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Pseudo Seizures
Fri, 01/20/2006 - 13:47Topic: Women With Epilepsy
Hi there,
Im hoping someone out there can help me out.
I have just returned from the A & E Department of my local Hospital after being sent their by my GP due to my having 2-3 seizures a day and having a real bad headache down the left side of my head and weakness on my right side.
After being treated as what can only be described as a slab of meat I was told that I was having pseudo seizures to cover up my stress that I was under and that the medication I was on was enough to knock out a horse and that I was using these seizures to get out of situations.
I did try to assure the Doctor that I am not stressed and am just a normal 35 year old mother of two wonderful kids, who is happily married and works full time but all he said was that he was trying to give me the chance to "admit" that I knew I was doing this in order for him to help me further. When I assured him that I dont remember going into seizure and that this had been the case for 12 years he then said he couldnt help and that I would have to wait 7-8 weeks for a so called urgent referral. To say I feel totally disheartened and extremely upset would be an understatement and although I am waiting to see my GP on Tuesday and I dont know what to do now.
Any advice anyone can give would be really gratefully received.
Please help as I want my life back.
Star
xx
Comments
Re: Re: Pseudo Seizures
Submitted by starburst70 on Sun, 2006-01-22 - 10:41
Hiya Joey,
Well Ive got to say that it is a relief that I am not the only one out here that feels as if I have been accused of having or faking "pseudo seizures".
I came out of the hospital feeling like a total fraud and was so hurt when the Doc said to me that he was giving me "my chance" to "admit" that these were'nt true seizures and that I was having them "to escape situations I wasnt happy in or had got myself into". He even told the on call Neurologist that they were pseudo seizures and that my urgent referral should be downgraded to a normal one so instead of waiting 2 weeks I am now looking at an 8 week wait and then went onto say that he couldnt understand why I was getting so upset as he was only making a suggestion and that he could see how upset I was getting as the monitors I was hooked up to showed an increase in my blood pressure, heart rate and respiratory rate and was I certain there was nothing I wanted to say about these.
My hubby was absolutely livid and it did make me think about coming off meds to see what would happen or if the seizures improved as I do worry that the high dose meds that I am on (2000mg epilim and 400mg phenytoin) is maybe causing the seizures to occur more frequently as I have been told that too much meds can be as bad as not enough.
But it does make me wonder how these Docs have managed to get qualified as their bedside manner is appalling in some cases and to even plant the idea in my head that I had other issues that needing dealing with and that I was basically wasting their time made me feel so low - Im still struggling to get my thinking straight as to what action to take but think I will just wait until I see my Doc on Tuesday morning. But I just cant seem to shake how low I feel at the moment and that it isnt fair on my hubby and kids and Im either snapping their heads of, asleep, having seizures or crying at the drop of a hat - I just dont feel like me anymore if that makes sense.
Dont get me wrong Joey, I have had issues in the past and only lost my dad in August of last year after a long illness but am genuinely frightened to go to the ER/A&E Dept or to a consultant incase the same thing happens again as I know my husband wont deal with it as well next time.
I appreciate what you are saying and it was such a big relief to know that someone else had been through it but any advice on how I go from here would be greatly appreciated.
Speak soon and take care
Star
Re: Pseudo Seizures
Submitted by txrhb1 on Mon, 2006-01-23 - 01:40
Hi Star,
Geez - you sure ran into a "jerk" of a doctor !! I am so sorry you were made to feel that way. Can you tell us what tests were run, and how this idiot came about this diagnosis? Maybe after knowing what has already been done, we can make some suggestions on further exploring what is really going on.
There are "pseudo seizures", but they are in no way "purposeful acts" done to get out of dealing with situations. You should never have been treated that way by that so-called-doctor, and I can't imagine how low that made you feel.
i am glad you posted on this forum. There are many wonderful and caring folks here, who are always willing to reach out an lend a supportive arm.
((( hugs ))),
Barbie
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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo
Re: Pseudo Seizures
Submitted by joey77 on Fri, 2006-01-20 - 16:56
Hi Star, I know exactly how frustrated you must be feeling. Having had epilepsy for 21 years, i was generally well-controlled for about 10 years and then began having lots of seizures. My neuro started medication dosage adjustments and then the fun really started, introducing new meds, new side-effects and different combos of meds. I was getting on a greater and greater amount of meds, but was still having seizures and that's when my neuro brought up the possibility of pseudo-seizures. I want to stress that from my understanding (the way it was explained to me by my neuro) pseudo-seizures are still seizures, they just do not have a medical trigger, but have a psychological trigger. In my case it was a whole lot of childhood family drama stuff that i had not yet dealt with. Pseudo-seizures have certain similarities to "real" seizures, but there are also differences, such as increasing frequency, not responding to medication despite increases and often can be very long in duration. Sorry i can't remember more detail about it, but that was about 5 years ago. The initial manifestation will often appear the same and we don't remember the onset, they may not be medically induced but most of us would still not choose to do this to ourselves. However, to make matters more difficult, i was also continuing to have "real" seizures triggered by my identified triggers, such as flashing lights, chemical smells, etc. Therefore, we had to keep playing with meds to try to get those under control while i had to deal with all the family stuff. There is an end in sight, though! I am now relatively well-controlled with approximately 1 seizure each 2-3 months, and for the past 2 years, they have all had identifiable triggers. Meds have been stable for about that long, as well. I don't know if this will help you and i'm not saying you have any unresolved stuff that's causing this. But I know i felt like i was the only one who had ever been "accused" of pseudo-seizures so i hope it helps to know that you're not alone. I feel also that pseudo-seizures are presented by some as people faking it, when in fact that's not the case. Good luck, and just get through one day at a time!!! Joey