Pseudoseizures?

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Am I mad!!! I think the nurse don't believe me!! well I cant remember a thing from these and now I may have lost my job due to this!!!! I work within the NHS and have been diagnosed epileptic for nearly 21 years but last July I had a status epileticus and ended up in ITU but since then every seizure I have had they have been non epileptic seizures no one believes me!! now I have an appointment with the Metal Health Department truley crazey!!! Normally I am fit and well do not suffer from anxiety of have a personality disorder or in the need to seek attention!

I must be mad!!!

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  • Posted

    Hi Sharan,

    I have just read about your experience and i know exately how you feel. I was diagnosed with Pseudoseizures (i have researched this word and it is the wrong term for the condition i suffer from.) when i was 18 i am now 24. Many of the doctors i went to see told me to my face i was faking them to get attention. The nurses at both monklands hospital and the southern general in glasgow were rude and didn't believe i was having these convulsions. It is not in my nature to lie or fake things for attention. I don't want attention off anyone. I am happy with my life then and now. With more research into my condition they found that i suffer from both epileptic and non epileptic attacks. So basically they can't tell one from the other so i have no medication to help me, because they believe it wouldn't help. I don't want to be on medication for them anyway. I would rather help myself naturally. I know how you feel sharan when no one believes you, or they just don't want to know. My condition is brought on by stress. With this condition i don't just have serzuires other things happen too. Extremely painful headaches, blackouts, lip smacking, uncontrolled movements, pins and needless in my limbs, confusion, Hearing and sight difficulties and my speech can be impaired for a short space of time. Type in non epilpetic attack disorder. Read the webpages and you will see that in most of them they prefere to use the term non epilpetic attack disorder and not Pseudoseizures. There are 3,000 people in america that suffer from this condition and many people in britain are getting diagnosed with the same thing. I believe that if they can't find why you are having sezuires they automatically say your faking it. I believe you Sharan for i am going through the exate same thing as you.

    There are people suffering from what we are. We are not alone and you are certainly not alone or going mad.

    If i was you i would go for a second opition.

    Hope reading my experience has helped

    xangeleyes1983x

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    • Posted

      I have been have been having seizures on and off for over 3 years now.  The doctors have no idea why I have them.  They have run tests and can't find anything wrong with me.  They have been getting worse and lasting longer.  They have started to cause problems with my speech and my ability to walk after.  My primary care physician sent me to the emergency room yesterday to see a neurologist and they told my that they were pseudoseizures...basically said they weren't real.  They said I needed to learn how to control my anxiety and go to a psychologist and get some anxiety medication.  They didn't do any brain scans or any testing whatsoever.  They looked at my eyes and checked my reflexes and watched a video of me having one, which my doctor told me to video.  I had one while I was in the ER.  No one came in to check on me.  No one came to make sure I was okay.  No one came into check my vitals or anything.  They found out I was taking medicine for Depression which I have been taking since I had my 3rd child for Post Partum and that was the extent of their inquiries into anything.  They said my movements were uncharacteristic of any normal movement disorder so I obvisouly didn't have any of them.  They disregarded the fact that I had headaches, numbness in my extremities, impaired speech, a stiff neck, and basically every other symptom.  I don't have a stressful event that I am hiding from.  I don't feel high levels of stress when the events occur.  I can feel them coming on...the aura, if you you will...my legs start to tingle, my head starts to throb and my eyes begin to hurt.  But they wrote me off.  Told me to see a psych doctor and go get counseling.  How can they in good conscious do that without running any tests whatsever?  I am not nuts and that is exactly how they made me feel.
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    • Posted

      I know the feeling. After 15 yrs of these psychogenic seizures, I thought myself how to control them in part.

      There is a doctor in Chicago that understands this issue and has been working hard to educate others about it.

      It is called PNES, psychogenic non epileptic seizures. The thing is stress, anxiety, ptsd can trigger these episodes.

      When I feel that aura come on in the morning, I have found that a xanex pill will stop me from having the seizure.

      This past week I took my pill, but because I was running out of those pills I only took half of that pill, I wound up having the seizure and woke up in a hospital a long way from home. The doctors there treated me like sh*t. They tried to discharge me because I wouldn't do what they told me to do. But considering I had a bad head injury and concussion, I should not have been released. Even now, a week later, I am still having issues with memory and sleeping.

      You might try using an anti anxiety drug or valium to stop these episodes. Some doctors will listen. Just Google PNES, print it out and show several docs until you find one that will listen.

      It's a tough road, but you can find someone who understands this issue.

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  • Posted

    i know how you feel i'm 16 now and started having these convulsions when i was 13. of course i had all the test, they found nothing. so i was given a phycologist. my mum and dad think i'm putting on for attention but why would i do that. thats what it all falls back to attention seeking. i have falllen out with them many times and now i am stating to lose my friends because of it. the other day i fell down some stairs and it hurt, then i went in to these convulsion things. one thing people have noted is i go very pale and cold on the hands. i cant talk to anyone about it because they just wont understand, because not even i do.

    lamorna

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  • Posted

    Hi,

    My partner suffers from Non-Epileptic Attack Disorder, we have look all over the Internet trying to find others who have the same condition but cannot find anyone!

    So we have started our own Internet forum i'm not able to post a link so if you google search nead.webs you should find it.

    The forum is basically to allow NEAD suffers to talk to other suffers and to let everybody know that they are not alone in this?

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  • Posted

    hi everyone thank you for writing your experiences down at last i've stopped feeling like a freak! i've been having seizures for just under a year they started when i started medication for rhumatoid artheritis (methatrexate) i stopped the medication in under a month but the seizures carried on most but not all my seizures happen as i wake my body feels weightless but tingly then even the slightest movement starts my body off shaking violently i've hurt my hands many times where they have hit my headboard and bedside unit i'm fully aware of whats happening but can't move away from the danger i've also ended up face down in my pillow !my speach goes ga ga and my memory is beeing destroyed! i've had a few when i've been out and about and people look at me like i'm mad which upsets my children ( ages 8 12 13) so now i avoid going out if i can i've had 2 EEG'S which showed problems in my left temperal lobe and a few other areas but because most of my seizures are movement related last time i saw my neurologist the word psuedoseizures was mentioned straight away i felt like a freak again i'm waiting to have a video EEG done sorry if i've gone on a bit but i hope this helps others we are not freaks or mad BUT WE NEED MORE PUBLICITY.
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    • Posted

      Wouldn't it be nice if there was a set of docs who knew everything? I've been dignosed with epilepsy. I supposedly had this when I was about 5 to 10 yes old. It went away and came back after I had my 3rd kid. I think I was 30 yrs old. I would have seizures for about 2 weeks every other month. Then it became where I said them for about 3 weeks every other month. This was 12 yrs ago. Three yrs ago they changed and now I have them every three months. Pretty much the same pattern. I take tegratol but nothing works. I've tried all meds throughout the yrs. I have major stress in my life and thyroid probs. I've always said that it was either stress or hormones causingvthese now and then. NO DOC CAN FIGURE OUT ANYTHING! I go to a seizure specialist. I do acupuncture once a week. I have lesions on both sides of my brain....6 yrs ago. DOC said that Dhabi have seizures and I will always have the lesions. Well, took another MRI and no lesions!!! THANK YOU GOD!! I also research and look and dig on everything I can think of that might give me info about anything. The way mine always follows a pattern is what stumps me and docs. Does anyone a else experience patterns??? Any info anyone might have would be great. And I'm more than happy to tell the vitamin and minerals and so forth that I believe has helped me. Sorry for any auto corrects!

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    • Posted

      Hi, I'm just wondering if any health care professionals acknowledged the methotrexate as the cause of you non epileptic seizures? Exactly the same thing has happened to my 13yr old daughter who started methotrexate injections 2 mths ago

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  • Posted

    Hi Guys,

    Were a UK Reg charity for sufferers of this condition, family and carers

    But as this condition is world wide we support everybody.

    our website offers up-to-date information

    secure member only forum

    downloads

    medical advise panal (doctors who are experts in this field)

    google nead trust

    we are here for you

    [color=green:2b2db9961c][size=9:2b2db9961c][i:2b2db9961c][b:2b2db9961c](If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/b:2b2db9961c] [/i:2b2db9961c][/size:2b2db9961c][/color:2b2db9961c]

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  • Posted

    Hi

    I have left you a lengthy post under NEAD 9th November.

    Wishing you all the best.

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  • Posted

    I am horrified that victims of abuse and childhood abuse are rating others experiences of the abuse and it's long term effects.

    I feel we should be supporting each other and not attacking each other in this way. All opinions should be respected and welcomed as opinions and a way of helping victims deal with the effects of childhood abuse.

    I feel deeply saddened that one of us is in so much pain that they feel that they need to rate the survivors that stand with them and cannot reach out and express that pain, realising that an opinion is just an opinion. We as survivors are in control of our lives now and as individuals we all deal with our difficulties in our own way.

    I'd be interested to know how other victims feel about this rating system of such a sensitive issue. Is 7/10 and 9/10 a comment on the worth of an experience of interpersonal violence?

    Best wishes to you all.

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  • Posted

    Hello I MUST BE MAD,

    I can certainly EMPATHIZE with you........ I am 46, and have been experienceing these MISDIAGNOSED "Seizure Episodes" for approx. 9 yrs now; and have seen probably 20 doctors already since then, and been put on and off of at least 4 different *unsuccessful" seizure meds & anxiety meds...   WE ARE NOT MAD AND WE ARE NOT CRAZY. These EPISODES are VERY REAL; i just think the Docs are not educated enough about them..... but i think it is EXTREMELY UNPROFESSIONAL for a Medical person to tell you u are FAKING IT!!   But, PLEASE BE ENCOURAGED.......GOD knows what we are going through, and I have received ALOT of prayer for this CONDITION, and I know & trust that some day GOD will give the docs the answers they need to correctly diagnose our condition & therefore come up with a SUITABLE TREATMENT PLAN. but PLEASE DO NOT GIVE UP TRYING TO GET HELP FOR IT.......... I have applied for disability 3 times in 6 yrs and been denied 3 times, and am ready to APPLY AGAIN with new doctors in the 3rd state now.   SO..........GOD BLESS YOU and hang in there friend.   DARLENE

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  • Posted

    I have pseudoseizures also. It is very difficult as I don't feel I have anxiety and depression either. They are truly real. And you can't worry about what other people think about them. I'm advised to have cognitive behavior therapy and see a psychiatrist. Mine have only been for about nine months so I can understand somewhat.
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  • Posted

    No, your not mad.

    The fact is That doctors do not understand this issue.

    Look up PNES. Psychogenic non epileptic seizures.

    Also known as stress induced epilepsy.

    Personally, I use a low dose of xanex to stop these seizures. It took me 15 yrs to get a doctor to understand this issue and prescribe the xanex for me.

    The mental health care can actually help with these seizures. They can be caused by stress, anxiety, or ptsd.

    You may be like me and do not feel stressed or anxious, but that does not matter.

    I personally believe that my brain just likes to over think everything and never stops, and that is the issue.

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  • Posted

    No you are not mad. It is a difficult issue to understand for most people including the medical profession in my experience.
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