new and have N.E.A.D

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aimee

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hi all i am, new and i have N.E.A.D which is non epileptic attack dissorder i have seizures what are noyt epileptic its due to a traumatic event that happend in my life i am currently getting therpy for this but it just doesnt seem enough i keepo telling the docs its not working but they just dont seam to listen i am having 10/15 seizures a day at times its so stupid i hate it i just want my life back please if anyone kjnows about this or knows anyone wiyth this to speak up and talk to me about it really would like other peoples views on this thankyou very much aimee i keep getting told i am putting them on and they are p[hsuedo seizures but they are not i do not do this on purpous its an evil illness and i dont wish it on anyone
 
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Hi Aimee, welcome to CWE!

A number of folks here have struggled with PNES (Psychogenic Non-epileptic Seizures), which sounds like it's the equivalent to your diagnosis of N.E.A.D. Some people get both epileptic and non-epileptic seizures. As you've experienced, it can be hard to get people to understand that non-epileptic seizures are not "fake" seizures. I'm so sorry you have to deal with that ignorance on top of everything else. If you can, ask your doctor to print out a reference sheet, or provide you with a document or letter explaining what N.E.A.D. is, so that you can show it to the jerks out there who won't believe you.

Because N.E.A.D. or PNES is often triggered by trauma, the treatment involves therapy and occasionally medication. If your therapist isn't helping, perhaps you should try a different one -- sometimes it can take a while to get the right fit. Also there are different kinds of therapy to help with trauma, including Cognitive Behavioral Therapy, so it may be a matter of finding someone who specializes. You may also find that being proactive with your overall health can help -- making sure to get enough sleep, exercising, perhaps changing your diet.

You can search for info on specific topics here at CWE using the search tab at the top. You might want to search using "PNES" or "psychogenic", since those are the terms people have used in the past.

Best,
Nakamova
 
yeah pritty much same thing i am talking about it does my head in i got rushed to a&e and they were like shes putting it on she doesnt need to be here making me feel really bad and guilty for waisting their time i just duno wat to do maybe i should get a tattoo which says non epileptic attack dfissporder on lol i just duno ugh some docs are assholes they really are i give up
 
just so everuyone knows i do not FAKE THEASE FOR ATTENTION NOR DO I DO IT FOR FUN they just happen
 
Not to worry, folks here are very supportive, and know exactly what you're going through. We believe you! A lot of times, epileptic seizures are also dismissed as being "fake", and everyone here has had to struggle with skepticism or ignorance about their condition.

I hope you can get your seizures stabilized soon, so that ER trips aren't part of the picture. In the meantime, it sounds like it might be a good idea to carry your doctor's contact info, and/or a note about the NEAD so that emergency personnel can get filled-in. A bracelet or health emergency card might help too.
 
Faking a seizure is not as easy as it is for others to dismiss them as fakes. I had an ER doc tell me one time that a paitient we brought in the squad (I used to be an EMT) was faking because her bloodwork didn't match what he thought it should be.

I witnessed her having two of them. They were not fake. Even though the lady was having depression issues, the seizures were real. The progression and symptoms she had couldn't be faked.

Best of luck to you.
 
they kjust dpont want to understand oi think thats the problem i just done 3months on a phychatric unit after being sectioned for attempting to take my life it all got too mucvh and still is i am n0ow in a unit that deals with epilepsy and other brain dissorders so i guess i will get the help i need now
 
I hope you get the help you need aimee. Getting the right help can sometimes be half the battle. It's truly frustrating when you can't get your support team to listen the way you need them too. And part of that is that they need to beleive in you.

Sorry that you're having to go through this, it's rough, it's hard, there's no denying it. But things will change, better days will come. Don't give up, but allow yourself to step back when you can and need to.

I have epileptic seizures, not non-epileptic, but I've also had to deal with people disbelieving that I'm having a real problem.

"You don't really think it'd be a problem for you to lift that 200 pound machine right now do you?" Yeah, really. Unless you want to risk my dropping it on your foot. Yeah, I'm just faking this jerking and dropping things to get out of it.

Good grief people.

But I digress. *chuckles*

The forum community here is a good place to find alot of information and understanding. Please make yourself at home. :)
 
aimee said:
just so everuyone knows i do not FAKE THEASE FOR ATTENTION NOR DO I DO IT FOR FUN they just happen
Click to expand...

Welcome Aimee, I have NEAD, as well as epilepsy. Have a V-EEG to see if you have both. They are not a fake, do not worry about anyone thinking that here. I was only diagnosed with NEAD about 2 years ago. I have had epilepsy for 61 years. I may have had NEAD longer than 2 years. I cannot tell the difference between the different seizures when I am having them.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum. You will get the support you need here.
 
thankyou ruth ive had no ends of eeg and video ones too but they still convinced it is N.E.A.D i honestly dont know but the otherday i had one and i stopped breathing so i dont know what it is
 
Hi, Amy,

I am so sorry you are going through all this. I've read lots from the folks on here that have NEAD, and it sounds like some of them are getting some relief from meds.

Have you told your doctor that the talk therapy isn't enough? There are medications that he could give you that might help. They are generally different than the anti-seizure meds, and are more in the category of anti-anxiety or anti-depressants. It's worth asking to see if it might be the right thing for you and could give you some relief.

Maybe someone who is on those meds could add their two cents about whether they are helpful?
 
I was originally diagnosed with PNES (Psychogenic Non-Epileptic Seizures) and people thought I was faking it, too. I had one in my psychiatrist's office and he said "This is clearly attention-seeking, get into talk therapy right away." It was SOOO frustrating, because I CAN'T fake them for attention.

Turns out it was a misdiagnosis, but I know how it feels to be accused of faking it.

You could talk to your doctor about anti-anxiety medications such as Wellbutrin and Paxil. Those may help, along with the therapy.
 
Literophile said:
I was originally diagnosed with PNES (Psychogenic Non-Epileptic Seizures) and people thought I was faking it, too. I had one in my psychiatrist's office and he said "This is clearly attention-seeking, get into talk therapy right away." It was SOOO frustrating, because I CAN'T fake them for attention.

Turns out it was a misdiagnosis, but I know how it feels to be accused of faking it.

You could talk to your doctor about anti-anxiety medications such as Wellbutrin and Paxil. Those may help, along with the therapy.
Click to expand...

Sounds like the psychiatrist needed to see a shrink.

Some anti-anxiety medications can help, but be careful of Wellbutrin if you have epilepsy. It definitely can lower the seizure threshold.
 
Did the EEG's and V-EEG show up seizure activity? If your V-EEG did not show up any seizure activity, then you have NEAD. A doctor cannot tell with just an EEG. With epilepsy, you have to have a seizure during the EEG.

I have both NEAD, epilepsy and diabetes. I am on medicine for my epilepsy and it seems to help. I should go into therapy, it will help you. You will get support here.

The medicines I am on for my epilepsy are: lamictal, Neurontin, mysoline, Keppra and primidone.
 
hi yeah i am i had all tests but they showed nothing but people keep going on about me faking it i had a mnassive row today with a nurse as she said i was doing it for attention well hardly as i split my head open s9o yeah like hell i do it pourpously i give up i'm on sertraline for my depresshion PTSD and haloperidol seems to be kinda of working in making the voices stop and me feeling better still have seizures tho i just wish there were more they could do i am starting CBT soon thery just need to do 1 assessment b4 hand so i guess i have to just wait
 
I know you are not faking it. Who would want to fake it to get attention? Not me!! Are you hearing the voices because you damaged your brain in a really bad seizure?
 
Aimee,

I do not mean to sound dumb, but what do the initals PTSD stand for?
 
post traumatic stress dissorder (PTSD) i was raped so yeah i guess u will probs work it out
 
Hi Aimee,

You have had a tough life. PTSD is a trigger for NEAD. Sometimes, I have post traumatic stress disorder, just from living life. It causes a lot of my seizures. I just did not know what the initials stood for, but I know all about post traumatic stress disorder. You take care.

(((HUGS)))
 
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