate or greatly curtail stressors since that seems to be the only action we have to work with. Science has yet to explain the biological origin of the condition, and so we are left with treating as best we can, the psychological side.

Being told there's nothing wrong with you when you can clearly see that there IS something TERRIBLY wrong only increases the stress. It's important to point out to them that if they believe the condition is solely arising from stress, then consciously raising the patient's stress level would by definition be actionable malpractice.

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Hi

My main symptom is seizures - 2 to 3 per day. I used to have (and still have) attacks of complete unresponsiveness although I am not unconscious. My personal best to date is 5 hours. I have a new symptom - after a seizure I am left paralysed in the legs anything from a few hours to 24+. I'm writing this just having got my legs back after 2 hours. I am now going for a run on my treadmill and do my weights. Crazy I know but it's so annoying - and my husband just went off to work leaving me stuck in bed so I'm off to run off my anger. Since I mainly now have seizures he doesn't recognise that there are a multitude of presentations.

Oh forgot to say my seizures are uncontrollable bodily shakes, inability to speak or open my eyes. Sometimes they come with incredible pain.

It's all just so freaky and life changing.

Hang in there.

Lou

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Mine is mainly seizures and much less frequent now. I'm able to hold down a full time job

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Hi can you tell me more and how you are able to work full time please

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I have a very supportive boss who understands and doesn't overreact. I have a care plan in place. I am having ongoing psychotherapy and have long warning signs. To get to this point I really worked learning my own body sensations and triggers etc. I also read a lot and chatted on forums for any strategy which may help. I'm still very anxious and cannot do a lot outside of work but I'm getting stronger. Hope this helps xx

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Hi Swim-summer, my non epelectic seizures started after having neck straightened by a chiropractor in his car park, it took over a year to even find out that what I was having as have only known about epilepsy ones. I now know most of my triggers (I hope) Loud noises and too many at once (sensory overload) appointments because having to concentrate for too long, phone calls, sitting in car as am travel sick and always drove, I am sure there are others but have forgot, there seems to be no help from professionals other then they say avoid your triggers if you know what they are, I have 2 different ones. 1 is complete agony stuck rigid unable to move, talk, mouth contorted open, dribbling (bet I look scrumptious) the other 1 is I am so tired, can't keep eyes open, slowly head drops or always leans to my right and my breathing slowly stops, no pain with this one and my partner advised to just watch as when I become unconscious my brain will kick in and start my breathing again. This is all the advice I've been given in over 2 years. I wish you well and lots of luck. Lisa-anne.

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For the first 8 years I suffered from Myoclonic siezures and dystonia before even being diagnosed..10 years ago I was diagnosed with " Conversion disorder"...which has never made any sense where FND does...I underwent 60 experimental biofeedback sessions which stopped the movement but caused a host of other problems. Since then I've suffered from what can best be explained as dissociative siezures...I don't lose consciousness and have little movement but can't take much in..they usually last about 2 hours and seem to be set off by too much movement and sound

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