I'm 21 and I have Pseudo Seizures..

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Hi everyone. My name is Allison. For the past 3 years now, I've had pseudo seizures. They haven't been really bad up until this last month. I started having them at the age of 17 (almost 18) and my neurologist diagnosed me with them. I accepted it gladly because I thought, hey, maybe I'll grow out of these. So here I am now, 3 yrs later and now they are getting more frequent (as of last month) and longer in duration. Mine are really weird. I've started to punch people. I can hear everything that goes on around me for the most part. I go to see my neurologist again on Thursday. For now, I'm secluded to my couch and computer (where I go to college at Phoenix Online) and when Im even back here, Im constantly being called to see if I am conscious. My mom, uncle, and friend who is living with me for a short period of time are here to help me. I have seized in pools, showers, and in bathrooms where people have had to crawl underneath and unlock the door for my mom to access me. Yesterday was a doozy. I had a seizure for 2 hours in bed. The ambulance was called and I was taken only to be given another shot of Atavan and my Depakote levels checked. The ER knows me by name, and so do most of the area's life squad staff. I honestly don't know what to do. I'm so tired of being left to sit on the couch all the time. I'm tired of these seizures. They have put me in such depressions a couple times that I was commited to the Mental Health Unit. Tonight is the first night I have found any type of support program for seizures or pseudo seizures. Could someone please give me some advice?? I'm probably going in for a 2 week long EEG study and I dont know how Im going to do it with school. Im ready for this EEG and if they are willing to admit me the day they have the appointment, Ill go. I just need a laptop to borrow so I can keep up with school. Well I guess this takes care of what I wanted to say. Thanks. Allison

Comments

Re: Re: I'm 21 and I have Pseudo Seizures..

Submitted by Looking4AwayOut on Fri, 2006-12-01 - 15:47

They have put me on AED's and they do seem to work a little bit. I'm on Topamax and Depakote. I've had two EEG's done before. This one will just be a really long one.... two weeks long. It will cost my insurance $15,000 to do it, but hey, what can you say to something when you're desperate? They have gotten longer and more frequent.I'm so worn out because of all of this. Thanks for your care.

Re: Re: Re: I'm 21 and I have Pseudo Seizures..

Submitted by wldhrt13 on Sun, 2006-12-03 - 13:44

Allison, the other thing that occured to me, albeit a few days later, is that if you in any way feel uncomfortable with the diagnosis of pseudoseizures, or just plain don't have a good rapport with your neurologist, seek a second opinion. It certainly cannot hurt to get another set of neurologist's eyes and knowledge to look at your case. I would encourage anyone with a diagnosis of ANY disorder/disease to get a second opinion, because doctors are only human. They can and do make misdiagnosis. ~pamela

Re: I'm 21 and I have Pseudo Seizures..

Submitted by txrhb1 on Sun, 2006-12-03 - 14:32

Hi Allison, I'm so sorry to hear what you are going through, and I can certainly relate to it. My 23 year old daughter and I both have seizures. My daughter began to have them at age 9, but never had an abnormal EEG. On the other hand, I always had an abnormal EEG, so I was easier to diagnose. Over the years, it became increasingly difficult and frustrating trying to get my daughter the help that she needed. Eventually, all the neuros that we saw began to see her seizures as pseudo seizures. My daughter has been thru a lot of trauma in her life, and we were willing to accept that diagnosis and seek the proper treatment if there was some sort of proof to back it up. Instead of proof, the doctors kept increasing her meds to the point where she was very disabled from the side effects. About a month ago, I was finally able to get her in with a very highly regarded epileptologist here. He was wonderful from the beginning - listening to us and never discounting what we had to say. He had her admitted to the hospital a week ago for the long term monitoring you are discussing. The first nite (Friday), they took her off of her meds completely. By Saturday, it was obvious how drugged up she had been on the meds, and the doctor immediately said that at the least, he was going to change her meds. On Monday, she had 2 major seizures, almost identical to those she has suffered from over the past 14 years. Immediately, the doctor was able to diagnose her with temporal lobe epilepsy. It was such a wonderful feeling to have a clear diagnosis, one way or another. Many, many people have "normal" EEG's even when they are known to have epilepsy. Like my daughter, unless they are having a seizure while hooked up to an EEG, the brain wave patterns are entirely normal. This doctor did what no other doctor had done, and that was order the long term monitoring and stop her meds, in an effort to induce a seizure. Having a seizure while hooked up to the EEG is the best way to determine if the seizures are epileptic or non-epileptic. Even then however, some seizures originate so deep in the brain that the scalp electrodes can't pick them up. I only tell you this story to encourage you to have hope, and to proceed with the long term monitoring. Having it done for my daughter has made such a tremendous difference in how she feels, what meds she takes, and what our options are for treatment. Had she been diagnosed with pseudo seizures after the test, we would have been entirely comfortable seeking the appropriate counseling for treatment. I wish you all the best, and please keep us posted on how it goes. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo