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Functional Attack Treatment

Discussion in 'Congregation of the Masses' started by Wyverii, Oct 2, 2008.

  1. Wyverii

    Wyverii "What I cannot create, I do not understand."
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    I've been diagnosed with Functional Attacks, also known as NEAD (Non Epileptic Attack Disorder) or by one of its more derogatory terms pesudoseizures. It's a term to cover a wide selection of different kinds of seizures that can be mistaken for epilepsy. Problem is after I finally got diagnosed after two years of faffing around i've been told that I can stop the seizures by recognizing the warning symptoms and heading it off before it can occur. I have over 90% of these in my sleep, how the hell am I supposed to follow this advice when i'm not even aware of how most of them start? So far my treatment has done nothing to help. My doctors also think i'm abused when i've got a helpful and supportive family, nor do I suffer from chronic stress or anything else they usually associate with this condition. I feel as if i'm being treated as if I was insane and though I couldn't really care less about what the doctors think of my mental state I do want to be taken seriously and I want these attacks to stop.

    My particular seizures start off with my hands clenching and my arms being pulled up to my chest where they're locked into place. At the same time I start breathing very rapidly. As the seizure goes on my legs will also lock into the position they're in and in particularly bad cases my back will arch and my breathing will stop for several minutes. When my breathing returns to normal i'll often start shaking uncontrollably whilst I wait for my limbs to unlock. I'm fully aware during the duration of these seizures if i'm awake. They're not life-threatening but they are painful. I can have up to 5-6 of these a week.

    What I want to know is if any of you guys have an opinion on this condition whether you suffer from it, know someone who does suffer from it or just know a bit about it. I know opinions vary wildly depending on country or even hospital. Guys suffering from epilepsy are welcome to share their experiences as well since the conditions are similar in terms of seizures.
  2. Neutral777

    Neutral777

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    I can understand how you feel about your doctors. I've had some psychological disorder that caused me to black out when I'd feel overwhelmed (exhaustion, hunger, stress, anger, depression) and while I wasn't consciously aware of what was happening, I'd be out doing things as if awake. Caused a lot of grief for my friends due to it.

    I never went to a doctor or anything because I knew that they'd treat me like I am crazy and stick me on some pills and crap to "help" me live with it. I've been living with it fine without the need for medication and the blackouts have pretty much ceased....

    difference is that obviously, my condition was psychological where yours is far more physically based. You probably can't do the same things I have done to live with what you are experiencing.

    I don't know how many doctors you've seen or are seeing but keep getting those other opinions. There has to be a doctor out there who has encountered your case and has found a way to address it to make it easier for you to cope.

    I think something needs to be done to assure the people that doctors aren't out to get your money. We have more treatments to shake a stick at but not that many cures. I don't know how most medical facilities work, and I think due to that I get this vibe that many doctors out there are after my money as opposed to helping me to be healed and capable.

    Again, I don't know many doctors and I do think that there are more doctors out there after well-being than money. I'd just like to have all doctors looking out for the well-being of others as opposed the money. It would probably help if they didn't fear getting slapped with lawsuits.

    Enough of my ranting/preaching.
  3. Wyverii

    Wyverii "What I cannot create, I do not understand."
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    Thanks for your response Neutral. I'm currently using the public health service so I know the doctors aren't out to get my money. I'd probably have far more success going private but I don't have the funds to pay for such care. Kudos to you for being able to take care of your problem without doctors shoving anti-stress medication at you.

    The current doctor I have is horrible. I think he's trying to make a name for himself by dealing with NES patients but whenever he finds something that disagrees with his original thoughts on the condition he ignores it and goes for the evidence that supports it instead. A prime example of this is when I told him I have most of these episodes in my sleep, he said behind my back that he suspected that I was lying and was aware during the start of every attack. He also said that if I want more tests he'll refuse to treat me so i'm going to tell him to shove his treatment where the sun doesn't shine and get more tests.

    I personally suspect that my condition may have something to do with a sleep disorder. I've been told that my breathing can be rather weird in my sleep and i'm constantly tired to the point where I sometimes fall asleep in class. The attacks also tend to become more frequent when the weather starts to get colder. Every one of these speculations have been ignored of course.
  4. Darkflagrance

    Darkflagrance

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    If you have an attack during your sleep, do you still feel it?
  5. 6rdfar90

    6rdfar90

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    From my first aid training... I was told that most of the attacks epileptic people may suffer are in their sleep... So, I presume (and supported by your evidence) that this is the case. The actual seizures sound a lot like epileptic seizures, or common fits that children may suffer in times of high temperature. Unfortunately, what im reading on a few sites now, is saying that the attacks do mostly happen around other people - indicating that they could be more likely to happen in times of stress, fear or embarassment possibly? I can see where your doctor is coming from using this type of evidence to support it, but as a doctor, he should be well aware that symptoms and conditions may vary greatly from person to person. Also, much of the evidence towards the cause of the seizures is unfortunately pointed again, at the family. IN NO WAY AM I BLAMING YOUR FAMILY, im just pointing out what current reserach shows. Further research indicates as I said above, that the attacks could be started from something traumatic previously in your life, or something trivial - a nightmare, dream, eating something nasty I dunno!!

    As for treatment, it seems based around psychological principles such as behavioural and cognitive therapy. However, a lot of these do go around trying to find out whether the attacks are *real* - e.g. Coming from a traumatic experience, or *fake* happening because of something trivial and you basically go into overdrive.
  6. Pyr0

    Pyr0

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    Try keeping a food log, every time you have a seizure write down what you ate that day. Over a course of some time try to find patterns, if you find none after a year or so, you can rule out food.

    Sure its not great, but most doctors work that way (giving you drugs to rule out stuff) this is just a "lite" version of what they do.
  7. Roy

    Roy sux
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    How do you control these attacks in school, for example?
  8. Wyverii

    Wyverii "What I cannot create, I do not understand."
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    Darkflagrance- I tend to wake up halfway through so yes.

    6rdfar90- I have problems with a lot of the psychological research they've made with this. Some doctors say that having attacks in the presence of people is indicative while others say the exact opposite. That doesn't sit well with me. It's not to say that my particular case is not psychologically caused, heck, it might be caused by severe SAD for all I know but ruling out any physical causes at this point could cause more harm then good in the long run.

    Pyr0- The frequency of the attacks alone shows that my diet is probably not a factor. Nice thought though.

    Roy- I've found no way to control them. Warning signs don't usually show up and I've had two attacks mid-sentence. I've tried many different methods during an attack to try and shorten the duration with little success so far. I do keep trying though and i'll be happy to take suggestions.

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