concern

[allasmin]

Hello,
I've been doing alot of research on epilepsy, as one of my friends has epilepsy, but to be honest, the reason I've been researching, as I think that she may not have epilepsy, but instead munchausen syndrome.
No matter what is going on, i know she needs help, I just am honestly struggling with the fact that she may be faking the seizures and not getting the help she truly needs.. Every seizure incident, which she will have like 20 in a day that I believe are to be the grand mal type seizures, I didn't know if that was typical for someone to have that many? every incident involves her getting cut with glass from something, brusing her face, huge gashes in her tongue( I have heard people bite there tongue), but the last time I witnessed her having one, it seemed like she had been sitting there biting her tongue for several minutes before the seizure hit? I do know people can get hurt having a seizure, just that some of these injuries that are happening, just don't quite add up in logic. and almost every seizure she has involves some kind of blood. I do know that she was dismissed from one doctor who did call her out on this, and since then does have a new doctor. I just think its horrible to be faking something that people honestly go through in their lives.. and just really looking for some advise. I hope i have not offended anyone, that was not my intention. There is alot to this story. I'm just at a loss of what I'm supposed to do, and I hate dishonesty. thank you for your thoughts.

 

[Kaitybugsmom]

Welcome to CWE allasmin.

What a hard place for you to be in. This is my two cents....If your friend truely does suffer from munchausen syndrome you need to procede with caution as munchausen syndrom is a mental illness associated with severe emotional difficulties. How long has your friend been under the belief that they have epilepsy? Was it since the beginning of your friendship or was it something 'new' that popped up? Does she have another friend that does have epilepsy? Usually those who have munchausen pick up the disorder/disease or illness because they want to be treated like they have that particular illness. For the life of my I cant understand why somebody would want to pretend to have seizures but..... Regardless, whether she has epilepsy or munchausen she is going to need somebody to support her and truely be there for her. Remember munchausen is an illness all on its own and if that is what she has, I dont think she is being 'dishonest' on purpose so to speak, as it is real in her mind.

 

[Cint]

Hi allasmin and welcome to CWE,

It is great that you're watching out for your friend and know about Munchausen. If one dr. has already called her on this, then you are probably right on your suspicious beliefs. I have TC seizures, but never had 20 in one day. Two, maybe three at the most. I've ended up with bruises, black eyes, cuts, even burns, and don't always bite my tongue during a seizure.

One neurologist I used to see was thinking one of her patient's had Munchausen's, but I don't know what the treatment was. At that Epi-Care Center, we also had a neuro-psychiatrist who probably saw this patient, too. So, if you could, get your friend in to see a psychiatrist. Maybe start off by going in with her to the neurologist first and asking the neuro for a referral. Sounds like your friend does need a lot of therapy.
Good luck!

 

[Nakamova]

Hi allasmin,

If you think your friend has Munchausens here are some common signs to watch out for:

• Constantly changing their story.
• Being sick all of the time with a different illness.
• Begging for attention or asking for favors while sick.
• Seeming ill but then doing things that a sick person would not do, such as travel, party, and otherwise enjoy life.
• Understanding and being able to recite precise definitions of conditions.
• Medical scars and frequent medical bills.
• Previous problems with loved ones or family.
• Unwilling to share information with medical professionals so that treatment may be allowed.
• Disagreeing to see a therapist of any kind.
• Unwilling to take medication and try other treatment options.
• Changing their symptoms or disease conditions quickly from time to time.

I agree that 20 seizures in a day is very unlikely for the tonic-clonic (grand mal) variety. (There are other types of seizures that don't involve convulsions/loss of consciousness, and it can be possible to have many of these over the course of the day.) I've had quite a few tonic-clonics (never more than one in a day), and I haven't had the kinds of injuries you describe, or at least not to that extent. Just occasional tongue or cheek biting, and only once bloody from when I kicked a glass cabinet. More common is soreness or pulled or dislocated muscles. That doesn't mean that the kinds of injuries your friend is having don't ever occur, just that you may be right to be suspicious if other details aren't adding up.

These are some things that tend to happen with a grand mal seizure: At the moment the seizure starts there's often what sounds like a scream (it's a very sharp intake of air), and the head will twist to one side, before the person loses consciousness and starts convulsing. And usually right after a seizure, folks are very confused and out of it (they may not know where they are or what time of year it is or who is president), and they feel tired and a little nauseous. There's no memory of the seizure itself, and very little memory of the moments preceding it. Do any of these things occur with your friend's seizures?

There are seizure called psychogenic ones. They physically mimic epileptic seizures and are often associated with post-traumatic stress. They are "real" in that they are involuntary (unlike Munchausen's). Is it at all possible that your friend is having this kind of seizure?

Munchausens can also result from trauma -- often some sort of childhood abuse or neglect plays a role -- but the physical symptoms are deliberately induced. Treatment usually involves psychiatric care. You may find it very difficult to get your friend to take that step -- it won't work unless she's willing to seek treatment and accept the help that is being offered. Keep in mind that patients that don't wish to be treated can't be forcibly treated. You may need to enlist the help of friends and family in order to get her help, and even then it may well be out of your hands.

Best,
Nakamova

 

[allasmin]

the list above about Munchausens seems to really fit the bill.
My friend has not always had epilepsy, and her story as to how she got epilepsy, has been told to different people different things, ranging from car accident, an attack from someone, falling down the stairs,and a bat to the head..these were the different things that she has told different people, honestly I don't remember which one she told me, as I think she has told me more than one. I have never said anything to her about doubting her epilepsy, but am finding it more difficult, as her condition is affecting alot of people. She is and has been on alot of seizure medications, but she always seems to have some kind of bad reaction when the doctor tries a new one,, newest thing has been leaving her house at night, and walking around ending up in a creek, and not knowing how she got there.. I do know my friend was neglected and told on a regular basis as a child, that she wasn't important or loved, and her dad loved the other siblings but not her.. always made jokes about favorites. I appreciate being able to post on here and get some thoughts from people.
thanks so much!