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NEAD

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david87617
david87617

My daughter has been diagnosed with NEAD. She has just had four seizures in three hours all lasting about five minutes. Does this happen too other people. Up to today the most she had had are two in eight hours.

1 like, 9 replies

9 Replies

  • levi03268
    levi03268 david87617

    Posted

    I personally do not have seizures at that rate. Though most people with these issues have completely different effects. I used to only have one every six months, now it is happenning every other week or so.

    Ask your daughter to tell you how she is feeling on these days. Does she feel them coming? I get the feeling like coffee jitters, or like blinking, but my entire brain blinks. Sometimes the feeling is more prevelant. When this feeling occurs, I take a low dosage of xanex. Which stops the seizure. My doctors are learning from me in this area. They said xanex does not stop seizures. I had to explain to them that it does, and that what I suffer from is not technically a seizure. It it more closely related to a panic attack, that looks almost exactly like a seizure.

    I pray for you and your daughter.

    If there are any other questions I can help you with, please don't hesitate to ask, no matter how personal.

  • mary50992
    mary50992 david87617

    Posted

    Dear David,

       There are thousands upon thousands of people around this big blue gem who are suffering from unexplain seizure. The word seizure means uncontrolled moments. Doctors do not know it all about the human brain or body. Nead is a easy label to pin on people . I had my first seizure after a heart scan. I sat up form the scanning table, felt dizzy, naseated and had two seizures. I came to on the floor with the doctor over me saying "I see all kinds of bizzare reactions".  I ended up in hospital because the seizures would not stop. Put on antiseizure drugs and sent to a seizure clinic. Label  "NEAD".  Damage done. I have seizures as they come. A month ago I had only one siezure. My seizures begin with a visual warning. I see lime green plusing patches and shortly after I have a tonic than a clonic. I'm not myself for days. Headachs and spaces. I'm happy I am not epilective. The side effects of the drugs are terrible to say the lest. I'm here for you. It is not only hard on the one having the seizure but also their caring love ones.  

    • levi03268
      levi03268 mary50992

      Posted

      That is not technically true. A seizure involves a synapse in the brain mis firing. NEAD, or PNES are more closely related to a panic attack or anxiety attack.

    • mary50992
      mary50992 levi03268

      Posted

      Dear Levi,

         The defintion of the word seisure is uncontroled movements. Neads are seizures not panick attacks. I have seen people have panick attacks. They are in a situation that they can't handle so it becomes fearful. My seizues put me right out of reality sudenly any where even during sleep. Clonic and tonic seisures are not panick attacks. Do more reading.

    • levi03268
      levi03268 mary50992

      Posted

      NEAD, non epileptic attack disorder.

      There is NO seizure involved. It looks exactly like a seizure, but is not technically a seizure. It will not register on an eeg. There is NO electric overload that causes them. The definition of seizure is- surge of electrical activity in the brain. Some times causing loss of consciousness or an epileptic fit.

      Mary I have been suffering from NEAD for 20 yrs. I have tried a neurologist, and many many doctors. Nothing showed up on an eeg, while I was having one of these seizures.

      My seizures involve total loss of consciousness, violent shaking, dislocated shoulders and massive confusion when I wake up from them.

      After 10 yrs of this problem, I witnessed a car wreck where three teenagers died. One in my arms. After the stress of that day hit me, two days after that accident I had another seizure. My doctor was amazed that a stressful situation had brought that on. So he prescribed me diazapam, xanex, which is an anti anxiety, stress medication. The next time I felt my seizure coming in I took a pill, it stopped the seizure from happening. For the first time I had an answer. Stress triggers my seizure. Which is not technically a seizure it is technically a panic attack, anxiety attack.

      You can try to explain this to me. You are absolutely 100% wrong. It is absolutely a panic attack. How these things manifest themselves in different people is beyond the understanding of most doctors.

      You would be the one who needs to read some more.

      Try a Google search.

      Look up PNES, OR the truth about psychogenic non epileptic seizures.

      Try learning from what it is truly called. By a neurologist who is teaching the entire medical field about what this really is.

      Then maybe you can notice your seizure coming and get on a medication that helps to stop them. I have, and it worked. As long as I take my meds in time I can stop these attacks.

    • levi03268
      levi03268 mary50992

      Posted

      Mary,

      I 're read my comment and realized it was a little rude. That in absolutely no way was my intention. I swear.

      I simply want to help people understand what they could possibly be dealing with.

      Not one single doctor I have been to understands this. I have been accused of lying, faking and just wanting drugs.

      Since I found that xanex stops my attacks I have been buying these drugs illegally.

      About two months ago I ran out and couldn't find anymore. So I went to the doctors office. I explained my situation, finally a doctor listened, she watched as she gave me a xanex pill, I stopped stuttering, and the seizure stopped right in front of her. Finally someone understood the issue. She was still skeptical, so she did some research. She came to the same conclusion that I did. Now she prescribes me the medicine I need. Even though she believes that it is not a seizure medicine.

      If you would like to talk, I may be able to help shed some light on your situation.

      There is much to this that, like I said, I have been dealing with for 20 yrs.

      Also it took me 10 yrs to realize that I could feel the seizure coming.

      I really think I may be able to help, and that is all I want to do. This is difficult to deal with, I know, but there is help out there.

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • mary50992
      mary50992 levi03268

      Posted

      Dear Levi,

         I had a seizure last Friday morning at 1:30am while in my sleep. My daughter heard painful cries and came running from her bed. I went into and out of tonic and clonic seizures. I had not had a seizure for 3 months. I feel for you with your suffering. The drug that you have found that helps for your seizures is a wonderful fine. I truly believe that their is a physical reason for my seizures. I never had a seizure in my life until I had a heart scan. They use a raidoactive material  injected into a vien for the test. Many people feel sick after wards in different ways and I had two seizures in a row. Now I have the physical weakness to have seizures. Of course I was label NEAD by doctors but that is their opions. I would not want to be on anti-seizure drugs with their terrible side effects. NEAD. The doctors tell you it is a tramic memory trying to resuface but if it was so bad of a memory it would of been there with the rest of the bad memoies in your mind. We can have some pretty bad ones. I hope that you are doing well?  

  • sophie40201
    sophie40201 david87617

    Posted

    hi david87617, this happenes to me too i'm 14 and three years ago i start to faint and fit now into three years i have been diagnosed with nead. I can have a attack everyday for about 2 hours it is very stressful. What you need to do is look after your daughter an be kind towards her this is the best way to help stop the attacks. 
  • debst82
    debst82 david87617

    Posted

    Hi David

    I have read your message and like the other messages have found that it has taken me years to understand my condition.

    I am 34 now and I started having seizures at the age of 21 after falling down marble stairs.

    Although doctors said I only had bruising this has led to my seizures.

    I have had CBT and psychological help and for a time the unknown caused extreme depression.

    4 years ago I woke up and had trouble with my eye and have permanent ptosis and muscle weakness in my right hand side of my face.

    I also get server migraine attacks as well.

    I now see a pain specialist who has just tried a nerve block either side in my obciptical nerves to try and see if lessening the migraines and pain would help cause less seizures but unfortunately this has not worked for me.

    I am in the UK so over here the doctors just give you epilepsy medication and anti depressants which do not help.

    I do now take duloxetine to help with the anxiety of being out side and I take amitryptyline for the pain but again this is not much help.

    I also get light sensitivity with my seizures due to my migraines so I have found limiting screen use, has helped massively I no longer watch TV, look at social media due to flashing news feeds, I don't watch fireworks and I avoid being in a vehicle at night, I also try and keep a very structured life and take my medication, eat and try and sleep at the same times, I find consistence is one of the majorly players with NEAD but if your daughter is anything like me she will either sleep for England or be an insomnic for days x

    I would love to hear a bit more please feel free to message me.

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